Thanks heaps. I will def be going private if the wait is too long. I have done a little research but i thought a gluten intolerance and coeliac was the same lol. My iron levels are just below average apparently but she said not bad enough for me to be this tired.
DH is celiac disease that appears on the skin (gluten triggered). It does not appear when you are consuming dairy, which sounds like a separate issue for you. A DH biopsy requires active lesions (new/fresh) from consuming gluten. So, if you want to be tested via a skin biopsy you must go back on gluten. Finding a dermatologist who knows exactly how to biopsy for DH is often difficult. Be sure your Derm is knowledable and has biopsied for DH before.
Why no endoscopy for now? I bet your GI knows that your insurance will deny the endoscopy. After all, you tested negative to the blood panel. Your GI should not even ordered the blood panel knowing that you had been gluten free for months. You have to be consuming gluten daily for 8 to 12 weeks for the blood test to be accurate.
Did you ever test positive? Why did your primary diagnose you? Having the gene just means you can develop celiac disease. Some 30% of the population carries the genes. The gene test should only be used to help rule out celiac disease.
No one can say exactly how long you might be able to get a positive dh biopsy after having been gluten free as long as you have been. The Chicago Celiac Disease Center says this:
You said you had a flare of the plaque psoriasis -- that is NOT dh so why do you think the dh biopsy will show positive?
Testing positive for the celiac genes does not mean you have celiac disease. 30+% of the population have the celiac genes but only very, very small fraction of those people do or will present with celiac disease. The gene tests are only used to rule OUT celiac NOT to diagnose it.
Frankly, I can understand why your GI does not put any stock in your Primary doc's thinking you have celiac disease. A positive celiac gene and the boils in your armpits which the GI never saw and were never biopsied for dh but they resolved on a gluten free diet and so did your plaque psoriasis. That's all the GI has to go on. I don't know why you are pushing an endoscopy. If you've been eating strictly gluten free then an endoscopic biopsy for celiac will be negative.
Your PCP should have done a celiac blood panel on you back when you were still eating gluten rather than dx you based on the celiac gene you tested positive for.
I've been gluten free for a year now and my gastro wants to wait for the endocopy until I'm eligible for the colonoscopy when I turn 50 later this year. I don't think she believes I have celiac, even though I tested positive for one of the genes associated with celiac and my primary has diagnosed me as having celiac. The gluten sensitivity blood tests came back negative, of course, since I was gluten free for 9 months at that time. Why is she waiting?
At any rate, My digestive system has improved greatly, but when I reintroduced non fat Greek yogurt in my diet, the plaques psoriasis returned on my elbows. My primary believes it is dermatitis herpetiformis (as well as I, since before going gluten free, I used to get boils in my armpits) and I'm scheduled for a skin biopsy in 3 weeks. However, I eliminated dairy from my diet 4 weeks ago and the plaques psoriasis is healing like it did when I eliminated gluten from my diet a year ago. If the scar is reduced to eczema, does that mean there still are IGA deposits in my skin?
I don't want to resume dairy since I experienced a cross reaction to the casein in cheese and found lactose was on that same list. So my question is, how long do the granular IGA deposits remain in the skin in order to have a valid skin biopsy test performed for dermatitis herpetiformis?
Since it takes 1-2 years for dermatitis herpetiformis to heal on a gluten free diet and I just had a recent flare up, can I continue on my dairy free diet or should I resume eating non fat Greek yogurt for the next 3 weeks just for this skin biopsy?
Thanks Cristiana. It was Mistyx7 and night driving. Migraine type is very personal but does not appear to be closely connected to celiac or my peculiar scotomas. If you think going gluten-free has improved it that deserves a separate topic!
Hello cycling lady, have you noticed my picture is showing up as you? Have no idea why but it's rather disconcerting to see my picture and your words 😉 Do you know how to fix it? You seem to have far more experience with this board than I do
Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
Here is the link if you have never watched it.