Food intolerance - PLEASE help

[ra2commando]

I don't really know who to ask this.

i seem to have intolerances and some sort of adverse reactions to different foods. It manifests itself as either extreme fatigue, brain fog, problems with sleep, digestion problems and constipation.
I was travelling for the past year, and so went to numerous walkin clinics where all my blood tests were fine. Then by an odd coincidence I noticed that I had a rash on my hands, and figured out that it was due to eating eggs. Then I gradually picked out chicken, chocolate and milk. I had cut out wheat a long time ago anyway, so I knew it wasn't celiac. I got a referral to an allergist who did a scratch test for the stuff I was complaining about (eggs, chicken, etc) - and came up with nothing. When I continued to complain, i think he thought I was fibbing and stopped listening to me. At this point i was feeling extremely bad, and even started to think this stuff was psycho****tic or something.

Finally when I got back, my family doc listened, and told me to get an igg food intolerance test. On the top of the list was the stuff i was already suspecting, namely dairy (whey/casein), egg white, peas, corn, soy (of course), garlic, peanuts. But then also rice, cabbage, tomatoes, carrots, potatoes and others. Oh and guess what I've been eating up to now? I was doing an "elimination diet" and on its suggestions, I was eating rice and beef. As soon as I cut it out, I started feeling better.

SO now I have a diet consisting of beef, sweet potatoes or millet for carbs, with broccoli/cauliflower (I pick the carrots out of my vegetables) and olive oil. All would be fine, and I could potentially forgo gnawing my foot off, but I began to feel like crap in the past couple of days again. The problem with my doc is that he spends exactly 5min per visit, and seems to think that eating beef, sweet potatoes and olive oil is good enough for the rest of my life. The other problem is with this fn $325 test - it says oats are ok, but I for sure feel weird after eating them.

I am so f'd up because of this, I just want to feel good again, forget about bodybuilding. I mean sh*t, I can't even go out to eat because of this. Last time I went to the subway I felt like **** for days.

Does anyone have any experience in this and WTF to do about it? I don't think i can pull this crap off much longer.

Much thanks

[KLMARB]

I don't really know who to ask this.

i seem to have intolerances and some sort of adverse reactions to different foods. It manifests itself as either extreme fatigue, brain fog, problems with sleep, digestion problems and constipation.
I was travelling for the past year, and so went to numerous walkin clinics where all my blood tests were fine. Then by an odd coincidence I noticed that I had a rash on my hands, and figured out that it was due to eating eggs. Then I gradually picked out chicken, chocolate and milk. I had cut out wheat a long time ago anyway, so I knew it wasn't celiac. I got a referral to an allergist who did a scratch test for the stuff I was complaining about (eggs, chicken, etc) - and came up with nothing. When I continued to complain, i think he thought I was fibbing and stopped listening to me. At this point i was feeling extremely bad, and even started to think this stuff was psycho****tic or something.

Finally when I got back, my family doc listened, and told me to get an igg food intolerance test. On the top of the list was the stuff i was already suspecting, namely dairy (whey/casein), egg white, peas, corn, soy (of course), garlic, peanuts. But then also rice, cabbage, tomatoes, carrots, potatoes and others. Oh and guess what I've been eating up to now? I was doing an "elimination diet" and on its suggestions, I was eating rice and beef. As soon as I cut it out, I started feeling better.

SO now I have a diet consisting of beef, sweet potatoes or millet for carbs, with broccoli/cauliflower (I pick the carrots out of my vegetables) and olive oil. All would be fine, and I could potentially forgo gnawing my foot off, but I began to feel like crap in the past couple of days again. The problem with my doc is that he spends exactly 5min per visit, and seems to think that eating beef, sweet potatoes and olive oil is good enough for the rest of my life. The other problem is with this fn $325 test - it says oats are ok, but I for sure feel weird after eating them.

I am so f'd up because of this, I just want to feel good again, forget about bodybuilding. I mean sh*t, I can't even go out to eat because of this. Last time I went to the subway I felt like **** for days.

Does anyone have any experience in this and WTF to do about it? I don't think i can pull this crap off much longer.

Much thanks

Here's a link with the possible explanation: http://www.beyondveg.com/cordain-l/g...gumes-1a.shtml

[ra2commando]

Here's a link with the possible explanation: http://www.beyondveg.com/cordain-l/g...gumes-1a.shtml

tx, I realize this is a nod towards paleo, etc. Unfortunately this all started when I was already low carbing, and if you notice, i did mention I have bad reaction to eggs, dairy, chicken as well as cabbage, plums, peaches, and certain nuts.

