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Sensitivity To Gluten Is Just As Serious As Celiac Disease


Ricado

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Ricado Newbie

I have been told by the active posters on this site that my sensitivity to gluten, which was suggested by my chiropractor, is no less serious than Celiac Disease. I was under a different impression but am now open to hear more opinions. My mind is now open to this new information.


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SchnauzerMom Rookie

I have never been diagnosed with celiac disease but I am definitely sensitive to gluten. I have read that gluten damages your intestines. I think it is possible that sensitivity to gluten could turn into celiac if you don't go on a gluten free diet.

CarlaB Enthusiast

Many of us with gluten sensitivity have as severe of reactions as those with celiac, including autoimmune reactions. Plus, if it was your chiropractor, I would assume you haven't actually been tested for celiac, so there's no way to know if you really have celiac or gluten intolerance. Many people with the DQ1 genes have more neurological reactions, from what I read, but I have digestive reactions, too, and I'm double DQ1.

The best way to tell if it bothers you and how badly is to be 100% gluten free for a while, then challenge it.

Nancym Enthusiast
I have been told by the active posters on this site that my sensitivity to gluten, which was suggested by my chiropractor, is no less serious than Celiac Disease

There's not a lot of recognition about this in medicine yet, but I believe it is important to take it seriously. A lot of my opinion was formed by what I've read in The Gluten File, at thefooddoc.com (good GI doctor's blog) and the articles written for celiac.com and Dr. Fine's writings: Open Original Shared Link. There's even a Open Original Shared Link out there now that is encouraging all his patients to give up wheat.

This is an area that is barely understood or even acknowledged outside of certain medical/research circles. But from my own history of related diseases and progress on a gluten-free diet, I think that being gluten free for me, a non-celiac, is very important.

I suggest diving into the research and drawing your own opinions.

GlutenWrangler Contributor

I have gluten-sensitive genes, (DQ1 and DQ3), but I have celiac disease, i.e., intestinal damage. I don't think the gluten sensitivity is any less serious because it turns into celiac disease.

-Brian

CMCM Rising Star

I have read items here and there suggesting that some doctors/researchers would like to eliminate the term "celiac disease" and refer to the entire syndrome as "gluten intolerance". The feeling seems to be increasingly that gluten sensitivity or intolerance manifests across a broad spectrum of reactions, and that any degree of gluten sensitivity could potentially lead to intestinal damage at some point. Dr. Fine definitely says with EITHER the celiac OR the gluten sensitivity associated genes, one has the potential for intestinal damage.

I have gluten-sensitive genes, (DQ1 and DQ3), but I have celiac disease, i.e., intestinal damage. I don't think the gluten sensitivity is any less serious because it turns into celiac disease.

-Brian

Guest cassidy

First of all, the testing for celiac isn't highly accurate so we don't know how many of us that supposedly have a gluten sensitivity really have celiac, unless we have had genetic testing. My blood test was negative and I have had medical problems my entire life that went away when I went gluten-free. I have no doubt that eating gluten affects many parts of my body and does damage - I had 5 surgeries that I think could have been prevented if I had known about this sooner. When I have even a crumb of gluten it takes 2-3 weeks for me to fully recover. My symptoms are gi, migraines, anxiety, brain fog - again affecting all different parts of my body.

So, either I have celiac that wasn't caught in the testing or I have a severe reactions to gluten that are very harmful to my body. Either way, it isn't something that I can take lightly if I want to feel good.

Unfortunately, you may find like many of us have, that doctors don't know too much about all of this. Hopefully, you will find a good one that will lead you in the right direction, but many of them just don't know.


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Ricado Newbie
There's not a lot of recognition about this in medicine yet, but I believe it is important to take it seriously. A lot of my opinion was formed by what I've read in The Gluten File, at thefooddoc.com (good GI doctor's blog) and the articles written for celiac.com and Dr. Fine's writings: Open Original Shared Link. There's even a Open Original Shared Link out there now that is encouraging all his patients to give up wheat.

This is an area that is barely understood or even acknowledged outside of certain medical/research circles. But from my own history of related diseases and progress on a gluten-free diet, I think that being gluten free for me, a non-celiac, is very important.

I suggest diving into the research and drawing your own opinions.

Beautiful post Nancym! I went to you r very helpful links. I Just this morning began reading "Wheat Free Worry Free" The art of happy healthy gluten free living - by Danna Korn and she sums up the exact question I have which may be a question only of semantics with this quote on page 20. "In most cases though, the terms wheat and gluten intolerance or sensitivity are used when the condition is, in fact, Celiac Disease."

Nancym Enthusiast

Aw shucks! Thanks. *blush*

Ricado Newbie
I have been told by the active posters on this site that my sensitivity to gluten, which was suggested by my chiropractor, is no less serious than Celiac Disease. I was under a different impression but am now open to hear more opinions. My mind is now open to this new information.

