Finally ordered the enterolab gene test, and it shows double DQ1, double DQ5. I had expected at least one DQ1 gene because of the neuro symptoms.

Blood tests and biopsy were negative, but I had been back on gluten only for five weeks anyway back then.

Quite honestly, looking at all my diagnosed celiac friends and family, I can safely say, being double DQ1 is worse. None of them are sensitive like me, all eat "gluten free" labeled foods, plus other grains, I can't, not without a massive gluten reaction.

Do you mean DQ1, subtype 5?

yes.
yes, I am very sensitive.
I also react to citric acid if it is made from mold, and MSG. Not much, but annoying. And I have more reactions from casein than gluten.
And I have no diagnosis.
I have DH too, no diagnosis, and hashimotos, I do not know if I have that diagnosis either...

DH is an automatic diagnosis of celiac disease. From what I understand, DH is specific to gluten intolerance. Research DH + gluten and read all the hits you get. I have not been officially diagnosed with celiac (my PCP believes I am celiac though), but I have had DH breakouts a few times in my life. In time, I think they will be diagnosing double DQ1's as celiac, and probably the hardest hit. We get a double dose of glutenintolerance, that which doesn't bother most celiac's will make us very sick, and for weeks on end.

Try eating all natural foods, nothing processed, stay away from grains, dairy usually is an issue too. It also sounds like you may have a yeast overgrowth issue too. I didn't think I did, but recently found out I do, and have been eating a yeast free diet (no sugars, no canned fruits, no sweeteners, only stevia), you may want to read up on it too. I have been gluten free for nearly 10 yrs, and didn't figure all this out until now. There is a good forum for those of us who are super sensitive www.glutenzap.com check it out.

Thank you.
i make everything from scratch anyway.
i do eat some sugar and fruit, not much.

Yes, I tested medium high for IgG antibodies to yeast.
I react to citric acid, which is made frok mold.

When I bake bread, which is not often, I use baking powder.

I am on a yeast free diet for yeast overgrowth now. No sugar, no sweeteners (except Stevia), no dairy, nothing white, is what they say. I went on this diet March 1st, and had a significant yeast diet off begin in the 2nd week, which lasted for at least 3 weeks. I had to give up dairy last summer, after using it for my entire life, I am 54. I read that butter is ok for us, since whatever that causes issues in dairy has been removed from the butter...2 weeks of butter, and constipation set in...so, I guess that's out too. I honestly do feel better on the yeast free diet.

No sweeteners includes sugar, any sweeteners (Equal, Splenda, Sugar Twin, etc)high fructose corn syrup, any syrups, maltodextrin, anything ending in "tol". I wish I had known about this years ago, I think things would of been much different for me. I also wish I had known there was still gluten in gluten free foods, I would never have touched them, had I known.

Mold foods are out of my diet too. Mushrooms are very bad, peanuts are a fungus food (and I stayed with my peanut butter for such a long time, thinking it wasn't hurting me)cheeses are a mold too...many nuts can be bad...they say to roast them at 350 degrees for 8-10 minutes to get rid of the mold.

I eat apples and pears, always peeled, if there is anything bad on them, it will be on the peel...peaches too. All fresh, never canned, never with added sugar. I slice up an apple, and drizzle almond crumbs on it, very good that way. Pears are plenty sweet without anything added.

Feel free to email me if you would like, just put "neurotalk" in the subject line so I know it's safe to open... darlindeb25@aol.com

Deb