Thank you so much, cyclinglady. Yes, very helpful!
I want to tell her the exact tests I want. I am thinking I should request:
Total serum IgA
Do you agree? I am on a super high-deductible health plan, so I end up paying for all of these, so I don't want to go overboard while still being as sure as I can be.
Not related to celiac (as far as I know) but I was also reminded that my sister has the MTHFR gene mutation (homozygous C variant), so I need to ask her to be tested for that as well... She is going to think I am nuts, and that is fine. ;)
Oh no! One celiac test? Only one was given? The TTG IgA, I assume or you just got the Immunoglobulin A (IGA) test? You should insist on the complete celiac panel. You should also know that some people with DH do not test positive on any of the celiac blood tests. If your skin biopsies are negative, make sure they biopsy was taken correctly — not on the rash, but adjacent. This mistake is make ALL THE TIME by dermatologists.
Because of what you disclosed in another post, you should consider asking a Gastroenterologist and not your GP (who seems to know little about celiac disease and testing) why you had small intestinal damage (per initial biopsies) went gluten free and later a second biopsy revealed a healed small intestine, yet you were not given a celiac diagnosis. Later, it seems you started consuming gluten again or were getting traces of gluten into your diet, and now may have developed or worsened your DH.
“Hi, I have been trying to get a celiac diagnosis for awhile now. I had an endoscopy years ago that showed flatted villi but the biopsy said "possible sprue or possible duodonitis." I went g.f. and had another test a few years later. The villi were normal but I had what I thought was a d.h. rash. The dermatologist said it did not look like d.h. and said it was just eczema.
To test myself, I started eating gluten again. I have occasional bowel issues but not like I had years ago.”
Now my legs look like I have d.h. again.”
You can go gluten free and safely prepare gluten in your house. I did this for 12 years when my hubby was gluten free and before I was shockingly diagnosed. You just can not ingest gluten. The only thing you need to avoid is flour because flour has been documented to stay in the air or fall on surfaces for up to 24 hours (one reason not to have a coffee in a bakery or donut shop — sit outside!) You can cook pasta, make sandwiches, open a box of cookies....whatever! Just do not use loose flour.
If he needs a birthday cake, have a friend bake it at their house. Or he may love a gluten-free cake. Soon I will be baking my kid a gluten-free Chocolate Mayonnaise Cake for her birthday and she is not celiac! She actually prefers it to a gluten-containing bakery cake!
There are plenty of alternate grains besides wheat, barley and rye for your son. Think outside the box.
I have said this before you should get your son tested for celiac disease. I have allergies and I never had a positive for wheat. Wheat allergies and celiac disease are separate issues. He may very well have celiac disease. Why? Because his mom had a positive intestinal biopsy and went gluten free and then had a repeat intestinal biopsy and healed. I am not a doctor, but that is pretty damning evidence.
Maybe you need to consult with an attorney who specializes in malpractice. You appear to have been put through a diagnostic nightmare.
I hope this helps. Mothers need to take care of themselves first, so that they can help their children. It is like the oxygen masks on an airplane. Adults are instructed to put their mask on first before assisting others (e.g. children).
Some people with DH do lousy on the blood antibody tests. They hoard all their gliaden antibodies in their skin instead of their bloodstream. So they may test negative on blood antibodies but still have plenty of antibodies in the skin. Sometimes they even flunk the endoscopy tests for the same reason.