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Confused if I have Celiac

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Celiac Disease
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Buns75
New Member
Joined : Sep 2015
Posts : 4
Posted 9/21/2015 11:12 AM (GMT -7)
Date Joined Sep 2015
Total Posts : 1
   Posted Today 1:07 PM (GMT -6)   

I'm confused if I have celiac. I had blood tests done.

Ttg ab IGa was 4.2 (normal range 0 - 19)
DGP IGa was 36.5 (normal range 0 - 19)
Total IGa was 132 (normal range 70 - 400)

My DGP IGa test was 23 in May and had an enscopic procedure 
Done in June and that was negative. Still have been trying to eat gluten free but now my DGP test is 36 last week. Confused if I have Celiac.
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cyclinglady
Regular Member
Joined : Aug 2015
Posts : 267
Posted 9/21/2015 8:52 PM (GMT -7)
Well, you have Celiac Disease as you have a positive on the DGP IGA -- just like me! I tested negative on the TTG tests! But, it looks like your biopsies were negative from your May endoscopy. That can occur if the GI did not take enough biopsies. Four to six are recommended (six is best) since the size of the small intestine is vast (size of a tennis court). Patchy damaged areas are easy to miss.

Ask your doctor for copies of your endoscopy procedure which should include a visual inspection (which is often normal looking even with moderate to severe damage) and copies of the pathologist's report on the biopsy samples.

So, your doctor recommended going gluten free? If so, it can take months to a year or longer for antibodies to drop. Also, there is a steep learning curve in mastering the GF diet. Hidden sources of gluten and cross contamination are two things to focus on. Eating a whole foods diet and trying to avoid processed foods will help the healing process and gluten exposure. Did you know just kissing someone after they have had gluten can make you sick? That your lipstick needs to be gluten free? That you need to set up your kitchen so you can avoid gluten contamination (or make the whole home go gluten free). Avoiding restaurants is best until you can get this managed.

Again, only my DGP iga was positive but I had moderate to severe damage (Marsh Stage IIIB). I feel pretty good after being on the diet for over two years.

I wish you well!
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Buns75
New Member
Joined : Sep 2015
Posts : 4
Posted 9/22/2015 7:52 AM (GMT -7)
Thank you for your reply. My gastrointestinal doctor told me I wasnt celiac but my family doctor said I was. I have been eating gluten free at home. We do eat out a lot and I order gluten free stuff but not sure if there is cross contamination. I'm going to try and not eat out, because I'm wondering why my number increased. I did just ordered gluten free make up. Is there anything else I need to change? What was your DGP test result?
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cyclinglady
Regular Member
Joined : Aug 2015
Posts : 267
Posted 9/22/2015 8:50 AM (GMT -7)
There are seveveral good celiac sites that can guide you. Things like GF hand lotion, facial sunscreen, and shampoo. Anything that might end up in your mouth. Always wash your hands before you eat anything. Carry GF snacks for emergencies.

Eating out, I am afraid, is out unless you find a gluten free 100% dedicated restaurant. Probably, this is why your antibodies are still high or higher. I know of one great one Tucson. Cross contamination is the issue. I rarely eat out. It is not worth the risk. It is like Russian Roulette. A glutening recently set me back two months! Remember, CD is an autoimmune disorder and gluten happens to be the trigger. It causes a "flare up" that can last a week or months! Everyone is different.

Consider eating a home for a few months. My husband and I will go out with friends, but we eat at home before and then order a drink at the restaurant. We have traveled abroad, but we mostly tailgate it. Grocery stores are our fast food (that and a Costco chicken).

Oh, my DGP result was around 80, but lab ranges vary so the number does not matter. I had no tummy issues when I was diagnosed -- just anemia and two months into my diagnosis -- spinal fractures from osteoporosis. I had little symptoms that resolved and I always attributed those symptoms to menopause, etc but they were celiac related.

I encourage you to research as much as possible. Buy a few good CD books and get you family tested! And I can not stress getting copies of your medical records. GI docs -- they are not always celiac savvy. I honestly think that mine had just attended a conference and was up to latest research and diagnostic protocol when he diagnosed me! Your doc may not have taken enough biopsy samples.
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Buns75
New Member
Joined : Sep 2015
Posts : 4
Posted 9/22/2015 9:07 AM (GMT -7)
Thank you for your advice. I just ordered gluten free hair products, lotion and soap. I also have a call into my gastrointestinal Dr. Since Friday but no call back yet. The problem I'm having is the symptoms I'm having I'm not sure if there from Celiac or I went off antidepressants and ambien 2 months ago and not sure if the symptoms are from that, or the sleep issues I had. I have had a lot of blood tests and other tests done. Just trying to figure all this out to feel good again.
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