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

Is Anybody Gluten Intolerant With Celiac Disease?


Trickytree

Recommended Posts

Trickytree Newbie

I've just taken a York Labs blood test and it came back with a hideous list of intolerances - the worst being gluten (gliadin), wheat, eggs, milk & yeast. I'm waiting for an appointment for a celiac test but wondered if it's possible to be gluten intolerant without having celiac disease?

I've been advised that there is probably an underlying problem which has given rise to all of these positive results, and that it is either likely to be celiac or candida, but I've struggled to find anything on the net where gluten intolerance isn't referred to in the same breath as celiac. My symptoms are not extreme but could be equally attributed to either.

Any thoughts that would help me get my head straight with all this whilst I'm stuck in limbo would be appreciated!


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



Celiac.com Sponsor (A8-M):



jayhawkmom Enthusiast

Yes, one can be gluten intolerant without having Celiac Disease. However, the dietary requirements are exactly the same.... no wheat, no rye, no barley, EVER.

Many believe that gluten intolerance is just a stepping stone to Celiac. I don't know either way. But, I do have a diagnosis of gluten intolerance. I do not have a diagnosis of Celiac Disease. It doesn't matter, as I have to maintain a gluten free diet, otherwise I become violently ill. I recently learned that I carry the Celiac genes as well..... so, I can see how others would consider the intolerance as the first step toward the full blown disease. I'm hoping to AVOID that... by following a gluten-free diet.

I'm sorry, I'm rambling... I'm tired, :huh:

Tim-n-VA Contributor

You are correct that many places use gluten intolerant interchangeably with celiac including many posts on this site.

The places where I've seen it specifically different make the distinction of an intolerance being a GI system issue (not being able to digest properly) versus an immune system response.

I've only skimmed the Enterolabs site a few times but they seem to use the phrase "gluten sensitivity" but I've seen people post here that Enteroblabs diagnosed them as "gluten intolerant". I don't know if they got that specific wording in a report or if sensitivity = intolerance to them.

It seems to me that there are digestive issues, auto-immune issues and allergy issues with gluten. A person can have combinations of these. From a diet/lifestyle impact perspective they are treated the same. From a perspective of being more likely to have similar conditions, they are very different.

Gwen B Rookie
You are correct that many places use gluten intolerant interchangeably with celiac including many posts on this site.

The places where I've seen it specifically different make the distinction of an intolerance being a GI system issue (not being able to digest properly) versus an immune system response.

I've only skimmed the Enterolabs site a few times but they seem to use the phrase "gluten sensitivity" but I've seen people post here that Enteroblabs diagnosed them as "gluten intolerant". I don't know if they got that specific wording in a report or if sensitivity = intolerance to them.

It seems to me that there are digestive issues, auto-immune issues and allergy issues with gluten. A person can have combinations of these. From a diet/lifestyle impact perspective they are treated the same. From a perspective of being more likely to have similar conditions, they are very different.

There is an aticle on the main Celiac.com site entitled celiac vs. gluten intolerance - What's the difference? which goes into detail. The crux of the matter as you say is that the cure is the same. I think that if you have gluten intolerance you may still have digestive issues but the damage to the intestinal villi is not (yet) so bad to be declared celiac. Some people may never get total villous atrophy but suffer other auto-imune diseases, hyperthyroid, diabetes, arthritis, some may suffer IBS or cancers of the digestive tract but still not have villous atrophy. The point is that avoiding gluten will (hopefully) prevent further seroius illness.

I do not have celiac genes but both 'gluten sensitive' genes and my Enterolab testing also showed that I have anti-gliadin antibodies. I think that this means that there is an auto-immune response. Allergies produce IgE not IgA and are not necessarily permanent. The testing only confirmed that my digestive problems that cleared up since I went gluten-free 4 months ago, were as a result of being gluten intolerant. I prefer to use this phrase because it is more specific and obvoiusly, I can no longer tolerate gluten! I also have fat malabsorption problems and associated difficulty absorbing vitamins indicating that I have some intestinal damage. Whether I call it celiac or not is a moot point. The effects of the inability to digest gluten are damage to the body no matter what you call it and I will need to be gluten free for the rest of my life.

Tim-n-VA Contributor

I see one "Allergy vs. Intolerance - What is the Difference?" where is the celiac vs intolerance? I'm probably looking right over it...

Gwen B Rookie
I see one "Allergy vs. Intolerance - What is the Difference?" where is the celiac vs intolerance? I'm probably looking right over it...

Sorry Tim, didn't check the titles properly, got glutened a couple of days ago and am not past the headache/brain fog yet! : :huh:

'Celiac Disease-Gluten sensitivity: What's the difference? By Ron Hoggan and and the same subject is discussed in 'Early Diagnosis of Gluten Sensitivity: Before the Villi are Gone' by Kenneth Fine

I mixed up the titles and gist of the articles but the latter is more comprehensive in explanation.

Nyxie63 Apprentice

I'm gluten-intolerant and also react to both gluten and wheat on allergy testing. I also react to rice, corn, soy, oats, eggs, beef, pork, chicken, dairy, brewer's yeast... and this is only Round 1 of the testing. Basically, if I eat it on a regular basis, I react to it.

I have Leaky Gut Syndrome. I also have candida and Lyme disease. Now, which caused what, I've no clue. I tested positive for candida before starting any antibiotics for the Lyme. All the food intolerances only started showing up about 6 months ago.

Anyway, in response to your question.... Yes!


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



Celiac.com Sponsor (A8-M):



Gwen B Rookie
Sorry Tim, didn't check the titles properly, got glutened a couple of days ago and am not past the headache/brain fog yet! : :huh:

'Celiac Disease-Gluten sensitivity: What's the difference? By Ron Hoggan and and the same subject is discussed in 'Early Diagnosis of Gluten Sensitivity: Before the Villi are Gone' by Kenneth Fine

I mixed up the titles and gist of the articles but the latter is more comprehensive in explanation.

I just checked to see if the articles are still there. They are under the Celiac Disease-summary/overview.

Tim-n-VA Contributor

Thanks. I only had time to skim them but it seems they support my point. That is, they use the term sensitivity not intolerance.

Trickytree Newbie
I'm gluten-intolerant and also react to both gluten and wheat on allergy testing. I also react to rice, corn, soy, oats, eggs, beef, pork, chicken, dairy, brewer's yeast... and this is only Round 1 of the testing. Basically, if I eat it on a regular basis, I react to it.

I have Leaky Gut Syndrome. I also have candida and Lyme disease. Now, which caused what, I've no clue. I tested positive for candida before starting any antibiotics for the Lyme. All the food intolerances only started showing up about 6 months ago.

Anyway, in response to your question.... Yes!

Nyxie63, this sounds very similar to where I'm at - if I eat something once a week it's come up as an intolerance. The only things that I've ever had an identifiable reaction to are milk and chilli, but generally I just feel rubbish and pick up whatever bug is going round, (or as the doctors put it, I've had "IBS" and "a virus" for the last few years), hence the intolerance test. I've got a tiny little bit of hope that if I can identify whether it's gluten or yeast that's the root cause I might be able to sort the rest out to some extent...

Not to wish this on anyone, but somehow reassuring to know there are other people out there who understand. Thanks all for the responses; I've been struggling more with the absence of information so far than actually changing my diet (except for the gluten which is in until I get the test!). And also thanks for reading even though I messed the title up to say the exact opposite of what I meant.

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748

    Nicolah
    Newest Member
    Nicolah
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.