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

New Here...waiting For Results And ?

Momof2cuties

Recommended Posts

Momof2cuties Apprentice
Momof2cuties
Posted

Hi all...I'm new here! My name is Stephanie and I have two little ones. My daughter, Ali, is 17 months and my son, John, is just 6 weeks.

The reason I'm here is my little girl...we're expecting blood test results back sometime this afternoon to see whether she has Celiac. My sister and niece were both diagnosed almost 10 years ago, so we won't be at all surprised if Ali tests positive.

Ali has had multiple loose stools everyday (8-10 a day) for about six months now. Since March she's had a rash on her face and diaper area that we were told was just a yeast infection, but we suspect it my actually be DH. She's seriously under weight (just 19 lbs) yet still has a very poochy tummy. We've been through a number of pediatricians at our local military hospital (my husband is active duty Air Force) and have been told many different things. It's beginning to get my really angry dealing with all of this! My poor baby has had so many different medications and none of them do anything. It makes me cry when we're walking to her room to change her diaper and she starts to cry because she's anticipating the pain. Does this sound like Celiac??

Our next step for Ali is to see a dermitoglist since we were given the referral. I'm not sure where that will take us, but at least it's a civilian doc and not from the base clinic.

My others questions: Should I be tested? I don't have symptoms really, but I'm assuming she got it from me. Also, at what age can my son be tested? He's exclusively breastfed and I hope to keep it that way for as long as possible. Should I go on gluten-free diet while I'm nursing? He doesn't seem to show any sensitivity at all, but I don't want to make him sick.

Thanks in advance for my listening to me ramble on and on in frustration!

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

Celiac.com Sponsor (A8-M):


gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Hi and welcome. Wow you have a lot going on.

1. do you want a diaper wipe recipe that will help your daughter? This recipe is great. Let me know if it doesn't make sense. Anothe rperk is it is cheaper than buying wipes!! Mix 2 cups water, 1 T baby soap (liquid), 2T baby oil. Cut a paper towel roll in half (so you have two short rolls.) I used to use a hack saw(clean new blade), kitchen scissors can be a real pain some times. Find a Tuperware type container that one of the paper towel rolls will fit in. Remove the cardboard center from the paper towel short roll. Put the paper towel short roll in the container so it stands on an end. Pour the mixure over the paper towels. Close the lid and let it soak. Now when you need a wipe, open the container and pull out from the center of the roll break off as needed. (The wipes should be aboutthe consistency of normal wipes, so adjust the water as needed.)

I found Bounty multi-sheets worked best. You need a heavier type of papertowel for these wipes.

Your daughter will not scream because there is no irritants in it.

My daughter had blistered diaper rash for close to a year and these wipes really helped. Just take a zip lock full when you leave the house for diaper changign on the go.

2. IMO I would not have you go gluten-free until you are done nursing, or until our son shows signs of a reaction or possible problem. When you go gluten-free and get glutened, your son will most likely have the same awful reaction that you are having. (Think you and baby both sick with awful flu like cold. Bad enough you, but then no patience for dealing with him miserable too..) As I said, just my opinion. Once he is eating cereal, you might see a change in him that would require you both to go get tested. Who knows.

3. By the way, thank you for your husbands service.

Daniebella Newbie
Daniebella
Posted

Hi, I'm about in the same spot - allergy test was neg for my 17 month old son, but waiting for blood tests. My naturopath said that you can stil lhave wheat and/or gluten intolerance that causes the symtpoms you are mentioning, even when blood tests ar enegative, the best way to know is to go lguten free and see if she gets better - we did and he is dramatically better, (and gets everythign back when we miss something). I am still nursing him, and have now gone off gluten as well as the Sam ND told me it can go through breast milk and I should try to avoid it .

hope that helps!

Daniela

Hi all...I'm new here! My name is Stephanie and I have two little ones. My daughter, Ali, is 17 months and my son, John, is just 6 weeks.

The reason I'm here is my little girl...we're expecting blood test results back sometime this afternoon to see whether she has Celiac. My sister and niece were both diagnosed almost 10 years ago, so we won't be at all surprised if Ali tests positive.

