Unusual Celiac Case

[trilobitian]

Hello all. I'm new to the forum (I have been perusing it for a few months now but never registered) I am 25 years old and was just diagnosed with Celiac disease in February.

I started going to the Mayo clinic because I had chronic hives (the second time in 4 years that I have had these hives that just don't go away.) My doctor and I spent many weeks and months trying to figure out why I had these hives. In the processes we discovered my immune system was in really bad shape. And then one of my tests came back positive for celiac sprue. So I was transferred to a new doctor who did the upper endoscopy on me and declared that yes, I did have celiac disease. So I've been gluten free now since then.

I went back to Mayo about a month ago and discovered that my immune system is not improving, it is continuing to drop.

My hives area also not going away.

We're beginning to think that these are not related to the celiac at all.

I have found that I seem to have a sensitivity to Annatto. So I've cut that out of my diet. My hives definitely get worse after I have that. And now I'm suspecting soy. I've read that soy has been discovered to have a lot of gluten contamination from the GROWING process. Ugh. (This genetic modifying and monoculture the United states loves so dearly is out to kill us celiacs I swear) So now I think I need to watch my soy intake.

As of now, I've had hives for over a year now, straight with only a few weeks here and there where I had some relief from them.

My doctors are suspecting possible common invariable immunodeficiency and I'm going to be (hopefully) finding out on Friday if I do have that, and what it means for my medical future. (expensive- that's for sure)

I used to work at an Environmental Learning center where our meals were served in a dining hall and I couldn't control all of my diet. I have found that one of the best things for me coping wise was to get my own apartment with my own kitchen. I know that it is cheaper to have roommates. But it was something I just could not deal with learning to cope with this diet and having to deal with roommates who want to have their own diet and all the possible cross contamination. I feel in control of my diet and I know that if I get a gluten attack, it was my fault and much easier to determine what caused it. It's also been a lot easier when I don't have to watch other people eating things I can't eat and smelling all that yummy food that I can no longer have.

I'm so glad I was diagnosed after college though! I think college would have made coping with this disease TEN times more difficult. And it's hard enough as it is!!!

Anyone else out there with some unique symptoms and other intolerances?

Crystal

[gf-soph]

Hi Crystal

Sorry to hear that the celiac diagnosis has not helped with the immune problems. I certainly don't have a complete answer, obviously it may not be related at all, but a couple of things caught my attention, particularly the hives and the mention of annatto.

I am currently on an elimination diet developed by the Royal Prince Alfred hospital here in Sydney, and I remember reading that their diet was developed in response to patients with idiopathic urticaria and angioedema, which from my understanding includes hives without a known cause. I also know that the diet they developed it very different to most other elimination diets. It eliminates most preservatives and additives (annatto is one that comes up a lot as one to avoid), as well as food chemicals called salicylates, amines and glutamates.

If you google "RPA elimination diet" it will take you to their page, the link to the development of the diet is Open Original Shared Link (i hope it works as I'm not sure about the rules of posting the links).

I'm doing it with the help of a dietician, and so far it has helped me with some of my more persistent issues, but it's pretty complicated. I'm not sure how you might get access to the full program and food lists, as RPA don't just sell the handbooks to people, but your dr may be able to access the information for you. If you search for 'failsafe diet' it is an adaptation of the RPA elimination diet, and it may be able to give you more of an idea about how to start if you want to give it a try.

Hope you find some answers soon!

[trilobitian]

Hi Crystal

Sorry to hear that the celiac diagnosis has not helped with the immune problems. I certainly don't have a complete answer, obviously it may not be related at all, but a couple of things caught my attention, particularly the hives and the mention of annatto.

I am currently on an elimination diet developed by the Royal Prince Alfred hospital here in Sydney, and I remember reading that their diet was developed in response to patients with idiopathic urticaria and angioedema, which from my understanding includes hives without a known cause. I also know that the diet they developed it very different to most other elimination diets. It eliminates most preservatives and additives (annatto is one that comes up a lot as one to avoid), as well as food chemicals called salicylates, amines and glutamates.

