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Celiac.com Celiac Disease & Gluten-Free Diet Forum - All Activity

The full celiac panel checks TTG IGA and IGG, DGP IGA and IGG, IGA, EMA as Jmg stated above. Your test included TTG IGA and IGA. If your IGA was low, a low on TTG IGA would be inconclusive. But your IGA is fine. A high on any one test is a positive for celiac and should lead to an endoscopy for confirmation. So I'd get tested for TTG IGG, DGP IGA and IGG and EMA since there are symptoms. Warning I'm not a doc.

I did a gluten challenge for my endoscopy and requested a second blood test after my follow up with the consultant. I never did see those results but my GP said no celiac was indicated: Which left me gluten free for life, that wasn't an option after the challenge, but with a less satisfactory diagnosis, one by omission rather than the definitive 'you're celiac' one I was expecting. Yes! I have been 'properly' glutened on a couple of occasions but on several more I've detected a change or a reaction based on what could only have been trace amounts. NCGS is as yet poorly understood but patients tend to have more neuro symptoms than digestive. That's definitely been my experience, although it was only after going gluten free that I realised quite how many digestive symptoms I had just been living with as 'normal'. Close friends and family get the full explanation. 'I have an auto immune disease similar to 'coeliac etc.' If they stay awake long enough I'll tell them about the less than perfect testing process I went through or the Columbia Med research and the possibility of a blood test soon. They can see the difference between me on gluten and off it so they understand its not all in my head* If I'm ordering food in a restauarant or asking questions about food prep etc I will often just self declare as coeliac - people are aware of that and understand those requests are medical rather than fad diet based. I don't have any problem doing this, I'm not going to claim that and then cheat on dessert for instance and to be honest I expect once the research is complete the two conditions may wind up alongside others as different faces of the same coin. In the meantime I safeguard my health and avoid getting into a detailed conversation about genuine gluten sensitivity versus faux hipster posturing! *apart from the bits which are in my head

I originally had it on my face and scalp. (22 years ago) First biopsy with dermatologist came back as folliculitis. Then when I had a new outbreak on my upper back, she was able to remove a nice clean blister and we got the diagnosis of DH. She started me on Dapsone (100mg/day) and gluten free diet. Now I take 25-50 mg/day. My understanding at the time was that DH was the skin version of Celiac. Did a lot of research on my own. I met Dr. Peter Green at a Gluten free Vendors Fair and he said that a diagnosis of DH IS a diagnosis of Celiac, even if no other symptoms. So I stay gluten-free

I was diagnosed with DH in 1995. I don't remember how long it took to clear up after going gluten-free, I was taking 100 mg Dapsone, now I take 25-50. The only true treatment is being gluten-free. Iodine will not cause a flareup but it can aggravate one. I don't mind continuing the Dapsone. It helps with the occasional slip. But I am as close to 100% gluten-free as possible.

Although this was an incredibly informative and great post, I only took exception to one thing you said and that is what I put in bold lettering above. Eating gluten free is very healthy, if done correctly. The Western American diet is very unhealthy but it doesn't have to be either. If you feel badly after being on the gluten-free diet for awhile, you either have an intolerance or allergy to something you are eating or you are not eating the right foods....gluten-free or not. I am glad they found out you had Celiac, even though most people do not want that news. The things that can happen from going a long time undiagnosed are not pretty and can cause more grief than Celiac itself.