All Or Nothing? Seriously?

[Tim86]

First, my background: I'm not diagnosed by a doctor...I'm just trying a gluten-free diet. It has been 3.5 weeks, and I've only noticed very minor improvement in my IBS symptoms. No improvement in other symptoms.

I'm having a hard time buying into this idea that you have to completely eliminate 100% of gluten from your diet, otherwise it won't help you at all. Could someone please explain why this is true, in medical terms (then translate to layman's terms)? Okay, maybe there are some people who are severely sensitive to it...let's set those people aside. Let's just talk about the majority of people who are just gluten intolerant. My understanding is this isn't like an allergy. My son is allergic to peanuts, so I know the smallest amount of peanut exposure can be dangerous to him. But I think gluten would be different.

If I am gluten intolerant, and I cut out 80-90% of the gluten from my diet, wouldn't that at least help me feel moderately better? Sure, maybe I could feel even better yet if I went 100% gluten free, but that is so hard! It just doesn't seem worth it, since I don't have severe symptoms. If 80-90% reduction works for me, then I can easily cut back on breads and a few other significant sources. But I'd rather not read labels all the time looking for trace sources of gluten.

Don't get me wrong...I know for many people, they need to eliminate 100% of gluten. But I'm not convinced this is true for all Gluten Intolerant people. Please try to convince me otherwise if you disagree. Or if you agree with me, I'd like to hear from you, too.

By the way...I haven't tested this theory on myself yet. I plan to give it a try. If I can keep my IBS under control by minimizing gluten, but not 100% cutting it out, then I'll probably just roll with it.

[Lisa]

BUT, should you have Celiac Disease, which an autoimmune response to gluten, you are creating damage to your small intestines, by continuing to consume gluten. In this case, it's not the amount of gluten that you consume, rather it's the autoimmune response TO THE GLUTEN which does the damage.

Many people feel that a gluten intolerance or sensitivity is a precursor to Celiac. I have seen no studies which implies this, but it does seem reasonable.

Gluten does not create a anaphylactic response, but it will slowly reak havoc on your body in the forms of diabetes, intestinal lymphoma, thyroid conditions, fibromyalgia, osteo and rheumatoid arthritis and a few more unfortunate issues -if indeed you have Celiac Disease.

You may want to consider testing. And Welcome

[Jestgar]

What MG said...

Seriously, if you haven't been tested for celiac disease, and don't plan to be, and eating gluten has very little effect on your health, don't worry about it.

If you have been diagnosed with celiac disease, you have to be 100% gluten-free to protect your health. If you feel ill when you eat gluten, you're likely to be 100% gluten-free just to feel good.

[Darko21]

If you do have celiac..don't have any gluten at all...trust me. Well, don't just trust me, think of it for yourself like this.

Think of your body as a soccer team. Would you rather have your body playing on offense, getting healthy, absorbing nutrients, and eliminating toxins. OR, would you rather have a player get yellow carded so that the other team gets a penalty kick and all of a sudden you are on defense, from which you're not even thinking about offense.

I'm not a doctor or even very well versed in the subject for that matter. But I do know that a weakened immune system impairs digestion (absorbing vital nutrients) and that's not even to mention that the digestion system is the system being damaged. And I think a gluten response is somewhat similar to an allergic response...in that it actually does damage.

[tarnalberry]

here's the reason why I think that you shouldn't claim "just gluten intolerant" (when it comes to treatment) based on self-diagnosis.

since celiacs can be asymptomatic, or nearly asymptomatic, or have delayed or minor symptoms, how would you distinguish, without diagnostic tests, whether or not you were having an immune response to gluten in your intestines or not? you *can't* based on symptomology alone.

if you've had *COMPLETE* blood work and an endoscopy that you are confident completely rule out celiac, and you know that you still have symptoms with gluten, I can understand saying that is gluten intolerant without intestinal damage - after all, you've verified that you have no intestinal damage.

but without those tests, since celiac and intestinal damage doesn't always cause symptoms, you cannot rule out intestinal damage (and all of the complications, like cancer and nutritional deficiency diseases that go along with it), just because you don't experience symptoms.

hence, if you don't have tests that clear you, and you suspect a problem with gluten, unless you want to play russian roulette with intestinal cancer (which, while I may think is a bad idea, IS still your choice), you treat it as though it's celiac, and go completely gluten free. why all or nothing for celiac? because it's an issue of chemistry. a microscopic amount (~1/64th of a slice of bread) will start the chemical reaction - which is self-sustaining for about two weeks - that causes damage to your intestines. that damage and associated inflammation increases your risk for numerous medical issues, from cancer to other autoimmune conditions to things like anemia and osteoporosis, and on average, cuts 10-years of an untreated celiac's life.

basically, the risk is so high, the tradeoff isn't worth it, imho.

if you have the diagnostics, however, that show that you have no antibodies, and no damage, then maybe you can be confident that your symptoms are a true intolerance, and not auto-immune reaction, and you may have a little more lee-way. that would require you to get tested while consuming a full diet of gluten, however.

