Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Child's Leg Pain Immediately After Going Gluten-Free


greenbeanie

Recommended Posts

greenbeanie Enthusiast

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.

 

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mmcc54 Contributor

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!

frieze Community Regular

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......

nvsmom Community Regular

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.

pricklypear1971 Community Regular

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.

greenbeanie Enthusiast

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.

Brandiwine Contributor

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*


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,807
    • Most Online (within 30 mins)
      7,748

    CeceNV
    Newest Member
    CeceNV
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.