Wait For Diagnosis Or Not?

[crystal181]

Hi all. I have been having problems for years that seem to be getting worse. I have been to so many different Drs that it's not even funny. Most recently I've been seeing Infectious Disease for my unexplained high WBC and host of other symptoms. Also I recently had a colonoscopy and Egd done. One sample was taken from my small intestine and was shown to have flattened villi. My Dr said this may be from wheat intolerance and to reduce my wheat intake for 4-6 weeks. Reduce not remove. Infectious disease thinks the probability of me having celiac disease is high. I had a tTG IgA but was neg. I have very low vitamin levels and tons of symptoms that point to celiac. They want me to see their GI dr to make the diagnosis. However he can't see me until January! My regular Dr is looking for someone to see me sooner but it still may be a month or more before I can get in. I really want to go gluten free now and not be miserable anymore. But I also know that my tests will show up negative if I go gluten-free. How important is it to have an official diagnosis?

[ravenwoodglass]

Any doctor can order a complete celiac panel for you. Make sure it includes the total IGA as if that is low it causes a false negative in the IGA celiac testing. You have already had the scope and were very lucky that it showed up positive as they only took one biopsy.

So ask your regular doctor to do the blood test for you. Do not go gluten free until the blood is drawn. 

[momtoagfkid]

I'm pretty new to dealing with Celiac, but I come down very strongly on the side of seeking a definitive diagnosis.

I believe it's in your best interest and the best interest of the wider celiac community.

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[cyclinglady]

While some people are never able to get a diagnosis (my hubby) and manage well on a gluten-free diet (14 years), a firm diganosis can mean more support from family, friends and medical. Celiac disease runs strongly in families. There is no resistance to testing when my kid needs it every few years even though she is symptom free (same for my siblings).

Keep eating gluten and ask your GP for the following complete panel:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I also want to let you know that my ttg was NEGATIVE and I had only a positive on the DPG IGA and yet my biopsies revealed moderate to severe intestinal damage. I was fortunate that my doctor ordered the entire panel!

Welcome to the forum and let us know how it goes!

[crystal181]

Thanks so much for the replies. I'm going to be patient and wait for the diagnosis but it's hard knowing that this might help solve all of my problems. I'm so miserable at this point and just want to feel better now. Tomorrow I'm going to see my regular Dr and have him order the blood tests.

[crystal181]

I gave them the entire list and had the dr add HLA DQ2 DQ8 but they only took 6 vials of blood. They must have left something out. So now I wait....

[kareng]

I gave them the entire list and had the dr add HLA DQ2 DQ8 but they only took 6 vials of blood. They must have left something out. So now I wait....

 

Often they do more than one test on a vial of blood.