Daughter Experiencing Joint And Muscle Aches/pains

[lynnmb]

My 12 year old daughter was diagnosed with Celiac in June of 2010 and has done remarkably well since diet changes and has had a HUGE growth spurt. She is very active and dances 4 times per week including high impact competitive danceline. She has been experiencing all kinds of pains and injuries ranging from knee to hip and foot. She has been to a PT to address knee problem and it has been assumed that many of her complaints may be due to rapid growth and her body adjusting/changing. We visited her pediatrician today and the subject of rheumatoid arthritis came up. Anyone else out there with similar experiences. Should I wait and see how she adjusts to the dramatic growth? At what point do we pursue looking into arthritis as another autoimmune potential problem?

[Marlie]

My 12 year old daughter was diagnosed with Celiac in June of 2010 and has done remarkably well since diet changes and has had a HUGE growth spurt. She is very active and dances 4 times per week including high impact competitive danceline. She has been experiencing all kinds of pains and injuries ranging from knee to hip and foot. She has been to a PT to address knee problem and it has been assumed that many of her complaints may be due to rapid growth and her body adjusting/changing. We visited her pediatrician today and the subject of rheumatoid arthritis came up. Anyone else out there with similar experiences. Should I wait and see how she adjusts to the dramatic growth? At what point do we pursue looking into arthritis as another autoimmune potential problem?

My daughter is 13 and we just were diagnosed this month. She was feeling better after going Gluten Free but she is getting new symptoms like the Asthma she was diagnosed with today. She is now suffering from knee pain. I'm not sure what to do myself. I know she is Vitamin D deficient as of today and I am hoping this is the cause of her current problems, but I really don't know. I can tell you my daughter has had many fractures in the past. Please post what you come up with.

[weluvgators]

We have a couple of family members that have joint pain as a symptom of gluten exposure. We have to be very, very careful in our food consumption to ensure that we eat as gluten free as possible. We have had a horrific arthritic event that appeared to be triggered by more than usual consumption of "gluten free" food for one of our children. We now eat a whole foods diet, and we wash all of our food (whole grains too). If we use flour, we use flours that we grind from our washed grains. I would look first at your diet to see if there are foods that may be exacerbating the arthritic situation. That being said, we have had to rely on prescription anti-inflammatories in the past to help us through past episodes. But then we had to add acid blockers to help prevent damage from the anti-inflammatory, and it is a vicious cycle.

We are working with our medical providers to identify supplements that will help our situation, as well we had to look hard to figure out an intestinal infection that was also complicating our issues for one of us. We have since treated that infection. It turned out that our DD's gut was a mess, and she was not properly absorbing her nutrition. That creates all kinds of problems. It has taken much more than just a gluten free diet to help our DD get out of this hole, and we have not yet retested to see if her gut has improved (her overall symptoms have improved dramatically, although she remains gluten hypersensitive). We did end up at rheumatology, and her parting words (hopefully we will not be back there!) were that our inability to reintroduce process foods was probably a "good" thing. As a busy mom of three, well . . .it is life, and our family is in this all together. Thankfully?, four of us are gluten hypersensitive, so we really are in this all together. The family support has been a tremendous help and blessing for us all, and we all have our super duper silly girl to thank for her wisdom and insight at such an early age.

In addition to joint issues (my mom has several joint replacements!! and she justifies them as "lifestyle" . . . hard to reconsider that maybe it could all have been avoided . . . .) we also have some complicated cutaneous and respiratory symptoms of gluten exposure. We have to be very careful in our daily decisions as to what we eat and where we go.

Marlie, our DD has a couple of fractures already that are explained by "life", but they are also a function of joint hypermobility and balance/motor coordination issues that are worsened by gluten exposure (we are also dairy and soy free, but gluten appears to be the most triggering antigen for us). Our DD was not properly absorbing her nutrition (and supplements!) due to her intestinal damage (we hope treating that gut infection has improved her gut). We hope that we are moving in the right direction, but we have had to consult with many doctors to make the progress we are making. Just keep on pushing and advocating for your child! Have you considered doing a gluten free home trial for your daughter? My asthma is triggered by any gluten airborne exposure, and that can be incredibly difficult to navigate. I am trying to "fix" myself to be more resilient, but it is so hard. I would discuss evaluating your DD's bone health with your medical provider(s) to figure out if there is a problem that should have some focused effort and intervention now.

