Need Some Direction... I'm Suffering Every Day And Not Sure Where To Head

[Trademarked]

I'll summarize my situation that I described in a previous post. I've had severe itching all over my body for 8 months. In the last 3 months additional symptoms have become present. They include: rash, hives on butt/hands/feet/eblows (and sudden, but quick, pains where they are forming), hot skin, blurry vision, new headaches, stomach discomfort/gas, aching/swelling joints, loose stool (but not diarrhea). The symptoms all increase/decrease at the same time. It's rare to get only one.

I've CONFIRMED multiple reactions to peanuts, ALMOST SURE I've had reactions to dairy, and POSSIBLE reactions to soy. I've been avoiding all of them, including gluten of course, and I tend to get better for a day or two, but I almost always slip up and ingest one of them. I'm going to continue removing them all from my diet, but being a vegetarian of 15 years it is very challenging to find protein without dairy, soy, and peanuts. I felt better when I removed gluten from my diet, but I haven't noticed a sudden reaction like with the foods mentioned above.

I've been to a dermatologist who couldn't tell what the rash was, and suggested the next step to be a biopsy. (I have to pay out of pocket) I've been to an allergist who found nothing on a prick test, and nothing on a blood test (not sure what this blood test actually tested for). He suggested the next step being a biopsy of the intestine (endoscopy? again... have to pay out of pocket). I've been to a holistic doctor that suggested an (Company Name Removed - They Spammed This Forum and are Banned) test, but I didn't do it yet due to the allergist's lack of support and trust in the test. I've been to 2 general doctors who had blood tests done, with no deficiencies (worth noting I've always ate a diet rich in vegetables high in vitamins and minerals), and they state that since the allergist turned up nothing that I must not have celiac, and that it must be mental. I meditate often and even in the most relaxed state I still feel the sudden sharp pains where the hives are forming, so I've ruled out latent stress or anxiety. It's very frustrating that I have to become a medical researcher to solve my problems, but I'll bet many of you feel the same way.

What I'm looking for is direction. Where would you go next if you were in my shoes? Of course, I'm avoiding these foods as well as I can, but I really need peace of mind that I'm doing the right thing. So far I see my options as 1) Endoscopy, 2) Skin biopsy, 3) (Company Name Removed - They Spammed This Forum and are Banned) test, 4) Stomach doctor. What would YOU do?

[Pac]

I can't help with the tests, but if you suspect soy, dairy or peanuts to be a problem, then avoid them strictly for at least a few weeks (4-6). If the symptoms disappear, add them back one at a time.

You don't really need any of those three to get enough protein. Just (nixtamal) corn and beans alone will provide you with enough protein and all important amino acids. Can you eat beans, chickpeas, green/yellow peas, lentils, potatoes, corn, mushroom, other nuts? I'm a rather strict carnivore but those are my stapples when I can't get any fish, meat or eggs. Do you eat eggs?

[Trademarked]

I can't help with the tests, but if you suspect soy, dairy or peanuts to be a problem, then avoid them strictly for at least a few weeks (4-6). If the symptoms disappear, add them back one at a time.

You don't really need any of those three to get enough protein. Just (nixtamal) corn and beans alone will provide you with enough protein and all important amino acids. Can you eat beans, chickpeas, green/yellow peas, lentils, potatoes, corn, mushroom, other nuts? I'm a rather strict carnivore but those are my stapples when I can't get any fish, meat or eggs. Do you eat eggs?

I've eliminated soy and dairy for about a week now, and peanuts for about 5 days. Do beans or other nuts cause cross reactions?

[Skylark]

Well, what I did was an elimination diet. Allergy testing is unreliable, doctors are mostly useless when it comes to sensitivities, and nobody knows your body better than you do. I would not waste money on mail order allergy testing or subject myself to invasive procedures.

Pare your diet down to a few foods and see if you feel better. Then you can get a much better idea of what's bothering you when you add foods back in. As Pac says, you can get by on corn/beans or corn/rice without soy or animal protein. It's a good point about eggs - they are a lovely protein source too. It also may be time to re-examine your vegetarian diet. Nobody on this board is really able to eat the way we would like. We are forced into certain diets to avoid getting sick.

As for the gluten, it can cause underlying intestinal inflammation that lets allergens from other foods through. I was sensitive to diary, soy, and shellfish on my elimination, as well as gluten. After about six months gluten-free I was able to eat the other foods again. You are not likely to lose the peanut allergy with soy cross-reactivity, but you may be able to eat dairy again if you go gluten-free for a while.

[cassP]

im assuming you dont have health insurance? or are you like me- i have catastrophic insurance which is basically the same thing... i just have a huge bill i pay off little by little every month..

if you're like me and you need some sort of diagnosis- the easiest thing may be to first post a pic of your rash here- if it looks like DH- then u could get a biopsy next to it-

or a blood test (complete celiac panel) with a GP.

if you dont need a dx, and just want to feel better now- i would follow suggestions above for elimination diet. of course i would eliminate gluten NOW... and possibly corn, dairy & soy.

those are the big ones... after that- some have issues with nightshades... others find relief somewhat following the FODMAP diet... and still- some of us feel best mostly grain free

good luck- hope u feel better soon!!!

