Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Gluten Allergy?


Bridy

Recommended Posts

Bridy Apprentice

I have a question about my daughter. I have posted here a few times before but this is a little history.

She is 2.5 years old and has always had constipation/bowel issues from birth, things got worse with food introduction.

We have had her tested for Hirschsprung's Disease/negative.

She had a blood test for Celiacs/negative

But she had a blood test for allergies and it came back that she was allergic to gluten. Wheat was high but it was still negative, barley was negative, buckwheat negative.

How is this possible?

I don't see how she could be allergic to gluten and not wheat. Can anyone make sense of this?

We are seeing a different specialist in March for a second opinion on the allergy tests.

But I do have concerns about her. We were told she was allergic to dairy, so we took her off dairy. Saw some changes in her BM's for a few months but now she is back to having issues again.

Her ribs stick out, she does have a extended tummy and she is small for her age, 23lbs

I am just very concerned about her. She is extremly moody as well. Its not funny, but we joke around that she is Bipolar because she can be one way one minute and telling us "I happy now", I happy now" and then start crying a moment later. She is okay when we are out and she is busy, but she does have temper tantrums so easy. Her moods are very hard to manage.

Any thoughts?


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Poor baby!

I don't see how she could be allergic to gluten and not wheat. Can anyone make sense of this?

An allergy is an antibody response (IgE). Your body makes antibodies to pieces of proteins. If your daughter has antibodies that recognize a piece of wheat that has a different shape when it's cooked, a test that uses raw protein will register as negative. The gluten peptide may 1) not have a different shape when cooked, or 2) be recognized by an antibody that is sequence specific, not shape specific.

Bridy Apprentice
Poor baby!

An allergy is an antibody response (IgE). Your body makes antibodies to pieces of proteins. If your daughter has antibodies that recognize a piece of wheat that has a different shape when it's cooked, a test that uses raw protein will register as negative. The gluten peptide may 1) not have a different shape when cooked, or 2) be recognized by an antibody that is sequence specific, not shape specific.

So do you think that she is allergive to wheat as well but the test just couldn't detect it?

We have to wait till march to see the other specialist, it will be a long few months.

Jestgar Rising Star

Well, if she's allergic to gluten she's allergic to at least one part of wheat.

The tests are not very good. The best way to test her is to take her off wheat and gluten (wheat and also barley and rye) and see if she feels better. Most people stop eating oats as well, at least initially.

Bridy Apprentice

Thank you for being online!

She LOVES oatmeal, its her favorite food.

So should I just take out wheat, barley, and rye and see how she does. if she isn't okay in a few months then take out oats too?

Jestgar Rising Star

At least find gluten free oatmeal. I can't offer any suggestions, because I've never been an oatmeal fan, but maybe someone else will chime in.

You could also try quinoa as a breakfast food, or cream of rice.

I went my entire life not realizing that your tummy wasn't supposed to hurt after eating. I only discovered it when I stopped eating gluten. Maybe your baby loves oatmeal because it's the only food that doesn't make her uncomfortable. ( I say this to suggest that she might be open to new foods, if they don't make her tummy hurt.)

Bridy Apprentice

thank you.

I make Quinoa but she wont touch it. I am going to try and make it with other flavours and maybe mix it into things.

But I will buy cream of rice as well and see how she likes it.

is gluten free oatmal labeld that way?

There is a gluten free store in my City, I should probably call them to see what they have for oatmeal.

Thank you for all the suggestions, I really appreciate it.


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Gluten free oatmeal should be labeled as such.

I hope you find what's making things so difficult for her. Feel free to ask questions here. There are a lot of people with multiple food intolerances, and chances are you'll find someone that can help you.

I'm kinda hoping that taking away gluten will make everything better for her :)

Jess

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,620
    • Most Online (within 30 mins)
      7,748