Also, maybe i didn't quite convey my situation. When I say I feel like sh*t I don't mean like I dont feel like working out - i mean I really feel sick. I can't think, my brain is foggy, it is like being poisoned or something. Today I wasn't feeling well again, but forced myself to go for a walk. After 20 minutes I felt like I really needed to sit down. Not because I was out of breath, just.... tired.

this is ridiculous

[tkruise]

What's that dude? IBS?

[ra2commando]

idk, my doc said it might be IBS, but i don't really have like gastrointestinal symptoms. i get constipated occasionally, that's about it.

But I also get like these weird rashes on my hands, and also it screws with my sleep. In particular when drinking milk or using whey, I wouldn't be able to sleep for days.

[alexalive]

That sounds really rough man. I'd be seeking medical opinions other than your family doctor's.

[ra2commando]

That sounds really rough man. I'd be seeking medical opinions other than your family doctor's.

Thanks.

I would need my doctor's referral, which probably wouldn't be a problem, but I have absolutely no idea who else to go to.

I thought it was just allergies because of the occasional rash, but the allergist didn't turn up anything.

I forgot to mention that occasionally I go hypoglycaemic (turn really hungry) after some meals and I'm not diabetic.

I just don't have any ideas of what to pursue further, and my family doc seems to half heartedly help, but doesn't seem much promising. This is a large community of body-concious people, so I was hoping SOMEONE would have an idea/seen this before.

[ra2commando]

1 month bump

Anyone have any other ideas? After whining to my family doc a bunch of times (I don't think he believed me), the only diagnosis that he confirmed was Diabetes insipidus (means my body doesn't hold onto water, so I piss and drink a lot.) While this covers fatigue, doesn't address the problems with food. As an example, last friday all I ate all day was beef and millet, because I began to suspect broccoli and spinach as giving me problems. I felt fantastic all day. Then in the evening, I started to feel like sh*t again, and the ONLY thing different was that I added some avocado oil... The funny thing is that if I feel fine, my diabetes insipidus problem goes away as well, as it did last friday....

Anyway based on his test, my GP is sending me to an endocrinologist to deal with the diabetes thing, and I also asked to be sent to an allergist/immunologist to look at my rashes though I don't know what I will get out of it as I already seen one before....

This stuff's confusing, and I don't know what to do. I mean setting aside how this fks up my social life, I do not even know what I can do that will make me feel "just OK" to go about my day, rather than be spaced out.


Any ideas? What would you guys do in my situation?

[Emma-Leigh]

1 month bump

Anyone have any other ideas? After whining to my family doc a bunch of times (I don't think he believed me), the only diagnosis that he confirmed was Diabetes insipidus (means my body doesn't hold onto water, so I piss and drink a lot.) While this covers fatigue, doesn't address the problems with food. As an example, last friday all I ate all day was beef and millet, because I began to suspect broccoli and spinach as giving me problems. I felt fantastic all day. Then in the evening, I started to feel like sh*t again, and the ONLY thing different was that I added some avocado oil... The funny thing is that if I feel fine, my diabetes insipidus problem goes away as well, as it did last friday....

Anyway based on his test, my GP is sending me to an endocrinologist to deal with the diabetes thing, and I also asked to be sent to an allergist/immunologist to look at my rashes though I don't know what I will get out of it as I already seen one before....

This stuff's confusing, and I don't know what to do. I mean setting aside how this fks up my social life, I do not even know what I can do that will make me feel "just OK" to go about my day, rather than be spaced out.


Any ideas? What would you guys do in my situation?

Have you looked into FODMAPs?

http://onlinelibrary.wiley.com/doi/1...9.06149.x/full
http://onlinelibrary.wiley.com/doi/1...5.02506.x/full
http://www.mecfs-vic.org.au/sites/ww...ractGastro.pdf

Might help with some things?

There is also some good info at RPA Hospital - http://www.sswahs.nsw.gov.au/rpa/allergy/

[ra2commando]

Have you looked into FODMAPs?

http://onlinelibrary.wiley.com/doi/1...9.06149.x/full
http://onlinelibrary.wiley.com/doi/1...5.02506.x/full
http://www.mecfs-vic.org.au/sites/ww...ractGastro.pdf

Might help with some things?

