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Trivial Blood Test?


sidelined

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sidelined Apprentice

Hi all,

I am a teenager who has been experiencing digestive problems for years (bloating, constipation etc.), symptoms which recently have started to affect all aspects of my life. My breathing has become very labored at times, I am experiencing unexplainable fatigue, and worst yet, I am unable to participate in cross country and track, which are my passions.

 

I've been looking for answers and stumbled upon Celiac Disease as a possible explanation. 3.5 weeks ago, I cut out gluten (along with diary, soy and egg) from my diet. Yesterday, I went in to get a blood test for gluten, but I'm worried my time off gluten might have trivialized the results. Even if I get a negative, might that just be because I haven't been eating gluten recently?

 

Thanks everybody.


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kareng Grand Master

Have they checked your thyroid? Are you anemic? Those are 2 other things you might want to check that are common reasons for the fatigue, shortness of breath, etc. They can be related to Celiac or on their own.

sidelined Apprentice

Have they checked your thyroid? Are you anemic? Those are 2 other things you might want to check that are common reasons for the fatigue, shortness of breath, etc. They can be related to Celiac or on their own.

 

As of two months ago, both iron and thyroid were within normal ranges.

nvsmom Community Regular

Being gluten-free for 3.5 weeks could cause false negative results for some people. If the tests end up being negative, you may want to do a gluten challenge and then test again. Normally a gluten challenge is 8-12 weeks long, but you may be able to get away with less since you were not off gluten for long - the full 12 weeks is ideal though.  :(

 

If you can not do the gluten challenge now, you could always consider yourself one with non-celiac gluten intolerance with a possibility of celiac disease, and get tested in the future when you can afford the time to feel unwell - although many find that feeling unwell (on purpose) for up to three months is not worth knowing if it is celiac disease for sure.

 

Some doctors will do the endoscopic biopsy instead of blood tests if the gluten challenge is too much.  The endoscopic biopsy requires 2-4 weeks of gluten.

 

Best wishes with whatever you decide to do.

Fenrir Community Regular

I think when you start talking breathing issues and fatigue you have also rule out sarcoidosis.

 

I come from a family with a lot of autoimmune diseases. My youngest brother has sarcoidosis and his first symptoms were fatigue and decreased lung function. Not to say it can't be celiac  but just have to keep all posibilties in mind.

 

The problem with Celiac disease is that because of the huge number of symptoms you can have with it and the fact that no two celiacs have the same exact symptoms there are a lot of people who have it and are not diagnosed but also a lot of people who think they have it but don't. Celiac disease mimmicks a lot of other diseases, so it can be confusing.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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