    Su p
    Newest Member
    Su p
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      Thanks @cristiana I really appreciate hearing all of this... I definitely need to look out better for the shared dishes/pans/ovens thing.  I'm currently not doing a good job of that at all.  But I think I need to make the airfryer a gluten-free only airfryer.  I've been keeping a food diary for these past few days and so far its been interesting.  I think I have 2 issues going on: I get a head/neck/shoulder/jaw ache when I get glutened (as well as feeling fatigued and brain fog).  At least this is what I think are my symptoms from consuming gluten.  I think that the only things I consumed were marked gluten-free, but they were a combination of "certified gluten-free" and "gluten-free", so I think I am definitely worried thinking that the "gluten-free" non-certifieds are not good enough for me.  Also, I feel like the issue of cross-contamination of dishes could be an issue for me too.  But there's also a second issue I'm trying to figure out.  I ate 2 dishes containing chicken this week from gluten-free companies (frozen dish, fully contained and sealed) - one of which had the "certified gluten free" logo on it.  And right after eating, I had bowel movements that I think would be classified as steatorrhea.  I have this type of bowel movement multiple times a week lately, which has become quite miserable. But from my food diary, I can tell that when I don't eat meat or eat fish, I am not experiencing this issue. From my reading, I can see that steatorrhea can result from malabsorption in the gut due to celiac, and I know that I do have issues with malabsorption because I have iron-deficiency anemia (my ferritin was 10 when last tested). I also had low potassium and low Vitamin D when first diagnosed with celiac, but both have come back into the normal range since I started going gluten-free and taking supplements.   Based on what you all are saying, I am now thinking that my iron-deficiency anemia, my steatorrhea, and my head/neck aches may all still be persisting because I'm still consuming this lingering amount of gluten regularly.  I've really got to do a lot to switch over to ONLY eating certified gluten-free products and also creating a clean space within my kitchen that is just for me to use, and probably just skip restaurants completely for a while... Also maybe in the mean time, I might just keep my foods simple.. no dairy or meats (just fish) which my stomach seems happier with. Do you all think this is something I should go into my GI doctor about?  Because when I saw her last, I wasn't having steatorrhea.  My GI symptoms were actually kind of mild, which I thought was sort of strange since I had just got diagnosed with celiac disease.  I was dealing with mostly headaches, etc and so I've been mostly working with a neurologist and physical therapist on these symptoms.. but there's only so much they can do when I trigger a brand new headache/stiff neck every week and I'm starting to think that celiac is at the root of all of this...  Thanks for all your support and insights
    • trents
      Welcome to the forum, @AnneBSunflower! Can you be more specific about the gluten antibodies? Which ones were found? Do you have access to the report and can you post the results? What is a "GI map"? How was this done? Is this a fecal matter test? Are you still consuming oats? Even "Gluten-free" oats? Have you checked all meds and supplements for possible gluten fillers or casings? Oral hygiene products? Are you sharing cooking facilities with wheat eaters?
    • AnneBSunflower
      Hi. I am looking for mystery gluten in my diet due to having a GI map done recently and the results found gluten antibodies. However, let me provide a bit of background. I was diagnosed with Hashimoto's 15 years ago. Ten years ago I consulted with a functional medicine doctor who put me on the AIP diet due to gastrointestinal distress. She did not diagnose me with celiac disease, but my thyroid antibodies skyrocketed when we reintroduced gluten after 6 months on the AIP diet. I have been maintaining a gluten free diet for 10 years. I have on again, off again gut issues, cannot lose weight, chronic vitamin deficiencies despite a diet focused on whole foods, and my thyroid numbers are whacky even with medication (my T3 is good, T4 chronically low, TSH low). My doctor diagnosed me this week as having celiac in addition to the Hashimoto's. Again, I have been eating gluten free for 10 years. My doctor says there is something I am eating that my body is reacting to that has gluten and I have inflammation in my gut. I don't buy anything that is processed without reading the label and it stating it is gluten free. I know things like soy sauce, salad dressing, potato chips (I haven't eaten a potato chip in probably 30 years), roasted nuts, lunch meat, etc. can have gluten. What else? Does Armour Thyroid have gluten? Kirkland Almond non-dairy beverage (doesn't say gluten free, but there are no ingredients that would indicate gluten)? Philadelphia Cream cheese plant-based cream cheese says it is gluten free but it contains maltodextrin, could this still be a source of gluten? If the plant-based cream cheese with maltodextrin could be a source of gluten, could anything labeled gluten free but containing maltodextrin still be a source of gluten?
    • cristiana
      I struggled for a long time.   My TTG levels took an age to come down.  I even gave pure gluten free oats a miss, it took 8 years before I could tolerate them.  Removing dairy temporarily from my diet was hugely helpful.  Check your utensils and the oven you use are scrupulously clean, and don't open roast or bake food uncovered in an oven shared with gluten eaters.  Shared grills must be thoroughly cleaned down, too. Our oven packed up a couple of years after I was diagnosed and after that time the top oven became my family's oven, I use the lower oven.  Also our dishwasher - the old one left a residue, and sharing with gluten eaters I think this was an important factor in my slow recovery.  When the dishwasher packed up I started hand washing the plates and making sure they were really rinsed well.  When we got a new one we bought a Miele does the initial rinse with clean water, not yesterday's old water.   I stopped eating out for a while - that's a biggie.  In recent years, in the UK, thanks to Zoe's Law, caterers are having to really tighten up on catering for people with coeliac disease and allergies so I am now finding eating out much less risky.  But I'd advise being very careful with restaurants where flour is thrown about and is airborne (such as pizzerias) or where harried chefs might cook pasta in glutenous water by mistake, as those are the places I've been glutened in the most.
    • kopiq
      also my hands are always cold, freezing cold in the winter and even cold during hot summer days. its like i have a shield. i feel warm but its not penetrating inside, my teeth chatter as well and my left index finger goes dead white when im super hungry. all dr tests come back fine. im so hopeless.
×
×
  • Create New...