Ali has had multiple loose stools everyday (8-10 a day) for about six months now. Since March she's had a rash on her face and diaper area that we were told was just a yeast infection, but we suspect it my actually be DH. She's seriously under weight (just 19 lbs) yet still has a very poochy tummy. We've been through a number of pediatricians at our local military hospital (my husband is active duty Air Force) and have been told many different things. It's beginning to get my really angry dealing with all of this! My poor baby has had so many different medications and none of them do anything. It makes me cry when we're walking to her room to change her diaper and she starts to cry because she's anticipating the pain. Does this sound like Celiac??

Our next step for Ali is to see a dermitoglist since we were given the referral. I'm not sure where that will take us, but at least it's a civilian doc and not from the base clinic.

My others questions: Should I be tested? I don't have symptoms really, but I'm assuming she got it from me. Also, at what age can my son be tested? He's exclusively breastfed and I hope to keep it that way for as long as possible. Should I go on gluten-free diet while I'm nursing? He doesn't seem to show any sensitivity at all, but I don't want to make him sick.

Thanks in advance for my listening to me ramble on and on in frustration!

Daniebella Newbie
Daniebella
Posted

2. IMO I would not have you go gluten-free until you are done nursing, or until our son shows signs of a reaction or possible problem. When you go gluten-free and get glutened, your son will most likely have the same awful reaction that you are having. (Think you and baby both sick with awful flu like cold. Bad enough you, but then no patience for dealing with him miserable too..) As I said, just my opinion. Once he is eating cereal, you might see a change in him that would require you both to go get tested. Who knows.

I am responding to what you said above, as my doctor did advise me to go gluten free because I was nursing (But my baby WAS showing symptoms) - anyway, my question is, is there a danger in going free (besides giving up yummy food?) Do you get more sick if you have gluten after not having had it for a while??

sillyactsue Explorer
sillyactsue
Posted

My little one also gets a rash when glutened (or diaryed). We use Aquaphor on it. You can get it at Wal-mart. It is gluten free and works wonders. She will be three in August. Ever since she could talk if she feels the beginning of a rash she asks for it by name so you know it must be good. Good luck,

Gloria

taweavmo3 Enthusiast
taweavmo3
Posted

Daniebella..there is no danger in going gluten free while breastfeeding. I have four kids who are gluten/casein free (and two who are soy free as well), and my youngest has been on the diet since birth! I won't give her gluten or dairy until at least her first birthday, after her immune system is developed, but I'll probably wait much longer than that. I think it can be a much healthier way of eating, honestly. It's a very personal decision, but that is my 2 cents! Your Naturopath sounds very informed and on the ball regarding Celiac, I would hang on to that one!!!!

Stephanie, I really feel for ya! I've been there, but it's been a few years now. I still remember how bad those diaper changed could be. We use Butt paste, but I know a few others on here will have some more ideas for those blistering rashes. I hope you get some answers soon, it definately sounds like your daughter could have Celiac, especially with the family history. It's sad, but most of us have been in your shoes and it can be very frustrating gettting a diagnosis. If all else fails, you could give the diet a go and see if she gets better. After my dd's diagnosis, we all went gluten free. It made life easier for me.....but it's not right for everyone. Good luck to you!

Joannem Newbie
Joannem
Posted

I use sweet almond oil on my lo after bath and before bed. Now I am new to this so I am not 100% certain it is gluten free, but very sure. The almond oild doesn

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

Celiac.com Sponsor (A8-M):


Momof2cuties Apprentice
Momof2cuties
Posted
  • Author

Thanks for all of the support and great suggestions! We saw the dermitologist today and she was fabulous!! Her daughter doesn't have Celiac, but has several food intollerances and was very helpful. She also said that she has some friends (a whole family) that all have Celiac. She said she would personally contact our pediatrician on the base to have a referral made to the local pedi GI at University of Nebraska Med Center. He's supposed to be one of the best in the country. Hopefully we're on the right track!

Ali's rash and poos were just about normal and then today were REALLY bad again!! I took her out for lunch after her appt and thought I was being so careful! She must have gotten glutened from something!! Grrr...

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748
    bailey1023
    Newest Member
    bailey1023
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.