I Have Some Newbie Questions About Celiac Disease

[ship69]

Hi

 

Some newbie questions:

 

1. Is there any real difference between Celiacs (/ Coeliacs) and extreme intolerance of wheat/gluten?

2. MUST I have those genetic alleles in order to be a Coeliac?

3. Is there any cure other than gluten avoidance?

4. Is it possible to have MILD Coeliac disease? If so what is the difference between gluten intolerance and Coeliac disease?

BACKGROUND THEORY

OK, my understanding is the orthodox medicine regards Coeliac ("Celiac" in the US) as follows:

A. It is irreversible and the only known effective treatment is a lifelong gluten-free diet.

B. It is something that only happens to people who are genetically predisposed (HLA-DQ2 genetic allele or (less commonly) the HLA-DQ8 allele, says WikiPedia).

C. However a moderate number of people have these alleles but are NOT Coeliacs.

D. It's impossible to prove that someone is a Coeliac if they have been on a gluten free diet, (presumably because ALL symptoms will disappear).

 

To me, this sounds suspiciously like doctors don't understand what the heck is going on. I once met a woman who the doctors refused to believe was allergic but who after a 3 day distilled water fast was put into a coma right before their eyes by eating a 1 gram of roast beef. And then the medics advised "OK we believe you. Whatever you do, never eat beef again!" But she then completely cured herself by a very strict rotational diet, very gradually re-introducing beef. And when I met her she was cheerfully chewing on a beef stew!

 

I had a tube put down my throat and biopsies were taken of my stomach and small intestines and they were odd but inconclusive. The problem was that I had been gluten free for about 6 months before the test, other than the final week before the test. I have not been genetically tested yet. But for many years I have had IBS/wheat intolerance....

 

J

 

 

 

 

 

 

[kareng]

Check out the Newbie thread. https://www.celiac.com/forums/topic/91878-newbie-info-101/

Also, lots of good info on the university of Chicago Celiac Center website. Open Original Shared Link

Unlike an allergy, Celiac doesn't go away. You can't cure it with a rotational diet, etc.

[bartfull]

Wow. Lot's of questions.

 

1. So far, they say that non-celiac gluten intolerance is different from celiac in that, even though the symptoms are the same, there is no damage to the small intestine. I PERSONALLY suspect that there IS some damage being done, but it just isn't visable yet. But that's just me. Either way, if a peson with NCGI doesn't want to be sick they will go gluten-free anyway.

 

2. I THINK it is possible to have celiac even without the genes. And I know it is possible to have the genes but never get celiac.

 

3. No. There is no cure period. If you have celiac and stay gluten-free you won't be doing damage to your body or risk developing further auto-immune diseases, and you will not get symptoms, but you will ALWAYS have celiac, and even after years of being gluten-free, if you eat gluten you WILL be doing damage.

 

4. No such thing as mild celiac. You may have EARLY celiac, and therefore not have as much damage as some of us who went for years without being diagnosed, but celiac is like being pregnant - you either are or you aren't.

 

It is true that if you have been gluten-free for a period of time, testing will often come back with a false negative. Some folks want or need that diagnosis for financial or personal reasons, but quite a few of us just know that being gluten-free makes us feel better, and that is good enough. You obviously have discovered that being gluten-free makes you feel better. If you want a doctor's diagnosis you would have to go back on gluten for, I think the general consensus is three months.

 

Your friend with the meat allergy may have been bitten by a tick. Sounds crazy, but google tick bite/meat allergy and you'll see. The thing is, it is possible to desensitize someone from allergies (in some cases). That is why the rotation diet worked for her. But celiac is not an allergy. It is an auto-immune disease, and there is no cure, and no way to desensitize a celiac from gluten. It really is a life-long thing - gluten-free forever.

[shadowicewolf]

Hi

 

Some newbie questions:

 

1. Is there any real difference between Celiacs (/ Coeliacs) and extreme intolerance of wheat/gluten?

2. MUST I have those genetic alleles in order to be a Coeliac?

3. Is there any cure other than gluten avoidance?

4. Is it possible to have MILD Coeliac disease? If so what is the difference between gluten intolerance and Coeliac disease?

