Food intolerance - PLEASE help

[ra2commando]

Hi, thanks for the quick reply. Sorry forgot respond with regard to travel. I havent been outside North America in about 12 years. I only traveled in Canada in Ontario for work.

Small update - I had a gastroscopy, and the gastroenterologist said it looks fine, pending biopsy analysis. I also asked him to refer me to a dietitian as well. Other than that he said that unfortunately he cannot help me with food intolerance and told me I should see an allergist/endocrinologist/etc. I understood that he at least believes in it, but what disappointed me is that he said there is no way to treat it.
Also on the upside my blood pressure seems to have increased to normal level- 120/70, but the pulse is still weirdly low at 43-45.

Regarding how long I was taking those supps - some longer than others. Probiotics for about 1 year. Glutamine on and off the past year, nac and zinc for 3 months. All else very recently, about 2 months. Also a week ago I picked up a product that contains DGL, marshmallow root and slippery elm, supposedly good for the stomach inflammation, but I guess since gastroenterologist said my gut looks fine that was a waste of money. Kind of hard to tell if anything is helping or not, except that certain supps I used to take made me feel worse, like calcium citrate, coq10, and different multivitamins (tried Adam, Centrum, some multi for women just for fun, but got rashes). I think it may have been brand specific as I kept trying different things, and the multi from Vitacost seems to be OK, just started recently.


Thanks for the info regarding parasites. I read people's descriptions, but I think the one common thing with parasites is that most people had weight loss. I on the other hand (and this I find really annoying) have gained about 6 lb in the past couple of weeks on average of 2000 cal / day (and I don't doubt the accuracy of my measurements). In fact I am developing a roll of fat around my stomach and back that I never seen before, even at that weight. Not sure why this is, when I last check thyroid it was fine. While I had some weight loss about 6 months ago after my injuries, I thought that with parasites, this would still continue? IDK I still would like to do this test if it might help.

edit: also forgot that most common symptoms seem to be diarrhea, while constipation (which I have, despite taking >35bn cfu of probiotics) is rarer.

[KLMARB]

Sorry to hear I know how frustrating these problems are. The fact that foods are seemingly coming in and out of focus is curious, there are a number of things that could be the cause but without more clarity it's hard to know. To that end I would still recommend seeing a dietitian who can do a thorough diet assessment both from your history and a prospective one to track what's going on.

Well not really a whacky list of supplements you got there, you've done some good detective work but yes most definitely expensive. How long have you been taking them??

Also, I have one last potential avenue for you to consider - that being the possibility of parasitic infection. The stool test is a good idea, but there are two bugs in particular that are coming to mind, those being Blastocystis hominis and Dientamoeba fragilis. These are two extremely nasty and pervasive parasites that produce symptoms that mimic IBS (and are therefore usually diagnosed as such). This was the reason I was asking about history of food poisoning during travel etc., which is how the bugs are usually contracted (but not necessarily so). The other problem with these bugs are that they are notoriously hard to get rid of - I've had experience with people who've been diagnosed as having "IBS", only to find out that they tested positive for these bugs up to 5 years beforehand.

Do a quick internet search and you can get more information, but the best resource is this website: http://www.badbugs.org/index.html. Read stories of other people who've been positively diagnosed and see if your symptoms fit the bill. Again, not to suggest that this is definitely the case, but you may be a candidate. Another word of caution, these bugs are also notoriously hard to test for - however I think testing methodology is starting to come up to speed now that awareness of these parasites is growing. But look around for diagnostic centres that specifically test for these bugs (I think all stool samples need to be done in fixative to effectively test for them), and also potentially for other parasites. It may even be worth doing multiple tests just to make sure, the stories I've seen suggest these bugs don't like to be picked up! But I can't stress enough that the doctors and diagnostic centres NEED to be experienced in testing for these parasites otherwise you run the risk of getting false negative tests. If absolutely 100% necessary, there is a centre here in Aus that led the way in testing for these bugs and they can liaise with your doctor and provide the necessary meds if s/he doesn't have a treatment option. Their website is here (http://www.cdd.com.au/)

Hopefully some of this advice helps you out and you can get to the bottom of this. Good luck!

EDIT: sorry forgot to add although it probably goes without saying, there will be additional cost involved with getting help from the CDD

Excellent point Gradman, this is beginning to remind me of a friend who picked up a nasty parasite in Korea, 24 years ago...

[Gradman]

I'll be interested to see the biopsy analysis, and it's important to be aware that certain parasites can escape detection via a scope alone. Also just for the sake of clarification, travel is not a requisite for infection by any type of gastrointestinal parasite, it's just a very common thing to see. And also for whatever reason people seem to put travel illness in the back of their mind relative to "home" illnesses. Not sure why, but it's always worth jogging the memory in case something comes back.

Also take note that those are only two potential candidates. The symptoms while common among people do differ for those individual bugs, but there are others to consider, I mention those two again because they are common and as such they are commonly missed and you get a diagnosis of "IBS, and sorry we can't do anything about it". But there are other potential candidates as well that should be discussed. Not to say I definitely think it's the cause, but with cases such as yours it pays to be absolutely thorough. I can promise you nothing is more frustrating then doing a full elimination diet + challenge and nothing turning up or symptoms coming and going seemingly without reason because there is a different underlying cause that has been missed.

That being said, hopefully your dietitian and endo can sort you out. I'd ask the dietitian to examine patterns of symptoms around fermentable carbohydrates (FODMAPs as mentioned by Emma), because there is evidence in the literature that certain parasites that can cause these symptoms work synergistically with certain types of gut flora. Excess fermentable CHO --> proliferation --> episode of symptoms, that's how it usually goes in those cases. However one method for counteracting excessive proliferation, especially higher up in the small intestine is to take betaine HCl, which are doing. I'd be curious to see what happens when you don't have it - specifically I'd be looking for symptoms of GERD.

Another thing that's worth pointing out is that symptoms can either worsen or improve with probiotics, I suspect because of proliferation of different colonies being able to synergise with different strains of pathogens. Just a guess. And of the weight gain vs. weight loss you mention, yeah the weight loss is usually due to two things - malabsorption leading to diarrhoea which then just causes people to eat less out of fear.

As for your weight gain, I'm not sure about that. You mention that it's been the last couple of weeks and you've got noticeable fat gain but I didn't see dates on your bloodwork, how recent is it?? Are those panels free to get done there? If so I'd suggest going and getting another - just to be sure. I know it sucks having to get all these tests but your tenacity in finding a solution to this problem is a very handy thing to have.

Excellent point Gradman, this is beginning to remind me of a friend who picked up a nasty parasite in Korea, 24 years ago...

Yep it's quite amazing really. But 24 years is something else... amazingly it's been disregarded as a legit aetiology for IBS until fairly recently. And so unfortunate for your friend who (I assume?) still endures symptoms decades later. Still no cure but ways to minimise impact.

[KLMARB]

Alas, a friend I've lost touch with over the years. He was responding to treatment, (the Docs were fairly confident they had eradicated it) when last I talked to him..

[KLMARB]

Here's a show to watch, it's fascinating, and will scare the crap (nearly literally) out of you...http://www.yidio.com/show/monsters-inside-me

[brometheus55]

eliminate gmo foods, processed foods, msg, soy, hfcs, aspartame and other fake sweeteners

[ra2commando]

Ughh…

This seems to be getting worse. Sorry for the lack of updates, I had a horrendous time. I ended up going to the ER after I felt like my heart stopped, but let me start from the beginning.

