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Celiac?

mommaj

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mommaj Newbie
mommaj
Posted

I guess I just want to feel like I'm doing SOMETHING constructive. My kids both had SEVERE eczema from about 1 month until around 5 years. It was head to toe and unresponsive to medications. They were both tested for allergies, my daughter did not react to much... dust mites and cat allergens. My son had a list a mile long. They are now 15 and 9. My daughter began getting joint pain in her knees at around 5 years old. It was severe pain that kept her up at night. She was examined by a bone doctor (can't remember the title) and checked for RA which she was negative for. My son also has asthma and complains often of stomach pain, particularly in the morning and also some joint pain although not as severe as hers. About 3 years ago, she started having stomach problems. The doctor prescribed medication for acid reflux but it does no good. The pain was only in her knees until... really about this year and now it is in her back, elbows, and one of her wrists. She was recently tested again for RA and was negative. She gags and heaves but does not throw up. Sometimes she is just laying on the bathroom floor after heaving. She reports being frequently nauseated. They are both light and small for their age but still at the bottom of 'normal'.

I have IBS symptoms. My grandmother had some form of scarring condition causing excess scarring that kind of glued her organs together. It is supposedly genetic but I don't know what the name of it is.

I am taking my daughter to a rheumatologist (sp?) next month. I believe that I will ask him to check for Celiacs. Does this sound familiar to anyone? Any ideas. I feel horrible. She got in trouble at school for missing too much so I took pictures from when they were little and had such horrible skin problems to the school and explained the situation. They are much more understanding now but she also says that she has a hard time focusing. She has complained for years telling me that she "thinks she has ADD" and telling me she needs to be on medication.

Oh, I think my sister had/ has celiacs disease! When she was a baby, she would projectile vomit really bad. My mom took her to a dr. and they said to try an elimination diet and they identified wheat as the trigger. She still reacts bad to wheat but particularly certain things such as pancakes or waffles. She has had numerous other issues as well. I just hope we can get it figured out. She can't keep missing school and I feel so sorry for her hurting all the time! They both get sick quite a bit too with everything that goes around the school! And... it seems to take them forever to get well.

Losing my mind~

Jennifer

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OBXMom Explorer
OBXMom
Posted

And... it seems to take them forever to get well.

Losing my mind~

Jennifer

Jennifer, I am so sorry that your children have had such a tough time. I remember those days before my son was diagnosed with celiac disease when he constantly had "tummy bugs". It was only when a nurse I was talking to over the phone said, "It doesn't sound much like a virus to me" that my light bulb went on. I thought, she's right, it must be something else, and after that I was a lot more pushy with our GI doctor about figuring out the problem. I would definitely test your children for celiac. If it isn't celiac, ask your doctor(s) to keep testing until you do get a diagnosis. It is so awful to see your children sick, and when it keeps going on and on, it is truly maddening. I hope you get answers soon.

mommaj Newbie
mommaj
Posted
  • Author

Hi. Thanks for the reply. She's done quite a bit better during spring break. Actually, I was going to take her to a GI specialist last year but she got better over summer... still some issues but not as severe. I don't know if it's a different diet, not as much rest, more stress or a combination. Anyway, I do appreciate the support. It's an awful feeling making them go to school when you know they're hurting or ill.

Jennifer, I am so sorry that your children have had such a tough time. I remember those days before my son was diagnosed with celiac disease when he constantly had "tummy bugs". It was only when a nurse I was talking to over the phone said, "It doesn't sound much like a virus to me" that my light bulb went on. I thought, she's right, it must be something else, and after that I was a lot more pushy with our GI doctor about figuring out the problem. I would definitely test your children for celiac. If it isn't celiac, ask your doctor(s) to keep testing until you do get a diagnosis. It is so awful to see your children sick, and when it keeps going on and on, it is truly maddening. I hope you get answers soon.

macocha Contributor
macocha
Posted

be very very pushy with the doctors when you go in. If I hadn't have pushed, I would still wonder what is wrong with my daughter (fructose intolerance) and wouldn't know that my son has celiac (just recently diagnosed). if you know something is wrong, do not stop until you get answers. ask them to run more labs. tell them you KNOW something is wrong and to start doing tests to uliminate stuff.

I am so sorry they are feeling like they do.

  • 2 weeks later...
mommaj Newbie
mommaj
Posted
  • Author

We go to Children's Mercy on Thursday. I don't know what's going on with her. We had to take her to the ER yesterday. She was having such severe stomach pain that she couldn't breathe, she was white as a ghost. CBC and kidney/ liver func. came back OK and no anemia. X-Ray revealed that she was completely compacted with stool and her blood sugar was 64 (she had already eaten a sandwich and some animal cookies... like quite a few of them... we were at a ballgame and she said she was 'starving' so I got her a big bag of the cookies from Alco to take with her and she ate like HALF of them). I hope she doesn't have diabetes. I never thought of that as a possibility. There was also protein and ketones in her urine. She's 15 and stayed the night with a friend but said that she had eaten supper and a snack in the night. Does anyone know if there is any connection between blood sugar and diabetes?

mommaj Newbie
mommaj
Posted
  • Author

p.s. I meant blood sugar and celiacs... not blood sugar and diabetes :)

OBXMom Explorer
OBXMom
Posted

p.s. I meant blood sugar and celiacs... not blood sugar and diabetes :)

There is definitely a link. I have read that all diabetic children should be tested for celiac, as an alarming percentage of them have it. Autoimmune diseases in general tend to cluster, meaning having one puts you at risk for developing others. My son has vitiligo in addition to celiac. It is just a few white patches on his skin, and he is so pale that they aren't very noticeable, so I have chosen not to treat him. But still, getting that diagnosis was a reminder to me of the unfortunate nature of autoimmune diseases.

I can't tell you how many times my kids have overdone the sweets - like yesterday with Easter baskets, and they never ended up in such bad shape. Definitely don't blame yourself about the cookies - the emergency rooms would have lines out the door all the time if they were the culprit. I am really sorry about your daughter's experience, and do let us know what you find out.

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Pac Apprentice
Pac
Posted

She's done quite a bit better during spring break. Actually, I was going to take her to a GI specialist last year but she got better over summer... still some issues but not as severe.

This is exactly what kept me from getting a diagnosis. I almost always got better in summer.

mommaj Newbie
mommaj
Posted
  • Author

Thanks for the replies. Tomorrow's the day (we probably wont find anything out but you never know). It is the strangest thing. Yesterday my son was hunched over in pain and couldn't move. We gave him a while but he didn't get any better and couldn't even stand so we took him in to the clinic and they sent him to ER. It was bowel impaction. It's as if the universe is telling us just before we go to the specialist not to forget about this symptom or something. Both of the kids report that they are having regular bowel movements and my son said he had even had one that day.

That's odd about getting better in the summer. I wonder what the deal is there. Thanks again everyone. Whether it's gluten or something else, it helps to have others to talk to who have had similar things to go through with their kids.

AKcollegestudent Apprentice
AKcollegestudent
Posted

I know as a college student--and to a lesser extent in high school and middle school--during the year, I'm dependent on school food. Even in high school, though I'd take lunches, they tended to have more starches (ie wheat) than they might have if I'd made something at home. So when I was cooking at home in the summer, I was eating drastically different food. I was also feeling much better; two or three weeks in school, I'd be as sick as ever and having absolutely no clue how to fix it.

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