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

Celiac Vs Gluten Intolerance


rachelh4207

Recommended Posts

rachelh4207 Apprentice

Hi! I know this question may seem dumb but I just want to make sure that I understand right. I have been reading every gluten/celiac book I can get my hands on and searching the internet and still am not *sure*.

DD (2.5) has gluten tolerance I am fairly certain, however, her panel and biopsy were negative for celiac. (she had been off gluten for a week with one and two weeks with one, I know, results aren't for sure accurate because of this)

So my question is, Can she have bone loss, malnutrition, "failure to thrive", huge belly, teeth problems, etc---and it "just" be gluten tolerance?

Just want to make sure that gluten tolerance can cause these major side effects as well.

She has other problems as well like:

-chronic yeast infections

-irritability

-weak

-developmental delays

-horrible night/nap sweats

-bathroom "issues"

-allergy eyes- poor color

-Overall just doesn't feel "good"

and a few others that I am sure I am forgetting.

She goes to the Pediatric orthopedic Friday since her leg has taken so long to heal, is crocked, and still hurts her so much. Keep her in your prayers please and thanks again for all the help. I am very grateful to have access to this form.


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



Celiac.com Sponsor (A8-M):



alex11602 Collaborator

Poor girl. I'm not sure of all the ins and outs, but I do know that some considere gluten intolerance to be a spectrum disorder and also that she could still be Celiac with negative tests especially considering her age.

mamaupupup Contributor

Hi Rachel,

I'll dig up an article and get back to you on this. In the meantime, I'm thinking of you and sending prayers your way!

rachelh4207 Apprentice

thanks for the reply:) I really REALLY believe her hair has grown SO SO SO much in the past month (gluten free) And her stomach is so much smaller. On another note, she is constipated today!? what in the world? she use to be the opposite?!!?

mamaupupup Contributor

Hi Rachel,

You are such a great mom--you are doing so much research!

Here is an article from the Wall Street Journal which helped me understand...although I've learned a lot since then!:

Open Original Shared Link

mamaupupup Contributor

This is written by our pediatric GI. Open Original Shared Link

Not sure how to get access...

xjrosie Apprentice

thanks for the reply:) I really REALLY believe her hair has grown SO SO SO much in the past month (gluten free) And her stomach is so much smaller. On another note, she is constipated today!? what in the world? she use to be the opposite?!!?

Keep in mind that kids are kids and things happen that won't always be related to gluten. Constipation happens a lot when you're dehydrated or even low on fluid in your body. It could be something she ate (too much cheese or something). Up her water intake a few ounces a day and see what it does.

Honestly, I think that if the constipation were a result of being glutened, you would have other symptoms. If she's making progress and this popped up out of nowhere, it's probably something minor.


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



Celiac.com Sponsor (A8-M):



momtok&m Explorer

My 3yo is Gluten Intolerant. She was diagnosed based on symptoms-anemia, malnutrition, vomiting, irritability, slow growth, etc. This was before 12 months and her main source of nutrition was breastmilk! All of these symptoms slowly went away once she was gluten-free. Anyway, I spoke with someone at the lab that does all of the genetic testing and she told me (2 yrs ago) that the test just aren't good enough yet to rely on the results in little ones. So, we don't know if she has an allergy, intolerance or Celiac. It doesn't matter to me since I know she's healthy without gluten and sick as a dog with gluten in her diet! Our ped. agrees and won't even allow us to gluten her up for a biopsy! So, until SHE wants to know what it really is....we're happy with her current dx! Good luck mama! It's tough in the beginning but it does get easier :

Oh, your question.......after a discussion with our ped., yes, it can be "just" GI.

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. - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    2. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

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

      Positive biopsy

    4. - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

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

    • Total Members
      132,993
    • Most Online (within 30 mins)
      7,748

    Tchudi
    Newest Member
    Tchudi
    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
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      This is great thank you very much @Scott Adams
×
×
  • 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.