my son is 3 and has had diabetes a little over a year now. he has had sporadic, sometimes debilitating "bone" pain...usually right below the knee, the top of the foot or around his elbow for about 8 or 9 mnths. he also has abdominal pain that can be pretty severe but all of these things seem to be temporary. he did end up in the hospital for refusing to walk on his leg for 24 hours and ended up having an effusion in his hip joint but i dont think that is related to any of the other pain. sometimes he wakes up in the middle of the night screaming in pain. he has had 2 tests for celiac (standard blood test) and both were neg. i have heard that celiac can present with these types of symptoms and am wondering if perhaps he has it and it is just not showing up in the standard test. we have considered going gluten free but it seems like a big change for our family. it seems alot more expensive and we are already strapped and have 5 other children so paying 3-5 dollars a loaf for gluten free bread doesnt seem worth it if i am not sure that he may have celiac. any experience with this?? does it sound like the manifestation of celiac or maybe something else??
I can't really speak knowledgeably about whether those symptoms fit exactly, except to say pretty much anything *could* be a symptom of Celiac. Certainly if he's got Type I DM he's at a much higher risk of CD.
Do you know what test(s) they ran for Celiac? Sometimes they'll just run the IgA anti-gliadin, which isn't very sensitive. If someone is IgA deficient (rare, but more common with CD), they will automatically test negative on that one. More accurate is the full celiac panel, which is typically four tests (off the top of my head - Antigliadin IgA, Total IgA, Endomysial Antibodies, and ... blanking on the fourth). Most doctors will tell you if the blood test is negative, that's the final word and will refuse to do a biopsy. Some believe that the blood antibody levels will only test positive when there is severe enough damage... Testing has a long way to go. Have they checked any of his vitamin levels? B12, folate, D, iron...? Since CD can cause vitamin deficiencies, which in turn cause the symtpoms, vitamin levels can be a clue.
I won't lie to you - going GF is work, especially the first month. It doesn't necessarily have to be crazy expensive though. If you avoid bread & other gluten substitutes as much as possible, you have a lot of options with regular supermarket food. Instead of sandwiches, you can make quesadillas with corn tortillas. Things like chili that can be served over rice - cornbread is easy to adapt. Brown rice pasta with jarred or homemade spaghetti sauce. Chicken nuggets made with crushed rice chex instead of bread crumbs. There's a blog called I think Crockpot365 by a gluten-free mom - tons of easy, economical & kid-friendly recipes there. Rice, beans, potatoes, chicken, frozen veggies - there's lots of cheap eats that are GF.
If you decide to go that route, set yourself a clear goal - 3 weeks, for example - it becomes finite and manageable. If it doesn't work, you're done. If it does, at least your son is getting healthier, and soon enough you develop strategies so that the GF thing becomes second nature. There is so much information online these days, I don't know how people did this 10, 20 years ago! I recently found a recipe for the most amazing bread, ridiculously easy, and I am in seventh heaven! It's the little things ;)...
At any rate, keep pushing those doctors til you or they figure out what's going on. If you haven't already, ask for a copy of all his test results for your file, and give them a read yourself. You'd think the doctors would tell you everything, but the written records often contain surprises. Best of luck!
i am not sure which test they have run...probably just the basic igA or whatever that you talked about. yes, i know he is at an increased risk which is why i am worried.
the reason i am worried about the expense is that he survives mostly on sandwiches and pasta which really leaves him eating alot of bread. he eats lots of fruit and veggies also but doesnt eat potatoes, and rice is a toss up. he is picky about meat as well. we eat a realatively balanced diet but my kids eat a little sporadically becasue they are served what is made and it is not always something they like :)
i know it is something we would get used to, eventually ;)
i will definatly ask for a copy of the bloodwork and maybe ask for the more extensive testing form his endo if he hasnt done it yet.
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