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Could This Be Symptoms?


Guest mmc

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Guest mmc

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

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

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

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

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

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
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

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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      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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