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Wait For Diagnosis Or Not?

crystal181

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crystal181 Newbie
crystal181
Posted

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?

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ravenwoodglass Mentor
ravenwoodglass
Posted

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 Newbie
momtoagfkid
Posted

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 Grand Master
cyclinglady
Posted

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 Newbie
crystal181
Posted
  • Author

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 Newbie
crystal181
Posted
  • Author

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 Grand Master
kareng
Posted

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.

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  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

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    • JoJo0611
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      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

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