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Getting diagnosed

Dale Bowdry
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Dale Bowdry Newbie
Dale Bowdry
Posted

Hello all. I'm new to all this. Here's my problem. I suspect I might be coeliac or ncgs. I have been going  to the doctors for years with really bad indigestion, fatigue, joint pain etc. More recently chronic constipation and bloating which I have to take epsom salt for every day. I have had the blood test for coeliac and it came back negative. Had a blood test that came back with low vitamin D (doctor said it wasn't that low though) in my mind deficiency is deficiency. Beer absolutely plays havoc with me guts(really painful heartburn and stich) I had a gluten free beer and I was fine. I have cut gluten out all together for the last week and the indigestion seems to of gone but I'm still constipated. My questions are 1-Do people think all of this could still be coeliac despite the blood test 2- how long does it take to feel better after stopping gluten 3- how long can a biopsy (which I haven't been offered) still diagnose coeliac after cutting out gluten?

 

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trents Grand Master
trents
Posted

Welcome to the forum, Dale!

Yes, despite negative blood antibody tests, you still could have celiac disease. 20% of whites and 80% of blacks who test positive through biopsy have a negative tTG-IGA score. Can you be more specific about what antibody tests were run by the doctor? There are a number of tests that can be run to detect celiac disease but many doctors will only run the tTG-IGA. And if your total IGA is low it can generate false negatives. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The symptoms you describe could also be related to SIBO (Small Intestine Bacterial Overgrowth) or possibly histamine intolerance. And both of those conditions are common with celiac disease.

After cutting out gluten you should start to feel better within a few weeks to a few months. It can take two years or more for the villi that line the small bowel completely heal.

If you begin a gluten free diet within weeks or more before either serum antibody testing or biopsy it will invalidate the results. Both kinds of tests are designed to detect damage caused by inflammation in the lining of t he small bowel caused by gluten ingestion and if you stop gluten the inflammation subsides and healing of the villi begin. Stay on regular amounts of gluten (defined by the Mayo Clinic as being the daily consumption of two pieces of wheat bread or the gluten equivalent) until all testing is complete.

Dale Bowdry Newbie
Dale Bowdry
Posted
  • Author
15 hours ago, trents said:

Welcome to the forum, Dale!

Yes, despite negative blood antibody tests, you still could have celiac disease. 20% of whites and 80% of blacks who test positive through biopsy have a negative tTG-IGA score. Can you be more specific about what antibody tests were run by the doctor? There are a number of tests that can be run to detect celiac disease but many doctors will only run the tTG-IGA. And if your total IGA is low it can generate false negatives. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The symptoms you describe could also be related to SIBO (Small Intestine Bacterial Overgrowth) or possibly histamine intolerance. And both of those conditions are common with celiac disease.

After cutting out gluten you should start to feel better within a few weeks to a few months. It can take two years or more for the villi that line the small bowel completely heal.

If you begin a gluten free diet within weeks or more before either serum antibody testing or biopsy it will invalidate the results. Both kinds of tests are designed to detect damage caused by inflammation in the lining of t he small bowel caused by gluten ingestion and if you stop gluten the inflammation subsides and healing of the villi begin. Stay on regular amounts of gluten (defined by the Mayo Clinic as being the daily consumption of two pieces of wheat bread or the gluten equivalent) until all testing is complete.

Thank you so much for your reply. I am having serious trouble even getting an appointment with the doctors let alone being believed when I get there. No follow up appointments when testing comes back negative so I have to go through the recurring nightmare of ring up at 8am pot luck appointments nonsense. I have seen 5 different doctors now in 2 months. Even if they do end up referring me for biopsy I am not confident it will be a short wait. I have been really ill and I don't know if I can keep making myself ill on purpose while the NHS sorts itself out. Is there any real benefit to getting officially diagnosed or should I just give up at the doctors and carry on gluten free. I'm in the uk by the way. And in answer to your question I'm pretty sure it was the tTG-IGA test you mentioned. It's hard even getting that sort of information out if them, they don't tell you anything 😕 

Dale Bowdry Newbie
Dale Bowdry
Posted
  • Author
1 minute ago, Dale Bowdry said:

Thank you so much for your reply. I am having serious trouble even getting an appointment with the doctors let alone being believed when I get there. No follow up appointments when testing comes back negative so I have to go through the recurring nightmare of ring up at 8am pot luck appointments nonsense. I have seen 5 different doctors now in 2 months. Even if they do end up referring me for biopsy I am not confident it will be a short wait. I have been really ill and I don't know if I can keep making myself ill on purpose while the NHS sorts itself out. Is there any real benefit to getting officially diagnosed or should I just give up at the doctors and carry on gluten free. I'm in the uk by the way. And in answer to your question I'm pretty sure it was the tTG-IGA test you mentioned. It's hard even getting that sort of information out if them, they don't tell you anything 😕 

Thank you so much for your help I will look into the other conditions you mentioned also.

 

trents Grand Master
trents
Posted

Dale, I understand that in the UK there is some kind of government subsidy to help offset the extra cost of gluten free food if you have an official diagnosis of celiac disease. Other than that, the antidote is the same for both NCGS and celiac disease, namely, adopting a gluten free diet for life.

Dale Bowdry Newbie
Dale Bowdry
Posted
  • Author
5 minutes ago, trents said:

Dale, I understand that in the UK there is some kind of government subsidy to help offset the extra cost of gluten free food if you have an official diagnosis of celiac disease. Other than that, the antidote is the same for both NCGS and celiac disease, namely, adopting a gluten free diet for life.

In Scotland, Wales and Northern Ireland you can get all sorts of gluten free food on prescription but for some reason in England you can only get bread and flour 

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