Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Could This Be Symptoms?


Guest mmc

Recommended Posts

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lovinlifeafter60
    Newest Member
    lovinlifeafter60
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.