Diagnosis Or Allergies?

[GFprincess]

Hey everyone,

I'm new to this site, and gluten-free but this is such a great resource!!

Two years ago, I was extremely sick and had every test imaginable--colonoscopy, x-rays, crohn's test etc. Because my bloodwork came back negative for celiac disease, they decided not to do a edoscopic biopsy. They promptly diagnosed it as IBS and sent me on my way because they didn't have anything else to do. After two years of being sick every single day (even though I was on four doses of bentyl every day and getting sicker) I figured out that wheat and gluten were bothering me on my own. I told my gastroenterologist, and she did another blood test that came back negative. By that time, I had taken myself off of meds and gone gluten-free.. and I was FINE for the first time in two years! So exciting. So I'm pretty sure that's what it is, even though I absolutely refuse to do an endoscopy because there is noooooo way I can go a month or more eating gluten/wheat. I am so incredibly intolerant that I can't even eat things that are contaminated (ie, when things say they are gluten-free, but are made on "machines that process other non gluten-free products").

So needless to say, I am still gluten-free and have pretty much stopped listening to my GI doctor... she did send me to a nutritionist who specializes in gluten-free diets.. so that was extremely helpful.

I am still doing tests though for allergies next week-- are these symptoms that common for allergies, or am I wasting my time? I have already had an allergy test for multiple things a few years ago, and it came back negative for everything. Well, I guess all tests are good.

Do you all know if there is any way that I could get this diagnosed another way without eating gluten and re-destroying my intestines? Unfortunately, I am adopted and can't get any family members tested. I'm also kind of giving up on my doctor because she hasn't been much help. Should I get a second opinion?

thanks!

[egardner]

I am new to all of this but I wanted to let you know that I had allergy testing two years ago before celiac disease was even being discussed. I came back positive for soy, milk, several types of nuts, and many beans. My GI Dr. now says he feels those results may be related to celiac disease. Maybe that will happen with you too. Also, I noticed you said you wont do the endoscopy because you have to eat gluten for a month beforehand. I am not gluten free yet and my endoscopy is in the next few weeks. The nurse said I should begin avioding gluten products. It doesnt sound like I should based on your experience. Do I need to continue to be exposed to get an accurate endoscopy result?

[Lesliean]

Dear gluten-free princess- I like that moniker a lot!

Have you considered Enterolab where you can be tested in the privacy of your own home without going back on gluten and also get the gene testing including DQ1 and 3 which are now accepted by some doctors as Celiac or gluten sensitivity genes? Mine was covered by insurance and the genes were DQ1 which my doctor didn't even test for.

Gluten senisivity is often misdiagnosed as IBS and the proof is that gluten-free you are well. After having my GP and asthma specialist both say I was negative for Celiacs and yet responding so completely to a GFD I had to 'go with my gut' on the matter. And then Enterolab confirmed it. I had the genes that often don't show positive on biopsy but still respond to a GFD and if not gluten-free will cause all the terrible complications of Celiacs.

Here is a website of helpful articles I also recommend:

Open Original Shared Link

Happy and healthy reading.

Leslie