BACKGROUND THEORY

OK, my understanding is the orthodox medicine regards Coeliac ("Celiac" in the US) as follows:

A. It is irreversible and the only known effective treatment is a lifelong gluten-free diet.

B. It is something that only happens to people who are genetically predisposed (HLA-DQ2 genetic allele or (less commonly) the HLA-DQ8 allele, says WikiPedia).

C. However a moderate number of people have these alleles but are NOT Coeliacs.

D. It's impossible to prove that someone is a Coeliac if they have been on a gluten free diet, (presumably because ALL symptoms will disappear).

 

To me, this sounds suspiciously like doctors don't understand what the heck is going on. I once met a woman who the doctors refused to believe was allergic but who after a 3 day distilled water fast was put into a coma right before their eyes by eating a 1 gram of roast beef. And then the medics advised "OK we believe you. Whatever you do, never eat beef again!" But she then completely cured herself by a very strict rotational diet, very gradually re-introducing beef. And when I met her she was cheerfully chewing on a beef stew!

 

I had a tube put down my throat and biopsies were taken of my stomach and small intestines and they were odd but inconclusive. The problem was that I had been gluten free for about 6 months before the test, other than the final week before the test. I have not been genetically tested yet. But for many years I have had IBS/wheat intolerance....

 

J

1. Yes, celiac is an autoimmune disease.

3. No, there isn't.

4. celiac disease is celiac disease, some my have no obvious symptoms, others may have really bad symptoms.

A. True

C. Quite true.

D. To prove? It is true you must do a gluten challenge in order for tests to come back accurately if you have been off of gluten.

[ship69]

 

Your friend with the meat allergy may have been bitten by a tick. Sounds crazy, but google tick bite/meat allergy and you'll see. The thing is, it is possible to desensitize someone from allergies (in some cases). That is why the rotation diet worked for her. But celiac is not an allergy. It is an auto-immune disease, and there is no cure, and no way to desensitize a celiac from gluten. It really is a life-long thing - gluten-free forever.

Well, yes, my friend MAY well have been bitten by a tick but it wasn't just meat - at her worst she was allergic/sensitive to essentially all foods. And yes, this became life-threatening. But she made essentially a full recovery.

 

Re "auto-immune disease". Let me take this slowly... OK,  I stand to be corrected by I remain suspicious... Are we saying it's an AUTO-immune disease that happens only in the presence of wheat? If so, then what the heck is the difference between being "allergic to wheat" and being "allergic to oneself er in the presence of wheat"? I mean both presumably involve the immune system going nuts and causing inflammation of the guts when wheat is present, yes? I mean if wheat/gluten is required to be present before the immune system attacks the host cells, how can we be sure that the immune system isnt attacking just cells that contain gluten. Perhaps they are actually attacking wheat/gluten antigens in the cell membrane of host cells... so in fact it's really just attacking the gluten in the cells and the cells are getting in the way - collateral damage if you will (!)

Does being VERY allergic to wheat look very different under the microscope from being Celiac? If so in what way? 

 

Also another question: Is it possible to become a Celiac without having those two alleles?

 

Btw, part of the reason I am "suspicious" is that medical orthodoxy has a long history of both arrogant certainty and being flat incorrect.

- Think about stress causing ulcers (it's more likely to be caused by bacteria).

- Think about eating spinach to give you iron (doesnt work - if anything, the reverse is true).

- Think about diabetes being "incurable" whereas a large number of people have in fact cured themselves by switching to a dramatically low GI diet. I could go on.

I once met a GP who looked me firmly in the eye and told me that the orthodox view is that "Gut problems are confined to the gut". Frankly for that degree of naivety he should have been struck off, but ever since that day I have had little respect for orthodoxy. 

 

[kareng]

Were you diagnosed with Celiac?

An allergy is different from an autoimmune response. But it sounds like you know that already. I'm wondering, if you don't believe the Celiac research doctors, why would you believe some strangers on the Internet?

I know it's not great to be diagnosed with Celiac. I get the feeling you are trying to " get out of" having Celiac? Unfortunately, currently, there is no cure for celiac Disease. They are working on several different protocols that look promising to help, if not cure, it. They are still several years away from being ready for the general public.