First – thanks very much for the detailed input here, I really appreciate it.

RE: weight gain – when I happened to mention this to a family member, they reasonably pointed out that 8lb weight gain in under 2 weeks is most likely water. I also noted that the “fat” seemed to be accumulating around the waist. On Sunday I noticed that the fat around the back accumulated so much it looked like a hump or a pillow, very hard to miss, and I could distinctly feel it. I called a doc (in family) – she said to press on this hump and depress – this left an indent. I also recently mentioned that I had an episode of arrhythmia/palpitations that lasted about 1-2 mins. She told me to go see my GP asap since she thought this was due to heart insufficiency and the accumulation was in “dependent areas” and possibly due to lymph fluid. That night I also had a scary experience where I was sleeping then, suddenly jumped awake, clutching my chest after it felt like my heart skipped a beat (the only way I can describe it is that it felt like it stopped). Went to GP the next day, went to do labs, echo, ekg, and got a 48 holter monitor put on….

Just in time, the very next day I had a repeat of the same experience, except when I tried to ignore it, it happened again, and again…. And again. I thought my BP was dropping too low, so measured that using an electronic machine, that said BP was actually higher than usual – 138/86 vs 110/70, while the pulse was only 35…. The lowest I ever saw my pulse go before was 45, usually it is 45-50. I started to worry when the machine was showing the symbol that indicates erratic heart rate, and on consequent measurements it refused to work, showing that heart symbol and an error… I also felt quite faint and my chest felt numb. For some reason I felt like if I lay down I might pass out and not wake up, so I started pacing while I called 911. I was concerned because I took ddavp which may cause fluid and electrolyte shifts that are actually fatal. EKG in ambulance was fine and when I saw the nurse in the hospital. After many hrs of waiting, I saw the attending who informed me that my blood tests didn’t indicate heart failure (I don’t know which test tells them this, but I have the results in case someone cares to look), but she was concerned @ my HR being 37bpm, so I was seen by their cardiology dept. While lying there, trying to sleep, I had the same sort of episode again, which their monitor for some reason failed to record… Long story short, they reluctantly let me go because they couldn’t find anything wrong in the blood work, except low thyroid (by TSH) which I they advised to follow up with other tests (T3, etc). And they said good thing I had the holter monitor on so they can examine whether it shows anything and to please come back if I feel like I’m dying again… lol.


For some reason what I didn’t connect this with until a little later is food. Looking back at my food journal, when I had the arrhythmia it was the same night when I tried spelt pasta after which I wasn’t feeling to well. The second episode was after I had tried a little sauerkraut and grapefruit, and then, on the day when it got really worse was when I had significantly more sauerkraut… I also remember going to bed feeling bad, and my heart beating really slow, but heavy. Anyway tonight I had the same experience, again, but milder. Again low HR @ 37bpm. I got up, ate some beef and sweet potato, HR went up to 48, I went to bed and all was good.

Now that I am reading your post Gradman, I find it interesting your alluding again to FODMAPS. Cabbage is on that list. Unfortunately, while it seems to be an issue, it is either in a complex with others, since I am having trouble with non–FODMAP foods. Anything in excess really, but some examples are potato, rice, carrot, celery, corn, eggplant, banana, blueberries, orange, pinapple, etc. I try to include some fruit recently, such as orange and pineapple since they rate low on my igg list- but they almost immediately cause my knee joints to hurt. So either it's FODMAP isnt the problem, or it is the problem, along with some other things... for the most part I am already eliminating them, except I have apples occasionally... I will eliminate that as well.

RE betaine HCL, I actually ran out, need to get more, just was tied up with all this going on. I tried a test recommended by naturopaths where I took betaine hcl at 5 min intervals before lunch. I got up to 5x500mg, didn’t really feel anything, but didn’t want to take more. No GERD without them, but used to have GERD >6 years ago, when I took proton pump inhibitors for about 3 yrs… the only reason I remembered this is I accidentally read that PPI’s are correlated with food intolerance symptoms.
In any case I did not observe any immediate differences between taking betaine or not.

Interesting thought regarding probiotics. I took and continue to take a number of different brands, but don’t really see any immediate effects. I got a different brand now which has 50bn cfu, but so far no difference. Should I stop?

So far the gastroenterologist doesn’t want to do the stool testing. I will contact Genova to see if there are private labs where I can do their Parisitology Profile without doctor’s referral. I will post whatever I get from biopsy results as soon as I get them myself. I suppose in the meantime I shall get more Betaine hcl and take about 3 caps with every meal.


Brometheus – already done mate, thanks.

[Gradman]

Wow sorry to hear about your ordeal, what a nightmare. How have you been keeping since? Thanks for putting up the bloodwork - good to see they are following up the tsh test with T3, T4. The other bits and pieces aren't worrying (low troponin must have been welcome news after that whole episode), but I'm curious about the low neutrophils... did they comment on that? Also, you mention that you were able to leave an indent in the "fat roll" around your midsection which indicates it's likely fluid retention, and I wonder if your low neutrophils and this fluid retention are related. That's one for your medical team though, I could offer theories but I'd just be speculating.

As for your symptoms, heart arrhythmias are serious but common symptoms among the IBS "cluster". Have you had arrhythmias before this time or was that the first?

With regards to FODMAPs, investigating that avenue is a very sound idea. Remember too that IgG tests aren't 100% reliable, and even if they were, those related to specific allergies, rather than intolerances under which FODMAPs fall. FODMAPs are just fermentable carbohydrates that aren't so well absorbed, and the excess fermentation is where the problems begin. Many of the foods you listed above I would expect to cause reactions in FODMAP sensitive people. Also remember that symptoms can lag depending on transit time, and if you've combined foods in meals it's difficult to tease out exactly where the effect is coming from.

As for Betaine HCl, it's not something I would recommend long term. It's usually just used short term to normalise stomach acid levels in those who are low (particularly those on sustained dose PPI's). And with regards to probiotics, I'm not completely up with the literature but they tend to be a bit hit and miss with respect to efficacy. Generally speaking you can't change the morphology of the gut directly, but you can shift the general dynamic, and I'm not sure that probiotics achieve that to any meaningful degree (on a side note I'm almost convinced that IBS is caused by massive perturbations in gut morphology by various means, but more evidence is needed).

So go and see your dietitian and make sure they've got experience with FODMAPs. Show them your food diary and see how you go (do you also list symptoms and times on there?). Yes stool testing is a very good idea if you can afford it, and make sure you know exactly what tests they are running, for what parasites and get some stat data, i.e. the sensitivity of the tests etc. You don't want to rule out a potential cause only to find out that a test missed it. It may be that you need to do multiple tests to get a reliable result. Do post biopsy results and I hope all is well in the meantime.

[bonkerzzz]

I'm sorry you're having so many problems with this stuff. I have similar problems myself however it's all just a theory of mine at the minute related to my arthritis trouble.

Anyway, I just thought I would mention something I read about in the book Protein Power. Are you sensitive to Arachidonic acid by any chance? A type of omega 6 acid found heavily in beef and eggs, as well as other food. I notice you've been eating beef constantly through out the thread, have you tried cutting that out along with other sources? Sorry if you've mentioned it, i've only skipped through the thread.

[CasiusBlack]

Hey..