If you google "RPA elimination diet" it will take you to their page, the link to the development of the diet is Open Original Shared Link (i hope it works as I'm not sure about the rules of posting the links).

I'm doing it with the help of a dietician, and so far it has helped me with some of my more persistent issues, but it's pretty complicated. I'm not sure how you might get access to the full program and food lists, as RPA don't just sell the handbooks to people, but your dr may be able to access the information for you. If you search for 'failsafe diet' it is an adaptation of the RPA elimination diet, and it may be able to give you more of an idea about how to start if you want to give it a try.

Hope you find some answers soon!

Thank you so much for that link! I will certainly talk to my doctor about it on Friday. I've had others suggest to me "The elimination diet" but when I tried to research it, I couldn't find anything very specific.

[GFinDC]

Most soy sauce has wheat as an ingredient, just check the labels. There are some wheat free brands though. I don't eat soy at all. At least not intentionally.

[Takala]

Hang in there. Before I went grain free, then refined it to just gluten free, I used to blotch up all the time.

Two things to check- for Lyme disease, which can trigger celiac.

Other allergies. I am allergic to certain grasses and hays, and if the dog rolls in the stuff and then I pet the dog, I blotch up, which I can get rid of pretty fast if I then rinse off. I have the inside pets on foods that none of us are allergic/intolerant to, as two of the dogs are allergic to wheat. I don't want the cat licking me unless she is eating wheatless food.

When the dog we got from the pound was scratching himself silly, the vet said put him on an elimination diet to see what happens, which was rice, chicken/turkey, and cottage cheese. I knew to read the cottage cheese label real carefully, and sure enough, the dog was very happy within a day. The dog is okay with dairy. I would have tried taking that out next. (The dog also got really interested when we started cooking up a big pot of rice, which was the other hint that he was used to eating it ) We then tried adding corn and had no reaction, so it was likely the wheat, and we have avoided wheat for them (the other dog is part bred the same breed) and it worked out. Soy bothers so many dogs we just avoid that for them also.

We now feed a allergy formula dog food that doesn't have certain ingredients, one flavor is potato based, another rice based, etc, for the starch/carbohydrate.

Elimination diets are when you pick just a set number of ingredients and eat that for a week to see what happens, and then rotate. So you would maybe pick one grain, one or two fruits, one or two vegetables, and a single meat for the week- very boring but sometimes it works. When I was trying to figure this out I learned I could go a very long time on apples, almonds, and green tea.

You can also have allergies to cosmetics or things like newly installed carpeting or laundry detergent. Latex family is another weird one. Also check for any medications that might have gluten.

[trilobitian]

Hang in there. Before I went grain free, then refined it to just gluten free, I used to blotch up all the time.

Two things to check- for Lyme disease, which can trigger celiac.

Other allergies. I am allergic to certain grasses and hays, and if the dog rolls in the stuff and then I pet the dog, I blotch up, which I can get rid of pretty fast if I then rinse off. I have the inside pets on foods that none of us are allergic/intolerant to, as two of the dogs are allergic to wheat. I don't want the cat licking me unless she is eating wheatless food.

When the dog we got from the pound was scratching himself silly, the vet said put him on an elimination diet to see what happens, which was rice, chicken/turkey, and cottage cheese. I knew to read the cottage cheese label real carefully, and sure enough, the dog was very happy within a day. The dog is okay with dairy. I would have tried taking that out next. (The dog also got really interested when we started cooking up a big pot of rice, which was the other hint that he was used to eating it ) We then tried adding corn and had no reaction, so it was likely the wheat, and we have avoided wheat for them (the other dog is part bred the same breed) and it worked out. Soy bothers so many dogs we just avoid that for them also.

We now feed a allergy formula dog food that doesn't have certain ingredients, one flavor is potato based, another rice based, etc, for the starch/carbohydrate.

Elimination diets are when you pick just a set number of ingredients and eat that for a week to see what happens, and then rotate. So you would maybe pick one grain, one or two fruits, one or two vegetables, and a single meat for the week- very boring but sometimes it works. When I was trying to figure this out I learned I could go a very long time on apples, almonds, and green tea.

You can also have allergies to cosmetics or things like newly installed carpeting or laundry detergent. Latex family is another weird one. Also check for any medications that might have gluten.