There is also some good info at RPA Hospital - http://www.sswahs.nsw.gov.au/rpa/allergy/

Thanks Emma,

I read the articles, and it seems like I have been already doing that to a large extent. As an example yesterday I was eating buckwheat, sweet potatoes, beef eye of round, some tuna and olive oil. I only had some vegetables in the form of zucchini and mushrooms in the evening, but I was already feeling kind of odd by then. Today so far it's been just buckwheat, beef and millet. Weird I feel much worse today, for some reason I thought maybe there was something in the olive oil or something.
My gut actually feels fine, but the rest of me feels really weak. Right now I get tired standing for more than 5 min. This is extremely frustrating.

[Emma-Leigh]

Thanks Emma,

I read the articles, and it seems like I have been already doing that to a large extent. As an example yesterday I was eating buckwheat, sweet potatoes, beef eye of round, some tuna and olive oil. I only had some vegetables in the form of zucchini and mushrooms in the evening, but I was already feeling kind of odd by then. Today so far it's been just buckwheat, beef and millet. Weird I feel much worse today, for some reason I thought maybe there was something in the olive oil or something.
My gut actually feels fine, but the rest of me feels really weak. Right now I get tired standing for more than 5 min. This is extremely frustrating.

Have you thought about other causes (not food allergy)? Chronic Fatigue? Other diseases?
http://www.mecfs.org.au/media/resour...OverviewA4.pdf

Have you had a full set of bloods done by your physician? If not - do it.
Full Blood Count
Liver Panel
Urea, Electrolytes, Creatinine
Calcium, Mag, Phosphate
Co-ag profile
C-Reactive Protein
ESR

Immunoglobulins (with IgA, IgG, IgM levels)
ANA
Rheumatoid factor

Thyroid Function
DHEA-s
Testosterone (free and bound)
FSH, LH
Morning Cortisol

Iron Studies
B12, Folate
Vit D
Fasting Glucose
Lipid Studies (LDL, HDL, Triglycerides, Total Cholesterol)

That would be something to start with and may highlight some issues you have not seen before...

[ra2commando]

Thanks for the reply Emma.

Interesting read. I guess according to the clinical definition, I somewhat fit every criteria on that checklist. However for 2. Post-Exertional Malaise and/or Fatigue - if I feel bad a particular day, i just feel bad period. 4. Pain - only joints occasionally hurt, otherwise my there isn't a pain I can pinpoint, but the feeling of dis-ease can be very intense. Kind of like something inside is being squeezed out.
6. a. low blood pressure 100/60. b. sometimes get chills.


That pamphlet is a scary read.... Particulary seeing as to how there doesn't seem to be any definite treatment... idk, for some reason I though it would have to do with dietary stuff, but I cannot seem to find something that "works" for me.



I think my doc requisitioned every test that was on his form. He didn't see anything wrong I guess. I attached it along with the 24hr urinalysis results

On an older test, ESR was 2 (ref range 0-14 MM/H), and actually on that same test, ALT was 80 (ref range 4-43U/L). This was done at a different clinic, and the doc told me that the only abnormal thing was the ALT and to get it retested.

I had a 24 hour urine test, and I it was just borderline in that.


The only thing that I was positively diagnosed with is diabetes incipidus. This is amazing given that I went to about 4 walk in clinics while traveling away from home, and everytime they would just do the basic blood test and tell me I'm fine... So exasperating.

[mashhead]

Are you one of those guys who workout constantly?

Does intermittent fasting/warrior diet have an affect on your food intolerance? My food intolerance symptoms seems to be diminished when I fast and eat.

[Emma-Leigh]

I think my doc requisitioned every test that was on his form. He didn't see anything wrong I guess. I attached it along with the 24hr urinalysis results

On an older test, ESR was 2 (ref range 0-14 MM/H), and actually on that same test, ALT was 80 (ref range 4-43U/L). This was done at a different clinic, and the doc told me that the only abnormal thing was the ALT and to get it retested.

I had a 24 hour urine test, and I it was just borderline in that.


The only thing that I was positively diagnosed with is diabetes incipidus. This is amazing given that I went to about 4 walk in clinics while traveling away from home, and everytime they would just do the basic blood test and tell me I'm fine... So exasperating.

? what did he say about the fact that your a young, fit man and:
1/ platelets are low
2/ Red cells are boarderline low
3/ neutrophils are low

??

As with the above - when was your last deload week?
What is your eating pattern like?

