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Am I Or Not?

ane323

By ane323
in Coping with Celiac Disease

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ane323 Newbie
ane323
Posted

In Nov of 2004 I was told that I was Gluten Intol. Then 2 months later I become preg. So I start the gluten-free diet, as miserable as it was I for the most part stayed gluten-free. After my son was born in Aug of 2005 I slowly started eating gluten again and was fine. I went and got another blood test done and it came back neg. (The first test had one post and one neg antibody or something like that, the second time both came back negative) Well now slowly my symptoms are comming back.

I went back to the doctor, a different one because mine was overbooked. ( All I really was looking for was a refferal to a GI specialist) He pretty much told me that eating gluten wouldn't kill me. It would just cause me to go to the bathroom. And that if I wanted to eat it go ahead. Well that bothered me. I felt like a complete idiot. I called back and got my referral and go in two weeks. I think the only way for me to quit eating it is for someone (a doctor) to tell me how serious it is. I also kind of want a test to show me how much dammage has been done if any has been done. Is that a colonoscopy? Please tell me I am not the only one out there who has gotten these mixed signals from doctors.

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

Hi there -- welcome to the forum . . .

Just wait -- you'll get PLENTY of answers that say you're not the only one with mixed answers from physicians! Practically everyone on this forum has gotten bad information at one time or another. There are blood tests which can be done: IgG Antigliadin antibodies, IgA Antigliadin antibodies, Antitransglultaminase antibodies and Antiendomysial antibodies. The last TWO listed are the ones which are much more indicative of Celiac disease. An endoscopy with multiple samples of the small intestinal villi is the "final" definitive answer. A good GI doctor will perform all of these. There are also tests through, I believe Enterolab, but I haven't had experience with them . . . there are many on the forum who can help you with that.

I do not have Celiac disease; I am, however, gluten intolerant. I have had "outrageously high" antigliadin antibodies according to my neurologists. The manifestation of my gluten intolerance has affected the cerebellum of my brain. By the way, your doctor is wrong . . . gluten intolerance CAN kill you. Ask my neurologists.

There is a book by Peter Green, MD -- it is called "Celiac Disease: The Hidden Epidemic". It is a very good book, and I would recommend it -- especially prior to going to the GI doc.

There is a thread on this forum -- under "coping" which gives us a place to vent and to tell our stories; one of the participants is a writer and is going to write a composition of these stories. You might want to look -- it is eye-opening. I think that the average is 6 doctors before you get a correct diagnosis. I might be wrong about that, and there are people on the forum who are much more knowledgeable than me.

You're probably at the beginning stages of frustration with doctors. I think all of us have gotten used to it. You'll get by, though, and you'll get to the correct diagnosis -- just hang in there! . . . . Lynne

ane323 Newbie
ane323
Posted
  • Author

What is the difference between Celiac disease and being gluten intolerent?

tiffjake Enthusiast
tiffjake
Posted
Hi there -- welcome to the forum . . .

Just wait -- you'll get PLENTY of answers that say you're not the only one with mixed answers from physicians! Practically everyone on this forum has gotten bad information at one time or another.

Yes there are! After going to through all of my testing (which was kinda back and forth because we weren't looking for Celiac) and getting a diagnosis, my doc STILL told me that it is ok to eat gluten every now and then.....but let me tell you, it is NOT ok with me. I have gotten SO sick now that my tolerance level is so low. I refuse!

And, to answer your question about gluten intolerance and Celiac....I have read that they are both, and I have also read that Celiac means a confirmed biopsy (small intestine endoscopy). I have my diagnosis without the endoscopy because my intestines shut down after eating a bowl of pasta (to celebrate my inconclusive blood work). I opted out of the endoscopy because my hubby is overseas and I didn't want to go through that alone. The doc warned me that I wouldn't be able to do it later because I would start healing, in the gut, and that is fine with me!

About wanting a doc or a test to "make" you go gluten-free, you will find it your answer if you look hard enough. Everyone has SOMETHING that pushed them into gluten-free. I had an Lame Advertisement test, the EnteroLab test, the genetic testing, found out about family history, and a VERY positive reaction to the gluten-free diet, so I don't WANT an endoscopy. But that is MY story, and I understand if you want to go with the procedure. Just be aware that many celiacs go through the endoscopy and still don't have a "definite" answer. Good Luck to you!!!!!

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