Well unfortunately with the many attempts I've made with allergy doctors, they want to take me off of all my many medications that we use to keep my hives under some control so I am miserable for about two weeks straight. And then I go in to see the doctor and they don't do any allergy tests and tell me I don't have allergies. This has happened twice. But the allergy doctor I'm with right now at Mayo says that it isn't possible for me to have allergies because I have a total IgA deficiency and I guess when you have that you can't have allergies?

I don't know. Because of the total IgA deficiency I have also been told I can't have DH. But since going gluten free, I have had two cases that looked and felt suspiciously like DH. I called my celiac doctor at Mayo on that and he was perplexed to say the least. Both he and my allergy doctor have both come to the same consensus that I can't have allergies and I can't have DH if I have an IgA deficiency. And that test is most certainly correct as we have taken the test for IgA deficiency about 5 times now (Along with the other parts of my immune system that have been showing to be dropping to deathly levels since last summer- SCARY!)

Needless to say, I've got a new appointment with a dermatologist to determine if I am indeed having DH reactions- even though I don't go in until the end of August and the rash has cleared up already (even though it took about a month) I know that if they ask me to suffer off of my medications for two weeks again, I will be demanding that they actually do allergy tests on me, because I have suffered needlessly twice now and I refuse for them to play that game with me again.

[Marc1]

Well unfortunately with the many attempts I've made with allergy doctors, they want to take me off of all my many medications that we use to keep my hives under some control so I am miserable for about two weeks straight. And then I go in to see the doctor and they don't do any allergy tests and tell me I don't have allergies. This has happened twice. But the allergy doctor I'm with right now at Mayo says that it isn't possible for me to have allergies because I have a total IgA deficiency and I guess when you have that you can't have allergies?

I don't know. Because of the total IgA deficiency I have also been told I can't have DH. But since going gluten free, I have had two cases that looked and felt suspiciously like DH. I called my celiac doctor at Mayo on that and he was perplexed to say the least. Both he and my allergy doctor have both come to the same consensus that I can't have allergies and I can't have DH if I have an IgA deficiency. And that test is most certainly correct as we have taken the test for IgA deficiency about 5 times now (Along with the other parts of my immune system that have been showing to be dropping to deathly levels since last summer- SCARY!)

Needless to say, I've got a new appointment with a dermatologist to determine if I am indeed having DH reactions- even though I don't go in until the end of August and the rash has cleared up already (even though it took about a month) I know that if they ask me to suffer off of my medications for two weeks again, I will be demanding that they actually do allergy tests on me, because I have suffered needlessly twice now and I refuse for them to play that game with me again.

I have an IgA deficiency, and I definitely can get allergies. The idea that people with IgA deficiency cannot get allergies is not supported by the national institute of health last time I checked. Your doctor could be basing that idea off research that was disproved a couple years back and he simply has not kept up to date. What you might be running into is a vitamin or mineral shortage. Certain minerals like magnesium and certain vitamins like the B complex among others are need for the body to function properly and damage from celiac disease can limit absorption. Worse, some vitamins are produced in the intestines from base materials; any damage from celiac disease can stop this production even if you are absorbing the base elements correctly. I had this bad case of acne that would not go away for months until I went on a vitamin supplement. The problem is finding out which vitamin or mineral you are short of and why you are short of it. Going on a supplement will not do you any good if you are taking the wrong vitamin or mineral and may even harm you if you are end up taking too much of a vitamin or mineral you are absorbing correctly. I would ask your doctor for a blood test that tests for all vitamins and minerals, not just the big ones, since if it was a well-known vitamin or mineral you were missing, your doctor would probably already have recognized the symptoms. There are literally hundreds of vitamins and minerals we take in every day, many of them is so minute a quantity that most people do not even realize that they are needed to preform vital bodily functions.

Of course I could be wrong. I do not know you or your medical history and am only basing my advice off what worked for me. Some of the other posters might be right about an infection. Often times the weird cases are from multiple problems interacting. Good Luck.

[dilettantesteph]

Try eating only whole foods to avoid possible cc during processing.