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Diagnosis help

Kaatzal
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Go to solution Solved by trents,

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Kaatzal Newbie
Kaatzal
Posted


I am getting very confused with the process of getting a diagnosis of potentially coeliac disease.

I have been having all of the symptoms associated with coeliac disease so I cut out gluten and saw an improvement. I have visited a gastroenterologist and he tested me for genes that might lead to coeliac disease. I have tested positive for one of these genes (he hasn’t specified which). 

I had a blood test and to check for coeliac disease and it tested negative but I had stopped eating gluten for a few weeks before this test. So this test was ruled unreliable.

However, a few years ago I was tested for coeliac disease whilst I was eating gluten (had no symptoms at this time) and the test was negative. Due to the result of this test, the gastroenterologist is saying that I definitely do not have coeliac disease as he believes it would have tested positive even though I wasn’t having symptoms. 

I have been reading papers and information on the Coeliac U.K. website and it says that Coeliac disease can be developed at any time. This seems to be contradicting information.

Any help would be greatly appreciated

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plumbago Experienced
plumbago
Posted

The only way to reliably know if you have active disease is to go back to eating gluten, wait, and then repeat the comprehensive celiac panel.

From NHS Inform:

Before a blood test is taken, it's important that you eat gluten-containing foods in more than one meal every day for at least 6 weeks before the test. Remember to eat a normal gluten diet for 6 weeks before any tests.

Wheatwacked Veteran
Wheatwacked
Posted
18 minutes ago, Kaatzal said:

the gastroenterologist is saying that I definitely do not have coeliac disease as he believes it would have tested positive even though I wasn’t having symptoms. 

He is wrong.  It is not uncommon for it to take 10 or more years to be diagnosed with misdiagnoses of other diseases along the way.

"To make matters more challenging, celiac symptoms can also mimic symptoms of other diseases, such as anemia, Crohns disease, gastric ulcers, irritable bowel, parasitic infection, even various skin disorders or nervous conditions."

 

  • Solution
trents Grand Master
trents
Posted
  • Solution

The onset of celiac disease can happen at any stage of life. Before onset you will possess the genetic potential but all other tests will be negative.

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      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
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      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
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      Pain in the right side of abdomen

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    • Heatherisle
      Pain in the right side of abdomen

      By Heatherisle · Posted

      Hi  Thank you, will tell her to do that
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