I had extensive joint pain myself that started around 12 years of age, long before I came to understand my celiac nature. We treated it with anti-inflammatories (not helping my already temperamental gut there!), braces, tape, ice, therapy, etc. I can now control my joint flares with diet control. I do also use a bioelectric magnetic energy regulation device that I have found to be wonderfully helpful for joint pain. I can expand on that if you are interested. But primarily, it is best controlled for me by diet.

We have continued to push for PT and OT for our DD to help her through some of her issues, and we have found it to be wonderfully helpful. It is also nice to have another person invested in her developement on a more regular basis that can help document, discuss and troubleshoot problems as they arise.

Good luck in finding knowledgeable healthcare providers to help you navigate this with your children. We have found it helpful to reach out to the local celiac and gluten intolerance support groups to help find medical providers that are knowledgeable in the issues that we face.

[davidsmomceliac12]

My daughter is 13 and we just were diagnosed this month. She was feeling better after going Gluten Free but she is getting new symptoms like the Asthma she was diagnosed with today. She is now suffering from knee pain. I'm not sure what to do myself. I know she is Vitamin D deficient as of today and I am hoping this is the cause of her current problems, but I really don't know. I can tell you my daughter has had many fractures in the past. Please post what you come up with.

i dont' know if i am responding right because i am new to this site. but my son david was diagnosed in sept of 09.he did well at first and then all that changed as time went on he developed colitis both in the esophagus and colon and illitas witch is a disease in the mussel in the stomach. now he is in pain with back and leg and joint everyday and all the symptoms we have been fighting for almost 3 years are back and he is getting sick all the time. now they think he is touch sensitive witch means if he touches gluten he can get sick.the problem is his body is collecting autoimmune diseases and the only way to stop that is to stop the immune system. he has already been on chemo drugs and now they may be putting him on full chemo so yes we are having some of the same difficulty's and the biggest problem i have ran into is the docs DON'T LISTEN!make them do the tests don't let them push you out the door with what they THINK is going on because 9 times out of 10 they are wrong and are doing more damage than good.the immune system is like the bowel they are the brats of the body and you must cater to them or in my case stop them all together. i hope this helps and i pray your babies get better.

[lynnmb]

We have a couple of family members that have joint pain as a symptom of gluten exposure. We have to be very, very careful in our food consumption to ensure that we eat as gluten free as possible. We have had a horrific arthritic event that appeared to be triggered by more than usual consumption of "gluten free" food for one of our children. We now eat a whole foods diet, and we wash all of our food (whole grains too). If we use flour, we use flours that we grind from our washed grains. I would look first at your diet to see if there are foods that may be exacerbating the arthritic situation. That being said, we have had to rely on prescription anti-inflammatories in the past to help us through past episodes. But then we had to add acid blockers to help prevent damage from the anti-inflammatory, and it is a vicious cycle.

We are working with our medical providers to identify supplements that will help our situation, as well we had to look hard to figure out an intestinal infection that was also complicating our issues for one of us. We have since treated that infection. It turned out that our DD's gut was a mess, and she was not properly absorbing her nutrition. That creates all kinds of problems. It has taken much more than just a gluten free diet to help our DD get out of this hole, and we have not yet retested to see if her gut has improved (her overall symptoms have improved dramatically, although she remains gluten hypersensitive). We did end up at rheumatology, and her parting words (hopefully we will not be back there!) were that our inability to reintroduce process foods was probably a "good" thing. As a busy mom of three, well . . .it is life, and our family is in this all together. Thankfully?, four of us are gluten hypersensitive, so we really are in this all together. The family support has been a tremendous help and blessing for us all, and we all have our super duper silly girl to thank for her wisdom and insight at such an early age.

In addition to joint issues (my mom has several joint replacements!! and she justifies them as "lifestyle" . . . hard to reconsider that maybe it could all have been avoided . . . .) we also have some complicated cutaneous and respiratory symptoms of gluten exposure. We have to be very careful in our daily decisions as to what we eat and where we go.

