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

Non-celiac Wheat Allergies?

FeedIndy

Recommended Posts

FeedIndy Contributor
FeedIndy
Posted

My daughter is 10 months old and has weight issues for 6 months (about since starting cereal). She has tons of other celiac symptoms and it was the first test her ped ran after a CBC and MP. The results came back negative for celiac, but while we waited for the call we put her on gluten free anyway. She immediately started getting better. By day 2 she had more energy, better diapers, and just in general seemed happier, though she's always been a happy baby.

When the doc called with the negative test results I was actually stunned because of the results we were seeing. He encouraged us to stay gluten free for 2 months and plans to refer her to an allergist at her 1-year checkup. Then a week later we took her in for her lingering cold because we were leaving town and I didn't want to find out there that it was becoming an ear infection. She had gained 4 ounces in just a week on gluten free!

I was just wondering what other types of things anyone might have experience with that would react the same as celiac.

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

A wheat or gluten allergy is different from a gluten senisivity/intolerance.

If you want something in writing, contact enterolab and see what the youngest age they can test is. They say you can be gluten free for a certain length of time but I'm not sure that length of time would be the same with little ones. If you want to check it out Open Original Shared Link

A positive dietary response is all you need if you are satisfied with that. Did you have gene testing done?

RiceGuy Collaborator
RiceGuy
Posted

As I'm sure others will point out, it is quite common for young children to get a false-negative from tests. I don't know which "official" tests are the most reliable, but you've already gotten an answer from the best test known - the gluten-free diet. I don't suppose you'd be too quick to put your child back on gluten no matter what test results you get.

For other allergies and such, I suppose dairy/lactose/casein would be among the top ones I'd be cautious about. Then there's soy, tree nuts, peanuts, corn, eggs, nightshades, etc.

I hope you get all the answers you need, and it seems like you've already made great progress.

jayhawkmom Enthusiast
jayhawkmom
Posted

My daughter is allergic to wheat. She also has Celiac, but she IS allergic to wheat as well as intolerant to it. Gluten intolerance is something that most doctors don't seem to "get" yet. She can be intolerant without having Celiac. I agree, if a gluten-free diet works... who cares what the tests say! =)

dawnd Newbie
dawnd
Posted

Enterolab told me it takes 2-3 years for the antibodies from the gluten to clear away. My son has been gluten free for 1 year and they said he does not have to return it to his diet to be tested. DAwn

mrsnj91 Explorer
mrsnj91
Posted

We had a similar story just without the celiac testing. My Dd was 8-9 months old when I noticed something wasn't right. I knew it was related to items with wheat in it but wasnt' sure if it was wheat or something else. I would give her crackers, get a reaction, take her off and clear up. I did this cycle for 4 months with dr. visits inbetween. My final frustration was right after Christmas when my DD started with hives. I KNEW it was not in my mind or something to write off and so I called the dr and demanded a referral. This took us to an allergist. We 1st did a RAST test and got neg. all the way. Then we did a SPT and got neg. It was two days later that I noticed a welt in the area where #7 was tested for the SPT....wheat. She did not have immediate reactions but rather delayed. However in my testing and research I found many similar symptoms in my two other children. They too had problems over the years but were never clearly diagnosed as my youngest was as her symptoms were just so clear something was wrong and to what. Starting to piece together symptoms, diagnoses and family history I do not believe we are Celiac free. Something isn't right and I know it. Thing is my youngest DD is now gluten free and cannot be tested. But we are getting ready to test my middle DD now. #1 I think you have to follow your gut. Mothers know. #2 As some have mentioned you child has probably not been on enough wheat to cause any major damage. I know from our on again and off again cycle and my DD being so young that a biop. would show really nothing. Point is she could just be allergic which is what you wanted to know. Or it could be more. Yes her symptoms are very similar to Celiac.

Why not have you and DH tested too since your child is gluten-free?

Archived

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

Go to topic listing

  • 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. cristiana
      - cristiana replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      2

      Celiac support is hard to find

      Hi @tiffanygosci Well done for reaching out, fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier. I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be,...
    2. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Newly diagnosed mam to coeliac 11 year old

      You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy. Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter...
    3. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      2

      Celiac support is hard to find

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    4. trents
      - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered...
    5. mamaof7
      - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,958
    • Most Online (within 30 mins)
      7,748
    DLA
    Newest Member
    DLA
    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

    • cristiana
      Celiac support is hard to find

      By cristiana · Posted

      Hi @tiffanygosci Well done for reaching out,  fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier.     I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be, particularly at first, when you don't know anyone with celiac disease.  *see link for film below. I realise now how blessed I was that when I was diagnosed two friends were also diagnosed around the same time, as we shared a lot of tips and recipes at the start.   Since then the number of people I know diagnosed with coeliac disease has grown and grown, there seems to be a much greater awareness of it among healthcare professionals and the public, at least this side of the Atlantic (I'm British).  I think in time you may find this, too. That said, those two coeliac buddies were 'straightforward' cases who seemed to recover very quickly when on a gluten-free diet - I struggled for some time.  So I found that I spent much more time discussing things with this online coeliac family. If you have any more questions, we're here for you.  I hope your event on 15th goes well.  Sounds like a good start!  I like you am not keen on Facebook, but perhaps setting up an account short-term might help? * https://vimeo.com/486284734 Cristiana     
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy.   Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter has vitamin and mineral deficiencies, which is highly likely,    In the UK tests are generally offered on the NHS for B12 and ferritin, and sometimes vitamin D.  Shortages in these can really cause any anxiety or depression or ramp it up. If you do end up supplementing, make sure your GP is aware as levels do need to be monitored, for example,  too much ferritin can cause huge health issues. Re: anxiety, definitely speak to a GP or another health care professional about this if it is an issue. Hopefully the Coeliac Society of Ireland will also be able to help. Cristiana  
    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Help understand results

      By trents · Posted

      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      Help understand results

      By mamaof7 · Posted

      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
×
×
  • 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.