[loneviking]

His RBC's are at 149, and you don't hit a critical value until you're below 135...so that's not low. Your bloodwork looks great. Problems like this can drive you up the wall, and all I can tell you is that it can take time to find the problem. A couple of suggestions:

1. Widen your scope of possibilites to other allergy sources. Do you use the same set of cooking utensils everyday? And what are they made of? Enviormental exposures--such as where you work; do you live in a newly built house..etc.

2. Keep a log of your daily activities and meals including where you were when you were eating...i.e., at home, eating out..etc.

3. Talk to any living relatives and see if they remember anyone with any similar problems.

From the lab results, I would guess you're not in the U.S. Keep looking for any docs that treat odd and unusual diseases. We have the Mayo clinics here in the U.S., as an example of what I'm talking about. Above all, don't give up and give in as there has to be an answer somewhere.

For almost three years I suffered from severe joint and muscle pain, along with weakness--especially in the hands. I was worked up and found to have C-Reactives of 36!---which is extremely high. Everything pointed to either some type of inflammatory sytemic condition, or to a form of arthritis and yet not one test was postiive for any form of arthritis. Finally, in desperation, I talked my doc into letting my try T-Cyp as a random T level had come back at 312. He sent to me to the endo. at the office and she said 'why not?'. Once I was on 200mg every two weeks, in a bit over two months time all symptoms disappeared. Turns out the Endocrinologist had one other male patient with the same symptoms that resolved with T-Cyp. Three years of misery solved with time and persistence....so don't give up!

[ra2commando]

Are you one of those guys who workout constantly?

I used to be yes, to the point of ridiculousness I cannot even begin to describe.

Does intermittent fasting/warrior diet have an affect on your food intolerance? My food intolerance symptoms seems to be diminished when I fast and eat.

I have tried it, but I think it made it worse?

? what did he say about the fact that your a young, fit man and:
1/ platelets are low
2/ Red cells are boarderline low
3/ neutrophils are low

??

As with the above - when was your last deload week?
What is your eating pattern like?

He didn't say anything They are low on previous tests as well.


As for deload, I had about 2 months of deload I think in may when I dislocated my right shoulder (windsurfing), and then another 2 when I dislocated my left one in august (fell of my bike). Yea, I know, try explaining that to your boss. I cannot say that I felt any better during deloads. In fact I was following an "elimination diet" part of which was rice. After cutting out rice I felt much much better, which is why I still think food has something to do with this.

Eating pattern is 5-6 squares, lately limited to beef, olive oil, millet, some oats, some buckwheat. I recently dropped broccoli since i thought it was causing problems, and spinach. I tried shooting for 75g fat 180g pro and probably 280-300g carbs. For some reason I thought maybe there was something wrong with using olive (I for sure have an immediate bad reaction to flax and hemp oils), so i tried really low fat days, and I thought I was doing better on those. I tend to change back and forth depending on whatever latest ideas I come up with. It is difficult because I do not know what is wrong, so I cannot even come up with a plan of what to follow.


loneviking, thanks a lot.

I will try to think of any cross-contamination, etc. The thing is it doesn't seem consistent. That's the biggest problem. I make my own meals exclusively, so there isn't even a chance someone is poisoning me (yea, I even thought of that...). Canada is correct. Unfortunately it seems healthcare here seems content to let me suffer. I am willing to go to US for diagnostics, I just need to know who/where to go to.

And thanks to for the advice not to give up, it means a lot to me.

[mashhead]

I would experiment by fasting 20 hours. Stick to coffee, tea and water during the fast (No low calorie food or sugar substitutes).

Like I said before my food intolerance is greatly diminished when I fast.

[ra2commando]

I would experiment by fasting 20 hours. Stick to coffee, tea and water during the fast (No low calorie food or sugar substitutes).

Like I said before my food intolerance is greatly diminished when I fast.

I seriously tried it, and it doesn't help

[Gradman]

OP - it's been some time since your last post, have you had any success?

Just by the symptoms you described, immediately my thoughts go to FODMAPs as mentioned by Emma but also food chemical intolerances (naturally occuring, based on the history you've given I wouldn't suspect additives/preservatives). You mentioned you've had the IgG tests for food intolerances but as far as I'm aware the consensus is still that there isn't enough evidence supporting their use for diagnosis.

