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Question About Test Results- And Help Deciphering Foot Pain!


MitziG

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MitziG Enthusiast

My 8 yo just had follow up blood work done 15 mos post dx. TTG was finally negative at 3 (last check was still elevated) EMA was still positive. They never did EMA on myself or dd, so I guess I am unsure if this is a test I can expect to stay positive, or will it eventually drop to 0?

Everything else looked pretty good- his elevated TSH dropped considerably and is now within normal- I attribute that to being casein free. It kept going up steadily for 10 mos prior to going off casein. I will keep an eye on it. TPO antibodies also dropped.

Hemoglobin was good, well within normal, and ferritin came up as well too. Total iron was lower though- anyone explain why? He was severely anemic a year ago so trying to keep tabs.

So, his depression and anxiety are gone, hyperactivity is much better, scotopic sensitivity improving...we are making progress.

The only remaining issue is the never ending foot pain. His feet hurt almost constantly, much worse if he is glutened. Now he complains about having electric shock sensations though in his feet. B12 is very good, A E, D and K are also good.

His doctor seems to dismiss it...but I am not. What should our next stp be? Podiatrist or neurologist?


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Happyw5 Explorer

Where does his foot hurt? My son complains of foot pain in his heel and goes up his leg a little. I took him to the dr and they said it was just growing pains. I don't know if I believe them!

MitziG Enthusiast

It is the soles of his feet, mostly the ball. And I don't believe growing pains exist! When I get glutened, my feet and legs ache so badly I have to soak in a hot bath for hours, just to keep from crying!

Sesara Rookie

I know that other parents on here have talked about their kiddos getting diagnosed or looked at for JRA before finally getting a Celiac diagnosis, and it turned out that the gluten was causing painful joint inflammation very similar to RA.

However, growing pains are very real. My husband would get them, always at night, usually in his feet, knees, hips, and lower back, and then he would shoot up or change shoe sizes in the next several days. My son used to get them too, and has been showing some evidence of them in concurrence with this growth spurt we are finally having after a year of no growth. His are all in the same places as my husband and he only complains to me about them at night, and I can tell that he has just outgrown his 18 month onesie in a few days, so I really do believe it is from growing.

However, if your kiddos complain of them and then don't grow, they are probably not growing pains, which are very specific.

MoMof2Boyz Enthusiast

Has he been checked for lyme disease?I *think* I've read about some people getting those electric shock feelings...just an idea!!

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      Your doctor's recommendation to wait three months is very sound and aligns with general advice for celiac disease. While the acute GI symptoms resolve quickly, the autoimmune response and intestinal inflammation can linger, impairing nutrient absorption crucial for early fetal development. This three-month window allows your body to calm the immune response and for your gut to fully heal, ensuring you are in the best possible nutritional health for conception and pregnancy. In the meantime, focus on hydrating, eating nourishing, easily digestible foods, and resting—your body needs time to recover. It's a frustrating delay, but it's the best step for a healthy pregnancy.
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      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
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