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Think My Daughter Might Have Celiac-starting The Whole Process

mommy2almost3

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mommy2almost3 Newbie
mommy2almost3
Posted

My 3 yr old has been complaining for weeks now (probably 3 months) that her stomach hurts, 1-4 times a day, at random times. It goes away though after a minute and then she's fine. I brought it up at her 3 yr check up and her ped. told me to monitor it and call back if it keeps up, which it has-last night she woke up crying because her stomach hurt and then she had massive diah.-the first time she's had it after complaining of her stomach. It had a really bad odor too-not normal. My husband's cousin's 2 children have celiac and the episode last night got me thinking about it-she really doesn't have any other symptoms, except she's very thin for her age and doesn't eat a lot at all-she's 3 and weighs 27lbs (10th percentile). I have another appt. with her ped. next week and I'd like to bring up celiac but don't even know where to start, if I'm reading correctly, it sounds like blood work at this age is not accurate? sara

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dandelionmom Enthusiast
dandelionmom
Posted

My 3 year old's blood work was accurate. She had the Celiac Panel and had it come back highly positive. I hope you find answers soon!

Kibbie Contributor
Kibbie
Posted
My 3 yr old has been complaining for weeks now (probably 3 months) that her stomach hurts, 1-4 times a day, at random times. It goes away though after a minute and then she's fine. I brought it up at her 3 yr check up and her ped. told me to monitor it and call back if it keeps up, which it has-last night she woke up crying because her stomach hurt and then she had massive diah.-the first time she's had it after complaining of her stomach. It had a really bad odor too-not normal. My husband's cousin's 2 children have celiac and the episode last night got me thinking about it-she really doesn't have any other symptoms, except she's very thin for her age and doesn't eat a lot at all-she's 3 and weighs 27lbs (10th percentile). I have another appt. with her ped. next week and I'd like to bring up celiac but don't even know where to start, if I'm reading correctly, it sounds like blood work at this age is not accurate? sara

My daughters blood work was positive at 18 months old.... if you get a positive there is no question so I believe its worth a shot.

mommy2almost3 Newbie
mommy2almost3
Posted
  • Author

I'll bring up the blood test at her appt. since there's a chance it might pick it up-my husband's sister has a lot of celiac symptoms and had blood work done-she said some came back 'gray' zone?? The gi specialist suggested the biopsy but she won't have it done-she's 22 and she just doesn't want to deal with it right now. But if she has it, then the heredity thing is a lot closer to my kids. sara

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      how long does it take for the genetic blood test for celiac to come back?

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      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
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    • Jmartes71
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    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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