By the sounds of things you've done a pretty comprehensive elimination of foods from your diet but there are still potentially some issues. Generally speaking the chemical classes responsible for the majority of these intolerances are salicylates, amines and naturally occurring glutamate. Based on the history you've given here and what you're eating I'd hazard a guess that it could be one of these chemicals giving you trouble rather than FODMAPs (that's not to say FODMAPs aren't an issue, I couldn't say without a more thorough knowledge of your diet). You mention a reaction to particular oils, and an improvement when you reduced olive oil (olive oil does have a chemical load albeit a relatively small one, but if you use enough of it then you may see symptoms), and you said you eat a lot of beef which can have a decent chemical load if hung long enough. I'm curious that you would see a response to chicken - but that would depend on how it it was prepared/eaten with.

Incidentally, what is the time course of these reactions after meals? You mentioned the oils were an immediate reaction, but what about your other reactions?

Anyway without throwing too much guesswork into the mix, my suggestion would be to read up at the RPAH allergy website, and to locate a dietitian you can get to who specialises in food allergy, intolerance, and FODMAPs and go see them. Food elimination diets are still regarded as the gold standard for diagnosis (and you've done a massive elimination by the sounds of things already). And hopefully you might get some answers.

[ra2commando]

Thanks for the reply.

No I haven't had very much success. I too have thought about salicylates, but some things do not really seem to work out really well, or there may be other problems that cause distress. For example oats and oat bran seems to upset my stomach. I am also sure of reactions to dairy, peas, wheat, millet which should be fine according to their salicylate content. It does seem to play out in other respects however.

What I noticed however is that I experience different symptoms based on what I eat. E.g. I ate millet and it was fine for a while, then I started feeling very weak and had a distinct metallic taste in my mouth. I recently tried durum wheat pasta, and again, fine for a while, then symptoms similar to millet.

So instead of rotating these things on a daily basis, I try to rotate them at every meal, trying not to eat the same thing more than 2ce in one day. For a week I felt better, but it's effectiveness started to reduce a bit.
I recognize that I am on a very limited diet, and have perhaps dug an unnecessary hole for myself. But I am anxious to even try other things out of fear that they may cause problems.

I have been eating beef eye of round and to add up the fat content I add some ground veal. I have tried very recently again some olive oil and immediately got that tired feeling with a rash to boot. I wrote to the company (colavita) asking if there are any additives or preservatives, they replied "no". This concerns me quite a lot actually as I am only taking in animal fat.... and the reaction to oil seems to be from even very small quantities. I wonder sometimes however if maybe the oil has an effect because of whatever else was eaten at the same time or close to the same time. E.g. if oil increases the absorption from the gut...

In terms of reaction time, it seems like it builds up over time and is dependent on the type of food eaten. I would say that I may notice negative effects within 1/2 an hour, but then again, I can feel unwell for several days.

About chicken I am not sure. It may be that the effects were due to something else eaten in conjunction, I just haven't tried since. I will again however. And thanks for pointing me to the RPAH website, I found their cheat sheet (http://failsafediet.files.wordpress....iet-letter.pdf) and will try to follow it's advice. Do you know how I can find someone who can help me with this in Canada?

I definitely realized I need some outside input on this, and contacted a naturopath. She suggested it was leaky gut, and recommended I take 5-10g glutamine and a probiotic. Reading up on leaky gut on pubmed I also decided to take 600mg of NAC and 60mg of Zinc.


Someone suggested that if it is an immune reaction (igg, etc) then treatment with corticosteroids will help. I have obtained them now, but I am cautious of any side effects, so just deciding whether it is worth trying or not for a week.

You seem knowledgeable about this - have you experienced this problem in the past, or is this in line with your own work? I noticed most of the research on food additives comes from Australia or UK.

[Gradman]

Yeah it is in my line of work and rarely are they straightforward cases. Especially if you are getting sent back and forth between healthcare providers and still aren't getting anywhere. With regards to known reactions to foods, for e.g. millet how are you certain it's millet causing the issue? Is it eaten alone with no other foods? Or do you have it with meat? Confounders can be hard to eliminate. Incidentally, do you drink alcohol? When you mentioned your symptoms personally I was actually leaning more towards glutamate, and perhaps some amines in terms of your food sensitivity moreso than salicylates, but again I can't be sure.

What you mention about reactions "building up", that's pretty textbook. The RPAH website has a good explanation of what happens, but essentially with any chemical sensitivity you will be able to tolerate the chemical up until a certain point. Once you're over that threshold you get the triggering of symptoms. The chemicals themselves though accumulate over the short term - and as they do so you sort of inch closer to that threshold point. It's very common to see people who might say be intolerant to amines, and they'll have small amounts of high amine food all day with no reaction, then eat a piece of chocolate for instance and that's what pushes them into an episode. In their mind, they are intolerant to chocolate but in fact all those foods were acting in concert, and that's why it can be tricky. It's also why rotating foods in the fashion that you've been doing likely won't affect a change.

