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I Think My Daughter May Have Celiac


goob

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goob Newbie

My daughter is 6 years old and I believe she may have celiac. On Easter vacation she began to have a horrible stomach ache. After about 4 days we took her to the hospital. They x-rayed her and only found that she has a huge amount of air in her stomach and intestines. After many more days of distress we went to her pediatrition who said she had a sinus infection because of her constant runny nose and flem in throat. Next we went to our family doctor and he said to take her off dairy. Her nose cleared up but still had stomach aches. Another trip to him and he said to take her off gluten. She has been off for about a month now and is feeling better. We took her to an allergist and she tested negative for everything in blood and scratch test. He had told us it didn't matter that she had been off gluten for a month before the test and gave her an antacid. She has had problems with constipation since birth, is very skinny, has leg cramps, fatigue, moodiness, mouth sores, anxiety and an endless appitite. All have subsided since on the gluten-free diet, except for the endless hunger. She is 6 and has weighed #40 for the last year. I would just like to hear if anyone has had a similar situation and if there is anything else we should do?


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TCA Contributor

If the diet is helping, you're doing great. She may need some vitamin supplements, so get a good gluten-free vitamin. My son loves gummy vites and they say gluten-free on the package. I'm glad you figured this out so easily. Most of us have horror stories! Welcome to the board!

wolfie Enthusiast

Glad that she is doing better!!! Sounds like you found the problem and took care of it. I hope that she continues to feel good! :)

mamatide Enthusiast

I'm certainly no expert, but at 8 1/2 weeks gluten free, my 5yo daughter's appetite has only just begun to subside. At the height of her symptoms she could seriousl put away as much as me, despite her 36lb frame. In the last week to 10 days, she has cut back seriously on her intake but is maintaining her +1 1/2 lbs of weight.

It takes a while for the intestine to heal an begin to absorb the nutrients - so it may take a while for her hunger to subside somewhat.

Oh, and for the first 10-14 days of the gluten free diet it seemed that her symptoms were exponentially worse than ever. But after 2 + weeks she started feeling better and better. So hang in there!

On that thought, does anyone know when the belly pain will end? My DD is pain free now -- so long as you don't push on her belly. That pain is still there and will make her cry if she bumps into something or if she's hit there accidentally. Just wondering.

mart Contributor

Goob, your experience sounds so much like ours. Our son went from hospital to hospital with severe stomachaches last year at age six. No one could figure out what the problem was. He stopped growing at age 4 and was super skinny. His stools were somewhat formed but were gray in color and horribly smelly. He had severe leg pain and lots of ear infections resulting in ear tubes.

It took months for him to start to heal. Unlike your daughter, his appetite is not good. In any case, stay gluten free and you'll see, she'll get so much better. Good luck!

Kris Fisher Rookie

I'm glad she is feeling better. My 6 year old daughter stopped eating last year because it hurt her tummy. She lost 4 lbs in 2 weeks. we took her in and they sent her to a gastro specialist. They scoped her and came to the conclusion she had gastritis. Now that I'm diagnosed with celiac I brought her back into a regular Dr and he suggested putting her back on prilosec for 3 months to see what happens. I'm now going to make an appointment with the gasto specialists to see if she really has celiac or not. My gut says she does. My middle daughter is skinny like yours and has an appetite of a man. Her bowels are crazy hugh and 9 times out of 10 plugges our toilets. Sorry if thats gross to some. I read that bulky stool can be a sign as well, so I asked my Dr and he suggested putting her on stool softners. It's not working. She had e-coli when she was 4 so going to the hospital for a procedure is out of the question as far as she is concerned. Does anyone think my Middle child should be tested as well?

Smunkeemom Enthusiast
On that thought, does anyone know when the belly pain will end? My DD is pain free now -- so long as you don't push on her belly. That pain is still there and will make her cry if she bumps into something or if she's hit there accidentally. Just wondering.

you should take her to the doctor for that. It might be that she has another problem in there caused by the celiac since her belly was sick for so long, something might be not quite right.

I still have a little tenderness in my belly, but my doctor says it's from scar tissue from surgeries, he said that if I hadn't had the surgeries though he would be suspect of a problem with my intestines.


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    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
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