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

Intolerent To Gluten


rvp

Recommended Posts

rvp Newbie

I was told the other day (when I was with a medical person and we were discussing Celiac and DH)

an individual can be gluten intolerant to gluten and not have celiac or DH. Any thoughts on this?


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



Celiac.com Sponsor (A8-M):



MaryJones2 Enthusiast

It is quite possible. Many members on this board do not have celiac yet react much the same way that our celiac members do. There is a lot that isn't known about gluten intolerance. Personally, I know more gluten intolerant people than diagnosed celiacs.

sbj Rookie
I was told the other day (when I was with a medical person and we were discussing Celiac and DH) an individual can be gluten intolerant to gluten and not have celiac or DH. Any thoughts on this?

I agree with the medical person! There are many medical professionals and celiac 'experts' who feel that there are three separate conditions: celiac disease, gluten intolerance, and wheat allergy. Both celiac disease and wheat allergy can be diagnosed but there is no universally accepted way to diagnose gluten intolerance. The impact on the body for each of the three conditions is different. (In a similar fashion there are those who are lactose intolerant and those who have an allergy to milk.) You might find more information by doing a Google search for celiac disease versus gluten intolerance. There are a lot of opinions on the subject!

purple Community Regular

For my kids, ages 20/17, they are not Celiac but not tested either. One gets bloated on occasion whether she eats wheat or not. She had really bad pms last year, has occasional allergies- seasonal, pets, dust.

The other ones head itches on occasion and sometimes gets C but she is vegan too, strange. She has keratosis polaris. Neither one have D or tummy pain, maybe a tummy ache a couple of times a year. Going gluten-free has made a difference. Both are 5'3" and one is overweight, neither have ever been skinny. Celiac does not run in our family on either side. Both have always been healthy.

The doc examined the oldest and said no gluten, went gluten-free, took vit B/magnesium and her pms became normal.

So...what are they?

Need to be gluten-free. I treat them as if they are gluten intolerant that way they will take it all more seriously.

We may learn more in the future, its only been about a year.

I read gluten intolerant's symptoms can be just like celiacs.

rvp Newbie
I agree with the medical person! There are many medical professionals and celiac 'experts' who feel that there are three separate conditions: celiac disease, gluten intolerance, and wheat allergy. Both celiac disease and wheat allergy can be diagnosed but there is no universally accepted way to diagnose gluten intolerance. The impact on the body for each of the three conditions is different. (In a similar fashion there are those who are lactose intolerant and those who have an allergy to milk.) You might find more information by doing a Google search for celiac disease versus gluten intolerance. There are a lot of opinions on the subject!

Thank you- with this info I feel a bit more "normal" with my situation. I believe Dr.'s do not give this whole area(glute intolerance-celiac-DH). They feel it isn't as important as so many other ailments, possibly because they really don't know the answer as to treating it. But I think if they had to suffer with these ailments, they sure would change their minds. Again thank you!

rvp Newbie
For my kids, ages 20/17, they are not Celiac but not tested either. One gets bloated on occasion whether she eats wheat or not. She had really bad pms last year, has occasional allergies- seasonal, pets, dust.

The other ones head itches on occasion and sometimes gets C but she is vegan too, strange. She has keratosis polaris. Neither one have D or tummy pain, maybe a tummy ache a couple of times a year. Going gluten-free has made a difference. Both are 5'3" and one is overweight, neither have ever been skinny. Celiac does not run in our family on either side. Both have always been healthy.

The doc examined the oldest and said no gluten, went gluten-free, took vit B/magnesium and her pms became normal.

So...what are they?

Need to be gluten-free. I treat them as if they are gluten intolerant that way they will take it all more seriously.

We may learn more in the future, its only been about a year.

I read gluten intolerant's symptoms can be just like celiacs.

Thank you for your response. I too have definite reactions to gluten, yet when they did the biopsy and said I did'nt have DH-explain then every time I have gluten on my system I break out with the rash. I agree they have not done enough reseach on this subject. I suppose our only option is to stay gluten free and make our lives more bearable.

caek-is-a-lie Explorer

Yup. I agree.

Tests are fallible and if the diet works, do it! :D


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



Celiac.com Sponsor (A8-M):



purple Community Regular
Thank you for your response. I too have definite reactions to gluten, yet when they did the biopsy and said I did'nt have DH-explain then every time I have gluten on my system I break out with the rash. I agree they have not done enough reseach on this subject. I suppose our only option is to stay gluten free and make our lives more bearable.

I believe that if gluten is still consumed, you will only get worse, so gluten-free is the answer. One dd had a gluten burrito and had tummy pain last week. Since then she had a burrito again and nothing. Could be something else is bothering her or maybe she had more gluten in her at the time. :blink: IDK

sugarsue Enthusiast

This is my 7 yr old daughter exactly. She tests negative to Celiac in her blood test so we did not do a biopsy. Her Dermatologist said her skin issues were not DH (although again she had no biopsy). But, everything clears up when she does not eat gluten and she feels sooooo much better. Can you imagine a 7 yr old voluntarily giving up gluten? Even she can tell it's the answer for her!

Glad you are feeling good about your decision to go gluten-free!

purple Community Regular
This is my 7 yr old daughter exactly. She tests negative to Celiac in her blood test so we did not do a biopsy. Her Dermatologist said her skin issues were not DH (although again she had no biopsy). But, everything clears up when she does not eat gluten and she feels sooooo much better. Can you imagine a 7 yr old voluntarily giving up gluten? Even she can tell it's the answer for her!

Glad you are feeling good about your decision to go gluten-free!

I am so thankful my kids didn't have to be gluten-free during the school years, just 1 dd did but as a senior only. We also live in such a small town that we don't have any fast food except what our Chevron offers, so that has been a plus this past year.

What a hard time for you and others, I feel for all you parents and your kids! My other dd had to go gluten-free during the second semester of her first year of college, that was hard enough!!

krystal Rookie

My understanding is this: (coming from a functional medicine physician that is ALSO a medical doctor)

Gluten Sensitivity: gluten makes you sick but you don't produce the IgA antibodies to it. Instead, I think it's IgE or IgG (please don't quote me on this, I get them confused)

Gluten Intolerance: You produce the IgA antibodies, and this is the reaction that flattens the villi, etc. However, some have not sustained enough damage to pass the "gold standard" test of the medical establishment. If you continue to eat gluten and have Gluten Intolerance, you will absolutely at some point pass the test. Celiac Disease IS Intolerance, but not all with Intolerance will "pass" the medical test. They aren't two different things, it's just that the tests aren't good enough to recognize all intolerance and the doctors won't classify you as such.

Gluten Allergy (Wheat Allergy): Life threatening, can have anaphylaxis as a result. You produce histamines when ingesting or contacting wheat. (Not IgA or IgG or IgE)

happygirl Collaborator
Open Original Shared Link

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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.