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:( Doubtful Now...

Aightball

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Aightball Apprentice
Aightball
Posted

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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gf4life Enthusiast
gf4life
Posted

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 Open Original Shared Link 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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    • rei.b
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      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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