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Child's Leg Pain Immediately After Going Gluten-Free


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#1 greenbeanie

 
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Posted 13 June 2013 - 04:56 AM

My four-year-old daughter had her endoscopy yesterday, and we went gluten-free immediately afterward. Since she was not allowed to eat before the procedure, the last time she had gluten was about 36 hours ago. This morning she woke up with leg/knee pain so bad that she couldn't stand up. It's only on one side. Massaging it and one dose of ibuprofen helped ease it enough so that she can walk gingerly now, but it's still bothering her.

 

Is this a normal effect of her body cleaning out the gluten? She has had similar knee pain numerous times before. We were told it was toxic synovitis the first time it happened (after x-rays were normal), and that she'd probably be prone to it flaring up whenever she gets even a minor illness. Once we started suspecting celiac, I figured that gluten must have explained the pain. But now that she's just stopped eating gluten, it seems strange for it to flare up now. The nurse from the endoscopy unit said this is not something she'd expect as a lingering effect of yesterday's anesthesia. 

 

I know there was just another thread recently about knee pain after the gluten-free diet is well-established. What I'm wondering now is whether anyone else has a child who experienced this immediately after going gluten-free, and how long it lasted. I know weird stuff can happen as the body detoxifies, and I'm really reluctant to subject her to any more tests and procedures right now. If she's still finding it painful to walk by Monday, I'll certainly call her doctor back then. We're waiting for the results of her vitamin blood tests, so I'm also reluctant to give her any higher doses of specific vitamins and minerals until we get those results and talk to the nutritionist. They did test her B12, folate, and D, though not her magnesium or zinc. Meanwhile, we've started her on a high-quality children's multi-vitamin that does contain normal amounts of those vitamins.

 

 

 


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


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#2 mmcc54

 
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Posted 13 June 2013 - 05:34 AM

My four-year-old daughter had her endoscopy yesterday, and we went gluten-free immediately afterward. Since she was not allowed to eat before the procedure, the last time she had gluten was about 36 hours ago. This morning she woke up with leg/knee pain so bad that she couldn't stand up. It's only on one side. Massaging it and one dose of ibuprofen helped ease it enough so that she can walk gingerly now, but it's still bothering her.

 

Is this a normal effect of her body cleaning out the gluten? She has had similar knee pain numerous times before. We were told it was toxic synovitis the first time it happened (after x-rays were normal), and that she'd probably be prone to it flaring up whenever she gets even a minor illness. Once we started suspecting celiac, I figured that gluten must have explained the pain. But now that she's just stopped eating gluten, it seems strange for it to flare up now. The nurse from the endoscopy unit said this is not something she'd expect as a lingering effect of yesterday's anesthesia. 

 

I know there was just another thread recently about knee pain after the gluten-free diet is well-established. What I'm wondering now is whether anyone else has a child who experienced this immediately after going gluten-free, and how long it lasted. I know weird stuff can happen as the body detoxifies, and I'm really reluctant to subject her to any more tests and procedures right now. If she's still finding it painful to walk by Monday, I'll certainly call her doctor back then. We're waiting for the results of her vitamin blood tests, so I'm also reluctant to give her any higher doses of specific vitamins and minerals until we get those results and talk to the nutritionist. They did test her B12, folate, and D, though not her magnesium or zinc. Meanwhile, we've started her on a high-quality children's multi-vitamin that does contain normal amounts of those vitamins.

My one year old was just diagnosed with celiacs...even though I don't have it im still breastfeeding so went gluten free also...I can tell you for a good 3 days I felt awful..my joints hurt, my stomach hurt I had head aches...but I now feel wonderful...I think it judt takes a bit for you rbody to rid the toxins and such..but as always call your Dr with concerns!! Good luck!


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#3 frieze

 
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Posted 13 June 2013 - 05:45 AM

My one year old was just diagnosed with celiacs...even though I don't have it im still breastfeeding so went gluten free also...I can tell you for a good 3 days I felt awful..my joints hurt, my stomach hurt I had head aches...but I now feel wonderful...I think it judt takes a bit for you rbody to rid the toxins and such..but as always call your Dr with concerns!! Good luck!

Umm, you may not test positive, but you are.  If you had NO problem with gluten, you wouldn't react to its lack......


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#4 nvsmom

 
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Posted 13 June 2013 - 05:47 AM

It could be her body's version of a withdrawal (just my guess). Withdrawal usually hits a few days into gluten-free and it can make you feel pretty ill.

 

It could also be her body's reaction to the procedure. Those sedative and the actual endoscopy might have felt very foreign to her body and perhaps it's reacting - just another guess though.

 

I hope she feels better soon.


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#5 pricklypear1971

 
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Posted 13 June 2013 - 06:19 AM

My son's body and brain did not appreciate the anasthesia. Behavior and stomach problems for a few months.

That said, gluten withdrawal can do weird things.

Has she been tested for vitamin deficiencies? She may need some supplements, especially as she learns to eat gluten-free. Sometimes we inadvertently skew our diet when we start. If she's deficient in something that could contribute to aches/pains.
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#6 greenbeanie

 
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Posted 15 June 2013 - 03:46 AM

I'm happy to report that the leg pains are gone, the withdrawal seems to be over, and I have a calm and cooperative child! After just three days! I sure hope I'm not celebrating too soon, but this is truly amazing. My girl has never been this calm in her life. Phew! So glad that ordeal is over.

Biopsy results and vitamin tests aren't back yet, but with three strong positive blood tests and this response to the diet, I'm sure she really does have celiac. For clarity, I do hope the biopsy comes back positive. But the GI supports our decision to go gluten-free even if the results are equivocal or negative, rather than waiting for more damage to develop.
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#7 Brandiwine

 
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Posted 15 June 2013 - 04:36 AM

So happy for you!! I too had a complete turn around out of my son, I realized that he was acting the way he was then because he just didn't feel good. I found myself asking him all the time "what's wrong?" And he would just start crying and say "I don't know." My poor baby! So happy our children are well and active now!
*Cheers*
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Vegetarian, Gluten Free diet since 03/2013, sensitivity to raw onions, soy, allergic to Cinnamon





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