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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

    3. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

    4. - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

    5. - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

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

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748

    4Nic8ion
    Newest Member
    4Nic8ion
    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

    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.