Trying To Figure Out My 4 Year Old's Joint Pain/body Pain Issues

[FoggedIn]

So my son, who is nearly 4, has been having migratory joint pains for about a year and half.  He also gets headaches and aches in his chest area, and of all places, his boy parts.  He has unexplained rashes that look sort of like very small hives to me (not itchy).  He is very irritable, has disturbed sleep when his symptoms are "flaring", and from time to time runs very high fevers with no explanation (like 105+F).  Our doctor thought maybe it was Juvenile Arthritis, and we have had him checked by a pediatric rheumatologist, but there is no sign of arthritis whatsoever.  We were back to the drawing board this week with our doctor, who is very supportive, and our next step is to run a Celiac and food allergy panel because I have had joint pains with my own gluten/ other sensitivities (unknown if iI have celiac or NCGS b/c I was originally advised to go on a GFD after positive Anti gliadin antibodies test w/o biopsy.  I'm too chicken to do a gluten challenge to find out as my health had become so poor before the GFD.).  Our son has never had any GI issues other than lactose intolerance and lots of gas all the time.  He does go through periods of being very, very thirsty if that is related, but really, my oldest child has way more GI issues than our little guy.  It was the rheumatologist who suggested we test for Celiac.  It's all very peculiar to us.  I am wondering if anyone else's children have presented with joint pains like this?

[greenbeanie]

Welcome to the forum! Sorry your little guy is going through this. My daughter had joint pains that came and went since she was a young toddler, and she was diagnosed with celiac just after she turned four. She had symptoms since early infancy, but the neurological symptoms were always much more prominent than the GI symptoms (though she had those and rashes too). Doctors always said the joint pain was toxic synovitis, which can cause severe joint pain in children when they get a virus, but as far as I know there was no test for toxic synovitis and they just told us that because they couldn't find any other cause (x-rays showed no broken bones, etc.). At the time she couldn't explain her feelings verbally very well, but she'd scream and collapse when we tried to get her to walk on a painful knee, etc. Perhaps it really was toxic synovitis, but her joint pains totally went away after her celiac diagnosis and have not recurred in almost a year and a half since she's been gluten free. She also went through periods of excessive thirst and very frequent urination but always tested negative for UTIs, and that also went away since her celiac diagnosis. I still have no explanation for that, but it seems related somehow.

I'm sure there are lots of other causes of joint pain in children too, but it's definitely worth running the celiac tests. I hope you get some answers soon!

[FoggedIn]

Welcome to the forum! Sorry your little guys is going through this. My daughter had joint pains that came and went since she was a young toddler, and she was diagnosed with celiac just after she turned four. She had symptoms since early infancy, but the neurological symptoms were always much more prominent than the GI symptoms (though she had those and rashes too). Doctors always said the joint pain was toxic synovitis, which can cause severe joint pain in children when they get a virus, but as far as I know there was no test for toxic synovitis and they just told us that because they couldn't find any other cause (x-rays showed no broken bones, etc.). At the time she couldn't explain her feelings verbally very well, but she'd scream and collapse when we tried to get her to walk on a painful knee, etc. Perhaps it really was toxic synovitis, but her joint pains totally went away after her celiac diagnosis and have not recurred in almost a year and a half since she's been gluten free. She also went through periods of excessive thirst and very frequent urination but always tested negative for UTIs, and that also went away since her celiac diagnosis. I still have no explanation for that, but it seems related somehow.

I'm sure there are lots of other causes of joint pain in children too, but it's definitely worth running the celiac tests. I hope you get some answers soon!

Thanks!  And thank you for your reply.  My son's joint symptoms are often worse when he is ill.  Toxic synovitis had occurred to me, but not to the doctors, so I guess it's not that.  I think the hardest part, as you mentioned, is that his young age makes it really hard to understand what is going on and where the pain is.  Is he irritable because something hurts?  When he is having a good day it's like visiting with a little person I used to know but haven't seen in a long while.

[Cara in Boston]

Has he been tested for Lyme?  My celiac son complained of similar symptoms for almost a year.  They symptoms were so similar to his celiac symptoms (fatigue, joint pain, general luckiness) that we were tearing apart our house looking for the hidden gluten.  When we determined through blood tests that it was not being caused by gluten, we started looking elsewhere.  Doctors could find nothing wrong until one industrious intern started asking about any trips to the woods or camping trips (there were none, we live in Boston)  But I did remember a strange bite from the previous summer that was so odd, I took a picture of it.  It was the classic bulls-eye rash of an infected tick bite.  His blood tests were negative for Lyme (not unusual) but the photo and the symptoms were enough for them to treat him and within two weeks of the antibiotics, he was feeling great again. We had to continue the meds for another two weeks just to be sure and haven't had a problem since (2 years)

[FoggedIn]

