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Advice On Celiac Diagnosis
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3 posts in this topic

Hey all,I am new to these boards so please bear with me. I have been running around with GI doctors for the past two years. I have received two opinions. My current doctor feels I have IBS. However, e tested me for celiac and one of the tests the Gliadin AB IgG test was elevated(35). The other tests were negative. I had a endoscopy done about two years ago from a different doctor where he biopsied me for celiac and it was negative. My current doctor feels that was sufficient and doesnt want to pursue another endoscopy. I am at a crossorads right now because I still have bad cramping and D even with the antispasmotics he has prescribed. ANy advice how to handle this?

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I have heard of people who had nothing but a positive Igg who went gluten-free and that solved everything.

How bad do you feel and how much do you want to feel better? Going gluten-free without knowing if that's really the problem seems radical, but if your doctors are at a complete dead end, what they're doing isn't helping, and you aren't functioning, you can always take a deep breath, go gluten-free and see if it helps. If it doesn't, then all you've lost is a few weeks of eating gluten. If it does, then you have your answer and you feel good again. You might have to do this for at least a few weeks and maybe longer to know if it's working. Some people feel better almost immediately while others take some time.

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Hi Tommy1976,

You could always check into Enterolab. There are many different levels of gluten intolerance. If you have a lesser level then you will not have enough damage in your intestines to cause antibodies to leak out of the intestines into the blood stream. Enterolab tests for antibodies in the stool, since they are eliminated from the intestines through the stool, and are therefor easier to determine in gluten intolerant people who are not yet classified as Celiac (which is the worst form of gluten intolerance).

You can order the tests from home without a doctors order and you perform the test ans send it back overnight mail. It is very simple to do and many of us here at this site have done their testing. Most of us were in similar situations as yours, where the doctors won't test us anymore due to negative tests. I just wanted a more concrete answer. Yes or NO. I knew I felt better off gluten, but I wanted to know it was really necessary before doing it, and I wanted my kids tested. It ends up we are all 4 gluten intolerant. All of us are doing better now and I highly recommend Enterolab. Not all doctors will accept the diagnosis (I've got about a 70% rate of acceptance with 6 different doctors), and most insurance won't pay for it, but in my mind it was worth it. The tests range from $99 to $349, depending on what you are testing for. If you are interested in checking them out here is a link to their website.

http://www.enterolab.com

God bless,

Mariann

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    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
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    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
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