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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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    • trents
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    • cristiana
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    • EssexMum
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      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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