Has he been tested for Lyme?  My celiac son complained of similar symptoms for almost a year.  They symptoms were so similar to his celiac symptoms (fatigue, joint pain, general luckiness) that we were tearing apart our house looking for the hidden gluten.  When we determined through blood tests that it was not being caused by gluten, we started looking elsewhere.  Doctors could find nothing wrong until one industrious intern started asking about any trips to the woods or camping trips (there were none, we live in Boston)  But I did remember a strange bite from the previous summer that was so odd, I took a picture of it.  It was the classic bulls-eye rash of an infected tick bite.  His blood tests were negative for Lyme (not unusual) but the photo and the symptoms were enough for them to treat him and within two weeks of the antibiotics, he was feeling great again. We had to continue the meds for another two weeks just to be sure and haven't had a problem since (2 years)

 

Thank you for your reply.  We did have him tested for Lyme with the Western Blot test, and it came out negative.  I will keep your experience in mind, though.  I had asked our doctor about possibility of a false negative, and she said it certainly does happen and perhaps if we cannot come up with any answers to re-test him in a few months.  We've never seen a bullseye rash, so I guess without that evidence it makes it a little tougher with the negative blood test.  I'm really glad you shared.  I will keep Lyme on my radar.

[nvsmom]

My kids did not have joint problems but I remember joint pain by late elementary school, and as an adult I associated my joint pain with feeling poorly - I would call it a flare-up.  When I would flare-up I would feel quite flusih but I wasn't truly sick and did not get a cough or runny nose to go with it, and it was followed by weeks or months of sore joints.  In hind sight I think the flare-up caused my fluish symptoms. 

 

My doctor believes my joint pain is caused by celiac disease and I am tentatively optimistic that they are right. As time goes by I get fewer and fewer flare-ups but at over 2 years gluten-free I still get aepsiodes of pain and illness, just not as often, severe or of the same duration.  It is getting better but it is slow... Unfortunately, joint pain and nervous system problems are often the slowest to improve on the gluten-free diet so a patient may have to wait months or years to see a steady improvement.  For me, I was feeling mostly better at just under a year gluten-free.

 

Best wishes.

[weluvgators]

One of our children has joint pain issues, and they seem to be greatly worsened by gluten exposures.  She has been gluten free for most of her life.  She presented with horrible joint issues following prolonged, chronic exposures at school that resulted in chronic, painful skin rashes.  Her first hospitalization resulted in testing for several tick-borne diseases.  In her second hospitalization (it was immobilizing and sometimes roving joint pain - the hospitalisations were due to severe joint pain that settled in her hip leaving her unable to walk - different hip each time). The second hospitalization put us in with a rheumatologist that agreed strict gluten elimination seemed most effective for her.  Eventually, the schools became more accommodating, and the rashes and joint pain abated.  We have since gone to another rheumatologist for a check-up on her progress, as we were overdue for rheumatologist follow-up.  He explained that she has joint hypermobility that lends itself to easy injury, and he also believes that gluten making it worse is a very likely and understandable issue.  He is helping us to address some of the things that we can do to help her manage the joint hypermobility condition.

 

So, all that to share our experiences and suggest that in addition to a gluten connection, you may also want to consider tick-borne diseases and joint hypermobility syndromes.

 

Someday, I want to spend some time researching the joint hypermobility issues.  I want to understand if joint hypermobility is related to connective tissue disorders and understand if those are likely presentations of celiac/gluten issues.

[Cara in Boston]

I felt like our lyme diagnosis journey was VERY similar to our Celiac diagnosis journey.  Odd/conflicting blood test results, un-informed doctors, lots of "evidence" but some doctors rigidly sticking to outdated information.  In fact, if I hadn't already been through it with his Celiac, I probably wouldn't have thought to even question anything the doctors told me.

[FoggedIn]

Thank you for the replies, stories, and ideas.  I appreciate the input very much.  We should receive some lab work results this week.  We tested for Celiac, food/environmental allergies, vit. D, and a couple other things that I decided to make myself NOT google, because I need a stress break!  We've already done a full CBC, Lyme, Sed rate, ANA, and other stuff.  The only things that we know are off are low hemoglobin (10.6, should be 11-13), slightly raised platelets (can't remember the number, but was only slight), and a low titer ANA.  It's just weird, and we have had a hard time going back and forth on if we should worry or not.  The joint pain is not so bad that he cannot use the joint, and does not stay painful long enough in one place as to cause damage (thank goodness).  The headaches are not terribly frequent, nor the tummy complaints, but taken all together makes for more irritable days than not.  weluvgators, my sister has a connective tissue disease called Ehlers Danlos, and we are pretty sure my son does not have anything to that extent, but I have wondered if hypermobility could be causing his frequent aches and pains.  nvsmom, I'm glad you shared your experience.   We have been keeping a daily log of his symptoms for a couple months now, so we can see any changes if/when we decide it is appropriate to try and modify his diet.

[mommyto2kids]

It doesn't sound like celiac. I hope you find the answer soon . Hugs. The fever is not usually a part of celiac. My dd screamed in k that her bones hurt, all the time. No one believed her. It must really hurt to grow.