Still Having Stomach Problems

[sfm]

Recently, after being mostly gluten free (besides a few accidental glutenings) for over 6 months, my stomach started acting up again. The symptoms were nowhere near as severe as when I eat gluten, but they were similar, the nauseau, pain, bloating, diarrhea, just scaled down somewhat. I know that others on this site have mentioned similar experiences, so I thought I might have other intolerances besides gluten and casein.

I began to see a connection between tree nuts - walnuts and macadamias (of course my favorites). The last time I tested it on walnuts, a few hours after I began to feel sick, I got hives - so I have an appointment with an allergist to look more into the food allergies side of things...

But I also wanted to make sure that there isn't something else going on, so I decided to try another gastroenterologist. Last year when I went to a gastro (before going gluten free), he told me I had acid reflux and gave a scrip for prilosec - which I was already taking!

So I was a little pessimistic about seeing this doctor yesterday. But I told him from the start about my experience with the other doctor. I told him that I decided to try going gluten free because my daughter had blood tested 'inconclusive' for celiac, and the symptoms for celiac sounded like they were written about me . He actually listened to what I had to say, looked at my test results- both the bloodwork and the enterolab - did a quick exam, then told me he thought I should have had the small bowel biopsy anyway, despite negative bloodwork, because my symptoms had improved off gluten.

So he would like to do the small bowel biopsy, but he also wants to rule out other conditions with similar symptoms. He said he knows that celiac disease is extremely underdiagnosed, but that he would not want me to have to restrict my diet if I don't have to. So he will also do a colonoscopy to rule out microscopic colitis, and he wants to have a stool test done to make sure there's no parasites.

I feel so much better about gastroenterologists! I know that there is a good chance the biopsy may come back negative, but I refuse to go back on gluten because I know how sick it makes me. So I'll take a chance on that one. At any rate, he seems to be very thorough and open-minded and not just throwing an acid reducer at me.

And if everything comes back negative, and he wants to tell me it could just be IBS and I should try eating gluten again, I'll just say, No thank you...!

So enough rambling out of me, just wanted to share!

Sheryll

[Ursa Major]

Sheryll, he sounds like a better doctor than most for sure. But there is little point in looking for celiac disease with a biopsy, because after six months gluten-free it is almost a certainty that it will come back negative. But it is still a good idea to rule out other problems.

Obviously gluten is a problem, and I am glad you have no intentions of going back to eating it, no matter what anybody says.

[ekdumas19]

I too went back to a gastro after being diagnosed with celiac disease 3 years prior. I had felt after my diagnosis but something still wasnt right. He recommended a biopsy because he was worried that because I never had one to begin with and only got diagnosed by blood work, that I wasnt really a celiac. And of course it came back negative. I was upset about this because i wasted good time and money on the procedure. And funny you should say you were on prilosec before you were diagnosed, I was too! When I was in high school I started having lots of stomach problems, and my doctor at the time thought it was acid reflux and lactose intolerance, thus the prilosec. Anywhoo...after that last gastro experience I just decided to figure things out for myself. It turns out, after going lactose free for awhile, then soy free, I found out that soy was the culprit. My reactions aren't as strong as too gluten, but I get nauseous, gassy and bloated. I used to drink soy milk everyday since high school, no wonder I still felt sick! So I would just look into other intolerances, because now with that I stay away from soy and gluten-I feel almost cured!

[aikiducky]

So he would like to do the small bowel biopsy, but he also wants to rule out other conditions with similar symptoms. He said he knows that celiac disease is extremely underdiagnosed, but that he would not want me to have to restrict my diet if I don't have to. So he will also do a colonoscopy to rule out microscopic colitis, and he wants to have a stool test done to make sure there's no parasites.

You could ask them to look for signs of past inflammation in the small intestine... like abnormal cells in the intestinal walls and other small changes that may still be visible even though your intestines may have mostly healed in the six months. That might be a clue that there has been celiac damage before you went gluten free.

Pauliina

[tom]

Yay it's nice to see some stories of good news!