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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Rashless On Rye And Spelt
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8 posts in this topic

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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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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