So I'm in the same boat as you. I've seen a dozen doctors and no one really helped.

Here's my understanding of the problem: Intolerances are because of gut problems. There for, fix your gut.

That's where I'm now.

Drink a **** load of bone broth (in soups etc) and probiotic foods. Should heal over time. I'm seeing results.

[ra2commando]

Wow sorry to hear about your ordeal, what a nightmare. How have you been keeping since? Thanks for putting up the bloodwork - good to see they are following up the tsh test with T3, T4. The other bits and pieces aren't worrying (low troponin must have been welcome news after that whole episode), but I'm curious about the low neutrophils... did they comment on that? Also, you mention that you were able to leave an indent in the "fat roll" around your midsection which indicates it's likely fluid retention, and I wonder if your low neutrophils and this fluid retention are related. That's one for your medical team though, I could offer theories but I'd just be speculating.

As for your symptoms, heart arrhythmias are serious but common symptoms among the IBS "cluster". Have you had arrhythmias before this time or was that the first?

With regards to FODMAPs, investigating that avenue is a very sound idea. Remember too that IgG tests aren't 100% reliable, and even if they were, those related to specific allergies, rather than intolerances under which FODMAPs fall. FODMAPs are just fermentable carbohydrates that aren't so well absorbed, and the excess fermentation is where the problems begin. Many of the foods you listed above I would expect to cause reactions in FODMAP sensitive people. Also remember that symptoms can lag depending on transit time, and if you've combined foods in meals it's difficult to tease out exactly where the effect is coming from.

As for Betaine HCl, it's not something I would recommend long term. It's usually just used short term to normalise stomach acid levels in those who are low (particularly those on sustained dose PPI's). And with regards to probiotics, I'm not completely up with the literature but they tend to be a bit hit and miss with respect to efficacy. Generally speaking you can't change the morphology of the gut directly, but you can shift the general dynamic, and I'm not sure that probiotics achieve that to any meaningful degree (on a side note I'm almost convinced that IBS is caused by massive perturbations in gut morphology by various means, but more evidence is needed).

So go and see your dietitian and make sure they've got experience with FODMAPs. Show them your food diary and see how you go (do you also list symptoms and times on there?). Yes stool testing is a very good idea if you can afford it, and make sure you know exactly what tests they are running, for what parasites and get some stat data, i.e. the sensitivity of the tests etc. You don't want to rule out a potential cause only to find out that a test missed it. It may be that you need to do multiple tests to get a reliable result. Do post biopsy results and I hope all is well in the meantime.

Thanks Gradman for your continued input, I really appreciate it.

Noone had any comment regarding neutrophils, even though I pointed out that they seem to be "off" on more than one test. The way it was explained to me is that doctors will look for symptoms to diagnose, and then look at blood tests to confirm diagnoses. Having a slight deviation without any other symptoms apparently doesn't mean anything. Whatever. In any case I got the thyroid checked out within a day of this, and all was fine (TSH, T4, T3).

Yes that hump was apparently severe fluid retention - I very recently dropped 12 lbs. I think that is pretty extreme, given my current weight, 150lbs even if due to ddavp, which I now stopped completely. I have never had arrhythmias before until that week, and a few palpitations after, but now seems to be gone. My doc seems generally baffled, and really frustrated in that he cannot help. I can totally understand it, because I can well imagine what he feels like to have a patient keep coming in and to have no ideas of what to do next. I have a meeting with endocrinologist to follow up regarding the DI tests, so I asked my family doc to explain to her the other complaints I have. Hopefully she will have some ideas if this is in her area at all.

On the plus side I have finally gotten a referral to a dietician from the gastroenterologist and a parasitology test from my family doc. Because I have to do this through referrals in Canada, I have little choice in who I get for dietitian, and ditto for the type of parasitology test being performed, but I got to make do with what I got. My only other option is to travel to US (apparently you can't send stool samples across the border to a lab), which is just dragging this our unnecessarily. I had discussed with family the idea of going to the US to Mayo clinic to get their diagnostics dept thinking it would cost 3-5k max, but when I told to my doc about this, he said it will run me a minimum of 30-50K because they would insist on redoing all tests, s/a MRI, etc, and would get zero insurance coverage so that's ... a bit too much.

On the plus side I do seem to be doing a bit better lately. It can get worse for a week, then for no reason I can see get better for a week. At times I seem to get this fatigue immediately after I eat a certain food, e.g. buckwheat, and then I try it the next day and feel fine. It must be some other factor or I am seriously missing something. I have gotten some pretty good digestive enzymes which seem to help with bloating, etc, I feel like that is helping. Hopefully the dietician can help me figure this out, she works at a pretty good hospital in Toronto (St Michael's).

I'm sorry you're having so many problems with this stuff. I have similar problems myself however it's all just a theory of mine at the minute related to my arthritis trouble.

Anyway, I just thought I would mention something I read about in the book Protein Power. Are you sensitive to Arachidonic acid by any chance? A type of omega 6 acid found heavily in beef and eggs, as well as other food. I notice you've been eating beef constantly through out the thread, have you tried cutting that out along with other sources? Sorry if you've mentioned it, i've only skipped through the thread.

I am not sure, and believe me, I want to give beef a very much needed break - not just to see if I have any bad reactions to it, but also because I have been eating it pretty much every day for the past year. I just have trouble finding a substitute as I seem to have had some problems with fish and poultry, though I am trying them out again. It is hard to evaluate it too because as Gradman noted, some of these effects can come on slowly and lingering for quite some time.

Hey..

So I'm in the same boat as you. I've seen a dozen doctors and no one really helped.

Here's my understanding of the problem: Intolerances are because of gut problems. There for, fix your gut.

That's where I'm now.

Drink a **** load of bone broth (in soups etc) and probiotic foods. Should heal over time. I'm seeing results.

Thanks, I hope you heal fast as well. I seem to have the same general feeling as you. Do you find digestive enzymes, n-acetylcystine, zinc and glutamine to be of help at all?

[needtoeat]

Didn't read the thread in its entirety or read your post fully as I'm at work. I have had a lot of tiredness, poor sleep and stomach/gastro. issues. I initially went to a walk-in clinic who sent me for blood tests and it came back with my thyroid being off. They sent me for another test a few months later and it was fine and my stomach was better for awhile.

Now in the last few months my stomach wasn't good again so I re-visited some things that I feel helped me before. I've started adding 'Iodized' salt to my meals and avoid other foods that are already salted. Iodized salt is there for a reason but a lot of people are avoiding salt altogether or non-iodized salt. Processed foods that are salted are almost certainly not containing iodized salt.

I have started taking a B12 supplement. I'm a vegetarian so there is a possibility that is part of the reason I had issues. I also consume B12 fortified Soy milk as I'm pretty sure I have a lactose intolerance if not a dairy allergy.

I've also started to eat 'Iron' fortified cereal as low iron could be my issue along with B12. I'm a pale person so maybe mildly anemic. I was never a big cereal eater before but this seems to make a difference.

Since making these few changes I have been sleeping better and had much fewer stomach issues. I should probably get the issue pin-pointed but so far so good. Your symptoms seem more severe since you are having external physical symptoms which suggests an allergy rather than an intolerance or a deficiency.