Marlie, our DD has a couple of fractures already that are explained by "life", but they are also a function of joint hypermobility and balance/motor coordination issues that are worsened by gluten exposure (we are also dairy and soy free, but gluten appears to be the most triggering antigen for us). Our DD was not properly absorbing her nutrition (and supplements!) due to her intestinal damage (we hope treating that gut infection has improved her gut). We hope that we are moving in the right direction, but we have had to consult with many doctors to make the progress we are making. Just keep on pushing and advocating for your child! Have you considered doing a gluten free home trial for your daughter? My asthma is triggered by any gluten airborne exposure, and that can be incredibly difficult to navigate. I am trying to "fix" myself to be more resilient, but it is so hard. I would discuss evaluating your DD's bone health with your medical provider(s) to figure out if there is a problem that should have some focused effort and intervention now.

I had extensive joint pain myself that started around 12 years of age, long before I came to understand my celiac nature. We treated it with anti-inflammatories (not helping my already temperamental gut there!), braces, tape, ice, therapy, etc. I can now control my joint flares with diet control. I do also use a bioelectric magnetic energy regulation device that I have found to be wonderfully helpful for joint pain. I can expand on that if you are interested. But primarily, it is best controlled for me by diet.

We have continued to push for PT and OT for our DD to help her through some of her issues, and we have found it to be wonderfully helpful. It is also nice to have another person invested in her developement on a more regular basis that can help document, discuss and troubleshoot problems as they arise.

Good luck in finding knowledgeable healthcare providers to help you navigate this with your children. We have found it helpful to reach out to the local celiac and gluten intolerance support groups to help find medical providers that are knowledgeable in the issues that we face.

Thank you for your response, my daughter is indeed a diagnosed Celiac and has been gluten free for over 6 months now. I am very careful with all food prep and use mostly organic, including meats from reputable farmers and use my own organic veggies etc. She has been exposed twice since diagnosis and has presented with stomach and headache symptoms. She did experience joint and muscle pain before diagnosis as well, but it is certainly more magnified with her recent growth spurt. I called our pediatric Gastroenterologist to inquire about this concern and was shocked that I received no useful information. I think her pediatrician will be more helpful and also is the one who alerted me to arthritis as a potential problem. She will help us look into this if we have continued pain etc. I am interested in the bioelectric magnetic devise you mentioned and if you have time to explain, it would be appreciated. Thanks!

[lynnmb]

My daughter is 13 and we just were diagnosed this month. She was feeling better after going Gluten Free but she is getting new symptoms like the Asthma she was diagnosed with today. She is now suffering from knee pain. I'm not sure what to do myself. I know she is Vitamin D deficient as of today and I am hoping this is the cause of her current problems, but I really don't know. I can tell you my daughter has had many fractures in the past. Please post what you come up with.

Sorry to hear about your daughters asthma. Mine actually had improvement in allergy and asthma symptoms since being gluten free. I do know about knee pain however, my daughter has experienced much of that as well as hip and ankle/foot and large muscle issues. She has had on and off problems both before and after diagnosis. It sounds like this is not an uncommon problem among Celiacs. We found an excellent sports medicine physician who looked at the knee issue and assured us that it would improve as muscle strength caught up with bone growth. She uses a knee brace for support and has been to physical therapy. I also have a dear friend who is a PT and have spent a great deal of time discussing issues with her. She also believes much of my daughter issues are due to rapid growth and the inability of muscles to keep up with it. I am hoping that this really is the issue and not rheumatoid arthritis. I am planning to attend a local Celiac support group to talk first hand with others who may have experienced similar issues. I am not going to let this problem just fall through the cracks, much as the diagnosis for her Celiacs did for years.

I appreciate the mention of vitamin D deficiency, that is something I should look into as well. Good luck to you and if I find any useful information, I will be sure to post!

[potatopeelingmom]

My daughter is 13 and we just were diagnosed this month. She was feeling better after going Gluten Free but she is getting new symptoms like the Asthma she was diagnosed with today. She is now suffering from knee pain. I'm not sure what to do myself. I know she is Vitamin D deficient as of today and I am hoping this is the cause of her current problems, but I really don't know. I can tell you my daughter has had many fractures in the past. Please post what you come up with.

