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    Do you have questions about celiac disease or the gluten-free diet?

Teena143

Not Sure Where To Begin...

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Hello everyone!

What a great idea this is! I appreciate all feedback!

Lets see..where do I begin? First off, I am a 23 year old female in relatively good health. Everything was fine and dandy till about 4 years ago. I have always had bowel and digestive problems after graduating high school..and maybe had some problems in high school but never noticed them. I had a peri-anal abscess about 4 years ago that was the most painful experience of my life!!! After a colonoscopy, i was diagnosed with Crohn's disease and about a year ago I started taking Lialda for that. My Crohn's is mild I would say but now I am beginning to think I dont even have Crohns. For about a year now I have been feeling horribly fatigued, down, anxious (had some panic attacks too!) depressed, dizzy like feeling cause my ears have a lot of inflammation and pressure in them (sinus related), bloating, heartburn and GERD like symptoms, and just not myself. I had gone to so many doctors who all think I am just a hypochondriac. I definitely feel worse after eating wheat. I bought the most basic test from Enterolab and got this as my result:

gluten Sensitivity Stool Test

Fecal Anti-gliadin IgA 84 Units (Normal Range <10 Units)

Interpretation of Fecal Anti-gliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

I am questioning the accuracy of Enterolab too. My gastro dr. did an endoscopy and everything was normal. No villi destroyed. When I mentioned celiac she said to try going gluten free and see how you feel. I guess that will just be my ultimate answer. I just wish I knew concreatly if it really is just a gluten allergy??? Any input would be awesome! Thanks

God Bless you all!

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I myself don't know how accurate Enteolab is but from what most on this forum have to say, they stand by the results they have received from this lab. Personally I was diagnosed by gastroscopy and that is still the most accurate way to diagnose celiac's however my result came back with so little damage done to the villi that the doctor's at first missed it altogether. They had to take a second closer look before they were able to identify that there was damage and I did have celiac's. My symptoms were (and are) so severe that they couldn't believe that so little damage was causing me so much grief. Perhaps your GI specialist missed something the first time around?

I also suffer from many food allergies and intolerances which my GI specialist was completely incapable of identifying and helping me with. Out of pure frusteration with my GP and specialist (who I thought were also writing me off as a hypo) I went as a last resort to see a Naturopath (I live in Canada and don't know what you call them in the U.S.). He has been a godsend and now that I'm not eating all the things I'm not suppose to, my health has improved so much...it's like night and day. I also was diganosed with Lyme disease and am being treated naturally for that as well. In any case, that has been my experience.

My one advice to you is to not stop until you find the one health care provider who is not going to write you off as crazy or a hypo. You're not crazy and you're not a hypo...they just want to say that because they don't know how to help you so instead of thinking it's their fault, they're naturally going to put it back on you. Don't let them and don't believe it! I wish you the best of luck!

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Again, all I can do is share my personal experience, and a few words I just received today from my natureopath.

I was in very good health too, until 11/07 when I had sudden onset of GERD that sent me to the ER (you don't mess with pain in the chest area). Spent 6 months with traditional medicine docs running all sorts of tests - none conclusive. Even the TtG test was normal. Went to a natureopath who immediately suspected gluten. I waited until last Dec (by that point, 5-6 months gluten free) before doing the same Enterolab test - mine came back at 176. There are just those of us who do not show up on the blood tests. And as others on this forum have pointed out, even Mayo Clinic estimates 30% are false negative on celiac panels.

To back this up, my doctor just today sent me a message saying she attended a lecture last weekend by a nutrition expert, Shari Lieberman, who argues that diagnosis through TtG +/or endoscopy virtually requires 100% villous atrophy. http://www.drpasswater.com/nutrition_library/Lieberman.html

So, if you, like me, caught it early, and go on a gluten-free diet, you'll probably never show up on the tests. Yes, some more progressive doctors may officially diagnose with lesser markers, but that does not seem to be the norm based on feedback on these boards.

It's one of my pet peeves about gluten sensitivity/intolerance v celiac - science has only been able to generate imperfect testing to date. Enterolab is atleast a positive part of the picture.

But, I empathize with wanting something concrete. I'm still struggling with limbo. And this is totally separate from the argument that it doesn't matter because the treatment is the same. That's certainly true, but the unknown is a powerful source of stress.

There is absolutely no harm in trying a gluten-free diet. Read these forums for suggestions re going completely gluten-free. Best of luck!

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