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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.

 

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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!

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  • Recent Activity

    1. RMJ
      - RMJ replied to Chrissyjo's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      I think I’ve got it ?

      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!
    2. Scott Adams
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      Shaking/Tremors and Off Balance

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    • RMJ
      I think I’ve got it ?

      By RMJ · Posted

      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!
    • Scott Adams
      Shaking/Tremors and Off Balance

      By Scott Adams · Posted

      I could mean that: You have celiac disease but caught it early, before villi damage (especially true if you had a positive blood test for celiac disease--but there is the Marsh scale, and even minor damage could be caused by celiac disease); You have gluten sensitivity--approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. You don't have either of the conditions and can eat gluten normally. From all of your posts I don't think you fit #3 here, so no matter the outcome a gluten-free diet might be your outcome for optimal health.
    • trents
      Question about wheat exposure in my profession

      By trents · Posted

      Yes, it would mean that the wheat starch contains less that 1% gluten. Gluten is not the only protein in the wheat kernel: https://engrain.us/understanding-wheat-protein-content/ It sounds like to me you have a good handle on the variables and hence the questions. The only way to nail this down any further would be to have the starch in question tested for gluten content. The FDA standard for "Gluten Free" is 20 ppm and the GFCO standard for "Certified Gluten Free" is 10 ppm. Even then, the question of safety could not be answered for all celiacs because of the huge range in sensitivity. For some, even 10 ppm is enough to generate a celiac reaction. So, I think it would be impossible to answer the question of safety of the wheat paste adhesive for 100% of celiacs but it might be possible to answer it for the majority, as does the FDA standard of 20 ppm.
    • Scott Adams
      Newly diagnosed with Celiac disease

      By Scott Adams · Posted

      Welcome to the forum.  If you can't avoid eating out due to work and travel, you may want to consider taking an AN-PEP based enzyme like GliadinX (a sponsor here), as there has been a lot of research that shows that it can break down small amounts of gluten in the stomach. I still eat out because I enjoy doing so, and I used to have issues ~30% of the time, but since taking these before any meal at a restaurant I haven't had any issues. I still want to support what @trents mentioned, which is the fact that it is still a much safer bet for celiacs to avoid eating out, as totally avoiding gluten is still the overall safest approach.
    • Scott Adams
      Couple of balls found on my stomach

      By Scott Adams · Posted

      If you believe that the rash or other symptoms you have might be caused by gluten sensitivity, then perhaps you could ask your doctor to have you screened for celiac disease? Some of the symptoms you mentioned, with the exception of the rash and nausea, don't sound like typical celiac disease symptoms, however, the only way to know for sure would be to get screened.
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