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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Wes R

Rashless On Rye And Spelt

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Ten years ago, I was diagnosed with gluten intolerance, one main symptom being the Dermatitis Herpetiformis on the inside of my arms. It wasn't a very thorough diagnosis, as the doctor didn't seem that bothered. No blood test or anything like that. Just an avoidance diet, that caused the DH to go away. 

 

My question is, I don't seem to get the symptom of DH, with rye or spelt, or durum pasta, so is this an indication my body is tolerating these grains? Or can it be that the DH is just typically of a wheat sensitivity and not gluten? 

 

I try to avoid wheat where ever I can and the first signal it is getting in my diet is the DH, is it safe to assume I can tolerate these other grains? 

 

Thanks 

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I'm not sure what you have. Durum and spelt are wheat.

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Yes exactly, I was told (incorrectly) they were tolerable grains for people avoiding wheat, and actually the bread I buy is no longer marked as wheat free because it contains spelt, as explained to me by my baker. Yet I still don't seem to develop DH from it.  Say if I was to have any normal supermarket wheat bread, my DH would actually begin the next morning. So there is obviously some intolerance going on? My concern is though if I continue to use these grains and they are causing problems that aren't so apparent to me as the DH from standard wheat products. I suppose a blood test would be in order, but my GP is rubbish. 

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How do you know what you had was DH?  Was it biopsied?  Did you have Celiac blood tests?  Dh is Celiac disease not its own separate disease.

 

Its possible you don't have Celiac at all?

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The weirdness of dh is boundless. I wouldn't be surprised if one grain caused you instant flare, the other didn't.

That said, if you are regularly eating gluten you could have antibody testing and a biopsy of your rash. This could help answer your question.

I'd advise eating spelt/rye daily for at least 3 months - then get blood testing and have your biopsy already set up with a dermatologist. Don't get stuck with a rash and no biopsy.

And a dx of dh is a dx of Celiac. This crap circulating about one not equaling the other (are you in the UK?) needs to stop. I put that in the same category of ideas like "you must have gastrointestinal issues and be skinny to be Celiac."

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My best guess is that you need greater amounts of gluten than are present in these grains to invoke a reaction.  Sensitivity levels vary.  I think that if you ate a whole bunch to give yourself a higher dose, or maybe even if you continue to eat them for a longer period of time, you may see a reaction.  

 

Another possibility is that it isn't DH.  Was the DH diagnosed by biopsy?  Maybe it is another skin condition with another cause.

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I used to be wheat free, not gluten free, and had loads of rye bread. After I did a gluten challenge, then cut out wheat again, before I went totally gluten-free, I found I couldn't tolerate the rye anymore. Not sure why, but I wondered if once I pushed my body to the limits with the gluten challenge, my y body was super keen I didn't bring back the gluten.

 

The suggestion to get testes as you ARE currently eating gluten is a good one.

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Look what was just posted on Facebook by the Univ of Chicago Celiac Center:

 

"While some persons with celiac disease may be clinically less reactive to barley or rye compared to wheat, the damage to the intestine is likely still occurring since they all contain gluten"

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