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 Looking For Help


Caseysmommy

Recommended Posts

Caseysmommy Apprentice

Hi, My name is Angie and I have a 16 month old daughter. Since she has been born we have had problems with what we thought was milk. I tried breastfeeding her and for 3 weeks she screamed and the doctor finally said she was allergic to my breast milk and needed to be on formula, After trying formula for a week it continuted and she had blood in her stool. They put her on Netragnum formula. She was fine with that until we started solid food and she seemed unhappy again.

Now she is 16 months and I have made her dairy free but she still gets diarahia a few times a day and she gets a red bloucy rash on her chin after eating. In the past few weeks I have noticed it on her cheeks and back and stomach too. Its worst on her chin. After my sisternlaw mention glueton I started looking into it and think that may have been her main problem from the beginning. I guess my question is how long does it take to get tested. I have a appointment at a new peditrian on the 18th but not to be tested. Also does anyone else get the rash on the chin. I have started making her gluten-free and it has seemed to help. There is alot of things to learn.

Thanks for your help.

Angie


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



Celiac.com Sponsor (A8-M):



dandelionmom Enthusiast

Hi Angie! I hope you find answers soon. I'm not a medical professional at all but it does sound like she's suffering from some sort of food allergy or intolerance. Somethings you can try: a food journal (write down what she eats and when she has reactions), an elimination diet (google this or ask your pediatrician for advice), RAST testing (a blood test for allergies), allergy scratch testing, and the celiac panel (but keep in mind there is a high rate of false negatives for kids under 6).

Great good luck to you! I know how hard it is to wait for answers!

And a beside-the-point rant: where do doctors get off saying that a baby is allergic to breastmilk. It is documented in several places that while babies can have allergies to things in the milk (via the mother's diet) they can't be allergic to breastmilk. Ugh.

home-based-mom Contributor
I have started making her gluten-free and it has seemed to help. There is alot of things to learn.

Thanks for your help.

Angie

Hi, Angie and welcome to the forum. This is a great place to learn. For what it's worth, taking your daughter off of gluten before all the tests have been done will virtually guarantee a negative result as the blood tests look for antibodies that you daughter's body will no longer be producing. The biopsy (a hit and miss procedure at best) looks for intestinal damage that may very well have healed up by test time as young children heal so quickly.

As the 18th isn't that far away, you could resume gluten in her diet and insist on the full celiac panel of tests at the appointment. You want to ask for the Full Celiac Panel

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Unfortunately many doctors are clueless about celiac and gluten intolerance. Hopefully your new one will "get it" but if this new one doesn't seem to understand your concerns or what you are talking about, you should find another doctor and not waste your time trying to educate this one.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,078
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.