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Can I Be Gluten Intolerant And Not Have Celiac Disease?

Pig Daddy

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Pig Daddy Newbie
Pig Daddy
Posted

Can I be gluten intolerant and not have celiac disease? I test negitive for celiac but have all the symptoms pluse maybe one or two really strange ones.

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psawyer Proficient
psawyer
Posted

Yes, you can. My niece (not biological) is an example. She is gluten- and casein-intolerant, but does not have celiac disease.

ravenwoodglass Mentor
ravenwoodglass
Posted

You can also be celiac and test negative. Both need to be just as strict with the diet.

Heidi S. Rookie
Heidi S.
Posted

Yes, Yes, Yes! My mother and sister are celiacs. I and my niece are gluten intolerant. In the case of my niece and I we are very symptomatic, we react within an hour of glutening. My doctor told me that first degree relatives of Celiacs are sometimes the most severe with reactions.

A negative celiac test really means nothing. My niece and I were diagnosed gluten intolerant b/c we do not carry the 98% gene. Either we are the 3% who do not carry the gene but are celiacs or we are just gluten intolerant. Either way a gluten free diet is all we need! I myself are done with testing and have accepted the gluten free diet! Doctors are "practicing" medicine for a reason. Celiac tests are lacking and there are some terrible information out there from doctors about celiacs.

Trust your body and symptoms!

jackay Enthusiast
jackay
Posted

I do not know if I am Celiac or gluten intolerant. I did not have tests done until after I had eliminated most gluten. I will never go back to eating gluten just to have accurate test results.

Gluten makes me very ill. With that being said, I completely avoid it.

K8ling Enthusiast
K8ling
Posted

ABSOLUTELY!! I am! :)

siglfritsch Newbie
siglfritsch
Posted

You can also be celiac and test negative. Both need to be just as strict with the diet.

That is just incredible that all those health problems resolved after going gluten free. My blood tests were negative, but I had been gluten free for 3 weeks before the tests. I'm just staying gluton free also. I don't want to make myself sicker just to satisfy a doctor.

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Coolclimates Collaborator
Coolclimates
Posted

Yes. In fact, most people with gluten intolerance DO NOT have Celiac disease. Read "Better without wheat." This book puts a lot of emphasis on people with gluten intolerance who don't have Celiac. Unfortunately, people with gluten intolerance (but not celiac disease) have an even harder time being diagnosed because doctors know so much less about this than Celiac. Also, some people with gluten intolerance actually suffer more than people with Celiac and are often taken less seriously than those with Celiac.

All these terms can be easily thrown around, and this book explains this better. Celiacs also have gluten intolerance. Celiac Disease is just a specific type of gluten intolerance. The only difference is with Celiac disease, the villi are blunted or smooth. For people with general gluten intolerance (but not celiac disease), their intestines appear normal, as does the villi.

glutenfr3309 Rookie
glutenfr3309
Posted

yep! i didn't test positive for celiac through blood tests or a small intestine biopsy but i follow the gluten-free diet. already started to show inflammation in my intestines but the biopsy was negative for sprue. my doctor said had i not caught it this early 20 years from now i most likely would have been positive. i will NEVER go back to gluten!!

mushroom Proficient
mushroom
Posted

Dr. Rodney Ford, New Zealand's Mr. Celiac. believes that celiacs are a very small minority of those with gluten intolerance. I myself believe that you become celiac after you have been gluten intolerant and gluten eating for long enough (although there are the rarer celiacs who will never test positive no matter how long they eat gluten).

ravenwoodglass Mentor
ravenwoodglass
Posted

That is just incredible that all those health problems resolved after going gluten free. My blood tests were negative, but I had been gluten free for 3 weeks before the tests. I'm just staying gluton free also. I don't want to make myself sicker just to satisfy a doctor.

I was only expecting my constant D to go away. When all the other stuff resolved it felt like a miracle.

kayo Explorer
kayo
Posted

Count me in too. My diagnosis has gone like this: celiac, not celiac, celiac, not celiac.

Frustrating? For sure.

I'm in the camp that believes celiac and non-celiac gluten intolerance are the same thing, just varying degrees.

What I know: when I eat gluten I get violently ill. When I don't eat it I feel better. My body is healing and my viatmin levels are improved. Next month will be my one year anniversary of being gluten-free. best thing I have done for myself and Ill never return to eating gluten.

"Better without wheat."

Thank you for this, it's going on my wishlist pronto.

Skylark Collaborator
Skylark
Posted

Dr. Rodney Ford, New Zealand's Mr. Celiac. believes that celiacs are a very small minority of those with gluten intolerance. I myself believe that you become celiac after you have been gluten intolerant and gluten eating for long enough (although there are the rarer celiacs who will never test positive no matter how long they eat gluten).

Ditto Dr. Markku M

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
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