[KLMARB]

Wow sorry to hear about your ordeal, what a nightmare. How have you been keeping since? Thanks for putting up the bloodwork - good to see they are following up the tsh test with T3, T4. The other bits and pieces aren't worrying (low troponin must have been welcome news after that whole episode), but I'm curious about the low neutrophils... did they comment on that? Also, you mention that you were able to leave an indent in the "fat roll" around your midsection which indicates it's likely fluid retention, and I wonder if your low neutrophils and this fluid retention are related. That's one for your medical team though, I could offer theories but I'd just be speculating.

As for your symptoms, heart arrhythmias are serious but common symptoms among the IBS "cluster". Have you had arrhythmias before this time or was that the first?

With regards to FODMAPs, investigating that avenue is a very sound idea. Remember too that IgG tests aren't 100% reliable, and even if they were, those related to specific allergies, rather than intolerances under which FODMAPs fall. FODMAPs are just fermentable carbohydrates that aren't so well absorbed, and the excess fermentation is where the problems begin. Many of the foods you listed above I would expect to cause reactions in FODMAP sensitive people. Also remember that symptoms can lag depending on transit time, and if you've combined foods in meals it's difficult to tease out exactly where the effect is coming from.

As for Betaine HCl, it's not something I would recommend long term. It's usually just used short term to normalise stomach acid levels in those who are low (particularly those on sustained dose PPI's). And with regards to probiotics, I'm not completely up with the literature but they tend to be a bit hit and miss with respect to efficacy. Generally speaking you can't change the morphology of the gut directly, but you can shift the general dynamic, and I'm not sure that probiotics achieve that to any meaningful degree (on a side note I'm almost convinced that IBS is caused by massive perturbations in gut morphology by various means, but more evidence is needed).

So go and see your dietitian and make sure they've got experience with FODMAPs. Show them your food diary and see how you go (do you also list symptoms and times on there?). Yes stool testing is a very good idea if you can afford it, and make sure you know exactly what tests they are running, for what parasites and get some stat data, i.e. the sensitivity of the tests etc. You don't want to rule out a potential cause only to find out that a test missed it. It may be that you need to do multiple tests to get a reliable result. Do post biopsy results and I hope all is well in the meantime.

Interesting. After reviewing the FODMAPS concept, it appears that its based upon Cordain's (and others) work on Evolutionary Discordance. Perhaps I missed it in my quick review, but the area they don't hit is the contrast between digestive patterns that are based upon glucagon secretion vs. one's based on glucose. I did a quick internet search of "Cordain and FODMAPS" and found that there is lots of discussion on the relationship between the concepts.

[itsagoodday]

Brand new poster, though I've been lurking for a while now. Just had to respond to this, though!

I had cut out wheat a long time ago anyway, so I knew it wasn't celiac.

Have you been tested for celiac, or did you just try going off wheat for a time? Because as a celiac myself, I can tell you that everything you're going through could conceivably come from just that one thing.

I could go on forever, but here are a couple of things for you to chew on. I'm sorry this is long, but I'm a bit passionate on the subject. I was horribly and unexplainably sick from the ages of 18-33, only getting more complications as time went on, and it ruined my life in those years. It's been a year and a half since my diagnosis, and I have a completely different life now. Celiac disease affects approximately 1 in every 133 people, so it's VERY common, but most of those people are undiagnosed. So forgive me if I ramble on a bit, but I figure even if I can't help you, perhaps it will help someone else.

Celiac is not just a reaction to wheat. It's a reaction to gluten, which can be found in wheat, rye, barley, and some other odds and ends wheat relatives (spelt, kamut, etc.). You would not believe how gluten contaminated the world is! I not only had to completely overhaul my diet, I had to change things like my vitamin, supplements, the rinse aid I used in my dishwasher, and my old pots and pans to go completely gluten-free. And it takes a long, long time to heal even when your world has become 100% non-contaminated. So if you just tried going off wheat for a little while and nothing changed, well... it wouldn't really have proven anything.

Celiac reactions are not always immediate, unlike food allergies. Some people take days or a week or more to develop a full blown reaction. That could explain why sometimes it seems that a food may be bothering you, and other times it seems like it does not, as you may not be looking at the right thing. Celiac can cause leaky gut (I had it for years pre-diagnosis). Celiac is often written off as IBS. Many celiacs suffer secondary intolerances to specific foods, common ones are dairy, eggs and salicylates. Oats are also a common problem, they are almost always processed on the same machinery that wheat is processed on, which contaminates them with wheat gluten.

There is a very specific rash that some celiacs get. It's called DH or dermatitis herpetiformis. Have you ever had a dermatologist look at your rash? Go to one next time your rash develops, and ask them test it and see if it's DH.

There is a blood test to check for celiac. There is also an endoscope test that can be done. However, keep in mind that both tests are known to throw false negatives. In other words, if even one of those tests comes back positive, then you are definitely celiac. If it comes back negative, well... consider it inconclusive. Also, the more gluten-free your diet is before you do those tests, the more likely you are to have negative test results, even if you happen to be a raging celiac.

Celiac disease can totally screw with your heart. It's an auto-immune disease that causes malabsorption and malnutrition because it damages your intestines, so no matter how 'healthy' you're eating or how many vitamins and supplements you take, you may not be getting much out of them. Vitamin deficiencies alone can mess up your heart. I had years of a truly crazy pulse.

Anyway. Reading through your posts, the warning gongs were going off in my head. I know what it's like to be really sick, and to be really sick of being sick. If this doesn't help you, I hope you find something else soon that does!

[Gradman]

Thanks Gradman for your continued input, I really appreciate it.

Noone had any comment regarding neutrophils, even though I pointed out that they seem to be "off" on more than one test. The way it was explained to me is that doctors will look for symptoms to diagnose, and then look at blood tests to confirm diagnoses. Having a slight deviation without any other symptoms apparently doesn't mean anything. Whatever. In any case I got the thyroid checked out within a day of this, and all was fine (TSH, T4, T3).

Yes that hump was apparently severe fluid retention - I very recently dropped 12 lbs. I think that is pretty extreme, given my current weight, 150lbs even if due to ddavp, which I now stopped completely. I have never had arrhythmias before until that week, and a few palpitations after, but now seems to be gone. My doc seems generally baffled, and really frustrated in that he cannot help. I can totally understand it, because I can well imagine what he feels like to have a patient keep coming in and to have no ideas of what to do next. I have a meeting with endocrinologist to follow up regarding the DI tests, so I asked my family doc to explain to her the other complaints I have. Hopefully she will have some ideas if this is in her area at all.

On the plus side I have finally gotten a referral to a dietician from the gastroenterologist and a parasitology test from my family doc. Because I have to do this through referrals in Canada, I have little choice in who I get for dietitian, and ditto for the type of parasitology test being performed, but I got to make do with what I got. My only other option is to travel to US (apparently you can't send stool samples across the border to a lab), which is just dragging this our unnecessarily. I had discussed with family the idea of going to the US to Mayo clinic to get their diagnostics dept thinking it would cost 3-5k max, but when I told to my doc about this, he said it will run me a minimum of 30-50K because they would insist on redoing all tests, s/a MRI, etc, and would get zero insurance coverage so that's ... a bit too much.

On the plus side I do seem to be doing a bit better lately. It can get worse for a week, then for no reason I can see get better for a week. At times I seem to get this fatigue immediately after I eat a certain food, e.g. buckwheat, and then I try it the next day and feel fine. It must be some other factor or I am seriously missing something. I have gotten some pretty good digestive enzymes which seem to help with bloating, etc, I feel like that is helping. Hopefully the dietician can help me figure this out, she works at a pretty good hospital in Toronto (St Michael's).

