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Could This Be Symptoms?

Guest mmc

By Guest mmc
in Parents, Friends and Loved Ones of Celiacs

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Guest mmc
Guest mmc
Posted

I am newly dx'd and have been worrying about my kids. Just was wondering if the dr's were wrong

When my oldest daughter (now 5 years old) was born, I was extremely malnutritioned and was advised not to breast feed for the health of me and my daughter. They began her on the normal formula (Isomil, maybe) but she would projectile vomit everytime she ingested it.

She ended up on an IV and finally ended up being able to tolerate a special formula made from rice. The dr's said that she had "acid reflux". She also had a horrible rash which was dx'd as ezcema.

Could that have been celiac presenting itself or am I just freaking out for nothing?

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mouse Enthusiast
mouse
Posted

No, I don't think you are freaking out for nothing. My daughter had projectile vomiting after only drinking 2oz of Molsoy (she was allergic to milk). She was hospitilized 3 times with IV's. They kept telling me she had a virus. She is of short stature and we are tall. She shows all signs of having Celiac, but will not be tested.

Ursa Major Collaborator
Ursa Major
Posted

I agree with Armetta, it sounds a lot like your daughter may have celiac disease as well. It might be a good idea to have her tested, and to put her on the gluten-free diet as well, even if she tests negative.

Guest mmc
Guest mmc
Posted

I have yet to move my daughters to a gluten-free diet, because we are moving cross country at the end of the week and it is a very stressful time. Once we get moved into our new home, our whole family will go gluten-free. So I believe it's best that I get both of them tested before that we go gluten-free.

If we're going to have them go gluten-free anyways, is it necessary that we get them tested? They don't do very well with needles, my youngest is better with them, but my oldest goes into tantrums when the nurse comes in the room.

TCA Contributor
TCA
Posted

I hope you're not freaking out, as you stated earlier, because it sounds like you have enough on your plate. Your daughter's symptom's do sound identical to my daughter's, though. She can't tolerate any formulas, so I am on a gluten-free diet and pumping for her. We just found out about an additional milk and egg allergy, which I'm also avoiding. I hope this will help her eczema. another symptom my daughter has with gluten is complete lethargy. She just feels terrible. She's just 13 mos and had a lot of health issues.

I personally don't think the testing is a big deal, then again my daughter has had open heart surgery, so I'm used to medical stuff. Just remember that the tests can be unreliable in kids under 5. My son was tested and my daughter wasn't. His tests were inconclusive at 3 years old. His response to the diet has been awesome, though, so we have our answer in that. If you do the tests, be sure to do them before going gluten-free.

good luck with your move.

Guest mmc
Guest mmc
Posted

My oldest also suffers from horrible migraine headaches, as do I. They last for days on end and there is nothing that we can do for them. We've tried everything and have ended up in the e.r. and they just give her some narcotic pain meds and send us home. The meds put her to sleep, but do not help the headaches. She'll still have the headache when she wakes up.

Given, her headaches happen much less than mine, but it is still very painful for her and it kills me not to be able to help her. And God help my husband when her and I both have a migraine. He does his best to take care of us, and a great job at that, but it is extremely stressful for him.

Has/Does anyone's kids get migraines at this young of an age (age 5)?

tarnalberry Community Regular
tarnalberry
Posted
My oldest also suffers from horrible migraine headaches, as do I. They last for days on end and there is nothing that we can do for them. We've tried everything and have ended up in the e.r. and they just give her some narcotic pain meds and send us home. The meds put her to sleep, but do not help the headaches. She'll still have the headache when she wakes up.

Given, her headaches happen much less than mine, but it is still very painful for her and it kills me not to be able to help her. And God help my husband when her and I both have a migraine. He does his best to take care of us, and a great job at that, but it is extremely stressful for him.

Has/Does anyone's kids get migraines at this young of an age (age 5)?

I don't have kids, but do have migraines. They got regular when I moved to Seattle. My docs put me on Topamax (an anti-epileptic that has uses against chronic migraines). It's working quite well... I've had three in the past eight weeks, which is great for me!

Do get her tested, but I would encourage you to try her on the diet, regardless of the test results.

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Smunkeemom Enthusiast
Smunkeemom
Posted

Both of my girls had the projectile vomiting and rashes, and failure to thrive, they were both diagnosed at first with acid reflux, and ezcema (which I went with since I had been diagnosed with those as well)

We found out later (after my youngest getting so sick she needed to be tube fed TPN) that we all have celiac disease.

I have often wondered if they were throwing up the formula because of celiac. I guess so, after hearing all the other feedback.

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      I don't react the same way to all of them but do react badly to many of them where others may not. I also have a touch of hypochondria so when the labs come back too high or makes me anxious. I am dismayed but not really surprised that I may be in the small group of people to suffer a particular side effect. I was originally on warfirin. I think that was the one where I had trouble with vitamin k numbers and or was anemic with low hemoglobin, red blood cells etc.  My blood pressure drops to very low numbers after taking something as simple as turmeric for a few weeks. My diastolic had touched 50 one day before I finally figured out that the herb was the problem. No intention to go for 40 so never looked back. I wanted to try benfothiamine but one of the listed side effects is bradycardia and other stuff that I am not going to challenge esp since I have had and still have to a lesser degree heart rhythm problems. 
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      What do you mean when you say, "blood thinners are all the same to me"? Do you mean you react negatively in the same way to all of them? Otherwise, they are not all the same. They work in different ways. Aspirin causes the platelets to be less sticky. Warfarin and related meds work by reducing the production of platelets. You might talk to your doctor about alternatives to aspirin. 
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