As for seeing a naturopath - the diagnosis of leaky gut is extremely controversial. Most conventional medical practitioners consider it a bit oogy boogy, and certainly if there is a pathophysiological basis for it then an accurate diagnosis would involve more than the information you've provided. For me personally I'll wait till I see compelling evidence - I've read enough interesting arguments on the for side that I'm not close minded about it, but that's neither here nor there. Similar deal exists with probiotic - there's no good hard evidence to suggest using them, prebiotics are generally a better fit but they would need to be fit around your diet which is why a more clinical approach is necessary.

Btw, I didn't notice CRP on any of your blood tests, am I just missing it? I'd be interested in seeing that. I would certainly hold off on corticosteroids without knowing what CRP was like, and even so I'd be hesitant to do anything of the sort until you've done a completely thorough elimination diet. I had a look at the Canadian Dietitians' webpage, and there is a search function that you can use to locate one, but if I were you I'd ask around, try and find someone that has a reputation and preferably many years experience in the field. Oftentimes it's the small details inexperienced practitioners overlook that make all the difference.

[mashhead]

I seriously tried it, and it doesn't help

I just reread all your posts and you seem to have a reaction with oils.

Have you tried sticking to a low fat diet for more than a day? e.g. 5 consecutive days.

My minor whey allergy is always worse when I'm on a mixed diet.

[ra2commando]

Yeah it is in my line of work and rarely are they straightforward cases. Especially if you are getting sent back and forth between healthcare providers and still aren't getting anywhere. With regards to known reactions to foods, for e.g. millet how are you certain it's millet causing the issue? Is it eaten alone with no other foods?

I agree, and I thought about it, I ate it with beef (bute lesser amount in fact) millet was the only other change.

Incidentally, do you drink alcohol? When you mentioned your symptoms personally I was actually leaning more towards glutamate, and perhaps some amines in terms of your food sensitivity moreso than salicylates, but again I can't be sure.

Very rarely. Last time I decided to drink my troubles away with a glass of wine I sprung out with a fantastic rash on my arm almost instantly.

Sorry maybe I misunderstood, I thought it was salycicates that were the problem since it is those levels that they are refering to. Is there a good list of foods listed by their glutamate, amine and salicylate content? I found something that lists salicylates and oxalates here http://www.lowoxalate.info/food_list...stat_chart.pdf nothing on amines or gluatamate.

I agree about naturopaths, leaky gut and all that jazz. But after a solid year of dismissing it and feeling worse, you start feeling like you might as well try anything and see.

Btw, I didn't notice CRP on any of your blood tests, am I just missing it? I'd be interested in seeing that. I would certainly hold off on corticosteroids without knowing what CRP was like, and even so I'd be hesitant to do anything of the sort until you've done a completely thorough elimination diet. I had a look at the Canadian Dietitians' webpage, and there is a search function that you can use to locate one, but if I were you I'd ask around, try and find someone that has a reputation and preferably many years experience in the field. Oftentimes it's the small details inexperienced practitioners overlook that make all the difference.

Just got CRP today incidentaly, from a test that rheumatologist ordered. It is <0.2 mg/L (normal). Also C3 complement is 0.87 (low, ref range .88-2.01 g/l) and C4 complement is 0.10 (low, ref range is 0.16-.47 g/L), but my GP told me that's fine.

I agree about the elimination diet, it is simply that I could not find anything that I would feel fine on for any length of time. Thanks for suggesting the Canadian Dietitians's website. I do not even know what specialty deals with this. I asked my family doc, but he seems to completely ignore this side of the problem. He diagnosed my diabetes insipidus and seems to think it all stems from that.... but the desmopressin I take for that doesn't seem to make me feel better, and in any case the endocrinologist i saw told me that I am borderline fine without desmopressin anyway and essentially don't have to take it.

So I do not really have anyone to ask, I suppose I can just search for a dietitian online and see how that turns out.

I just reread all your posts and you seem to have a reaction with oils.

Have you tried sticking to a low fat diet for more than a day? e.g. 5 consecutive days.

Not really. I did eliminate all oil though and get my fats from beef or veal. I stuck with that for about 2 months so far. Some improvement, but if I introduce oil back in, even like 5ml, I seem to feel worse, and get that rash.

