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Broken Bones?
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My 8 yr old daughter was just diagnosed last week with Celiac after a very long road of being sick. She had lost weight, was in and out of the hospital and never a diagnosis (even though on record she was at her pediatrician's office at least 1 or twice a month for 7 months in a row with stomach complaints)...then finally , this past February 2012 (her last hospital visit) once I argued with the hospital not to let her go until they find out what is wrong with her. They finally sent in a GI doc and he suggested they do a Celiac panel because after asking our family history, he found out that Celiac, Chrohns, Diverticulis & Rheumatoid Arthritis all run strong in our family. They did not do an endoscopy while she was in the hospital because she did test positive for Type b flu but they did feel she had a separate issue going on as well. So we had to wait 4 weeks to get in to see the GI doc and hear back the results of the panel. That was another month of our daughter feeling awful, losing 3 more pounds and growing weaker. Her markers all came back positive for Celiac - TG something came back 120. The GI felt that wasn't enough to diagnose, even with the weight loss, dark circles, migraine headaches and here's my question to you. Our daughter also broke 3 bones within 8 months of each other. All from very simple falls. She was a very big milk drinker, ate cereal every day with milk & took multivitamin everyday...yet she still managed to break 3 bones in such a short amount of time. She had broke the bones May 2011, December 2011, January 2012...so at one point she had to be in a wheelchair because she had a broken ankle & wrist at the same time ;-( Long story , short...she had her endoscopy done and the biopsy report said that even though there was no damage visible to the eye, the biopsy samples showed her villi were split and flat. So then the doctor said we could get a second opinion but because of all of her symptoms it was safe to say it is Celiac and that we should start her on a gluten/dairy free diet. (I should add, prior to the endoscopy, she was taken off of dairy for 3 weeks to see if her symptoms subsided, it helped a little bit, but not huge impact.) Has anyone else's child had an issue along with Celiac and broken bones? I'm sorry, i am so new to all of this and I know have rambled on here.. there's so much to say and it seems like there may be help out there from you guys ;-) Thanks in advance!

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Welcome to the boards, and don't worry about rambling. You have an awful lot to deal with, and so many of us have been through it all.

Osteoporosis and osteopenia are BIG markers for celiac. Because there's so little absorption of nutrients going on through those "split and flat" villi, the bones get weakened; thus your poor little girls' fragile bones.

The good news: you are going to be amazed at how much better she gets on a gluten free diet. Start looking around here, reading up on all the information that is available about how to get started... put her on 100% gluten free immediately. Sometimes it takes awhile to heal and see improvement, but some people see very dramatic improvement in a short time. It seems like I've read more about kids improving quickly, and adults take longer.

Gluten free sounds horrible and hard to do-- but with all the products now available, it is much easier than it sounds to transition, especially if you put a positive spin on it with your daughter. We've been gluten free about 3 months now (my daughters are 10, 14 and 17 and are all celiac, and I am gluten intolerant) and I was surprised at how well they adjusted.

Best of luck and keep coming here for more information, and vent whenever your want! :)

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Welcome to the board! Our family has been gluten free for six years now - best thing that ever happened to us in many ways. I have one child (my 8 yo DD) that has neurological issues that seem to be related to gluten. It has probably been a contributing factor to her broken bones. Sounds quite a bit different than what you are dealing with, and that is one of the strange things about celiac and gluten intolerance - it affects different people in very different ways. My DD has had three broken bones - all around her elbows. She is very cautious as it is, as she has always been "accident prone". But she seems to land in ways that break her bones . . . sigh. I just wanted to let you and your DD know that there are others here who can relate to the struggles. My DD has also been hospitalized a couple of times, once with major emergency surgery for "arthritic" issues. Hopefully, a gluten free diet will get your DD on the mend quickly. Feel free to ramble and ask lots of questions. I really count on others to help me figure some of this stuff out! Take care and good luck!!

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Hi there,

Welcome! Our twin girls, now 5.5, were just diagnosed with Celiac. Our Ped GI intends to follow up with bone density testing for our girls when they're 9 or 10. She plans to do a thorough CT scan of legs and back and then compare them to otherwise healthy kids' scans of the same ethnicity. She asked us to make sure our kids do weight bearing exercise (like soccer, karate, etc) to build bone mass. She also has them taking a multivitamin with calcium.

