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So Confused And Frustrated...

Karagirl

By Karagirl
in Doctors

Recommended Posts

Karagirl Newbie
Karagirl
Posted

Hello,

I was diagnosed with Celiac disease in 2004. I had completely negative results on all my blood work, but a biopsy showed flattened villi. My doctor diagnosed me with celiac disease. I finally gained weight, stopped having trouble with loose bowels etc....

This past November I had my first problem with abdominal pain, etc...severe loose bowels, and I ended in the E.R. (I was also being treated for thyroid nodules, been put on prednisone and synthroid, and it made me hyperthryoid). My endo sent me to a new digestive doc. (as I had moved from area where doc. was who diagnosed me with celiac).

I couldn't believe my ears today. He "suspects" I do not have celiac disease, that I have IBS (I've had ONE intestinal problem in 4 years!!!!!!) because my blood work all showed negative 4 years ago for celiac disease.

I'm floored. I'm a bit angry and defensive. A gluten free diet has changed my life. And I have this terrible feeling he wrote me off as "IBS" before I even opened my mouth. One of the medications I was taking during the "shrink the nodule" time was cross contaminated with gluten products, I talked with the drug company about this.

So, this gastroenterologist ordered all new serum tests: Tissue transglut, IgG, anti-gliadin antibody, anti endomysial anitbody, quantitatiave IgA level and another biopsy.

*sigh* WHY???? I feel like he is trying to rule out celiac now.

And if I go through these tests, shouldn't I be eating gluten??? I don't want to do that, I know where that leads.

Any advice would be so very appreciated.

Thank you

:(

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happygirl Collaborator
happygirl
Posted

The best advice I can give you is to get a copy of all of your records (including the ones that show you have flattened villi) and find a doctor who knows something about Celiac.

Phyllis28 Apprentice
Phyllis28
Posted

In my opinion you need to locate a new GI.

Your blood tests specifically for celiac will come back negative because you have been gluten free. The only reason to have additonal tests is to diagnose another problem.

Hope your feel better.

emorgan816 Newbie
emorgan816
Posted

I'm leaning towards find a new GI doctor! We do need to have blood work done once every year to make sure our diets are remaining gluten-free, so I would at least go ahead and get that done (especially if the last time was 4 years ago). But for him to just bluntly state you have IBS is insane - isnt that just undiagnosed celiac anyways!? ;) Why would he not feel this was a reaction to gluten, or perhaps some other food intolerance?

If you are not comfortable with this new doctor then you need to be an advocate for your own health and find a new one. That is the one thing I've learned thru this whole process - we need to speak up and not be afraid to fire our doctors.

Good luck!

Elizabeth Secora

gluten-free since March 2007

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    • knitty kitty
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      By knitty kitty · Posted

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      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
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      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
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      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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