Sorry for the late reply.. but it's good to see that you've at least got some new avenues open. Shame about the price of getting done in the US, 30-50k is several orders of magnitude beyond ridiculous. But at least you've got someone who can analyse your diet - even if you have no choice in who you get, I suggest you tell them right at the outset what it is that you're looking for. If they haven't heard of FODMAPs, I'm sure they'll do the research for you. The important thing is just that they do a thorough analysis and hopefully tease out a pattern. Same with the stool testing, try and talk your doctors into getting the right tests done - if they have no idea and just decide to shoot in the dark they're wasting your time and potentially closing off avenues they shouldn't do. Talk to your endo as well about this, see what they know about dysbiosis and see if there are any tests you can get done. I still remain convinced that the majority of these cases are a result of aberrations in gut microbiome, but what I don't know. Parasitology testing will be very important in that regard. Post any results you get up here as well. Another thing to consider when you see your dietitian, in relation to what itsagoodday posted - you initially mentioned a diet ostensibly free of gluten but there is always the chance the millet you were eating was contaminated - do you know if it was processed on machinery that also processes other grains?

Also, you talk about getting reactions immediately in response to food, what exactly is the timecourse?

Interesting. After reviewing the FODMAPS concept, it appears that its based upon Cordain's (and others) work on Evolutionary Discordance. Perhaps I missed it in my quick review, but the area they don't hit is the contrast between digestive patterns that are based upon glucagon secretion vs. one's based on glucose. I did a quick internet search of "Cordain and FODMAPS" and found that there is lots of discussion on the relationship between the concepts.

Interesting, I've not heard that comparison before - what made you connect the two? I did that google search and found some blogs that had mentioned it, was there anything else? Also I'm interested to see some of those sources on the different digestion patterns, do you have any links?

As for the theory itself, I'm not 100% up to speed but from what I've read I can't help but feel it's incomplete - specifically it discusses the course of human genome adaptation (or lack thereof) to modern diet, but does not seem to consider dynamic functional changes in our microbiome. Some good writing has been done in the last decade on the "hologenome", that is to say the functional symbiosis between our genome and that of the 100-200 trillion bacteria that comprise the microbiome. Still a burgeoning frontier, much more to discover but must be considered.

Didn't read the thread in its entirety or read your post fully as I'm at work. I have had a lot of tiredness, poor sleep and stomach/gastro. issues. I initially went to a walk-in clinic who sent me for blood tests and it came back with my thyroid being off. They sent me for another test a few months later and it was fine and my stomach was better for awhile.

Now in the last few months my stomach wasn't good again so I re-visited some things that I feel helped me before. I've started adding 'Iodized' salt to my meals and avoid other foods that are already salted. Iodized salt is there for a reason but a lot of people are avoiding salt altogether or non-iodized salt. Processed foods that are salted are almost certainly not containing iodized salt.

I have started taking a B12 supplement. I'm a vegetarian so there is a possibility that is part of the reason I had issues. I also consume B12 fortified Soy milk as I'm pretty sure I have a lactose intolerance if not a dairy allergy.

I've also started to eat 'Iron' fortified cereal as low iron could be my issue along with B12. I'm a pale person so maybe mildly anemic. I was never a big cereal eater before but this seems to make a difference.

Since making these few changes I have been sleeping better and had much fewer stomach issues. I should probably get the issue pin-pointed but so far so good. Your symptoms seem more severe since you are having external physical symptoms which suggests an allergy rather than an intolerance or a deficiency.

Do read back over the thread and look for parallels between what has been discussed and your condition and report back with what you find. I wonder if the gastro and sleep issues were related, might have been two separate issues.

[KLMARB]

Sorry for the late reply.. but it's good to see that you've at least got some new avenues open. Shame about the price of getting done in the US, 30-50k is several orders of magnitude beyond ridiculous. But at least you've got someone who can analyse your diet - even if you have no choice in who you get, I suggest you tell them right at the outset what it is that you're looking for. If they haven't heard of FODMAPs, I'm sure they'll do the research for you. The important thing is just that they do a thorough analysis and hopefully tease out a pattern. Same with the stool testing, try and talk your doctors into getting the right tests done - if they have no idea and just decide to shoot in the dark they're wasting your time and potentially closing off avenues they shouldn't do. Talk to your endo as well about this, see what they know about dysbiosis and see if there are any tests you can get done. I still remain convinced that the majority of these cases are a result of aberrations in gut microbiome, but what I don't know. Parasitology testing will be very important in that regard. Post any results you get up here as well. Another thing to consider when you see your dietitian, in relation to what itsagoodday posted - you initially mentioned a diet ostensibly free of gluten but there is always the chance the millet you were eating was contaminated - do you know if it was processed on machinery that also processes other grains?

Also, you talk about getting reactions immediately in response to food, what exactly is the timecourse?



Interesting, I've not heard that comparison before - what made you connect the two? I did that google search and found some blogs that had mentioned it, was there anything else? Also I'm interested to see some of those sources on the different digestion patterns, do you have any links?

As for the theory itself, I'm not 100% up to speed but from what I've read I can't help but feel it's incomplete - specifically it discusses the course of human genome adaptation (or lack thereof) to modern diet, but does not seem to consider dynamic functional changes in our microbiome. Some good writing has been done in the last decade on the "hologenome", that is to say the functional symbiosis between our genome and that of the 100-200 trillion bacteria that comprise the microbiome. Still a burgeoning frontier, much more to discover but must be considered.



Do read back over the thread and look for parallels between what has been discussed and your condition and report back with what you find. I wonder if the gastro and sleep issues were related, might have been two separate issues.

Sorry Gradman,

For the tardy reply. Whenever the concept of a "Food Allergy" is mentioned, I always look for causation, rather than merely focusing on symptomatic treatment methods a'la german medical philosophy. Evolutionary discordance provides many of those answers. I also come from a family that is fairly sensitive to gluten (fairly typically northern european) so I've been able to help many of my relatives (as well as myself) with their problems....

[Gradman]

Sorry Gradman,

For the tardy reply. Whenever the concept of a "Food Allergy" is mentioned, I always look for causation, rather than merely focusing on symptomatic treatment methods a'la german medical philosophy. Evolutionary discordance provides many of those answers. I also come from a family that is fairly sensitive to gluten (fairly typically northern european) so I've been able to help many of my relatives (as well as myself) with their problems....

I'm right with you re: causation over symptomatic treatment - that's why I do so much work in this area. I remain convinced that gut microbial (dys)function lies at the heart of most, or at least the periphery of all these sorts of afflictions. It is to that end though that I thought the particular writeup of the evolutionary discordance theory that I read was incomplete. As I mentioned it talked about the course of the human genome with respect to changes in human diet but these new frontiers of science are showing that this is incomplete. The gut microbiome and perhaps even virome are being shown more and more to confer immense functional capacity and integration at gene level. But that's just a case of new frontiers in science redefining old paradigms - my point in writing this though is that this is just debating technical aspects, what is more important is practicality and if you've been able to solve yours and your family's problems by dietary means then the technical aspects might as well be immaterial, you've already got the most important bit solved.

