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Don't Know What To Do With My Kids

lc1333

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lc1333 Apprentice
lc1333
Posted

so, here we go again with the docs. i had neg. bloodwork, but a positive biopsy, so i had to start the process of testing my 4 kids. they, too all had negative bloodwork, so their pediatrician referred them to a pediatric GI, starting with my daughter. her appointment is in the middle of March. meanwhile, my youngest (10 yrs old) is having stomach cramps bad enough to wake him in the middle of the night and keep him home from school, and he says they have been getting so much worse over the past couple of weeks. He's had this problem for many years, at 6 they told me he had colic, and then at about 8 they called it "nonspecific abdominal pains." None of them did any testing at all. I called the pediatrician today and the nurse called me back and told me the doc would read the status update and call me back on monday with some suggestions, but in the meanwhile, "cut back on his gluten intake for the weekend and see if it helps, don't cut it all out, because that would potentially mess up any tests, but to cut it back." With all due respect, what good does cutting back on it do? if he's reacting, won't he react to ANY amount of gluten he's eating? Cutting back doesn't make sense to me? I know he can't cut it out completely. What am i missing? And what do I do for him in the next month while he's doubled over in cramps? And I'm good with the idea that he doesn't have celiac, but if not then what is his problem, and why are the docs ok with making him wait potentially months to figure it out?

btw, he doesn't have any other symptoms other than being very slight in build (4'10" and 63 lbs) and really bad teeth (no enamel on some of them)

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rosetapper23 Explorer
rosetapper23
Posted

This is a difficult situation, for sure...but I think your first responsibility is to protect your children. The one that is experiencing terrible stomach pain and also has bad teeth should definitely be taken off gluten entirely. The doctors will continue to make you and your children jump through hoops and then will probably incorrectly diagnose all of you in the end anyhow. You're smart enough to know that removing gluten will probably diffuse the situation and relieve your child's pain and suffering. In such a situation, I would simply make the whole family go gluten free and be done with it. It's a shame that the medical community so poorly understands celiac and how immediate testing is necessary, because requiring people to eat any amount of what is considered a poison for many of us is insane.

Do what you think it best for you and your children. The medical community, for the most part, is clueless. You hold the key to helping your children grow up healthy and strong.

researchmomma Contributor
researchmomma
Posted

One thing you may want to try is calling the GI office and telling them how sick your son is and see if there are cancellations. Let them know he can't sleep and he is having trouble eating. It's worth a shot. My friend's son had to wait 7 weeks after very positive blood work to get their biopsy. There is just something wrong with that picture.

Good luck.

faithforlife Apprentice
faithforlife
Posted

One thing you may want to try is calling the GI office and telling them how sick your son is and see if there are cancellations. Let them know he can't sleep and he is having trouble eating. It's worth a shot. My friend's son had to wait 7 weeks after very positive blood work to get their biopsy. There is just something wrong with that picture.

Good luck.

Yes my family doc was calling the GI repetitively to get us in ASAP on the basis of painful symptoms.

lc1333 Apprentice
lc1333
Posted
  • Author

thanks for the advice y'all.

i think i will just start calling to get him in earlier, maybe they'll just switch my daughter's appointment for him. that'll at least get him in first, in the middle of March. i just felt so horrible looking at him balled up on the couch and having to tell him, the doctor will call back monday, we just have to wait and see, i couldn't help him, it's such a horrible feeling, especially knowing we may have the answer and telling him that it could be the gluten, but he has to keep eating it.

and i also think i'm just gonna ask if their pediatrician can run the genetic testing, that's gotta go faster than waiting for weeks to see the GI doc. right?

and then to top it off, my 17 yr old son loves cheez its, so i bought him a box and two hours later i had to listen to him running up and down the stairs every ten minutes to go to the bathroom because he was soooo sick

it's like they're dropping like flies...but i can also look back in retrospect and see that this has been a family wide issue literally forever, so many things make sense now, we all get mouth ulcers, three of my four kids are in the 3rd - 4th percentile for weight, my other son is ALWAYS starving, thinks about nothing but food and when he can eat again, he's the only one that maintains a healthy weight, my youngest has no enamel on some of his (permanent) teeth, one has already been pulled, and he's only 10, all of them get sick if they drink soda (which of course isn't that bad!). i don't know, so many puzzle pieces just seem to fit together...

i'm ready to make my entire house gluten free, but i don't want to do it too soon and sabotage their testing...

Roda Rising Star
Roda
Posted

I had my oldest son(11) blood tested every year since I was diagnosed because he was so much like me as a child. After his younger brother was diagnosed 15 months ago, I realized my oldest had almost quit growing the whole year of 4th grade and was falling on his growth chart. He was also complaining of daily stomach aches, constipation, nausea, gas and bloating. I consulted with a GI and she agreed to scope him despite his negative blood work. His scope/biopsy was normal also. I decided with him to trial him gluten free. OMG the changes. All of his symptoms went away, he gained weight and has started growing. He did challenge gluten after three months and did have some minor symptoms but he didn't eat a whole lot. He has decided to stay gluten free because he said he feels better. GI doc is on board also. So at the very least he is gluten intolerant.

So even if all his testing comes back negative give the diet a good trial to see if it helps. It certainly won't hurt. With his symptoms and your diagnosis he is at increased risk.

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