Hope this helps!

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Thank you everyone for your replies! It has definitely been overwhelming but we are learning as we go along here. We are meeting with the dietician tomorrow so I am looking forward to that! I have another question for you guys. Have any of your children ever complained of their stomach feeling like a burning feeling inside as well? There are some days my daughter has complaints of this. When she had her endoscopy, they did take stomach tissue and say they were testing for H. pylori but at her results appointment the doctor made no mention of it. We are now a week and a half into the gluten free/dairy free diet and she is finding things she likes. However, she woke up this morning with awful stomach pain and we are scratching our heads in what we gave her to eat that made her stomach bloated and sick again ;-( Has almond milk affected any of your children? This is the only thing that I can think of that maybe set her off.

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Welcome to the boards, and don't worry about rambling. You have an awful lot to deal with, and so many of us have been through it all.

Osteoporosis and osteopenia are BIG markers for celiac. Because there's so little absorption of nutrients going on through those "split and flat" villi, the bones get weakened; thus your poor little girls' fragile bones.

The good news: you are going to be amazed at how much better she gets on a gluten free diet. Start looking around here, reading up on all the information that is available about how to get started... put her on 100% gluten free immediately. Sometimes it takes awhile to heal and see improvement, but some people see very dramatic improvement in a short time. It seems like I've read more about kids improving quickly, and adults take longer.

Gluten free sounds horrible and hard to do-- but with all the products now available, it is much easier than it sounds to transition, especially if you put a positive spin on it with your daughter. We've been gluten free about 3 months now (my daughters are 10, 14 and 17 and are all celiac, and I am gluten intolerant) and I was surprised at how well they adjusted.

Best of luck and keep coming here for more information, and vent whenever your want! :)

Thank you!!!

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My son is just the opposite! lol He has a bone growth delay and we contribute that to his *knock-on-wood* never breaking a bone. If it were not for his bone growth delay, I hate to think about how many broken bones my dare-devil would have so far.

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Kelsmom--I think I mentioned the stomach pains one of our twins has in another thread (the Chex one). She is now on Prevacid (also see my thread on that if you'd like). She tested negative for H. Pylori but had a reddish section in her stomach which was discovered in the endoscopy...PM me if you want!

On the stomach pain note--I'm noticing that fatty foods/proteins are tough for her right now. I do find that Aloe Juice is yummy and seems to be gentle/healing for her tummy.

Thinking of you!

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Has anyone tested yhour daughter for nutritional deficiencies, like Vitamin D which is very important in bone growth. Because celiac causes malabsorption, there are often nutritional deficiencies which need more supplementation than just a kid' chewable nultivitamin.

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Hi , yes, actually she had another round of blood tests this past Saturday and they were testing all of her levels. Her appointment is this coming Wednesday, May 2. I am anxious to hear what the results are.

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My daughter just broke another bone (her 4th in 11 months!)... just on Thursday. Our appointment can't come fast enough on Wednesday now.

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Has anyone tested yhour daughter for nutritional deficiencies, like Vitamin D which is very important in bone growth. Because celiac causes malabsorption, there are often nutritional deficiencies which need more supplementation than just a kid' chewable nultivitamin.

Hi! Her test results came back and her vitamin D was severely low. She is now on a vitamin d gel pill, 1 every 7 days for the the next 8 weeks. After that, she will be on oracal vitamin. Hopefully the high dose of vitamin d for the 8 weeks will boost enough, combined with her new Gluten free diet = no more broken bones!!!

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Hi! Her test results came back and her vitamin D was severely low. She is now on a vitamin d gel pill, 1 every 7 days for the the next 8 weeks. After that, she will be on oracal vitamin. Hopefully the high dose of vitamin d for the 8 weeks will boost enough, combined with her new Gluten free diet = no more broken bones!!!

Oh, I am so glad that they tested her! Get her retested at the end of the eight-week period to make sure she is where she needs to be. I would aim for at least mid-range.or better since she has had such a slow start.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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