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I think I’ve got it ?


Chrissyjo

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Chrissyjo Newbie

Hello I’m new here. I’m having issues.

Firstly I had H pylori about ten years ago and my stomach has never been the same.

My birth mum( I was adopted) was diagnosed with celiac about 8 years ago  Not long after my half brother was too. I was tested via blood which was negative but was told I had one positive gene. 
fast foward to now. My stomach has gone up and down through the years. 
constipation, soft poo, I also get a squirmy sick feeling after I go to the toilet. I get sick feelings in my lower abdomen which can come and go. I’m also iron deficient. I didn’t take any tablets for a couple of weeks and it was then I noticed my poo had a yellow tinge to it.  I had a blood test again last week which came up negative. The doc told me the blood tests aren’t reliable and I could still have it? I’m getting a gastroscopy done in 3 weeks so I’m waiting impatiently. 


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trents Grand Master

Welcome to the forum, @Chrissyjo!

Can you be more specific about which blood test or tests were done most recently for celiac disease? Do you have documentation to refer to or online access to your medical tests? There are a number of blood tests that can and should be run for celiac disease and many physicians are not well versed on which to run to get an adequate picture. 

Were you limiting your gluten intake (wheat products) for a time before getting the blood test?

One thing you need to know is that iron deficiency anemia can cause negative celiac disease blood tests.

 

RMJ Mentor
3 hours ago, Chrissyjo said:

I’m getting a gastroscopy done in 3 weeks so I’m waiting impatiently. 

Be sure to eat plenty of gluten between now and your gastroscopy.  Stopping gluten too soon can lead to false negative results.  Plus, in case you do have celiac disease, you might want to eat all of your favorite gluten-full foods while you can!

Chrissyjo Newbie
4 hours ago, trents said:

Can you be more specific about which blood test or tests were done most recently for celiac disease

I’ll have to ask my doc, I thought there was only one type of test. 

 

4 hours ago, trents said:

Were you limiting your gluten intake

No

 

3 hours ago, RMJ said:

Be sure to eat plenty of gluten

Yep I will. They told me too before the test anyway

trents Grand Master

Chrissyjo, here is an article outlining the various blood tests that can be used to check for celiac disease: 

Many physicians will only order the ttg-iga test. It is the single best blood test tool for celiac diseae and relatively inexpensive. However, it is not a good choice if a person is IGA deficient and many physicians neglect to check for that with the "total IGA" test.

 

 

Wheatwacked Veteran
On 9/30/2024 at 9:48 AM, Chrissyjo said:

The doc told me the blood tests aren’t reliable and I could still have it? I’m getting a gastroscopy done in 3 weeks

Call and verify you are getting an Endoscopy with Celiac Biopsies.  A simple gastroscopy won't clarify anything regarding Celiac Disease.

With the family history you have it is virtually a slam dunk. 

When testing is all done, and they have no answers it will be time to trial Gluten Free diet for at least a few months.  Many are negative biopsy and blood tests, yet improve on GFD.  Diagnosing Celiac Disease or Non Celiac Gluten sensitivity is more an art than science. 

  • 2 weeks later...
Chrissyjo Newbie

Thanks all for your replies. I ended up having my gastrocopy last week. I did get a biopsy done for celiac. The man who did the test was sure I didn’t have it so we will see what the result is 


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  • Posts

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      Hello @A Wilson, Glad you found us.   There is your answer.  The results from the tests are just more data to the puzzle.
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