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

      By trents · Posted

      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
      IBS-D vs Celiac

      By Scott Adams · Posted

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    • Scott Adams
      Question

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

      By catnapt · Posted

      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
      IBS-D vs Celiac

      By trents · Posted

      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.
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