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What Type Of Doctor Do You See Regarding Your celiac disease?

glutenexpat

By glutenexpat
in Doctors

Recommended Posts

Luana D Newbie
Luana D
Posted

Hi cyclinglady,

I think you are correct on the test ordered by my NP. It was cheap. It was Tiss TGlutaminase IgA test. And I didn't have the lab run it through my insurance paid cash. It was 32.00 and if I paid for it there they would give me half off. So I said sure. I figured in case I might need further testing then they can run my   through my insurance. I'm not too confident with my NP. She doesn't have much suggestions or answers for me and just tells me that with my insurance I can go anywhere and see anyone..... makes me feel like she doesn't want to let on that she does not know what's wrong... I'm glad I came across this group. It's really informative and I appreciate your suggestions. I will visit my GI and hope for more answers. Oh I'm not sure I mentioned I have pre diabetes as well. Not sure it there is a connection or not..

I will it give up.... 

Aloha from Hawaii

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cyclinglady Grand Master
cyclinglady
Posted

Luana,

The TTG IgA test is very good, but like I said it does not catch all celiacs (like me).  It is a place to start.  If negative and you have symptoms that sound celiac-related (iron-deficiency anemia), it might be prudent to request the full celiac label.  See this algorithm for testing:

Open Original Shared Link

You should confirm that an IgA deficiency test was also run at the same time as the TTG IgA.  In the case if celiac testing, this test is used as a control test.  It tells you if the TTG IgA test actually works for you.  

It is rare to find a PCP, NP, etc. to screen for celiac disease.  It just is not on their radar.  They still think celiac disease is applicable to kids who are failing to thrive.  But celiac disease can develop at any time and you can be think or heavy.  You can also be symptom free!  

Learn more about the other tests: DGP and EMA.

Open Original Shared Link

There is a link with type 1 diabetes which is autoimmune like celiac disease.  There is no link to TD2.  I am diabetic too, like my Dad's family.  I am even thin.  Just my luck.  I urge you to research diabetes and prevent it from worsening as much as you can though diet and exercise.  There are lots of diabetes groups out there.  I manage on a lower carb diet.  I eat to my meter.  So, I am now just considered a prediabetic without any progression.   Do not wait for your diabetes to progress!  

Luana D Newbie
Luana D
Posted

Hi cyclinglady,

Thank you for your helpful info. I will look into those links and be ready when I see my GI.

I will update when I get more information.

 

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    • knitty kitty
      Positive TTG antibody and negative EMA antibody

      By knitty kitty · Posted

      You're welcome! Be sure the patient eats at least ten grams of gluten per day for a minimum of two weeks prior to repeating antibody testing.   Some people unconsciously reduce the amount of gluten in their diet because the feel unwell.  Three grams of gluten per day is sufficient to produce symptoms.  Only at ten grams or more is the immune system provoked to raise the antibody production high enough so that the antibodies leave the digestive tract and enter the blood stream where they can be measured.   Read the comments below the article...  
    • Wamedh Taj-Aldeen
      Positive TTG antibody and negative EMA antibody

      By Wamedh Taj-Aldeen · Posted

      Thanks for your response and thoughts. Total IgA is normal. HLA DQ2/DQ8 came as heterozygous and the interpretation of the lab that the risk of coeliac disease is mild to moderate. Thyroid function test is normal. I agree that the best way is to repeat tTG antibodies in 6 months time as the result was not massively high.  
    • knitty kitty
      Positive TTG antibody and negative EMA antibody

      By knitty kitty · Posted

      Welcome to the forum, @Wamedh Taj-Aldeen, How is the patient's thyroid?   You could check for thiamine deficiency which can cause the thyroid to either become hyper or hypo.  TTg IgA can be high in both hyperthyroidism and hypothyroidism.  tTg IgA can also be high if patient is taking medications to stimulate the thyroid as in hypothyroidism.   Thanks for visiting!  Keep us posted!
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      Struggling to get into a good pattern

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    • knitty kitty
      Weakly positive DGP IgA

      By knitty kitty · Posted

      Hello, @Cat M, welcome to the forum! I noticed you are low in ferritin and thiamine as well as other nutritional deficiencies already.  Deficiencies in iron and thiamine affect your body's ability to make antibodies.  Since you do have symptoms, nutritional deficiencies evidence of malabsorption, MTHFR and one celiac gene,  I'm suspecting you do have Celiac disease.   Can you consult a gastroenterologist?  Or ask your doctor to do so.   Gluten Sensitivity can be a precursor of Celiac disease in people with Celiac genes.  Since you've already got symptoms of Celiac disease and evidence malabsorption, an endoscopy with biopsies would be beneficial.   It's can be so frustrating getting a diagnosis because doctors are not familiar with Celiac disease.  Sending you encouragement! Keep us posted on your progress!  
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