Flare-Up (Gluten or Cross Reactivity?)

[Emmy208]

Hey there, I’ve posted on this forum a few times before. For anyone who doesn’t know, I have not been diagnosed with celiac disease but have noticed that a GFD has resolved/shown improvement in a number of symptoms I’ve been experiencing (severe chronic fatigue, itchy blistering rash, migraines, muscle pain, C and D, steatorrhea/yellow stool, and white spots on my fingernails). My blood tests for celiac (TTG-IgA, EMA-IgA, DGP-IgA/IgG) were all negative, but I suspect I have IgA deficiency and/or other immunodeficiencies. I’m getting a blood test for IgA deficiency in about a week and then meeting with a GI doctor to hopefully schedule an endoscopy/biopsy. Trying to get in with a derm to get my rash biopsied but the wait time is extremely long. 

Anyways, lately I’ve been experiencing a random flare up of my symptoms. Last week, on Tuesday, I started feeling sick and the itchy rash, which had healed up, came back. At first I thought maybe it was caused by something other than gluten because yellow stool is usually how I know I’ve been exposed to gluten (since it went away a month into GFD and has come back every single time I’ve been glutened). However, on Friday I had yellow diarrhea and my stool has continued to be yellow ever since then. The rash was extremely itchy last night but today it seems like it is finally starting to heal up. I’m just honestly not sure what the source of gluten would have been if I was glutened. I’m in college right now, so I am not making my own food, and it’s definitely possible that some gluten got into my food. Most of the dining hall staff seem to take allergies seriously, but some of the newer members of the crew are not as knowledgeable—I’ve caught foods being mislabeled as gluten free twice this year already (first a wheat pasta and then a breaded chicken, I caught both of those because it seemed strange to me that they’d have gluten-free versions of those foods available for everyone in the dining hall to eat since gluten-free food is expensive). It’s also highly possible CC has happened—I’ve seen students drop wheat pasta by mistake into nearby meat dishes (ugh). I also had to stop using the allergy section toaster and gluten-free fridge condiments after I got sick from other students cross contaminating them. 
 

On the other hand, could it be cross reactivity? I do have lactose-free dairy products as well as oats (but only certified gluten-free oats) sometimes, but in the past I‘ve had no symptoms after consuming gluten-free oats and lactose-free dairy. Can your immune system suddenly start cross-reacting to foods when you could tolerate them before? And can cross reactivity cause intestinal damage/malabsorption? 

The other possibility is that it could be a condition other than celiac that is triggering the malabsorption symptoms. However, I don’t think I have SIBO since my doctor told me SIBO doesn’t just heal on its own. Maybe I could have Crohn’s since it can come and go, it’s just that I’d think I’d have b12 deficiency instead of iron, d, and zinc since Crohn’s usually affects the ileum. It also seems like gluten is the main trigger of my symptoms. Can Crohn’s be mainly triggered by gluten in people with NCGS? 

Any ideas would be greatly appreciated! 

[Scott Adams]

I think the dining hall is the most likely source of contamination, as eating out is the main place that gluten contamination can occur. There is no way to verify this, but if the staff isn't trained properly, it would only take a basic mistake, like cooking gluten-free pasta in shared water with wheat pasta to cause an issue. 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[Emmy208]

On 9/27/2023 at 8:22 PM, Scott Adams said:

I think the dining hall is the most likely source of contamination, as eating out is the main place that gluten contamination can occur. There is no way to verify this, but if the staff isn't trained properly, it would only take a basic mistake, like cooking gluten-free pasta in shared water with wheat pasta to cause an issue. 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

Yeah, unfortunately I think you’re right. I met a girl who has celiac yesterday and she told me she’d been getting sick from eating from the “gluten free” food options at the buffet and only feels better when she gets food made by the dedicated allergy chefs (there are two of them and they are actually informed about preventing CC, but the rest of the staff are hit or miss—hence the labeling of wheat pasta and breaded chicken as gluten-free). Ironically, each time I’ve gotten extremely sick (happened the first week of school and now this week), I’ve felt so nauseous that I’ve only eaten bland foods and therefore had to avoid the dining hall food. After avoiding the dining hall food for some time, my yellow stool went away and I began to feel better, so I went back to eating at the dining hall (and not long after, started to feel sick again). This time, I finally realized that it is the dining hall food that has been making me feel sick.
 

I am going home for break next week, and in addition to seeing a GI doctor next week, I also will be seeing a dermatologist (thank goodness). I’m guessing that I will show villous atrophy on the endoscopy/biopsy given that I have steatorrhea and deficiencies in vitamins usually absorbed in the duodenum (iron, d, and zinc). However, I was also thinking I’d get my gluten-induced rash biopsied around the time of the endoscopy since a diagnosis of DH would confirm that the villous atrophy is caused by celiac disease. Is a gluten challenge of 2 weeks long enough for a DH biopsy? I know ideally I’d do a longer gluten challenge, but I get a breakout of the rash and awful GI symptoms from just CC so I think that a two week gluten challenge is probably the most I can do. 

[Scott Adams]

I believe a biopsy for DH can be done whenever the blisters appear, and it's important to note that the dermatologist must follow a specific protocol for how to collect any samples--I believe skin samples must be taken right next to a blister.

[Emmy208]

1 hour ago, Scott Adams said:

I believe a biopsy for DH can be done whenever the blisters appear, and it's important to note that the dermatologist must follow a specific protocol for how to collect any samples--I believe skin samples must be taken right next to a blister.

Ok, thank you! I hope it’s possible that I’d be able to do a modified gluten challenge for the endoscopy and DH biopsy. I get steatorrhea and the rash from just CC so it’s possible 1 week could be enough to show some significant damage. Honestly, though, I’d rather not risk a false negative so maybe I’ll do a 2 week gluten challenge to be safe. I might also want to try and get on iron supplements in addition to zinc and D so I don’t become anemic (I had normal hemoglobin but low ferritin on my blood test in July, and I am concerned that my iron deficiency might be getting worse, given that I’ve been having steatorrhea from CC and am sometimes having anemia-like symptoms such as shortness of breath and side stitches). Then again, though, if my intestines are so damaged they can’t absorb my other prescription meds, they probably won’t absorb iron supplements either…ugh. 

[Scott Adams]

If your doctor recommends a two week gluten challenge, definitely do that. Most people with DH aren't willing to go through such a challenge due to the uncomfortable symptoms, and how long it can take DH to go away after going gluten-free. In any case, let us know how it goes.

[Emmy208]

3 hours ago, Scott Adams said:

If your doctor recommends a two week gluten challenge, definitely do that. Most people with DH aren't willing to go through such a challenge due to the uncomfortable symptoms, and how long it can take DH to go away after going gluten-free. In any case, let us know how it goes.

Ok, we will see what they say at the appt. 🤞