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Could I Have It?


Guest Moose

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Guest Moose

Hey everyone! I'm Moose. I'm a 15-year-old girl and my parents were talking about celiac disease today- they think I might have it.

For a very long time, I would get random "stomach aches" with intense, sharp pains in my lower abdomen accompanied by diarrhea and occasionally vomiting. I thought it was simply lactose-intolerance, but even when I try not to eat any dairy and I take Lactaid whenever I do, I still get the occasional stomach ache and frequently feel kind of gassy.

I'm anemic, usually very tired and weak, and almost always have dark circles under my eyes. In the winter I suffer from mild depression, and for a while I thought I might have seasonal-affective-disorder. My periods are always irregular and very, very frequent.

I'm 5'1, I have been for the past year or two, and my weight seems to shift around from 97-108 pounds.

Anyway, I guess my question is, do you think it could be celiac disease? Should I try eliminating gluten from my diet and see what happens or just go straight to getting tested?


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AndreaB Contributor

Welcome Moose! :D

I would ask your parents to take you in to have a celiac blood panel done. That is very important. It is up to you and your parents whether you would want to go through with the biopsy. Another way to go would be enterolab. They do stool tests....check them out Open Original Shared Link.

You sound like you could have celiac/gluten intolerance. You could also just go gluten free if you or your parents don't need anything on paper with numbers and what your genes are. Enterolab would tell you all that.

Do not go gluten free if you plan on getting tested, with the exception of enterolab.

You would need to check personal care products also.

Matilda Enthusiast

...

Guest Moose

Thanks Andrea!

Stool tests, what fun! ;)

My mom said she was going to call my doctor. It's possible, though I haven't mentioned the thought to my mom yet, that I was already tested for celiac, but I don't know. I had a blood test done and my doctor just described it as tests for more severe problems that could be causing my stomach ache, other than IBS or lactose intolerance. Sooo, I should make sure I wasn't already tested. XD

If not, I'll probably get the blood test done.

mouse Enthusiast

I would not worry about whether you had a prior blood test. You can have a false negative on the test, but never a false positive. I do know that if Celiac is in a family and the blood tests come back negative, that they say you should still be retested every two years. So, just go for the test and do not worry about any prior testing. Just make sure that they do the full Celiac panel which consists of 5 tests. Also keep consuming gluten until then. If you just quit for a short time, you can scew the results.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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