[ra2commando]

mmm I thought I was getting somewhat better, but then I got much worse... No rhyme or reason to this. Now when I eat sweet potatoes, my stomach actually hurts, not sure what this is.

Well I finally saw the dietician, and while she seemed like a great lady and trying to help, my gut feeling is that she will not be able to. She hasn't heard of any food hypersensitivities at all, and when I spoke of fatigue and brain fog, she was thinking whether I got enough iron, carbs, and overall calories... Well, she is a registered dietician at a hospital and deals with more typical clinical complaints. I have no idea why my gastroenterologist referred me to her..... Closing off avenues like you said. Anyway I mentioned to her that I have been recently loosing quite a bit of weight without trying to do so, and she suggested that I try Peptamen, which is a high calorie drink with hydrolyzed whey, maltodextrin and mct's. I am not too keen on it, and tried a bit, which seems to be kind of OK, but I know from experience that malto makes me bloat, and I tried amino acids before without success. She suggested that after this we can try regular stuff like Ensure, not sure what the reasoning is, as I told her I have sensitivities to milk, soy, etc.
However I do not see where this will take me. Ok so I can gain back the weight, but so what, I want to cure this thing so I can eat normally.

Gradman, with regards to wheat in millet - I agree it is absolutely possible, especially considering that the symptoms are similar to when I eat durum wheat. For this reason I always wash grains 3-4 times before preparation. What confuses me though is that it is more than one thing, e.g. if I eat wheat, for sure I will feel worse, but also sweet potatoes, etc. Doesn't make sense.
With respect to timing, nowadays it seems to be immediate or within 30 minutes of finishing a meal.

As an example, I am trying to expand my diet, so I tried romano beans in small qty. On 1st day I felt fine (I ate them 2ce, 1quarter cup), but on the next day I tried them again, I immediately felt like going to the bathroom (rare) and felt extremely sleepy afterwards. I found this odd as I can't recall this type of reaction with anything else. It seems to be different to different foods, even those in close relations. This seems odd as chickpeas are ok in small quantity, lima beans give me a rash and fatigue, while navy beans brain fog and fatigue.


I am attaching the biopsy results which didn't find anything at all. I also finally got a chance to follow up with my endocrinoligist who says my T levels are low. I attached the results as well, mind you they are from November (it took me that long to get a follow up appointment) It's probably not related to the food intolerance thing. I already did a test she req'd for growth hormone and more testosterone (bioavailable, and something else), and will follow up this friday so I can get the results then. Anything else I should ask her?

I too am thinking of the same way KLMARB - what is the cause, so I can fix it. [edit - wow it took me a while to type that up, I missed the last post] I was doing some more reading am kind of lost on the Evolutionary Discordance theory though. If that was the underlying concern, then I should be able to eat most vegetables, fruit and nuts fine?

What confuses (and frustrates) me more is that most other people seem to be able to handle those foods fine, even my parents, so what made me so darn special, lol.

[Gradman]

mmm I thought I was getting somewhat better, but then I got much worse... No rhyme or reason to this. Now when I eat sweet potatoes, my stomach actually hurts, not sure what this is.

Well I finally saw the dietician, and while she seemed like a great lady and trying to help, my gut feeling is that she will not be able to. She hasn't heard of any food hypersensitivities at all, and when I spoke of fatigue and brain fog, she was thinking whether I got enough iron, carbs, and overall calories... Well, she is a registered dietician at a hospital and deals with more typical clinical complaints. I have no idea why my gastroenterologist referred me to her..... Closing off avenues like you said. Anyway I mentioned to her that I have been recently loosing quite a bit of weight without trying to do so, and she suggested that I try Peptamen, which is a high calorie drink with hydrolyzed whey, maltodextrin and mct's. I am not too keen on it, and tried a bit, which seems to be kind of OK, but I know from experience that malto makes me bloat, and I tried amino acids before without success. She suggested that after this we can try regular stuff like Ensure, not sure what the reasoning is, as I told her I have sensitivities to milk, soy, etc.
However I do not see where this will take me. Ok so I can gain back the weight, but so what, I want to cure this thing so I can eat normally.

Dammit, that's exactly what I was hoping wouldn't happen. I thought the most likely scenario is that you'd get someone that hadn't seen something like this before but hopefully was willing to think outside the box... but Ensure.. not good. Suffice to say, those drinks aren't going to solve your problems. As you point out in fact they're likely to cause more problems than solutions. Hope you didn't pay for that?? At least if you stay in contact with them you can nudge them in right direction and get them to investigate more thoroughly?

Gradman, with regards to wheat in millet - I agree it is absolutely possible, especially considering that the symptoms are similar to when I eat durum wheat. For this reason I always wash grains 3-4 times before preparation. What confuses me though is that it is more than one thing, e.g. if I eat wheat, for sure I will feel worse, but also sweet potatoes, etc. Doesn't make sense.
With respect to timing, nowadays it seems to be immediate or within 30 minutes of finishing a meal.

As an example, I am trying to expand my diet, so I tried romano beans in small qty. On 1st day I felt fine (I ate them 2ce, 1quarter cup), but on the next day I tried them again, I immediately felt like going to the bathroom (rare) and felt extremely sleepy afterwards. I found this odd as I can't recall this type of reaction with anything else. It seems to be different to different foods, even those in close relations. This seems odd as chickpeas are ok in small quantity, lima beans give me a rash and fatigue, while navy beans brain fog and fatigue.


I am attaching the biopsy results which didn't find anything at all. I also finally got a chance to follow up with my endocrinoligist who says my T levels are low. I attached the results as well, mind you they are from November (it took me that long to get a follow up appointment) It's probably not related to the food intolerance thing. I already did a test she req'd for growth hormone and more testosterone (bioavailable, and something else), and will follow up this friday so I can get the results then. Anything else I should ask her?

I too am thinking of the same way KLMARB - what is the cause, so I can fix it. [edit - wow it took me a while to type that up, I missed the last post] I was doing some more reading am kind of lost on the Evolutionary Discordance theory though. If that was the underlying concern, then I should be able to eat most vegetables, fruit and nuts fine?

What confuses (and frustrates) me more is that most other people seem to be able to handle those foods fine, even my parents, so what made me so darn special, lol.

First things first, it looks like all they did with your biopsy was check for coeliac? I find that a bit surprising, what was the rationale they gave you?? And surely they'd asked you about your diet? Doing a biopsy for coeliac disease after long term abstention from gluten is practically pointless. Your blood tests aren't giving away too many clues either.

Your description of symptoms make me think more and more that it's really important you get this parasitology test done (and hopefully that it's done right). Symptoms of intolerance accumulate and wane as does chemical load but they should be relatively reproducible. Although I can't be certain from what you've said, it doesn't appear to be the case which suggests it's something deeper. In any case, I would say that if you're going to introduce new foods, legumes probably aren't the best place to start. You probably chose them because of their fibre content but that's precisely the reason I'd be avoiding those for now - you've got a nice dose of fermentable CHO there.

As far as other tests, I can completely sympathise with your frustration - it seems like nobody there is willing to think outside the box. Honestly I'd talk to her about doing lactulose test or something similar just to see what turns up. But definitely get onto that stool testing - and make sure if they're testing for bugs like Dientamoeba that the stool samples are fixed, that's very important.

