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Is It Celiac?


Lindy25

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Lindy25 Newbie

Hey All,

I wonder if I could have Celiac after all of these years. I am a 25-year old female who used to be much more athletic and have more energy. I was diagnosed with IBS three years ago and have had digestive problems ever since. Then, a year later, I mysteriously developed sinusitis and had a very invasive surgery for it. I am still having sinus problems. Every day for two years now, I am itchy all over my body (usually more at night). I get hives and a rash on the side of my face and sometimes my back. I have joint and muscle pain, and I am tired nearly 100% of the time. I have zero energy. A year ago, I also developed heart palpitations, went to a specialist, and he said that my heart is perfectly healthy so it could be stress-related.

I'm at wits end. I'm 25 years old, have no energy, itchy/with rashes all the time, and I toss and turn at night because my joints won't stop cracking. I've had every blood test imaginable, everything perfect EXCEPT I am always anemic unexplainably. Even when I consume iron.

Most of my diet consists of bread-related products. Do you think it could be celiac or my entire body is just falling apart at the age of 25? Anyone who could help, thanks. It is really appreciated.


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glutentheintolerant Rookie

Have you tried going on a gluten-free diet for a few weeks?

mommida Enthusiast

Do not stop eating gluten until you have had a Celiac panel drawn and the follow up endoscopy with biopsy. Testing is notorious for missing the diagnoses. (There is genetic testing to see if you have the "known" Celiac genes. Stll not very reliable and not always fully covered by insurance. A false negative might cause you issues with ever getting diagnosed. IMO. If you are diagnosed or done with the testing then start the gluten free diet.

Celiac has a related disease called pernicious anemia. Get tested for that too. (Or at least find out what your vitamin B12 level is at ~By that, I mean actually get a hard copy of the results and see what number you're at in comparison to the HUGE range.)

Try contacting your local Celiac support group for a local doctor. (unfortunately most docs are not up to snuff about Celiac and related disorders)

At 25 you shouldn't be falling apart. Please get your thyroid checked for TSH (thyroid stimulating hormone) and auto-immune antibodies.

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    • 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.
    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
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