[RiceGuy]

As for not seeing much improvement after 3.5 weeks, I can tell you that it was a full six months totally gluten-free before I saw any appreciable change. It was soooo worth it, and continues to be. I don't have any "official" diagnosis, but the improvements I've experienced are IMO quite conclusive. It just didn't all happen right away. Given how long the damage had been going on before I figured it out, why should I expect my body to miraculously and completely heal like recovering from the common cold? The way I think of it, the malabsorption damages every organ and system of the body. Considering how long one broken bone, or one skinned knee takes to heal, how long should an entire body take to fully repair itself? In addition, until the gut is capable of effectively absorbing nutrients, the body is attempting to heal on less nutrients than it might need just for routine maintenance.

One last thing; Are you certain that you've been 100% gluten-free? Many of us have thought so, only to find out that there was gluten in something we'd thought was gluten-free. I had this happen very recently, with a product actually labeled gluten-free, only the facility it is made in is subject to CC (Cross-Contamination).

[valeriek]

Hey Rice Guy

What was the product you were eating that you thought was gluten free and wasnt. Just wondering. That is funny that your name is rice guy. Rice is my favorite food.

[mimommy]

I've only noticed very minor improvement in my IBS symptoms.

IBS symptoms are very similiar to Celiac symptoms, and Celiac is often misdiagnosed as IBS.

I'm having a hard time buying into this idea that you have to completely eliminate 100% of gluten from your diet, otherwise it won't help you at all.

Try thinking of it in terms of a recovering drug addict deciding to use "just a little" cocaine. Apples to oranges, perhaps, but my point is that it takes only a small amount of gluten to destroy the villi of a person w/ celiac, as it would only take a little cocaine to completely destroy an addicts rehab.

maybe there are some people who are severely sensitive to it...let's set those people aside. Let's just talk about the majority of people who are just gluten intolerant.

People who are "severely sensitive to gluten" unfortunately are not the minority; I believe you may have this backwards. And, they are already "set aside"; the term for them is Celiac Disease.

My understanding is this isn't like an allergy.

In this, you are correct. Celiac is not an allergy, it is an auto-immune disease.

If I am gluten intolerant, and I cut out 80-90% of the gluten from my diet, wouldn't that at least help me feel moderately better? Sure, maybe I could feel even better yet if I went 100% gluten free, but that is so hard!

If a diabetic took 80-90% of their prescribed insulin, I'm sure they'd feel a little better, too, but I think it's prudent to take the full 100%.

It just doesn't seem worth it

If you truly feel bad and a dietary change can heal your body, it is "worth it".

But I'd rather not read labels all the time looking for trace sources of gluten.

Heck, I'd rather not either. In fact, I'd rather lie in bed reading a book all day than work two jobs, but cest la vie. Do you read labels to look for peanuts in the ingredient lists for your son? If you are willing to do that for him, why so hesitant to do for yourself?

If I can keep my IBS under control by minimizing gluten, but not 100% cutting it out, then I'll probably just roll with it.

Do what is best for you. Read through the postings on this forum, discuss these issues with your doctor, take the time make an informed choice. If you are able to find suitable relief of symptoms by only REDUCING gluten, not eliminating, know that you could still be damaging your body and/or you are luckier than most of the people on this forum.

[Tallforagirl]

If I can keep my IBS under control by minimizing gluten, but not 100% cutting it out, then I'll probably just roll with it.

Before you get carried away with "trying" the gluten-free diet, go back on the gluten for a month or so, get a celiac blood panel and possibly an endoscopy, then if it's all negative, you can "try" the diet, to whatever degree you feel it helps you. If the tests are positive, then sorry, but you don't get to "try" the diet 80-90%, you have to go 100% gluten-free, for the reasons everyone else has already laid out.

[RiceGuy]

Hey Rice Guy

What was the product you were eating that you thought was gluten free and wasnt. Just wondering. That is funny that your name is rice guy. Rice is my favorite food.

It was the Arrowhead Mills flours - buckwheat and millet. Thankfully I have other sources for these.