[ra2commando]

Yes, you are right, Peptamen didn’t go down well at all, and I am sure ensure would have been much worse. Immediately after trying about 50 ml, I started feeling bloated and with 1 hour I started feeling something similar to diziniess and confusion, which persisted for several hours while I was trying to fall asleep. I emailed the dietitian about my experiences and as you suggested, asked her to look into other possibilites, such as FOFMAPS, amines, etc. I am sure that she has a much wider network to draw on that I do.

I am sure that the gastroenterologist would look for other problems with the gut lining other than celiac, maybe for the biopsy that is all that he req’d. I was not impressed by him. While he is considered as one of the best, his operation reminded me of a meat shop. As soon as I came in, the anesthesiologist wanted to start shooting me up before I even saw the doctor. I explained to the gastroenenterologist about my food intolerances and the diet. His reply was that yes, food intolerances exist and that nothing can be done about it. At that point I wanted to ask him why he still wanted to do the gastroscopy if he thought there was no point to it, but then figured I might as well do it anyway. It was then a pain to even get a referral from him to the dietitian.. like an uphill battle this is. You’d think that they would take some pride in their profession and care about the patient. Oh well…

Anyway regarding the parasite testing. I found the lab that does exactly the tests you spoke about, unfortunately they require a GP to prescribe them and do not do private testing. Needless to say my GP wouldn’t go through the trouble of registering for this since he didn’t really feel this was a problem in the first place, but he did give me a req for a test at the local lab. Thank God for him, I think any other physician here in Canada would have long given me the boot. When I get the results, if it shows nothing and doesn’t test for the stuff we want, I will probably get Flagyl from the US and take it for a couple of days to a week to see whether there are any improvements.

I will also do the lactulose test – I am seeing a naturopath who promised to find out how I can get this test done.

[edit] With respect to legumes - I actually do not care very much for their high fiber content at all, and it's not my favorite meal in general, but I simply do not have anything else that I can eat. Like I said after i had to drop sweet potatoes, this only left me with buckwheat, quinoa and (some) legumes as a source of starch. I am also trying out some fruit, and some, like pineapple and grapefruit seem ok. Others, despite being low FODMAP are not - blueberries, bananas, strawberry, grapes...

itsagoodday, thanks for your input and I am truly sorry for your condition. I have been tested for celiac through the blood test and gastroscopy, and it doesn’t seem like I have it. Furthermore I seem to be reacting to things that are very probably gluten free, such as milk and whey proteins…

[andrad01]

If you have a food intolerance, you may be able to eat small amounts of the offending food without trouble.

[Torero]

Hi, I have been reading through the thread as was having issues with muscle development, energy, depression etc. I always believed it wa due to hormone levels and the doctors took blood tests which stated I was slightly high in oestrogen but nothing overly worrying that should cause the aforementioned problems. They therefore offered no real help at all! From there I started thinking outside the box and decided to see a nutritional therapist (different to a dietician!), and he has really changed my life! He essentially found I had toxin poisoning in my body, have you looked into this? He subscribed me some supplements to improve my adrenal system and clear it all out! As I have said, I have not seen toxin poisoning mentioned in here (I may be wrong!) so maybe check it out! After seeing him I recommended my gf to go see him as she essentially has the same problems as the OP and he is slowly improving her as well! She saw a series of doctors for a couple of years and I can honestly say she has had more progress with the therapist in the last month then in the whole 2 years with the doctor! Could be an avenue worth pursuing? Would be more then happy to give details of his treatment methods if you wish?

[ra2commando]

If you have a food intolerance, you may be able to eat small amounts of the offending food without trouble.

tx, unfortunately those amounts have to be rather small indeed, i seemed to get ill even after 2g flax oil

Hi, I have been reading through the thread as was having issues with muscle development, energy, depression etc. I always believed it wa due to hormone levels and the doctors took blood tests which stated I was slightly high in oestrogen but nothing overly worrying that should cause the aforementioned problems. They therefore offered no real help at all! From there I started thinking outside the box and decided to see a nutritional therapist (different to a dietician!), and he has really changed my life! He essentially found I had toxin poisoning in my body, have you looked into this? He subscribed me some supplements to improve my adrenal system and clear it all out! As I have said, I have not seen toxin poisoning mentioned in here (I may be wrong!) so maybe check it out! After seeing him I recommended my gf to go see him as she essentially has the same problems as the OP and he is slowly improving her as well! She saw a series of doctors for a couple of years and I can honestly say she has had more progress with the therapist in the last month then in the whole 2 years with the doctor! Could be an avenue worth pursuing? Would be more then happy to give details of his treatment methods if you wish?

I asked my doc to check heavy metals, he tested lead and mercury. Mercury was just outside the reference range, nothing crazy. I am taking some adrenal stuff, called Ortho Adapt, but i don't notice any difference. What is your protocol like?

[Torero]

I also came back with lead poisoning as my principle problem as well as mercury as a by-product...the therapist i saw prescribed me some supplements originally (adrenal rebuilders, strong digestive enzymes. strong zinc and strong vitamin C) and the difference i am seeing is incredible. I saw him again a couple of days ago and i am getting rid of my toxin levels at 2% a week. Having been affected in many areas of life from working out, sex life to energy levels i am seeing significant improvements in all of them! he has since put me on some more vitamins, one which increases blood flow around the body and then also some good quality BCAA's!

i know is a stab in the dark but the improvements i have seen have been amazing and you never know could be what you are needing!

[diplow]

This blog may be of some help to you, there is a lot of valuable information so take some time to read through some of the relevant articles;

http://coolinginflammation.blogspot.com.au/

Basically Dr. Ayers hypothesis is food intolerances are caused by an absence of necessary bacteria in the gut to digest the food. The damaging of gut flora can usually be attributed to antibiotics which destroy the bacteria, restrictive diets and a lack of new bacteria by over hygienic preparation of food, typical of a Western diet. (As an aside, he also mentions the use of baby formula, as opposed to mothers breast milk, can destroy a babies gut flora, which, if not rectified, will later lead to inflammation and auto immune disease. I myself suffer from these symptoms and coincidentally was bottle fed). This can be partly rectified with supplements such as a probiotic (which I read you've tried), live culture yogurt and other foods of that nature, but these only contain a small number of the hundreds of bacteria needed to properly digest food. So, Dr. Ayers suggests an anti-inflammatory diet (low carb, high protein, high saturated fat) which is to include a large variety of raw, slightly soiled vegetables, to provide new bacteria. The swapping of saliva with a significant other might also be a fun way to get new bacteria, if you're in the mood, haha. Contact with pets is also good.

As a shortcut to the aforementioned, you might also consider a fecal transplant (yes, it's exactly what it sounds like) from a healthy donor who doesn't suffer from food intolerances, which will transfer all the necessary flora directly to your colon.

Let me know what you think (:

[slobey]

Furthermore I seem to be reacting to things that are very probably gluten free, such as milk and whey proteins…

feel so so bad for you. March 2010, after 24 years of good health, the symptoms started. Chronically distended, burning heartburn/indigestion feeling starting from top of my ribcage all the way down to the top of my hips (basically all GI area). Didn't want to wear clothes. The whole area was so sensitive to touch, I just wanted to lay in bed naked. Also noticed I became more fatigued (a different fatigue than just , oh i'm tired.. as I was getting lots of rest).

Gastro first told me IBS. Put me on pills that didn't work. Then did colonoscopy/endoscopy. Came back with gastritis (inflammation of stomach ) and minor ileitis (small intestine). Didn't wanna diagnose me with crones as I wasn't as ill as most people with crones are. I told gastro I think it's food related (and I was so sure it was dairy).. in which he replies .. ' its not what you're eating , it's just the fact that you're eating.