[Gradman]

Your complement levels are low but if your GP isn't worried then it's likely not an issue. I'm not sure if it's related to your intolerances, but your levels while low I don't believe to constitute a deficiency.

These cases are specialised even within the field of dietetics - GPs (here at least) don't need to have a particularly specialised knowledge of nutrition and oftentimes, particularly in my experience, don't. That's why I suggest searching around a bit, even if you have to call a number on that website and specifically ask for someone who has extensive experience in the field.

I wouldn't think that your DI is related to these intolerances. And certainly with regards to fat - your reactions are textbook intolerance reactions. If you had steatorrhea (fat in stools), then you'd be looking at malabsorption and a low(er) fat diet might have been called for. This is not so in your case and low fat isn't necessary.

If you do want a comprehensive list of food chemicals, the RPAH website has an elimination diet handbook available to buy. It's the handbook I use and it's explained very simply. Ideally however, you should be seeing someone with experience who can set up a proper elimination diet + challenge to pinpoint exactly which chemical class is causing you troubles and to try and identify something of a threshold so that you're not too restricted long term. If you don't mind the cost, then the diet handbook is a great resource, but if you see a professional then they will likely have resources available to give you that will be tailored to your problem specifically without extra cost.

You can use a bit of google-fu and get some information - again this is guesswork based on what I know and no substitute for an appointment with a professional, but amines (particularly) and glutamate content of foods are the tables I'd be hunting down

[KLMARB]

Sorry to hear you're still having problems. After reading the thread, and noticing how you've changed your diet, I suggest you attempt to establish a baseline of foods you don't have problems with as a starting point. The easiest would be beef. Try eating only beef and beef fat, initially in the keto percentage of one third fat to two thirds meat. See if you can go at least one week, two would be better. If you have access to beef organs such as heart and liver, etc. eat that as well. Its probably the least potentially discordant, so its worth a shot. If you're good after a couple of weeks, you start adding other foods in. This is what worked for one of my sons..

I'm curious, where do your ancestors come from? What is your ethnic composition? I'm northern european, one of my sons is north african, the other one is equatorial african, we all have different responses to different foods...

[pineapple_guy]

Mate fast for a day, then go on the Lamb and pears diet, and then slowly introduce foods until you can find out what you can eat

http://www.3fatchicks.com/the-lamb-a...mination-diet/

[ra2commando]

thanks for reply's folks. Sorry for dropping off, but for some reason I stopped getting the notification emails and had to deal with some family problems b4 holidays.
Gradman, thankt a lot for your input. I tried the RPAH elimination method, but it seems that a lot of the things that are considered "safe" still cause problems for me, s/a fish, eggs, dairy, rice, potatoes, pasta. But I still feel I drew a lot from this in terms of what chemicals can be expected in foods. I did find it interesting that they suggested peeling pears, potatoes, etc. While peeled pears made me feel ill, I tried it on different sorts of apples, and tolerated some quite well (green delicious and mutsu). It seems to me likely that I may have both a chemical sensitivity to amines and an immune reaction to foods. What is still unclear to me is how would one attempt to treat this or become desensitized?

KLMARB thanks for the advice and sorry to hear that your son is having problems as well. My problem in implementing this approach is that I am sort of limited in terms of veggies I can use as well. Nonetheless I did try it, and ate only veal, ground beef and some little veggies. (Incidentally works into what pineapple guy suggested, except I don't tolerate pears). I had trouble with it because it honestly made me nauseous, but I did feel somewhat better on the second day. I tried the same thing today, but for some reason developed a splitting headache. I was taking the subway home and a lady on the train even asked me if I was ok to get home on my own. I guess I looked pretty bad. I took some drugs and carbs and now seem to be better. Not sure why this was, I did low carb before and never had this problem. Then again, I didn't have these other problems either. Weired because I definitely want to get this to work.
To answer your question, I am also of northern european descent.

One thing I did try was corticosteroids based on the theory of hyper-reactive immune system that was suggested to me, like I mentioned earlier. I did 40mg for 5 days, then tapered down by 5mg for a total of 10days. Besides the terrible pain all over the first couple of days, I then started to feel somewhat better. Though it is hard to tell, given that this is a very powerful drug with side effects. Anyway, while I thought there were some definite improvements, on the very first day after I stopped, I tried some fish (whitefish, never had it before), and developed a fantastic rash. However I did not feel as debilitated as I did before, so the drugs must have had some effect, so it gives some credence to the idea of over-reactive immune response. But I am not sure what to do next, as I am obviously not planning to take these drugs for life and develop other complications.

