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OnROB

A decade later... advice.

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Back in 2008 I was having GI issues. Mainly frequent, incomplete, yellowish, BMs. 

I visited my PCP, had bloodwork done, was told I tested positive for Celiac Sprue. I was in my early 20's - fairly immature and not extremely proactive. My older sibling was experimenting with food elimination in order to address some issues she was having - not the same symptoms I have/had. Between the diagnosis and my sister "going gluten free" I didn't question or know what to do other than take it. The PCP did not recommend a endoscopy. I was on my way. 

While some symptoms improved - I have had the same urgent and problematic BM issues all of this time. 

Last week I went for a check up to try and see if a new PCP would have any ideas how to address it. She reviewed my file. She explained that back in 2008 my Anti-Giladian was elevated but that my TTG was not. She went on to explain that current medicine does not put much weight into the antig measurement and that with that - my bloodwork would not say I was indeed positive for Celiac.

Now - the what to do. I certainly understand the thought that - if eating gluten-free improves my quality of life, that I should continue to do so. And I likely will in the long run. I now understand that in most cases a specialist should be seen as a follow up and typically a biopsy. I even saw a PCP who has Celiac a few years ago - he did not catch the bloodwork info - and did not suggest I see a specialist. 

The new doctor is suggesting I see a specialist and/or do a gluten challenge followed up by new tests. I really am hoping to see improvement in my issues since it has been such a long time. 

Any thoughts on the gluten challenge? Anything I'm missing. I'm assuming that specialist or not I'm headed for a time of eating gluten after avoiding it for so long.

Thank you!

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Official diagnosis needs an intestinal biopsy. As for the blood work, it depends on what actual tests were run. If it was native anti gliadin antibodies, then it's not specific for celiac disease. It just means you have a immune response to gluten. If it was deamediated gliadin antibodies, that can indicate celiac even without elevated tTG.  But an intestinal biopsy is necessary. 

And yes, a gluten challenge is necessary. Two years ago my daughter went through the gluten challenge. I was told 6 weeks of about a slice of bread a day. She was negative for celiac. It was a very difficult 6 weeks and we have stayed off gluten because she was so sick from it. But she is having worse neurological symptoms with gluten accidental exposures now and we have been offered a gluten challenge again. This time we were told 12 weeks of gluten. So you have to decide if it's worth it. I have met folks who had been sick for years, continued to be retested and after 5-10 years finally had positive celiac blood work.  

Best of luck to you in this. Giving up gluten is hard. Getting tested for celiac disease when you've been gluten free for so long is hard. 

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On 5/12/2017 at 11:01 AM, OnROB said:

Back in 2008 I was having GI issues. Mainly frequent, incomplete, yellowish, BMs. 

I visited my PCP, had bloodwork done, was told I tested positive for Celiac Sprue. I was in my early 20's - fairly immature and not extremely proactive. My older sibling was experimenting with food elimination in order to address some issues she was having - not the same symptoms I have/had. Between the diagnosis and my sister "going gluten free" I didn't question or know what to do other than take it. The PCP did not recommend a endoscopy. I was on my way. 

While some symptoms improved - I have had the same urgent and problematic BM issues all of this time. 

Last week I went for a check up to try and see if a new PCP would have any ideas how to address it. She reviewed my file. She explained that back in 2008 my Anti-Giladian was elevated but that my TTG was not. She went on to explain that current medicine does not put much weight into the antig measurement and that with that - my bloodwork would not say I was indeed positive for Celiac.

Now - the what to do. I certainly understand the thought that - if eating gluten-free improves my quality of life, that I should continue to do so. And I likely will in the long run. I now understand that in most cases a specialist should be seen as a follow up and typically a biopsy. I even saw a PCP who has Celiac a few years ago - he did not catch the bloodwork info - and did not suggest I see a specialist. 

The new doctor is suggesting I see a specialist and/or do a gluten challenge followed up by new tests. I really am hoping to see improvement in my issues since it has been such a long time. 

Any thoughts on the gluten challenge? Anything I'm missing. I'm assuming that specialist or not I'm headed for a time of eating gluten after avoiding it for so long.

Thank you!

Hmm not gluten free for sure and it's too low for celiac to kick in. Your just a little intolerant. Had the same one done I know

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Thank you for the thoughts.

Had a piece of regular bread a few days ago. Next day I felt very fatigued, had frequent bathroom trips, and yellow in my stool. Ugh.

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2 minutes ago, OnROB said:

Thank you for the thoughts.

Had a piece of regular bread a few days ago. Next day I felt very fatigued, had frequent bathroom trips, and yellow in my stool. Ugh.

 

2 minutes ago, OnROB said:

Thank you for the thoughts.

Had a piece of regular bread a few days ago. Next day I felt very fatigued, had frequent bathroom trips, and yellow in my stool. Ugh.

If any thing it sounds lie a medium case of listeria

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Hi!  

I just wanted you to know that I tested positive to ONLY the DGP IgA, yet my biopsies revealed a Marsh Stage IIIB.  The TTG is great, but it does not catch all.  Even today, after a glutening, the only positive I get is the DGP IgA.  My GI does not even bother to order anything else on my yearly visits or when I request a check (my glutening symptoms are never the same!!!!)

Only you can decide if a challenge would benefit you.  I was formally diagnosed, but my hubby was not.  He had been gluten free 12 years before my diagnosis.  We know gluten is bad for him.  There is no way he would do a challenge (we like to pay our bills).  However,  he will tell you that I get way more support from family, friends and medical staff.  Our PCP never hesitates to test our kid.  

Good luck to you!  

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Hello, 

Cyclinglady is right, it just takes one positive. That being said, some of the antibody tests can show up positive in diseases other then celiac. Including the newer deamidated gliadin. You probably had the older tests run in 2008, which are even less reliable but can be positive in up to 50% of non cekiac gluten sensitive folks (See research by Umberto Volta). 

I did the same thing you did btw and ended up doing 2 gluten challenges in 2 years (the first one was not long enough) and only revealed one positive  deamidated test on multiple occasions but it was often negative too. I had Marsh 1 scoring on the biopsy after 12 weeks on gluten. My specialist is calling it either "potential" celiac or NCGS. I have to undergo a crazy strict diet for 3 months to see if things improve. Again, all stuff I have done before. Then I follow up late summer. 

I feel your concerns. You will have to make your own mind up about a gluten challenge. 

What you COULD do, is have the panel redone now, both off gluten and on it after a challenge to see what happens. You could also get the genetic test. 30-40% of the population has it though  And only a few going to actually develop the disease. However if you do not have the gene you pretty much can rule it out altogether. 

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