Just Diagnosed Teen Who's Mom Needs Help With Vitamins

[Marlie]

My daughter (13) was diagnosed with Celiac Disease just recently. I can't get into see a nutritionist for months. Generally speaking do nutritionists order blood work to look for vitamin deficiencies or the general doctor. What panels should be ordered in any case. The GI doctor doesn't want a follow up visit for six months. In the meantime I'm worried about the malnutrition issues and don't know what to do. Should I be worried? Are there vitamins she should be taking and if so, what? She was very sick before being diagnosed. Most recently she has been exhausted, dizzy, nauseated, rapid pulse, headaches, stomach pain so severe we ended up in hospital which led to this diagnosis. Prior to this she has had about 7 or 8 growth plate fractures, hair loss (alopecia), acne that we couldn't get to respond to any treatment (seems to be responding to gluten free) and developed discolored skin near her neck and chest that appears to look like dirt but is not.

She's been eating gluten free almost two weeks now but I still feel somewhat left in the dark. I have educated myself on the gluten free diet and cross contamination, however, I feel like I'm on my own for now with no advice from the medical community.

For example should I be worried about her when her pulse goes up. Typically her pulse is between 60-80 but it has been sometimes going over 100 doing virtually nothing or light exercise. Her hands will get cold. I know these can be symptoms of anemia but doctor says no. Although I do know her subset red blood cell counts do fluctuate and sometimes are slightly below what is considered normal by the testing labs but I'm told by doctors they are normal.

Thanks so much.

[rosetapper23]

Normally, a doctor would run a panel right away to see what nutritional deficiencies your daughter might have. I don't know why there would be any reluctance on the doctor's part in this regard.

Since you're receiving no help from the doctor, here is a list of symptoms that can be exhibited based on various nutritional deficiencies--your daughter's symptoms seem to match up with several of them:

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[Marlie]

Normally, a doctor would run a panel right away to see what nutritional deficiencies your daughter might have. I don't know why there would be any reluctance on the doctor's part in this regard.

Since you're receiving no help from the doctor, here is a list of symptoms that can be exhibited based on various nutritional deficiencies--your daughter's symptoms seem to match up with several of them:

Open Original Shared Link

I thought it was kind of weird. Thanks for the info.

[mushroom]

Yes, this is the role of your GP, now that she knows your daughter is celiac. The commonest deficiencies to be tested for in celiacs are Vitamins D, B12, and A, E and K. Then she needs to be checked for deficiencies in potassium, magnesium, zinc, iron/ferritin, and it is a good idea to test the thyroid function too as many celiacs are hypothyroid. That would be a good starting panel. If all these are normal, then probably a good multivitamin/mineral supplement would be okay, but often celiacs need prescription strength supplements of D, iron injections, at least a sublingual B12.... Do make sure she gets these tests. And if she is really low 'normal' she needs supplementation to bring her up to mid range because the low 'normal' is way too low.

[Skylark]

I completely agree with Shroomie. Her Dr. needs to test her, not ignore her for six months. Bare bones testing would be B12, and D, since the anemia test are done. If she's borderline low, I don't think they would give iron injections.

In particular, I would make sure she's getting plenty of calcium and D with the growth plate fractures. High calcium foods are really good for kids, because natural calcium is absorbed well. Dairy, leafy greens, salmon, broccoli, and tofu are good sources. Feed her some red meat for the iffy red cell count. Again, iron from food is absorbed best as her gut starts to heal. Sunlight for the D, 15-20 minutes outdoors a day as soon as it's warm enough for short sleeves.

There is never any harm in giving a good quality multivitamin and mineral that meets the US RDA for A, D, and E, and preferably exceeds it with B vitamins and C. You absorb B and C as needed and excrete the rest so they're hard to overdose and celiacs are usually starved for B vitamins. Vitamins with extra B and C are often labeled as "stress vitamins".

The RDA is sort of a "bare minimum" that's designed to be very safe for anyone to supplement. That plus what she gets in food will really help. (Note that many nutritionists think the RDA is too low and your Dr. may prescribe well over the RDA to make up for deficiencies.)