[ship69]

Were you diagnosed with Celiac?

 

Sort yes, sort of no. The doctors couldn't really decide. They put a large (extremely uncomfortable!) tube down my throat and took their samples. They say it looked "very strange" but was not full-blown Celiac. However given that I had only been eating wheat for 1 week this may not have been long enough to trigger whatever affect they are looking for.

When you say "Unfortunately, currently, there is no cure for celiac Disease" I find this bemusing. I mean if one can have the genes (alleles) that make you susceptible without have the disease (yet), and if it requires exposure to gluten for the disease to materialize, it sounds like celiac disease is something that only happens after prolonged exposure to gluten.

 

By analogy, if you keep irritating your liver by drinking alcohol for long enough, switches may flick and you MAY become an alcoholic. Again there is a genetic susceptibility too but the causal link is not absolute.  And likewise but once those switches have switched it is hard to switch them off again.

 

Also by analogy if you keep stressing you insulin system by eating large quantities of sweet (high GI) foods, you MAY end up with diabetes. And once the system has failed it is extremely hard although not necessarily impossible (whatever the medics tell you) to recover.

 

So it seems to me that there is a genetic susceptibility to Celiac disease and that if you keep stressing the guts with disbiosis and gluten (usually done multiple times per day) then eventually switches flick and you trigger an allergic attack. 

 

What I am saying is that both alcoholism and diabetes are deemed by medics to be 'binary'. You either have the condition or you don't.  My working theory is that there HAS to be a "you are on the way to getting this disease" state/pathway. And I want to know if I am on that pathway.

 

Do I trust doctors more than strangers? Again you are being 'binary' about this. Life is not binary. Life is not just black and white. Yes, life has black and has white however life also has subtlety and shades of grey. (In fact life also has shades of color and multiple dimensions!)

 

Yes I trust doctors more than stranger, however I know that in general doctors are a very blinkered and brainwashed group. There is much intellectual capital posturing and baggage. Medics like to simplify. They like to have a simple pill to solve everything. And then there are the pharmaceuticals trying all the tricks in the book to try to sell their particular drugs. Medics are very good as certain things (micro surgery for example is absolutely amazing), but they are terrible at anything holistic. (One look at normal hospital food tells you all you need to know.)  Many billions of pounds later medics still cant cure most types of cancer, nor arthritis. And they still cant cure Celiac disease. 

 

Oh yes, and the common cold. They cant cure that either.

 

So when you have a cold virus who should you trust? The doctor who you KNOW cant help you or listen intelligently to some random stranger on the Internet? 

 

It's all just personal preference I guess.

[kareng]

well... Anyway. Welcome to the forum. We have lots of good info and recipes, coping suggestions, etc. Let us know if there is a question you think we can answer. Good luck with your research.

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[NoGlutenCooties]

It's true that allergies and autoimmune responses both involve the immune system.  However, an allergy is a different type of response.  Open Original Shared Link

With Celiac, the antibodies that your body produces in its efforts to try to "kill" the gluten damages the villi in the small intestine, causing them to no longer be able to absorb nutrients from the foods you eat.

 

For what its worth... I don't trust doctors either.  To me they are a necessary evil.  Sometimes they do have useful information though.  Like anything else, you have to treat them as one source of information and put that information together with what you can find out elsewhere and do your own analysis and try your best to come up with a reasonable answer.  I put a bit more faith in nutritionalists, but they have their limitations too.  The human body is pretty darn complicated.

[frieze]

the diabetics that you view as cured are no more cured than a gluten free celiac.  They are both using diet to control their conditions.

[GF Lover]

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Colleen

[IrishHeart]

Celiac is not curable in the true definition of the word "cure". Once a celiac, always a celiac. But it has a treatment.

 

It can be put into remission--as in a remission of symptoms triggered by gluten--when one follows a strict gluten free diet.

 

That part is pretty black and white.

 

 I, too, have a problem with doctors. They missed my diagnosis for

over half my life and it caused me great sorrow in ways you can't imagine.

But I'm coming back from the walking dead.The human body can thrive if given the proper care.

