Itchy Rash - New Symptom

[Eggs]

Hi all,

Celiac disease has been on my radar for a couple of years, and I have a new symptom I'd really appreciate opinions on. :)  Sorry for the long back story! I'm maybe a little bit venting, but also the context is kind of important!

The context - I was diagnosed with Sjogren's (another autoimmune disease) a few years ago based on fatigue, migraines, weight loss (down to my 12-yr old weight - yikes!), and dry eyes. One of the first things I did after diagnosis was cut gluten out of my diet because I read that helps some people with Sjogren's.

Well, I felt like a freakin' superhero! Everything except my eye dryness improved immediately and eventually disappeared, leaving me healthier than I'd felt in years. And, what an unexpected bonus, the constipation I had had my entire adult life disappeared. Based on that, my doc referred me to a gastro. I went back on gluten for 4 weeks. Gastro said it didn't have to be longer since we were doing blood work and biopsy. Blood work came back a little high for antibodies, and after the biopsy, the doc who did it told me to expect a positive - that he had seen damage consistent with celiac disease. Since I know that damage isn't always visible, I thought for sure I had celiac disease - only to get a negative on the biopsy.

Over the last couple of years I've had gluten a couple of times (usually cross contamination) because I keep being told I don't have celiac disease and that there's no point in me being on a strict gluten free diet. But sometimes when I eat something risky (usually at a restaurant), I pay - migraines, fatigue, etc.

I don't have these symptoms at all when I stick to a 100% safe gluten-free diet. Now, I flubbed up over the weekend. I really wanted this pizza at a place that offers a gluten-free crust. The situation was a recipe for cross-contamination, but I thought I don't need to be on a strict gluten-free diet. So wrong. Fatigue, migraines every day since, and an extremely itchy bumpy rash all over my upper back that's making its way toward my front.

Is there a way to know if this is DH, and would there be a benefit to having it biopsied? I know I don't have the typical gastrointestinal symptoms associated with celiac disease, but has anyone else had to go through the testing more than once? I was told the biopsy was absolutely foolproof, but most of the people I know who are "gluten intolerant" but don't have celiac disease don't break out in a rash when they encounter cross-contamination!

Thank you so much for any input! And for reading all the way to the end...

P.S. I've also had a baby since my Sjogren's diagnosis who died of a birth defect that can happen to anyone but is associated with nutritional deficiencies (I eat a healthy, varied diet) and...you guessed it, untreated celiac disease. 

 

[bookmuse]

Hi Eggs- I sympathize with your frustration. I self-diagnosed DH about 4 years ago now and I have tried very hard to get a dermatologist to do the biopsy so I can get an official diagnosis. The biopsy for DH is not a routine biopsy at all. I've had two biopsies and both told me I likely just had flea bites (even with no pets)! This is despite having classic DH symptoms with the tiniest amount of gluten such as 1/8 tsp. of soy sauce. I'm hoping to try another dermatologist as soon as I can get my primary care doctor to refer a different one through my HMO plan because, like many celiacs, there's no way I'm going on a full gluten-filled diet in order to undergo the small intestine biopsy. There are several sites that describe how this biopsy must be done- on normal skin NEXT to the vesicle (bump). I gave the dermatologists a similar article to the one below but I don't think they ever read it before my appt. It's rare to find a dermatologist who is familiar with DH. Good luck & let us know how it goes.

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