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I think I’ve got it ?

Chrissyjo
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Chrissyjo Newbie
Chrissyjo
Posted

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
trents
Posted

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
RMJ
Posted
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
Chrissyjo
Posted
  • Author
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
trents
Posted

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
Wheatwacked
Posted
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
Chrissyjo
Posted
  • Author

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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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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