 

If you think gluten makes your body sick, you should avoid it. That's my opinion.

 

I hope you view me as an intelligent stranger. 

 

Welcome to the forum. 

[notme]

 

 

Re "auto-immune disease". Let me take this slowly... OK,  I stand to be corrected by I remain suspicious... Are we saying it's an AUTO-immune disease that happens only in the presence of wheat? If so, then what the heck is the difference between being "allergic to wheat" and being "allergic to oneself er in the presence of wheat"? I mean both presumably involve the immune system going nuts and causing inflammation of the guts when wheat is present, yes? I mean if wheat/gluten is required to be present before the immune system attacks the host cells, how can we be sure that the immune system isnt attacking just cells that contain gluten. Perhaps they are actually attacking wheat/gluten antigens in the cell membrane of host cells... so in fact it's really just attacking the gluten in the cells and the cells are getting in the way - collateral damage if you will (!)

Does being VERY allergic to wheat look very different under the microscope from being Celiac? If so in what way? 

 

 

- Think about diabetes being "incurable" whereas a large number of people have in fact cured themselves by switching to a dramatically low GI diet. I could go on.

 

collateral damage is on the right track - you are interchanging the word 'allergy' and celiac is not an allergy.  think of your body mistaking the gluten for a germ.  your body thinks it's fighting an invader, and it attacks itself in the process. 

 

i am really interested in how people can cure diabetes themselves by switching their diet.  my son is type 1 and i am constantly worried about his lifespan/quality of life.  are you diabetic?  do you have to inject yourself with insulin every day and every time you eat a meal?  why isn't everybody with diabetes cured if it's as easy as switching their diet?  they must be so ignorant.

 

the great news is:  if you have celiac disease, you can 'turn off' your symptoms and the effects of an auto-immune attack by adhering strictly to a gluten free diet/lifestyle.  welcome to the forum.  i hope you learn many things

[notme]

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Colleen

lolz, colleen!  good point - red devil turpentine IS good for that! 

[GFinDC]

Hi Ship,

 

Welcome to the forum!

 

I hope I can help you with some of your questions.

 

The body makes a variety of different type antibodies cells.  IgE antibodies are  the cause of allergic reactions, and tend to affect certain ares of the body, like eyes, breathing, skin.

 

Celiac disease is  a result of IgG and IgA type antibodies, which are targeting different areas of the body often.

 

There is some research being done in Australia (Dr. Bob Anderson) to try and find a  way to turn off the celiac antibodies.  But  even if that turns out to work, it will be years before it is commercially available.

 

The biopsy samples from your gut will probably be examined and compared to the Marsh scale, which rates the amount of damage to the villi lining the gut.

 

The villi damage is rarely permanent, and usually is repairable by the body over time.

 

Once the immune system learns to fight a disease, it is pretty darn good at remembering how to do that.  That's why immunizations shots work, the body learns to fight the germs and keeps fighting them whenever they show up.  Otherwise we would all get measles over and over throughout our lives.

 

Helpful threads:

 

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

 

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

NCGI info

 

Non-celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

 

Innate immune response in AI diseases

https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

[NoGlutenCooties]

i am really interested in how people can cure diabetes themselves by switching their diet.  my son is type 1 and i am constantly worried about his lifespan/quality of life.  are you diabetic?  do you have to inject yourself with insulin every day and every time you eat a meal?  why isn't everybody with diabetes cured if it's as easy as switching their diet?  they must be so ignorant.

 

I'm no expert on diabetes, but there are significant differences between Type 1 and Type 2 diabetes, and varying degrees of the disease.  My mother was diagnosed with Type 2 diabetes when she was in her early-to-mid 60s.  She was not bad enough to need insulin yet.  She really went after it with diet - testing her blood sugar religiously to figure out exactly how much of what she could eat without it raising her blood sugar.  She has since been retested and has tested negative all together.  She still carefully watches her diet so that she doesn't relapse back into diabetes, but she no longer has the disease.

[notme]

type 1 = no cure.  just insulin. 

[NoGlutenCooties]

type 1 = no cure.  just insulin. 