I am also going to see a gastroeneterologist who will do a gastroscopy for me. Any other tests I should be doing? I was going to ask him for a lactulose/mannitol test to confirm gut permeability and maybe stool analysis.

[Gradman]

Sorry to hear the problems persist, this is most definitely not a straightforward case.. I think it is getting safe to say it may not be a food chemical issue after all - abstaining from food triggers can often cause withdrawal reactions (which mimic actual reactions almost exactly) for about a week or so, but I don't know that this is the case.

It's great to hear you are going to get a scope done, it's the next logical step in trying to work out what's going on. But one thing that I didn't get before - you never mentioned when the onset of these problems actually was? When you said you went travelling, where did you go? And have you at any time prior to the onset of these symptoms ever picked up any food poisoning or travel bugs? I mean at any time at all in the past, even going back years?

[ra2commando]

I have wondered myself, and it would be very hard to determine whether the problems I observed were related to this condition. E.g. I observed that consuming dairy gives me characteristic problems falling and staying asleep (I even take melatonin to help me sleep). Thinking back, I had the same problems falling/staying asleep about 3-4 years ago, and for sure I was eating dairy back then as for years, my #1 pre-bed snack was yogurt with cottage cheese.
In terms of other history my parents reminded me that I had some allergies when I was a kid to like eggs, chicken, etc. I tried probing but unfortunately they didn't keep any records, and even then, probably excluded certain foods for no valid reason.

If I had to brain dump all facts that were possibly even remotely relevant, in very loose order, and with not necessarily defined boundaries - about 4-5 years ago I had flu,
4-4.5 years ago I remember observing increased thirst, at first I thought it was diabetes, tested blood sugar and was fine. Blessing my fates I decided to give up my diet of boxes of cookies, chips and pizza, and dedicate my life to fitness, and cleaner eating. Definitely over this time I lost quite a bit of weight, forget the numbers but I think I was like size 36 and went down to 29... lol
What else... definitely by the mark of 2.5 years ago I had pronounced dehydration, and I was also eating a higher protein diet (225g).

That's pretty much all I can think of. I looked more into ME/CFS as suggested by emma and got some books, but it seems like one major symptom that those patients have is extreme muscular pain, which I do not have (thank God).

IDK, the only thing I am doing now is to try to rotate foods as much as possible, because it seems that new problems seem to crop up. E.g. sweet potatoes were fine, now they seem to give me notable stomach problems, especially if I eat them for more than one meal in a row. Also just this morning had a rash again after eating lima beans, which I decided to try earlier, and they seemed to be fine.... Also I was visiting my mom for Christmas and decided to try red quinoa. At first it was fine, then about an hour later, I was looking at my hands and i started to develop a rash on my forearms - I showed it to my mom and it visibly developed in front of our eyes. Another thing I discovered over the holidays is that I have an abnormally low pulse of 45-50bpm.

I don't know what to make of this, so I am trying out random ideas. Perusing the idea of "leaky gut" so taking probiotics, NAC 600mg, zinc 100mg (got idea from pubmed) for that. Recently cut out glutamine as I discovered it is typically derived from corn or wheat, and I think actually noticed some improvement afterward. Other than that, taking a multi that doesn't seem to give me a rash, Vit E, B's, A, AOR Ortho Adapt, DHEA, some tyrosine (pubmed for me/cfs) product with trace elements, Calcium-Magnesium (started during prednisone sine I was warned it washes away calcium, but kept it on), as well as NOW digestive enzymes and Betaine hcl.

It's a whacky and expensive list, and I can't say it's notably helping, but I am at a point where I am willing to try just about anything.

What drives me up the wall is that the doctors I have seen, while some are more helpful than others are quick to say that this is not their specialty and please go see someone else. E.G. Allergist - "well don't eat the foods that are making you ill". Genius. And "if you cannot say what food is making you ill, then it's probably not food". Most frustrating for me was endocrinologist since I was hoping it was some issue she could treat, but she didn't even want to test anything other than for DI. I can understand that some people have like psycho****tic issues, and I was perfectly willing to accept that, and asked my family doc if I should see a psychatrist, but he firmly said "no". Of course this didn't make me feel any better.

Edit: but just for the record, I am really thankful for my family doc as at least I can see he is really trying to help and come up with ideas. I started to feel bad going to him now as I think he may feel sorry that he doesn't know how to help.

[Gradman]

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