[Trademarked]

Well, what I did was an elimination diet. Allergy testing is unreliable, doctors are mostly useless when it comes to sensitivities, and nobody knows your body better than you do. I would not waste money on mail order allergy testing or subject myself to invasive procedures.

Pare your diet down to a few foods and see if you feel better. Then you can get a much better idea of what's bothering you when you add foods back in. As Pac says, you can get by on corn/beans or corn/rice without soy or animal protein. It's a good point about eggs - they are a lovely protein source too. It also may be time to re-examine your vegetarian diet. Nobody on this board is really able to eat the way we would like. We are forced into certain diets to avoid getting sick.

As for the gluten, it can cause underlying intestinal inflammation that lets allergens from other foods through. I was sensitive to diary, soy, and shellfish on my elimination, as well as gluten. After about six months gluten-free I was able to eat the other foods again. You are not likely to lose the peanut allergy with soy cross-reactivity, but you may be able to eat dairy again if you go gluten-free for a while.

I think I will exactly this. I need to really crack down and avoid anything in question for a significant amount of time.

im assuming you dont have health insurance? or are you like me- i have catastrophic insurance which is basically the same thing... i just have a huge bill i pay off little by little every month..

if you're like me and you need some sort of diagnosis- the easiest thing may be to first post a pic of your rash here- if it looks like DH- then u could get a biopsy next to it-

or a blood test (complete celiac panel) with a GP.

if you dont need a dx, and just want to feel better now- i would follow suggestions above for elimination diet. of course i would eliminate gluten NOW... and possibly corn, dairy & soy.

those are the big ones... after that- some have issues with nightshades... others find relief somewhat following the FODMAP diet... and still- some of us feel best mostly grain free

good luck- hope u feel better soon!!!

I do have insurance, but I have a very high deductible. If I really need something I can afford to pay for it, but I just don't want to spend needlessly on a hunch, you know? As soon as the rash reappears (its too faint to see on a camera) I will post a photo.

What's a GP? I have my blood test results in front of me and they say negative for celiac on the test. It says celiac disease panel with a few items listed, and there are some other items, then f079-ige gluten. It says all are negative. Is that a reliable test? Does it test for intolerance?

[starrytrekchic]

I would do an elimination diet. Just pick a few things (simple, unprocessed, like rice) you know you can eat and slowly add other things back in. Be sure you're actually gluten free--check all meds, supplements, foods, drinks, personal products, anything that could cross-contaminate you. You may need to be more strict with your gluten free diet--finding out if your food is made on the same equipment as wheat, etc.

That said, you have to keep in mind other illnesses. I'd keep researching the symptoms to see what else comes up. These symptoms may be food related, but they may not--they might not even be from the same thing. Have you been checked for something like Lyme Disease? It features a lot of what you're describing and can trigger Celiac, so Celiac and Lyme are sometimes found together.

[GFinDC]

There is a section of the board dedicated to DH (dermatitis herpetiformis). That could be what the rash is. Take a look and see if the symptoms match.

[Trademarked]

I would do an elimination diet. Just pick a few things (simple, unprocessed, like rice) you know you can eat and slowly add other things back in. Be sure you're actually gluten free--check all meds, supplements, foods, drinks, personal products, anything that could cross-contaminate you. You may need to be more strict with your gluten free diet--finding out if your food is made on the same equipment as wheat, etc.That said, you have to keep in mind other illnesses. I'd keep researching the symptoms to see what else comes up. These symptoms may be food related, but they may not--they might not even be from the same thing. Have you been checked for something like Lyme Disease? It features a lot of what you're describing and can trigger Celiac, so Celiac and Lyme are sometimes found together.

I haven't been checked for it, but I've read the symptoms a few times and while some are similar, the overall situation just doesn't feel like mine. My itching is my primary problem, and far outweighs any other symptoms. The joint pains and headaches are annoying, but the itching is driving me mad. If I had a regular job I would be out on disability months ago.

There is a section of the board dedicated to DH (dermatitis herpetiformis). That could be what the rash is. Take a look and see if the symptoms match.

I will take a look, thanks!!

[mushroom]

If you want to follow the formal diagnosis path, it would be interesting if you have copies of all your lab results and could post them here. There are a lot of people on this forum who are much better at reading the lab results than the doctors, and who could help you interpret what they mean. Doctors' interpretations of test results are often really off base; if you are low normal then there's no problem,; if you are a little too high, hey, that's not really a problem because it's just a little bit over. There is a reason these ranges are set, and they are normally set much wider than they should be (for fear of bringing in too many people into the abnormal range, I guess, when that is really where we belong ). At any rate, if you have these test results, and the ranges the lab uses, post them and let us have a look at them.