[Tim86]

Before you get carried away with "trying" the gluten-free diet, go back on the gluten for a month or so, get a celiac blood panel and possibly an endoscopy, then if it's all negative, you can "try" the diet, to whatever degree you feel it helps you. If the tests are positive, then sorry, but you don't get to "try" the diet 80-90%, you have to go 100% gluten-free, for the reasons everyone else has already laid out.

I'm thinking of going that route. In fact, I started Friday night consuming gluten again. It is Sunday night, and I haven't had any symptoms flare up at all. Click here for more on that:

Read my other post about going back on gluten.

Anyway, I'm going to talk to my doctor, and maybe do the blood testing. I haven't decided yet. The thing is...I think many of you are always starting with the assumption that you DO have celiac until proven otherwise. I tend to assume I DON'T have something until it is proven I do (kind of like innocent until proven guilty). I understand all of the risks of going undiagnosed...but seriously, if I treated every disease like this, I could probably come up with over 20 potential diseases that might be causing my symptoms. I can't just start with the assumption that I have all of these 20+ diseases, and then start trying to prove that I DON'T have any of them. Why should Celiac be any different?

[Rebecca's mom]

This is probably TMI for most folks, but my husband noticed an unexpected "bonus" when he went gluten-free. While he couldn't really tell any difference in how he felt until a couple of months later, he noticed an immediate change in his "performance". As far as he is concerned, he has eaten his last piece of wheat toast......(And I'm not complaining, either!)

[Tallforagirl]

I think many of you are always starting with the assumption that you DO have celiac until proven otherwise.

If you have problems that appear to be linked with consumption of gluten, then it's fair to consider that you might have celiac disease. It's a much more common condition than many people believe (an estimated one in 133 of US population has it).

Because this is an autoimmune disease with a known dietary trigger, it's very easy for someone to "test" themselves by going gluten-free. Then if they feel better, bingo, they "know" the answer.

This is not harmful in itself, but if you are diagnosed with celiac disease by testing, you also get a full blood count to determine if you have any nutrient deficiencies and you have a bone density scan in case you need treatment for osteoperosis. Should a cure for celiac disease be found in the future, I think the self-diagnosed would find it difficult to access the treatment and/or get insurance coverage for it.

I don't begrudge anyone who tries out a gluten-free diet after going through testing, if they don't get a diagnosis and are still suffering.

You sound like the sort of person who needs proof before committing to a 100 per cent gluten-free diet so I think it's a good idea that you get tested first to confirm one way or the other whether you have celiac disease, then you can decide based on all the information as to what degree you want to go gluten-free.

[mushroom]

This is not harmful in itself, but if you are diagnosed with celiac disease by testing, you also get a full blood count to determine if you have any nutrient deficiencies and you have a bone density scan in case you need treatment for osteoperosis. Should a cure for celiac disease be found in the future, I think the self-diagnosed would find it difficult to access the treatment and/or get insurance coverage for it.

I do not have any trouble getting all the testing I need, including DEXA scans, even though self-diagnosed. And now that they have seen my deficiencies it confirms for my docs that my self-diagnosis was probably right. And after all, it was their fault for not thinking of it and making me do their work

[weluvgators]

Gluten does not create a anaphylactic response, but it will slowly reak havoc on your body in the forms of diabetes, intestinal lymphoma, thyroid conditions, fibromyalgia, osteo and rheumatoid arthritis and a few more unfortunate issues -if indeed you have Celiac Disease.

I am finding more information that leads me to believe that anaphylaxis is possible due to gluten. Here are a couple of studies looking at the issue:

Open Original Shared Link

Open Original Shared Link .

There is also information on wiki that discusses it, particularly as it relates to exercise induced anaphylaxis, under both wheat allergy and gluten sensitivity.

[TrillumHunter]

This is probably TMI for most folks, but my husband noticed an unexpected "bonus" when he went gluten-free. While he couldn't really tell any difference in how he felt until a couple of months later, he noticed an immediate change in his "performance". As far as he is concerned, he has eaten his last piece of wheat toast......(And I'm not complaining, either!)

ROFLOL! Big bonus!

[sugarsue]

This is probably TMI for most folks, but my husband noticed an unexpected "bonus" when he went gluten-free. While he couldn't really tell any difference in how he felt until a couple of months later, he noticed an immediate change in his "performance". As far as he is concerned, he has eaten his last piece of wheat toast......(And I'm not complaining, either!)

I wish my boyfriend would give up wheat, now for more reasons that one!