Hi Marlie and all,

I find your daughter's history very interesting. My son was finally diagnosed with Celiac last year. He is now 12. He has had 3 fractures... femur at age 2, tibia/fibula at age 5, and toe last summer. Calcium is a huge requirement for Celiac's esp. children that have not completed growing their bones. Also, vit D. We see a Naturopath for vitamin supplements and direction, but my son's GI specialist told me that I could not give him too much calcium.

My son was also wheezy... I avoided him being diagnosed for asthma as I did not want him to take puffers and steroids. Instead he was taking some homeopathy and using Respiractin as needed. But, a few months ago we realized that he was getting his hives from trace amounts of soy in Almond Breeze. We stopped all sources of soy in his diet.... and not only did all the hives stop, but he completely stopped wheezing. He has been wheezing for the last two years. Its amazing. No Doctor or even our Naturopath told us to stop soy. We had to figure it out ourselves.

Take care,

Monica

[Kimmik95]

My son (he'll be 7 in a few days) was diagnosed a few months ago with celiac disease and the diagnosis all came about because of joint pain. I kept saying he was having growing pains because he constantly complained that the back of his knees really hurt to the point that he took pain meds every night and used a heating pad. After my mom pointed out he wasn't growing, I took him to his ped, who did a simple blood test which showed a marker for RA. We went to a pediatric RA specialist, who ruled it out and did a blood test for celiac disease, which was shortly thereafter confirmed through bloodwork and an endo. When he gets glutened, it shows up as severe irritability, joint pain, and sometimes a tic. At his last GI appointment, he was still dealing with the ramifications of a glutening almost 2 months previously and the GI doctor said that if we didn't see an improvement shortly, we should go back to the RA doctor. It cleared up totally within a few days.

However, RA is an autoimmune disease and they (autoimmune diseases) often go hand in hand. It's a very simple checkup to rule out arthritis. If she does has arthritis, you'll want to know. I would really double check her diet and make sure she's not getting any gluten anywhere as well. Recheck ingredients in favorites, etc.

Good luck and I hope it is just growing pains! She is at the age for them.

My 12 year old daughter was diagnosed with Celiac in June of 2010 and has done remarkably well since diet changes and has had a HUGE growth spurt. She is very active and dances 4 times per week including high impact competitive danceline. She has been experiencing all kinds of pains and injuries ranging from knee to hip and foot. She has been to a PT to address knee problem and it has been assumed that many of her complaints may be due to rapid growth and her body adjusting/changing. We visited her pediatrician today and the subject of rheumatoid arthritis came up. Anyone else out there with similar experiences. Should I wait and see how she adjusts to the dramatic growth? At what point do we pursue looking into arthritis as another autoimmune potential problem?

[mikyraso]

My son (he'll be 7 in a few days) was diagnosed a few months ago with celiac disease and the diagnosis all came about because of joint pain. I kept saying he was having growing pains because he constantly complained that the back of his knees really hurt to the point that he took pain meds every night and used a heating pad. After my mom pointed out he wasn't growing, I took him to his ped, who did a simple blood test which showed a marker for RA. We went to a pediatric RA specialist, who ruled it out and did a blood test for celiac disease, which was shortly thereafter confirmed through bloodwork and an endo. When he gets glutened, it shows up as severe irritability, joint pain, and sometimes a tic. At his last GI appointment, he was still dealing with the ramifications of a glutening almost 2 months previously and the GI doctor said that if we didn't see an improvement shortly, we should go back to the RA doctor. It cleared up totally within a few days.

However, RA is an autoimmune disease and they (autoimmune diseases) often go hand in hand. It's a very simple checkup to rule out arthritis. If she does has arthritis, you'll want to know. I would really double check her diet and make sure she's not getting any gluten anywhere as well. Recheck ingredients in favorites, etc.

Good luck and I hope it is just growing pains! She is at the age for them.

I have a question for you about RA. I have a good friend who's DD was Diagnosed with RA, she is only 13, and she has spells where her pain ix out of control and thus she has to stay home and in bed. Do you think that a gluten-free diet would help her symptoms?