Oh ok doc.. no biggie, to get relief ill just never eat again..

Gastro never thought of sending me to allergist to get tested, so I did it on my own. He shot me up with lots of things and it was negative to them all. Then he said he wanted to do another test for celiacs. Well results came back a month ago that I tested positive for one of the antibodies in 98% of patients with celiacs.

But what about my hunch that dairy was the cause? Well, the part of the small intestine that gets damaged/killed when gluten enters the body is also responsible for breaking down lactose. So, many celiacs sufferers also notice that they've become gluten intolerant. It's not until the body is gluten free and can repair itself, that they can start ingesting dairy again. <-- because of this, i've become gluten + dairy free.

In the meantime you may want to do a serious gluten free diet .. give it.. a few months.. (it can take a couple for the body to get rid of any gluten in the tissues and then a few more months for the intestine to heal).

For me, the worst part is how dilligent you have to be. ie: You would think all plain, lean proteins are good for a celiac, right? Well, I was eating canned tuna in water. But that tuna in water is actually tuna in water AND vegetable broth .. After more research online, it seems that whatever is in vegetable broth can be very upsetting to the stomach/intestines. gluten is latin for 'glue' .. no wonder our bodies have a hard time digesting it. Lesson: gluten is a binding agent and it is E-V-E-R-Y-W-H-E-R-E

I'm here for support. Hoping you get relief.

[KLMARB]

Its seems we have come full circle. In my opinion, nutritional discordancy is the most likely culprit. Not only for the originator of the thread, but for the others that have described their conditions as well. Here are two links, with the intent being to understand the concept in order to establish a nutritional baseline to eliminate potentially discordant foods. Please take the time to read them.

Gradman, I'm formulating a more detailed response to you, as discordancy involves all the concepts you talked about, with the inclusion of the PROTEOME as well...

http://www.beyondveg.com/cat/paleodiet/index.shtml

http://www.direct-ms.org/pdf/Evoluti...al%20Sword.pdf

[Gradman]

Sorry got a bit hectic and forgot to check back in - any updates??? How have your symptoms been lately? Can't believe your doc won't prescribe parasitology testing because he thinks it's a waste of time? Surely it's worth a look, particularly due to the pervasiveness of your symptoms. Also, the additional foods you mentioned causing symptoms do in fact contain FODMAPs, although so too do the fruits you mentioned that dont - very complex case you got here. I'm interested to see the results of these tests.

Its seems we have come full circle. In my opinion, nutritional discordancy is the most likely culprit. Not only for the originator of the thread, but for the others that have described their conditions as well. Here are two links, with the intent being to understand the concept in order to establish a nutritional baseline to eliminate potentially discordant foods. Please take the time to read them.

Gradman, I'm formulating a more detailed response to you, as discordancy involves all the concepts you talked about, with the inclusion of the PROTEOME as well...

http://www.beyondveg.com/cat/paleodiet/index.shtml

http://www.direct-ms.org/pdf/Evoluti...al%20Sword.pdf

Thanks for the links, I just had a quick glance and saw they're a bit long so I'll read them when I have more time. But looking forward to the further post you have coming, I'll be interested to read your findings.

[Weslovescats]

Have you tried apple cider vinegar? worked wonders on my stomach and digestion. Obviously you have a very rare case but you never know.(if already mentioned/tried sorry)
I wish you the best with your problem, my prayers are with you.

[ra2commando]

Hello folks, thanks very much for the replies, and the support. While I had some pretty bad swings recently, on the whole I think I am doing somewhat better. I no longer have the crazy brain fog, which is a major plus. I had it just once when I was trying out a new grain, sorghum (KLMARB will roll his eyes ) and it did not go over well - I had symptoms reminiscent of eating rice.

slobey, I wish for you to get better too. I was actually abstaining from wheat for a while now, and have had a several tests for celiac, including a gastroscopy. Unfortunately, as Gradman pointed out, doing a gastroscopy to check for celiac is pointless if you haven't had wheat for a while. I was actually referred to a different gastrologist due to elevated liver enzymes (i had no idea gastrologists deal with that, but ok). Anyway, besides that point, I unloaded my whole food hypersensitivity problem onto him. While he did say that it wasn't his specialty, he recommended doing some blood work again to rule it out. However we both seem to be in agreement that even if it is determined that I have celiac, it will not have very much affect as I seem to be reactive to foods that are free from gluten, such as rice, oils, etc.

KLMARB, I agree with you fully, which is actually why I had cut out wheat a long time ago, even before this whole rigmarole begun. I used to experience definite joint pain when eating bulgur for example. I also want to note that I have done paleo and absolutely loved it. However it was while doing paleo (just low carb actually) that I experienced the worst of these symptoms. I was extremely reactive to eggs, chicken and flax oils at the time. And through trial and error, I discovered that cheese, and now oils, as well as many vegetables are no longer OK. While I could probably get away eating just beef for some time without vegetables, I do not imagine this the most healthy way, and will carry nutritional problems of its own (besides driving one nuts, which I also can't have). So there is the posish. For some reason last several times I tried just eating lamb, I was really nauseous to boot. I always agreed with you, but I simply do not know how to make it a workable proposition. Any ideas? Not quite up to speed with the latest paleo thinking, but my understanding that fruit was ok in moderation, and again, they cause trouble for me, low FODMAP or not (e.g. bananas).

Wes, no I haven't tried it. I used to add it to salads when I ate them, but not anymore. I know it is recommended frequently for digestive aids, I might try it, but given that I had a devil of a time after eating some apples recently, I would be a bit anxious.

So far as other updates, well, after a couple of tests, my Endocrinologist informed me that I have low testosterone which I could have told her anyway, so now I am on 5g 1% androgel. I think it helps with general constitution, but not with the sensitivities of course.

I got back the results from that parasite tests that my doc prescribed. It is pointless to scan them it, it simply reads

Smear and concentration (SAF preserved sample received)
No Ova or Parasites seen.

Very useful.

Oh, back to the gastroenterologist. He seems like a smart chap, though he confessed he did not see how he could help me. He said that one of the common "buckets" for gastrointestinal symptoms is IBS, though it did not seem to be what has been afflicting me. Oh well, I'll go donate another bucket of blood to the lab and see what he can make of it.

On a different front, the original dietician I saw gave up, and referred me to someone else. I have yet to look her up. I was also looking to contact a doctor who wrote a book on CFS, which seems to somewhat loosely fit my symptoms, and she suggested I try to contact Environmental Health Clinic

The purpose of the clinic is to:
...
Provide a comprehensive multidisciplinary assessment for clients with environmental sensitivities/intolerances (and related conditions), chronic fatigue syndrome and fibromyalgia, and to make recommendations to their treating physicians regarding the management of their ongoing health care needs
Gain a better understanding of the health-care needs of those with environmental sensitivities/intolerances, chronic fatigue syndrome and fibromyalgia through participation in clinical research a better understanding of the health-care needs of those with environmental sensitivities/intolerances, chronic fatigue syndrome and fibromyalgia through participation in clinical research

This seems really promising, I am currently trying to get in contact with them to find out what I need to get a referral. It has the snag of being a "women's health clinic" but I hope that isn't literal.