Anyone Heard Of Leg Pain By Celiac Disease?

[Tay Tay's Momma]

We have been through every blood test and neurological test you can think of. Taylor was fine just over a month ago. He got a 24 hour virus and hasn't been the same since. After spending every week in and out of doctor's office and 4 days in the hospital, not including the partial day for the biopsy, I am at my end. As soon as the biopsy was done we changed his diet to gluten free per doctors orders. He was not eating much and had complained of leg pain in right leg since mid November, a couple of days before the hospital. In hospital it got worse to the point of him not walking correctly... with all the different doctors rolling through they were more concerned thinking he might have cancer than they were about the mom saying he didn't walk right. Since then he was only able to walk short distances mostly leaning on me with crooked legs and walking on right ankle saying it felt better. Monday was a good day he didn't have to hold on much at all, I thought the diet was working and we were getting better. Tuesday he woke up and was rolling in pain refusing to even crawl (crawling has been his main mode of transportation around the house). Today is Friday and he still can't walk or crawl. When he tries he cries in pain.

I have four children and due to Taylor's diagnosis, yes biopsy came back positive yesterday, the other three have been tested. Just found out tonight that two more are very high for celiac and must go in hopefully next week for biopsy. Help!!!!!!!!!!!!!!!!!!!!!

This mom needs to know there is help out there. Does this pain just stay forever? Will my baby ever walk, run, jump, ride a bike or chase his big brothers again?

[Mizzo]

Did your doc do a full blood work on him? What he deficient in any vitamin ? I read leg and arm pain were associated with low iron and/or magnesium. There is a whole other thread on the internet with conversations about it. Ask your doc and make sure you child is getting his vitamins anyway, Its really important for Celiac's.

good luck

[Kay DH]

Symptoms are a bit different for each person. GI symptoms tend to resolve fairly quickly, and joint, muscle, neurologic, skin, and other symptoms can take longer. Mine take about a week. Your doctor should refer you to a dietitian knowledgeable about celiac, because gluten is hidden in some processed food. CC is a big problem, especially in the learning phase on gluten. Cutting boards, pans, toasters, and other kitchen items can contain enough gluten for reactions. You might want to avoid even labeled gluten-free foods for a while because there can still be gluten (processed in plants that process wheat, etc.). I only use certified gluten-free flours. Has he been tested for other food intolerances or allergies, such as dairy?

Early stage of discovery is very frustrating and stressful. Your lives have just changed.

[MacieMay]

Does your son have any weird rashes going on? Anything on his hands, knees or elbows, bilateral?

My daughter has Juvenile Dermatomyositis, which is a muscle/skin autoimmune. The body attacks itself just like Celiac but this effects the muscles and the skin. She has a gluten-intolerance too. That's why I follow this forum. Celiac is an overlap disease of Dermatomyositis. I don't want to scare you but this disease is really rare and is mis-diagnosed A LOT. Early diagnosis and treatment is key. You could private email me if you have any other questions about the disease. I know how scary it is when your child is sick and Dr's don't have the answers.

[eatmeat4good]

Yes leg pain is one of the symptoms my son had too. He had episodes where he couldn't walk normally and would complain that his legs ache often. I think it is a good idea to get their vitamin levels checked. Calcium, D, magnesium deficiencies can cause bone pain. But checking all the vitamin levels is a good idea. There are a lot of knowledgeable supportive people here and they will be a great support to you.

[mommida]

My daughter was not walking this November because her ankle hurt. She was diagnosed with Celiac when she was 16/17 months and then with Eosinophilic Esophagitus when she was 6. There was no discoloration of skin, no swelling, but it kept cracking and snapping. Your local Fire station probably has FREE crutches. If it's hurting him keep weight off of it and don't put your back out mom.

I was totally freaked out, because my niece was diagnosed Reflex Sympathetic Syndrome. It started with ankle pain and she ended up in a wheelchair. She is fine ~now walking and doing normal activities.

It was really frustrating when this happened the ped.'s office was sooo busy I couldn't even get through on the phone and then with the holiday she started walking the day after Thanksgiving.

An extended relative was at Thanksgiving who (works with an ortho or something such) said some sprains take a long time to heal, growth plates can become inflamed and leg pains are common in children and getting a diagnoses for what causes the pain is not common.

[Tay Tay's Momma]

Did your doc do a full blood work on him? What he deficient in any vitamin ? I read leg and arm pain were associated with low iron and/or magnesium. There is a whole other thread on the internet with conversations about it. Ask your doc and make sure you child is getting his vitamins anyway, Its really important for Celiac's.

good luck

We have checked for everything from arthritis (jury is still out on that one) to parasites. Just got a call from doctor this morning that they are going to put him on steroids to speed up the healing process and relieve his pain... Not sure I am comfortable with putting my 8 year old on steroids, at this point I just want him to walk again. Dr. Ward has been so wonderful. Within 2 weeks of the onset of symptoms he had ordered the blood test for celiac with some other labs. He is returning calls after work and on weekends from home, doing extra research on the subject to pinpoint what is causing the ongoing pain and even talking with the GI doctor about the symptoms and ordering biopsies for the other 3 kids after we got their results in Saturday.

[Tay Tay's Momma]

My daughter was not walking this November because her ankle hurt. She was diagnosed with Celiac when she was 16/17 months and then with Eosinophilic Esophagitus when she was 6. There was no discoloration of skin, no swelling, but it kept cracking and snapping. Your local Fire station probably has FREE crutches. If it's hurting him keep weight off of it and don't put your back out mom.

I was totally freaked out, because my niece was diagnosed Reflex Sympathetic Syndrome. It started with ankle pain and she ended up in a wheelchair. She is fine ~now walking and doing normal activities.

It was really frustrating when this happened the ped.'s office was sooo busy I couldn't even get through on the phone and then with the holiday she started walking the day after Thanksgiving.

An extended relative was at Thanksgiving who (works with an ortho or something such) said some sprains take a long time to heal, growth plates can become inflamed and leg pains are common in children and getting a diagnoses for what causes the pain is not common.

At this point crutches won't help. He cannot stand, it hurts too much. He is frustrated with waiting on me to pick him up and is being very inventive with different ways to scoot around. It tortures me to hear it even from another room. He says owe the whole way, even just from chair to chair.

[Tay Tay's Momma]

Did your doc do a full blood work on him? What he deficient in any vitamin ? I read leg and arm pain were associated with low iron and/or magnesium. There is a whole other thread on the internet with conversations about it. Ask your doc and make sure you child is getting his vitamins anyway, Its really important for Celiac's.

good luck

we have been in for blood work at least once a week for the past month, that is when we weren't in the hospital. I will ask about the vitamin deficiency. I have a friend who is a naturalpath, maybe he has some vitamins that are gluten free.

[seezee]

You might want to check for Lyme disease too. My dad was in horrible pain that they could find no cause for with that. He ended up in the hospital for two months. We had a neighbor who had horrible knee pain from Lyme too. I think it's a blood test.

(Daughter has celiac which is why I read posts)

s

[Tay Tay's Momma]

You might want to check for Lyme disease too. My dad was in horrible pain that they could find no cause for with that. He ended up in the hospital for two months. We had a neighbor who had horrible knee pain from Lyme too. I think it's a blood test.

(Daughter has celiac which is why I read posts)

s

He has been on steroids since Wednesday and still not walking. I am supposed to call in to doctor in the morning to update them on progress. They were sure he would be walking by Monday and we could start cutting the dose to wean him off the steroids. Steroids should have helped whether it was arthritis or the celiac disease causing the pain.

I will ask if they ran tests for Lyme disease... they have run tests on everything else.