My 6 Year Old Just Diagnosed - Question About Reflexes

[Mayasmum]

Phew! A place to get some answers!

My 6 year old had her celiac panel come back positive. We had been on a gluten-free/DF diet for 2-3 months when her test still came back positive.

We only found out because we were testing her D levels and allergy testing and our dr decided to do celiacs as well. T'was a bit of a shock.

She is seeing a chiro and when we had her consultation, he checked her reflexes and she did not have any at all in her knees. Two weeks later, still nothing.

Something deep in my gut is telling me this is important, and I am worried.

We are going to see a dietician tomorrow, but apart from that - not sure what our plan of action should be.

I would prefer not to do a biopsy if at all possible (I hate anesthetic and kids), our family practice doc agreed because her results were so positive.

My son (3) and I are eating some gluten again, he and I show quite a few symptoms, we are having the test at the end of the month, we are only eating 1 slice of bread a day, am hoping that is enough as the joint pain I have (and have had since bring 18 - no dx ever made, arthritis ruled out) is not fun, as is the brain fog.

So...reflexes? Any input please, and what else should I be asking for.

With thanks

Sarah

[shadowicewolf]

Some people do not react to the knee reflex thing. I certainly don't (which doctors have said it was fine). I also have motorskill issues (i cannot, for example, skip, do anything that requires a lot of balence (such as a climbing up rocks and down them, or somewhat steep surfaces), i have to see going down stairs or else i loose my balance somewhat (weird huh?), etc). I also had a lot of issues when i was younger with walking and whatnot.

Also,, i have bad knees (they aren't aligned properly with my body, which i found out years ago). They ache when i walk to much or if i'm on concrete to long or if a storm is coming in. No arthritis, no nothing. I've had multiple xrays and have went through physical theraphy.

I thought i'd add that i don't remember them moving. My mom says they may have moved a smidge, but i don't ever remember it and i believe the doctor noted it as it was done.

[Mayasmum]

Thanks - I know she had reflexes before, which is why I am concerned. She had complained about her legs before, but her old dr put it down to growing pains....

[nvsmom]

Slow reflexes can also be a sign of hypothyroidism (Hashimoto's) which is more common amoungst celiacs than the regular population. To test thyroid function, request a TSH (should be near a 1), free T4 and free T3, and TPO ab (to see if there are antibodies attacking the thyroid).

Best of luck. I hope you find some answers.

[mommida]

I think this can resolve on a gluten free diet and better absorbtion of vitamins, minerals, and fats.

So work with her doctor and definately explain what is going on, so further tests can be run.

[Mayasmum]

Thank you - we met with a dietician today and are definitely going to run more blood tests to check her out a bit more. We had only run the celiacs panel and a CBC before.

[mamaupupup]

Hang in there! Previous posters alerted you to some really good additional information--especially the thyroid stuff. From what we are learning, it takes 6-12+ months for kiddos' bellies to heal and 12-36 months for adults to heal.

In our family, we had one 6 yr old who had a REALLY difficult first three months off of gluten. I don't really understand why, it just was very hard on her--lots and lots of belly aches--and some leg pain and then it all evaporated. Our other twin went from intense muscle/joint/bone aches with itching 2-3 x a week to about 1x a month. We happened to be at our (rockstar) cardiologist who asked how the girls are doing...I told him about the remaining aches and itching. He said, "Reduce her lectin intake and see how she does." (I had no idea what lectins even were). We've cut out tomato and bell peppers (of which we ate a lot of) and she has been 100% since.

The trickiest part of Celiac and all of this is that every individual is different. This forum is so excellent because so many people openly share their experiences. Take what works for you and your family! Wishing you as smooth a path as possible to full returned health for you and your kiddos!

[Mayasmum]

Thank you! - we go to her dr's tomorrow so I am mentioning this and what steps to take next.