I couldn't find the link to start a new topic but can someone please tell me if there is gluten in soy? I still don't understand. Are they separate maladies, gluten and soy intolerance, are they linked or is there actually gluten in soy??

jerseyangel Proficient
I couldn't find the link to start a new topic but can someone please tell me if there is gluten in soy? I still don't understand. Are they separate maladies, gluten and soy intolerance, are they linked or is there actually gluten in soy??

Ricardo,

There is no gluten in soy. Soy and gluten (found in wheat, barley and rye) are 2 separate things.

It is possible to be allergic or intolerant to soy--I am intolerant. I get GI problems when I eat soy, so I avoid it.

Others with Celiac or gluten intolerance can eat soy with no problems.

jukie Rookie

Soy itself does not contain gluten, but many soy sauces are made with wheat so it's always important to check all the ingredients. Also, many people with gluten sensitivity have multiple intolerances, two of the more common ones being casein (dairy) and soy.

Juliebove Rising Star

The damage to your body might not be the same as what happens to someone with celiac, but then like someone else said, you might not know if you have celiac or not.

I think reactions vary from person to person. For my daughter it's skin rashes, nosebleeds, upset stomach, headache, sleepiness, etc. It can really vary depending on what she ate and how much. I once rinsed off a burger patty that we'd gotten to go. It had been put on a bun even though I ordered just the patty. Within a half an hour of eating it, she was sick.

In no way would I say that her allergy is less important than celiac, although they might be two different things.

mommida Enthusiast

Soy and oats do not have gluten. The protein chain for soy and oats are similar to the protein chain of gluten. Some Celiacs react to the protein chain of soy and/or oats. There is still an ongoing debate about oats, it seems all US oats are too cross-contaminated with gluten to be safe. There are some oats being labeled "gluten free".

L.

Sinenox Apprentice

I have read that gluten intolerance, unlike allergies and celiac, is different in the sense that it's a nervous system reaction as opposed to triggering the immune system, and that it doesn't do lasting damage. So while the symptoms may be similar, the actual damage and potential for serious complications or autoimmune response simply isn't there. Does anyone know if this is true?

lonewolf Collaborator
I have read that gluten intolerance, unlike allergies and celiac, is different in the sense that it's a nervous system reaction as opposed to triggering the immune system, and that it doesn't do lasting damage. So while the symptoms may be similar, the actual damage and potential for serious complications or autoimmune response simply isn't there. Does anyone know if this is true?

In my own experience this hasn't proved true. I don't have Celiac disease, but I DO have 3 autoimmune problems that get better/worse depending on my intake of gluten. So, no matter what anyone says, for me gluten and autoimmune responses are linked.

lorka150 Collaborator
In my own experience this hasn't proved true. I don't have Celiac disease, but I DO have 3 autoimmune problems that get better/worse depending on my intake of gluten. So, no matter what anyone says, for me gluten and autoimmune responses are linked.

out of curiousity (if it's okay), what do you have?

lonewolf Collaborator
out of curiousity (if it's okay), what do you have?

I have psoriasis (not gone, but much better on G F, CF, SF), psoriatic arthritis (just like RA, but blood tests negative for Rheumatoid factor - in remission for a long time now) and a kidney disease called Minimal Change Nephrotic Syndrome (also in remission).

lorka150 Collaborator

i'm glad you're doing so much better!

thanks.

JenKuz Explorer

There was a great post earlier this month reminding everyone that gluten intolerance/celiac is a systemic autoimmune disorder. It can express itself in many ways, in a variety of tissues--not just intestines. Some people might have it in several other tissues and *not* in the intestines at all.

The problem is that celiac diagnosis is defined by the presence of villi damage. A person can have autoimmune reactions from gluten that do not show up in the intestines (or have not as yet) and still have the same process of autoimmunity going on in their body as a person with villous damage has.

So a person like lonewolf could have gluten-related autoimmune damage to several tissues without having a dx of celiac--but to me, it seems like it's all the same sort of disease process.

Also, damage isn't always so straightforward to assess. My GI doc didn't go down past the duodenum in the endoscopy, which isn't far enough to see if there's damage or not (though based on my malabsorption score, there probably is). Still, I didn't "qualify" for a celiac diagnosis based on that assessment.

But I consider myself as celiac, because I have skin manifestations, a family history of autoimmune disorders, and a high-risk genotype. I am sure that I have intestinal damage and autoimmunity.

The distinction between celiac and gluten intolerance seems to be an artifact of the tests that are used, rather than a logical difference in etiology, process or expression. So to me it's a distinction that doesn't deserve much respect as yet. Some day, if they are able to differentiate between disease processes (rather than differences in the results from tests that aren't very good to begin with), then I would be more inclined to distinguish them myself.

Ricado Newbie

Thank You everyone for all the great info offered in this thread. If a supplement has grain alcohol in it does that mean for sure there is gluten?

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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
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    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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