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:( Doubtful Now...


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#1 Aightball

 
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Posted 18 March 2004 - 02:49 PM

I have a question...

I was reading a thread and it was mentioned that the definitive test for celiac disease is the endo down the throat...I've had that and it was negative. I am going to double check that with the GI doc tomorrow when he's in, but I just know mine was negative...so why, then, would the allergy doc think I was intolerant to wheat/gluten? I didn't test allergic to wheat...

My main complaints were: diahreea (which most of my family gets from time to time anyway), and ocassional tummy aches. Mostly my diaherre came after the first big meal of the day. While I have been trying to be gluten-free, I have found things that *don't* bother me over the last few weeks (though I don't have those now since I am supposed ot be gluten-free). Now, for the most part, yeah, I do feel better on the gluten-free diet, but I still have lose/soft stools, diahreea, ect. Could the allergy doc have been wrong?

I should also clarify that I hve an ovarian cyst, if that effects anything...

-Kel
confused as hell...:(
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#2 gf4life

 
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Posted 18 March 2004 - 03:32 PM

Hi Kel,

The endoscopy is the medical fields choice of test for diagnosing Celiac, but it is not fool proof. I also had a negative biopsy. I am not even going to have my kids biopsied at all. They all tested inconclusive on the bloodtests (positive IgG, negative on tall the IgA tests). I had a lot of similar symptoms to you and more, yet I tested negative on the blood test as well.

The problem is that the blood test will only show positive if you have damage to the intestines bad enough for the antibodies to "leak" out into the bloodstream. The biopsy depends on the skill of the doctor who does the biopsy and if they hit the right spot, since damage can be patchy. It also depends on the skill of the lab techs and doctors examining the specimen. If they are looking for worst case scenario Celiac then they will often say negative when their is minimal damage. But damage is damage. It is like the difference between a broken leg and a compound fractured broken leg. They are both going to hurt like crazy and take time to heal. One is not as bad as the other, but they are both bad. Doctor's just haven't caight up with the latest research, that shows the biopsy is not the best test.

I opted(after hitting a wall in regards to all my doctors) for testing through Enterolab. They use the latest technology in Celiac/Gluten intolerance testing. It ends up that I have the celiac gene and a gluten intolerance gene. My daughter has the same, my sons both have the gluten intolerance gene (one has two copies,and one has another type of autoimmune disorder gene that can also cause gluten intolerance). We are all producing antibodies to gluten and to dairy in our intestines, but so far the damage to the intestines is minimal in a few of us and borderline bad in one of my sons. So I am glad I know now and can help us all avoid further damage.

You can be gluten intolerant without being celiac, and you can also have either (or both) with negative blood/endoscopic biopsy tests. Please listen to your body, and not your doctor when it comes to this. If you feel you need further testing to reassure yourself (as I did) then you may want to check out Enterolab for their testing. Most US doctors are behind the times. Doctors in Italy are now doing the stool testing too, as they realise it is much better at diagnosing gluten intolerance even in its early stages.

As to why somethings bother you and others don't (I assume you are talking about gluten foods?) I read recently in a book about allergies/intolerances (from 1974, but has some quite good info, way ahead of it's time!) that for some people even a speck of the offending food will cause a reaction but for others it may take a larger amount, but the reaction will still happen eventually. I really feel this is true. Of course I am not saying it is okay to have just a little bit of gluten. It may take a larger serving for you to notice the symptoms, but with just a little bit the symptoms may be too subtle for you to notice. The damage is still being done though, so it is best to avoid as much as possible.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children




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