Jeagbenne

Hello, I'm gluten senstitive and following a gluten free diet (which I'm very strict about). I'm having some weird symptoms and can't figure out what might be wrong with me. Not unsurprisingly, neither can my doctor. I'm having intermittent severe stomach pain. It randomly occurs before after and during meals, sometimes it goes away for several days, then it will come back for about an hour or two. It feels like someone is stabbing me in the stomach. I've had an upper GI done and they found a little inflammation but nothing serious. They put me on Nexium, which did nothing. The pain still came and went. I've also been on Protonix and OTC prilosec and tagamet to no avail.

The other weird symptom I've been having for about six weeks now is dizzy spells. They dont' seem to be connected to the stomach pain, but they both showed up about the same time. It's not true vertigo in that the room doesn't spin, but it's not nausea either, it's just a general dizziness that I wake up with and it stays with me all day. Sometimes I find it hard to drive.

The other weird thing is that when the stomach pain and dizziness hit me, I start feeling so hungry, like I'm starving to death. I'm a healthy 155lbs and don't starve myself. Even if I've just eaten, if the pain or dizziness comes I'll need to eat again and I never feel satisfied.

I have no idea what's going on, does this sound familiar to anyone?

Thanks

JGB

I find that strange, because I heard on NPR last week or the week before that McDonald's fries are made with wheat and milk so they are not safe to eat.

I don't believe anything fast food restaruants say, they're evil anyway.

I love kombucha!

It's kinda gross at first but you sorta get addicted to it. I first tried it when I worked at Whole Paycheck (that's what I call Whole Foods). Anyway, all I know about it is that you're basically drinking a bacterial culture, so it's like a very powerful probiotic. A lot of people say that it aids in digestion and can fight cancer and all sorts of wonder things. The way I figure is that you'd probably have to eat several containers of yogurt to get the same effect. As to why it gives you so much energy, I think it has something to do with the fact that it boosts metabolism, not to mention the tiny bit of alcohol that's in it.

I try not to drink it too often though, for a while I was almost addicted to the stuff.

I'd recommend drinking half a bottle every other day or so.

I'm not an expert by any means, but I do have a biology degree so I somewhat understand genetics. After doing some research I believe that I can sort of help you.

HLA stands for Human Leukocyte antigen which is a protein called an antigen. An antigen is something that triggers your immune system, it can be something your body makes itself or something introduced to your body from the environment. So, genes make proteins. Everyone's genes make different proteins. HLA is a protein that your body makes that can trigger an autoimmune response. The way a lot of tests check for genes is to actually look for the proteins that those genes make. So, if you have certain HLA's in your blood, then you have the genes that make them. I don't believe that you have the celiac gene, since all the reading I've done indicates that the HLA that causes celiac is in the D class. I'm not a doctor, however and all this medical science stuff is still in it's infancy. Some scientist and doctors still don't agree what genes or proteins cause what diseases, and we still have a lot to discover. One of the things about these tests that is so maddening is that you could seemingly have a disease but they can't detect the gene for it, or you have the gene for something and never get the disease!

Hopefully your doctor will call you back with more expert advice. In the mean time, if the gluten free diet makes you and your son feel better, stick to it. If it isn't broken, don't fix it!

JGB

I haven't been diagnosed with full blown celiac but I do have gluten sensitivity. I have horribly dry skin, especially when I consume gluten (usually by accident). I try to be religious about lotion but I work in a laboratory and so wash my hands all the time. It's so bad that I break out is rashes just because my skin is so dry. My eyes are horribly dry and I'm thirsty all the time, (and not to mention dryness in a particularly personal area). I do know that after about six months of being gluten-free my dryness started getting better and I didn't need to moisturize quite as much. I'm not sure if that's a symptom of gluten intolerance, but alot of us seem to have this problem, so that's proof enough for me!

Thank you so much for your reply. My thinking is along the same as yours. I don't want to go back on gluten, and my family and husband don't want me to go back on it either. My husband tells me he sees such a dramatic difference even in my personality when I'm on or off gluten. His biggest fear is that this test will come back negative and I'll go back on gluten.

I love the gluten free diet, not only the foods I get to eat but the way it makes me feel. I like eating gluten-free better than the "normal" way of eating.

But, in defense of my GI, he was the first to warn me about going back on gluten. He told me all about possibly having negative tests and how hard it can me to go back on gluten. But even when I was gluten-free I was having strange symptoms "downstairs" and he's concerned about them. He wants to do a complete workup on me, not only testing for Celiac but other things as well. I think his point of view is that by me going back on gluten by the time he starts doing colonoscopies and biopsies he'll have a complete picture of what is going on. My biggest fear isn't the test being negative, I'll be gluten-free after all this for the rest of my life no matter what he says, because you're right- the best indicator of what is good or isn't good for you is what your body says, not the doctor. My biggest fear is that there is something else wrong, something more serious. Colon cancer and all sorts of GI problems run in my family and although I'm only 26 I'm afraid of what they'll find.

Thank you again for your reply.

JGB

Hello there,

I haven't been definitively diagnosed with Celiac disease but after testing positive for gluten sensitivity by Enterolab I went gluten free last august and saw amazing results. I went back on gluten during December and back off of it in january and again the difference was amazing. Now it's March and I finally got my health insurance and I'm seeing a GI for a definitive diagnoisis. Since I've been gluten-free on and off for about six months in the last year I'm worried about what he'll find. He's reccommended me to back on gluten for about 30 days before he does a small bowel biopsy. What I want to know is, how long does it take for your small intestine to heal up to the point that they don't find anything? Do you think that a month back on gluten will show enough damage? I'm so sick of going on and off gluten. I know that it makes me feel better when I'm not eating gluten but I want to be absolutely sure what's wrong with me. While most of my symptoms dramatically improved, I was still having abnormal stools off gluten, which is why he also wants to do a colonoscopy. Can anyone out there help me out on this?

Thanks,

JGB