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Do I Really Have Celiac?


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19 replies to this topic

#16 powerofpositivethinking

 
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Posted 30 August 2013 - 03:09 AM

I would say you've got it as well whatzie.  it's great that your doctor is diagnosing you on biopsy and gene tests alone!  If you haven't been eating a lot of gluten then the DGP tests might be worthless.  The DGP IgG is the most specific test for celiac with a 99-100% specificity rating, and the DGP IgA is also really good.  As much as doctors like to give the ttg tests, they don't catch everyone.  If you want to get it done great as there is a chance you might get a positive, but if not, you've already got your diagnosis.

 

Here are some links:

http://www.curecelia...eturn-to-normal

http://www.curecelia...dgp-be-positive

http://www.curecelia...-celiac-disease

 

What makes the doctors think you have lupus or systematic inflammatory disease?  Did they suggest that you try the gluten-free diet first to see if symptoms begin to resolve, and then revisit another diagnosis if they don't?


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


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#17 Chrisz1000

 
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Posted 30 August 2013 - 04:34 AM

What makes the doctors think you have lupus or systematic inflammatory disease?  Did they suggest that you try the gluten-free diet first to see if symptoms begin to resolve, and then revisit another diagnosis if they don't?

 

That would be the best way. I thought I had all sorts of allergies, immune diseases and problems at first. Having a period of gluten free, say 2 months minimum, should be long enough to tell you whether those 'other auto-immune disease' symptoms are clearing.

 

Celiac is the mother of all inflammatory diseases, its amazing how much one can be inflamed for so long. Those swollen lymph nodes and ear pain were a long standing one for me too!


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#18 whatzie

 
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Posted 30 August 2013 - 05:24 AM

Your ttG IgG looks borderline, right? And with a positive biopsi and genetic test, it seems pretty clare that you have celiac. I asume you had some reasons for suspecting celiac in the first place, as you had the biopsi done?

Yes the TTG IgG is borderline. When the doctor ordered the colonoscopy and endoscopy we had not discussed Celiac's at all, I had never even heard of it. After the procedure he told me he had done several biopsies and then when i went for my follow-up that is when he told me the biopsies came back showing Celiac's.


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#19 whatzie

 
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Posted 30 August 2013 - 05:36 AM

I would say you've got it as well whatzie.  it's great that your doctor is diagnosing you on biopsy and gene tests alone!  If you haven't been eating a lot of gluten then the DGP tests might be worthless.  The DGP IgG is the most specific test for celiac with a 99-100% specificity rating, and the DGP IgA is also really good.  As much as doctors like to give the ttg tests, they don't catch everyone.  If you want to get it done great as there is a chance you might get a positive, but if not, you've already got your diagnosis.

 

Here are some links:

http://www.curecelia...eturn-to-normal

http://www.curecelia...dgp-be-positive

http://www.curecelia...-celiac-disease

 

What makes the doctors think you have lupus or systematic inflammatory disease?  Did they suggest that you try the gluten-free diet first to see if symptoms begin to resolve, and then revisit another diagnosis if they don't?

I have been going through hell since April. Had a million blood tests done, ANA negative, RA negative, elevated complement c4, elevated sed rate, elevated crp. extremely low b12. other tests are off also, i just can't remember them all. the last time i went to the rheumotologist he stated he believes it is one of the 2 and stated that sometimes it takes awhile to have any concrete to go on. the gi doc tends to agree with him and thats when he also had me do the blood work for celiac after going over the biopsies with me. i go back to the gi on weds to go over the celiac stuff.


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#20 Lock

 
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Posted 31 August 2013 - 09:12 AM

What is the gbd test?

 

Technically, doctors don't give an "official" diagnosis unless there are positive blood tests, a positive biopsy, and a positive response to the gluten-free diet. Luckily not all doctors are such sticklers so if it quacks like a duck and walks like a duck...  My doctor diagnosed me with just blood tests and never bothered checking how I was doing on the diet.  :rolleyes: When I saw a rheumy for suspected lupus (that's not uncommon around here) she complained that I should have been biopsied. I just smiled and shrugged. (She told me my arthralgias were caused by celiac disease and I am cautiously believing her.)

 

If you have a positive biopsy, I would say it's case closed - celiac disease. If no tests are positive, and you react to gluten, it is either celiac disease or NCGI (non-celiac gluten intolerance), but luckily the treatment is exactly the same.

 

I agree with you, with the positive biopsy and the DNA, it is case closed. Technically, I think it is three out of four, if you include the DNA. So if OP responds to the gluten free diet, then there is three out of the four.

 

CeliacinSenegal, I've been told just being celiac can cause you to get a lot of parasites you normally wouldn't get. I'm sure that doesn't mean you can't have giardia without celiac. I didn't know that it could cause flattened villi on its own. My dog had giardia a couple times and I wonder if I picked it up too, because my immune system is all screwed up due to celiac.

 

Whatzie, your doctor is on the right track in my opinion. If you have a strong and profoundly positive result after going 100% gluten free, I think that should put it to rest. But based on your biopsy result, that is enough evidence for the doctor to prescribe a complete gluten free diet.

 

I'm on my first week of 100% gluten free. I have thrown out all my foods that I even suspected might have gluten, and I ordered a bunch of food from Gluten Free Mall.  Talk about a pick me up, it was like Christmas. They have all kinds of good stuff. :)


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