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Celiac Diagnosis For My 13 Yr Old?

HoJo

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HoJo Newbie
HoJo
Posted

My daughter has had three episodes (each one worse than the previous) of rotten egg burps that have recently started smelling like feces and severe diarrhea(actually soiled herself while sleeping). She becomes very fatigued, back aches, joints hurt, dehydrated, and emotionally upset. It has gone from lasting 24 hrs to 5 days with the last episode. Once the diarrhea stops the burps stop. Then it's almost like it just builds up again and starts over a few weeks later. Took her to a specialist and he is testing for parasites and celiac. I was told by a homeopathic doctor that I have a wheat allergy. My PA ran blood work and it was negative but he said to listen to my gut and cut out wheat and see what happens. It felt better within a week. Is it possible she has an intolerance like me or is it possible she has celiac? Getting frustrated for her and concerned.

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cyclinglady Grand Master
cyclinglady
Posted

Yes, it is possible for her to have Celiac Disease. Hopefully, they did complete panel. You can check out the University of Chicago's celiac website for the exact tests. Hopefully, you will have results soon.

There are no known or well established tests for a gluten intolerance. Basically, if you fail all celiac testing, you can try removing gluten from your diet for six months. This is called Non Celiac Gluten Intolerance. Unless you had a skin test, you probably do not have a wheat allergy. celiac disease is an autoimmune response to consuming gluten. It is not an allergy. It runs families who have autoimmune disorders like thyroiditis, lupus, type 1 diabetes, etc.

She could have issues with a non-functioning gallbladder too as well as parasites.

Keep us posted on her results. I am a mom of a 13 daughter who fortunately has not developed celiac disease yet, so I can empathize with you.

Fenrir Community Regular
Fenrir
Posted

Hard to give you a solid answer. GI issues are very hard to figure out at times.

 

All of the things you say she is experiencing can be celiac but they can also be Crohn's disease, ulcerative colitis or any number of other issues.

HoJo Newbie
HoJo
Posted
  • Author

Cyclinglady,

They have done a complete panel but we are waiting for results. We have several autoimmune disorders in the family..lupus, RA, hashimotos thyroid, reynauds phenomenon,, juvenile diabetes, etc. I am praying that her results will be negative but am hoping for some sort of explanation for all of this. I personally haven't had any testing done to rule out celiac disease. Just the blood work for food allergies. It was all negative. My doctor said to eliminate "wheat" for awhile and see what happens. I did and felt better after about a week but I am still in doubt that that is my issue. Right now she feels good so I will pray it stays that way.

cyclinglady Grand Master
cyclinglady
Posted

Ugh! Do not give up gluten yet. My husband gave it up based on input from his clueless doctor and my allergist. It was the right solution, as he has been gluten free for 13 years and he knows gluten makes him sick. However, now he does not have a diagnosis. He would be first one to say that it is much easier in terms of support from medical, family and friends based on the reaction from my official diagnosis.

The next step in testing is an endoscopy to access damage, take biopsies and rule out other issues like Fenrir stated. You have to keep eating gluten until all testing is complete.

Your doc was wiling to test for allergies but not celiac for you? There are over 300 symptoms! i just had anemia and no tummy issues. Print off U of C's list of symtoms and testing requirements and share with your doctor.

HoJo Newbie
HoJo
Posted
  • Author

I am keeping her diet the same for now until we have an answer. She has had to much weight loss to change it right now without clear answers. My doctor continues to brush my stomach issue off as IBS.(I am a believer that IBS is a bogus diagnosis for when they just don't know) If my daughter comes back positive for celiac then I will be insisting on further testing for myself. Being in limbo is a bummer!

cyclinglady Grand Master
cyclinglady
Posted

Keep us posted and I wish you luck!

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mommida Enthusiast
mommida
Posted

When all testing is done.  You may find yourself "negative for Celiac".  You have proven to yourself that you feel better not eating gluten.  Current medical testing isn't proving why so many feel better not eating gluten.  Listen to your body, you don't need a medical diagnoses to be gluten free.

 

There were some reports out years ago about 30% of untreated Celiacs have non-functioning gall bladders.  (I would expect the data from these old reports to have changed.  Before Celiac was becoming mainstream patients were having gall bladders removed, and then getting diagnosed with Celiac {10 years ago if you searched Celiac you found reports stating Celiac was only a 1 in 40,000 statistical odd, and then 1 in 10,000 which seemed to quickly change to 1 in 333 ~ which quickly noted genetic link and family members need to be screened})

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