 

Correct.  However, your question was "why isn't everybody with diabetes cured if it's as easy as switching their diet?" - it is because there are different types of diabetes, and varying degrees of Type 2 diabetes.  If you have Type 2 and catch it early enough, it can in fact be cured with diet and excersize.

[notme]

Correct.  However, your question was "why isn't everybody with diabetes cured if it's as easy as switching their diet?" - it is because there are different types of diabetes, and varying degrees of Type 2 diabetes.  If you have Type 2 and catch it early enough, it can in fact be cured with diet and excersize.

so, we agree.  type 1 diabetes can not be cured with a diet switch.  i agree that type 2 is different especially for the obese, but a diet can't make your pancreas start working if it's shot.  and, if by cured, you mean that her glucose level is down to normal range, well, i guess my kid cures himself every time he gives himself a shot.  is that what you're saying?

[ItchyAbby]

So, this guy is a total spazz but actually does a pretty good job of explaining the autoimmune response to gluten (or, gliadin, as it were)

 

But, here's the thing: if eating gluten makes you feel bad and avoiding it makes you feel better, I think it best to avoid it, whether or not you fully understand the difference between allergy or autoimmunity.

[shadowicewolf]

So, this guy is a total spazz but actually does a pretty good job of explaining the autoimmune response to gluten (or, gliadin, as it were)

 

But, here's the thing: if eating gluten makes you feel bad and avoiding it makes you feel better, I think it best to avoid it, whether or not you fully understand the difference between allergy or autoimmunity.

About that video, i want to know where he got the info from.

[frieze]

I'm no expert on diabetes, but there are significant differences between Type 1 and Type 2 diabetes, and varying degrees of the disease.  My mother was diagnosed with Type 2 diabetes when she was in her early-to-mid 60s.  She was not bad enough to need insulin yet.  She really went after it with diet - testing her blood sugar religiously to figure out exactly how much of what she could eat without it raising her blood sugar.  She has since been retested and has tested negative all together.  She still carefully watches her diet so that she doesn't relapse back into diabetes, but she no longer has the disease.

Yes, she does.  She still has "disordered glucose metabolism" or what ever phrase you want to use.  She controls, not cures, the condition with diet.  Just like a gluten free celiac controls, not cures, celiac disease.  Cure for Type one diabetes may be found in stem cell research....

[NoGlutenCooties]

so, we agree.  type 1 diabetes can not be cured with a diet switch.  i agree that type 2 is different especially for the obese, but a diet can't make your pancreas start working if it's shot.  and, if by cured, you mean that her glucose level is down to normal range, well, i guess my kid cures himself every time he gives himself a shot.  is that what you're saying?

 

Yes, I think we agree. You cannot cure Type 1 diabetes.  You can control it, but you can't cure it. 

 

But as far as being "cured" every time you take a shot of insulin, no, that's not at all what I'm saying.  But you can cure Type 2 diabetes, if you catch it early enough.  And I don't just mean getting your glucose levels temporarily down to normal... I mean getting to the point where you can take an actual glucose-tolerance test and pass it without your glucose levels going high.  I mean healing your pancreas to the point where it is again functioning normally. 

 

And I know a lot of people associate diabetes with obesity, but you can have diabetes and not be overweight.  My mother is a prime example - if anything, she's way too skinny.

[frieze]

Yes, I think we agree. You cannot cure Type 1 diabetes.  You can control it, but you can't cure it. 

 

But as far as being "cured" every time you take a shot of insulin, no, that's not at all what I'm saying.  But you can cure Type 2 diabetes, if you catch it early enough.  And I don't just mean getting your glucose levels temporarily down to normal... I mean getting to the point where you can take an actual glucose-tolerance test and pass it without your glucose levels going high.  I mean healing your pancreas to the point where it is again functioning normally. 

 

And I know a lot of people associate diabetes with obesity, but you can have diabetes and not be overweight.  My mother is a prime example - if anything, she's way too skinny.

your mom may have what is called LADA....

[NoGlutenCooties]

your mom may have what is called LADA....

 

Very unlikely.  LADA folks require insulin injections at some point after diagnosis.  My mother reversed the Type 2 diabetes all together and never took insulin, and now no longer gets the blood sugar spikes at all.