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?
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.
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."
Apparently there is nothing that cannot happen today. ~ Mark Twain
Probable Endometriosis, in remission from childbirth since 2002. Hashimoto's DX 2005. Gluten-Free since 6/2011. DH (and therefore Celiac) dx from ND. Responsive to iodine withdrawal for DH (see quote, above). Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!
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.
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.
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more! - Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol - Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks. - Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods. - Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI) - Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving. It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein