Anyone Else Tired Of "celiac" Vs "gluten Sensitive"?

[mhb]

I think we need to use "gluten syndrome" more often. I keep feeling like presentation of the issues makes celiac out to be worse than a mere "intolerance". Granted, there are known mortality issues with celiac in the form of cancers and malnutrition, but I would venture to guess that many don't test + for celiac while having serious side effects to gluten (beyond some "uncomfortable" gut disturbance). Do we *know* that gluten only causes infertility, neurological, autoimmune etc. problems when the intestinal biopsy is +? I think not. I for one cured my infertility going off gluten, and while I haven't tested for celiac, I have no malabsorption problems among the most oft cited culprits, and stellar blood work on all counts done. It just seems that the understandable emphasis on celiac, for which there is a test, is undermining an equally important issue that can't be tested + for, other than by diet (no $ for pharma there). Many who test neg couldn't be paid to go back on gluten for all the improvement they experience. So while the media is all about celiac these days, where's the voice/article articulating the other side of the coin and illuminating how lost we still are in seeking a full understanding of the gluten complex of disorders and how they relate? I'm having trouble wrapping my brain around everything I guess, and a gut feeling, if you will, that the public dialog is still missing major pieces.

Am I missing something?

[mushroom]

I think we need to use "gluten syndrome" more often. I keep feeling like presentation of the issues makes celiac out to be worse than a mere "intolerance". Granted, there are known mortality issues with celiac in the form of cancers and malnutrition, but I would venture to guess that many don't test + for celiac while having serious side effects to gluten (beyond some "uncomfortable" gut disturbance). Do we *know* that gluten only causes infertility, neurological, autoimmune etc. problems when the intestinal biopsy is +? I think not. I for one cured my infertility going off gluten, and while I haven't tested for celiac, I have no malabsorption problems among the most oft cited culprits, and stellar blood work on all counts done. It just seems that the understandable emphasis on celiac, for which there is a test, is undermining an equally important issue that can't be tested + for, other than by diet (no $ for pharma there). Many who test neg couldn't be paid to go back on gluten for all the improvement they experience. So while the media is all about celiac these days, where's the voice/article articulating the other side of the coin and illuminating how lost we still are in seeking a full understanding of the gluten complex of disorders and how they relate? I'm having trouble wrapping my brain around everything I guess, and a gut feeling, if you will, that the public dialog is still missing major pieces.

Am I missing something?

I feel that my awareness of being "intolerant" to gluten (no formal diagnosis) was like falling over a cliff into an abyss of the unknown. The only thing I know for sure is that I should not eat gluten. All the rest is guesswork. Is my arthritis and psoriasis caused by gluten? The rheumatologists don't seem to really believe so. Even though I'm supplementing with Vit. D am I still going to get osteoporosis? Will my villi heal? Were they really damaged in the first place? Will my inflammation ever go away? How many more things will I react to? Will most supplements hurt me instead of helping, like it seems right now? Will my skin continue to get thinner and thinner? What other damage has been done to my body that I don't know about? Will my scalp ever stop itching and flaking all over the house?

Sometimes it feels very lonely out here with the doctors you go to unable to answer any questions, your friends uncomprehending, your family skeptical, the media, as you say, barely brushing the surface of the problem.

You say that we have a "mere intolerance" to gluten. I would that that was all it was. Instead it becomes a life dominating issue that can cause depression, isolation, loneliness.

Sorry, I guess I'm feeling a bit down today

[AliB]

Absolutely I agree. Anyone who knows me is aware that I think that 'Celiac' and Gluten Intolerance are merely different aspects of the same thing, just as I also believe that Type 1 and type 2 Diabetes are different aspects of the same problem. Type 1's just get there a lot quicker!

I am convinced that much, if not most of our diseases are caused by bacteria and/or parasites. We carry over 500 strains of bacteria in and on our bodies and many of them can potentially become pathogenic.

Hippocrates wisely stated that 'all disease begins in the gut'. He recognised that if the gut flora is compromised the body becomes vulnerable to disease. Every day we ingest potentially harmful bacteria. Once in, it has to work its way through. Without the proper protection and support the body and the immune system cannot fight these invaders.

Many things can upset the balance. Stress, trauma, a high-carb, high-sugar diet and even some, if not most, prescription drugs, particularly antibiotics. Yes they may kill the bad guys, but they also destroy the good guys. Kill the soldiers and the city is undefended. Strong survivors and bacteria that is not touched by the anti-biotics then is given free-reign to fill up the vast uninhabited areas left vacant by the demise of the beneficial flora.

We then end up with raging Candida, which is evil, and other little beasties causing all sorts of damage anywhere in the body. We also then find that the anti-biotics no longer will kill the beasties because they have become resistant. Alexander Fleming advised against uncontrolled and unnecessary antibiotic prescription when he invented Penicillin but no one took any notice and we are now seeing the result of it. At last though there is a little move towards realising that we need to be 'pro-biotic' rather than 'anti'. Anyway, I deviate..........

There are a proportion of gluten sensitives who, whether diagnosed as Celiac or not, don't get better after dropping gluten. In fact, some get worse. They then start to develop reactions and intolerances to other foods.

I suspect that how we recover is as much to do with the combination of beasties as anything. Those who recover after dropping gluten may just be plagued with a type of rogue bacteria that only feeds from and whose activity is triggered by gluten and who become dormant after their food source is removed - I say dormant because they may kick off again if gluten is ingested, in those people. Many others though may have different combinations of bacteria that may die back initially when gluten is removed but then regroup, adapt to a different food source and then depending on what it is, gradually, or rapidly come back with a vengeance.

There are an awful lot of people out there who are very, very ill. They have gluten intolerance, but their issues go a lot deeper than just gluten. Some of us have great difficulty digesting food per se and many have issues with dairy, and other carbs like corn, soy, even rice, and all sorts of obscure and peculiar intolerances and reactions. Personally I am convinced I do not have Celiac although I was very gluten-intolerant for a long time. I cannot digest carbs hardly at all (and beasties love undigested carbs!) although I am recovering slowly on the Specific Carbohydrate Diet (SCD). I said I WAS gluten-intolerant, because after almost a year I no longer react to it although I am still avoiding it until my digestion has had a lot longer to heal.

Most, if not all, who have had a negative Celiac result have issues connected with malabsorption. Celiac testing is a bit of a lottery. Unlike diabetes there is no really accurate definitive test. Some may argue about that, but how can you have people who are all gluten intolerant yet some Celiac, some not?

I am sure that whether you have a positive blood test and a positive biopsy or not depends solely on where the rogue bacteria is operating, what kind of bacteria it is, and what toxins it produces, which will, of course, be different in every individual. The other crazy thing about the blood test is that even if you do show some level of antibodies, it is not counted as positive until it hits 10 or above. This supposedly is because some 'healthy' control subjects also show positive antibodies. But what if those 'healthy' subjects are gluten-intolerant yet do not display, at that point, any obvious symptoms?

Most people get gas and bloating. We assume it is 'normal. But what if the gas and bloating is actually indicative of bacterial activity and gluten/carb/dairy/etc. intolerance? What if the intolerance reaction is, not to the food itself, but to the toxins exuded by the bacteria that feeds on it???

Hmmm. As you can probably tell, I could go on about this for ever! Interestingly, there is a lot more research coming out now on this which suggests that it is not so much of 'just a theory' as some may think.

Three interesting articles on this subject that are on this site.

https://www.celiac.com/articles/21685/1/Mor...ease/Page1.html

https://www.celiac.com/articles/21607/1/Eur...dren/Page1.html

https://www.celiac.com/articles/21605/1/Do-...ease/Page1.html

Ali.

[Tim-n-VA]

... I think that 'Celiac' and Gluten Intolerance are merely different aspects of the same thing...

...how can you have people who are all gluten intolerant yet some Celiac, some not...

The simpliest explanation is that maybe there are different diseases/conditions that cause a reaction to gluten and Celiac is only one of these.

I don't see any real advantage of lumping diseases with some things the same, some things different into one group. A true wheat allergy is very different from Celiac despite having some things in common.

From the original post, I do think that it would be convenient to have a commonly used umbrella term for gluten problems. But having an umbrella terms doesn't mean that there aren't times when knowing the specifics of what body subsystem is reacting wouldn't be important.

[ravenwoodglass]

I also agree that celiac is a syndrome with different presentations for different people. By genes I would be defined as gluten sensitive by US doctors. By autoimmune impact I would be defined as celiac by those same doctors. I do not believe that the two are different disorders at all, sensitivity is just celiac that is found before the autoimmune damage can take hold .

[dilettantesteph]

The term gluten intolerance was invented to apply to people who have celiac symptoms, yet test negative for celiac. The medical community just can't admit that their tests might not catch all celiacs. What about all the people who test negative, continue to get tests and eventually test positive? All along they have similar symptoms which is why they push for more testing. Did they not have celiac before and then they develop celiac? I doubt it. The tests have limitations, as do all scientific and medical tests.

Then again there are people who feel better after going gluten free who never had serious symptoms. Some of them might be celiac and some might just feel better not eating gluten.

The celiacs that don't get better after adopting a gluten free diet are easily explained by the contamination of gluten free food with gluten. This was recently exposed by that Chicago Tribune article. It has been shown by many of us getting sick as we figure it out for ourselves.

[Mother of Jibril]

I also think a lot of the "healthy" people who have some celiac antibodies (but not enough for a positive test) don't really know what "healthy" is.

Before I was diagnosed with autoimmune hypothyroidism, I thought a lot of the symptoms were just "normal" for me... feeling cold all the time, depression, terribly dry skin, constipation, heavy periods... I had been like that for YEARS. The early symptoms of autoimmune disorders don't hit you over the head with a hammer!! If you don't pay attention you could easily think you're "perfectly healthy." Before my diagnosis I had no idea what to look for.

Plus... think of all the products that people buy and sell for the symptoms of autoimmune disorders without thinking about the underlying cause. I can't tell you how many old remedies for "dandruff" I have in my closet! Now that I think about it... I'm going to ditch that stuff ASAP.

[AliB]

What IS perfectly healthy?? There is no one who is perfect or perfectly healthy so how can we possibly have a benchmark by which to measure against??

Just because 'most' people have a certain issue, like gas and bloating, doesn't mean that it is normal. Why do beans cause gas? Because of bacterial activity as a reaction to the substances in the beans. Why do some people find that eating beans with other foods stops that action? Because substances in the other foods block the reaction.

Why do we sometimes have gas that smells of sulphur after eating eggs, yet not other times? It depends on what we have eaten them with and what bacteria we have eaten with them!

There are so many issues that we consider normal, just because 'everyone' gets them. You mentioned dandruff. Dandruff is linked with a Candida-like yeast that lives on the scalp. But why does it bother some people yet not others? What if those that are bothered suffer with gut dysbiosis and those that aren't, don't?

Why are some people affected by gluten yet not others? Why are some ONLY affected by gluten and nothing else? Why are some affected by much more than gluten? Why do people with other non-Celiac specified illnesses like Colitis, Crohn's, Diverticulitis, spastic colon, etc., also fare better on a gluten-free, low carb diet? What if they are all linked to gut dysbiosis.

There is far too much of this 'them and us' thing, not just with Celiac, but with other things, like Diabetes. It is very annoying and totally unnecessary. Rather than shoving all these diseases into little separate boxes and 'never the twain shall meet', Medical Science should be looking for the links between them.

People who have Celiac disease or gluten intolerance overlap in their symptoms. Those with any kind of gluten intolerance whether diagnosed Celiac or not, suffer with many different ailments - thyroid problems, Rheumatoid Arthritis, Digestive Issues, skin problems, mental issues, neurological problems - the list is endless. There are far more similarities than there ever are differences!

Why, oh why do people accept that bacterial activity is behind diseases like Lyme (Borrelia), Tuberculosis (mycobacteria), Pneumonia (Streptococcus), Meningitis, Chlamydia, Legionnaire's disease - there is even evidence that Klebsiella may well be linked to Ankylosing Spondylitis, and Proteus to Rheumatoid Arthritis, yet not accept the possibility that bacterial activity and gut dysbiosis may be behind gluten intolerance/Celiac. Not all bacteria causes life-threatening disease like Meningitis, but some of them can still make life very difficult and unpleasant for many of us.

Why do I get gas and bloating? Bacteria. Why does my stomach get sore? Bacteria. Why do I wake up every morning with a mouth like a sewage pit? Bacteria. It may not kill me directly, but it might make the right environment for something that will!

So maybe I have to persevere with a period of deprivation to get the upper hand - no sugar, no refined carbs, no chocolate, etc., but what is better, a period of deprivation, or a lifetime of sickness, or even worse, no lifetime at all? Some of us at least, with the gluten intolerance, do get some warning to start treating our body with respect - others get no warning at all!

Another 2 interesting links.

Open Original Shared Link

Open Original Shared Link

[mhb]

From the original post, I do think that it would be convenient to have a commonly used umbrella term for gluten problems. But having an umbrella terms doesn't mean that there aren't times when knowing the specifics of what body subsystem is reacting wouldn't be important.

This is exactly what I had getting at, but much more succinct! :-)

Some are conceiving celiac as the umbrella term and others conceive celiac as one of the sub-disorders. I'm in favor of the latter since the science behind celiac is so much more specific/established/accepted compared with other manifestations, while knowing that if one has one symptom any other can appear down the line. I think the medical community needs to find a way - if they are going to have celiac and non-celiac gluten intolerance - to impress upon the public mind they are both serious. Now that I think of it, they've been in the first camp, since the NIH Celiac Awareness Program covers the other disorders under celiac as an umbrella, and doesn't mention intolerance at all if my memory serves me. Maybe they do. Then I ask: if they keep saying "celiac can cause infertility", and gluten resolved my infertility, do I ever need to test for celiac if I'm off gluten or can I assume I'm celiac? No one in the science world knows, I don't think, if non-celiac gluten intolerance can cause infertility; rather, it (and similar disorders) are assumed related to celiac - not intolerance - if gluten solves it. Not by people in these forums, but by the literature "out there". Maybe I just need to keep reading to find what I'm looking for.

[MNBeth]

Mushroom - My sentiments exactly!!

[raisin]

"Not testing positive," doesn't make you not Celiac. It's a somewhat gray area, but doctors tend to classify you based on the severity of your gluten reactions, within 3 categories : direct gluten-reaction symptoms, gut damage, related health problems.

- - -

Generally, a Celiac will meet at least 1 of 3 criteria, with at least mild symptoms from the other categories;

Severe gut damage, or extreme reactions to gluten usually lasting for days triggered even by tiny cross-contamination, a significant number of seemingly gluten-caused 'separate' health issues.

Generally, Gluten Sensitive individuals will have milder effects from gluten;

Sometimes don't even have effects from all 3 types above, have an even spread of them in a mild form, or even seem to tolerate small amounts of gluten and related items (Ie.: legal gluten-free label limit amount, oats, dairy).

- - -

People keep saying "Gluten Intolerance," so let's get one thing strait : it isn't digestive, it's autoimmune. This, by it's very nature, means that gluten sensitive people can also have related health problems that resolve once going gluten free. That includes infertility.

[AliB]

People keep saying "Gluten Intolerance," so let's get one thing strait : it isn't digestive, it's autoimmune. This, by it's very nature, means that gluten sensitive people can also have related health problems that resolve once going gluten free. That includes infertility.

Ok, but why is it autoimmune? What causes the immune system to attack those different parts of the body?

Now, with new and recent research coming out, there is a school of thought beginning to form that the immune system may actually be attacking proteins within the body that are mimicked by similar proteins within rogue bacteria. The immune system in trying to destroy the bacteria, also attacks the proteins within the body that it perceives as part of the pathogen.

Maybe not all the autoimmune diseases exist within the gut but they are almost certainly sourced from within the gut. Gut dysbiosis from whatever cause can lead to inflammation by pathogenic bacteria in the gut. The inflammation and damage can lead to Leaky Gut, and the Leaky Gut can allow pathogenic bacteria through to the bloodstream where they can end up causing mayhem in any part of the body.

For some, gluten-free CAN resolve health problems by reducing the pathogenic bacteria into dormancy, but for others gluten is only a part of the picture - the type/s of pathogenic bacteria in their systems can create a far more complex problem to overcome. Would for some of us it be as easy as just removing gluten. Many 'gluten-intolerants' are actually a lot worse off than 'straight-forward' Celiacs whose problems are pretty much resolved by gluten-free. For many of us, gluten is just the tip of the iceberg.........

Both Celiac and NCGS have issues with gluten because it feeds the pathogenic bacteria and keeps the damage going. Removing it solves the problem for one but only partially helps the other. Why? The difference can only be in the type of pathogenic bacteria within the gut and the body.

This is a very little known and even less understood field of science. Whilst some bacteria can be seen and some are partially understood, there are hundreds, if not thousands of strains that cannot be grown in current testing facilities due to their makeup so at present little or nothing is known about these very real and active constituent parts of our bodies. There are more bacteria in and on the body than there are cells within it - that they do know. How they all work, what they do, how they relate to each other and how to deal with them is something we may never know.....

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Just Google 'bacteria autoimmune' and you will be surprised what comes up.......

[raisin]

Ok, but why is it autoimmune? What causes the immune system to attack those different parts of the body?

Now, with new and recent research coming out, there is a school of thought beginning to form that the immune system may actually be attacking proteins within the body that are mimicked by similar proteins within rogue bacteria. The immune system in trying to destroy the bacteria, also attacks the proteins within the body that it perceives as part of the pathogen.

That's fine for some obscure research, but it's irrelevant to this topic.. and it has an eerie resemblance to the (sometimes dangerous) theory that celiac is really just candida overgrowth.

[AliB]

Yes, perhaps, but then again, how often new 'schools of thought' are considered to be 'off the wall' until they are proved right.

Who is to say the research is obscure? There is a lot of research going on out there that is gradually 'seeping through' to indicate that this may not actually be 'just a theory'. A lot of research is useless and amounts to nothing in the end, but just sometimes amongst it all is a few little pearls of common sense.

I am not sure that this is particularly 'off topic' - it is about whether there should be an umbrella term for this issue. Whether you are Celiac or NCGS you are still gluten-intolerant. The gluten intolerance is there because the body cannot process it.

Why can't the body process it?

Sometimes the answer is so simple it is staring us in the face.

What comes first, the gluten intolerance or the Candida or other rogue bacteria? I know full well which way it worked in my case. Whilst 'the powers that be' have researched Helicobacter as a possible link, and discounted it because only about 30% of the 'Celiacs they tested had it, they have not considered the possibility of other bacteria or parasites being present.

'Celiac' is the only 'autoimmune' disease for which the only treatment is universally accepted as diet-related. Yet many others out there are successfully treating themselves, sometimes with 'alternative' professional help, and gaining recovery from many other autoimmune diseases - with diet.

There are people out there who have reversed their Celiac with diet, just as there are people out there who have reversed their Diabetes, and their Rheumatoid Arthritis and their MS, etc. We are told that Celiac can only be controlled by the permanent removal of gluten from the diet, yet some, even diagnosed Celiacs, after their gut has completely healed can then consume it with no further problems.

Me - I'm afraid I am just a born skeptic. I have to question everything. I am not prepared to take everything at face value. Medical Science changes its mind too often for me to be able to put much faith in what they say is right. Every five minutes there is a new bit of 'evidence'. You know the thing - coffee is good for you, no, coffee is bad for you. Ketchup is good, it has loads of lycopene - no, it's bad for you, it has loads of salt and sugar. Eggs are good for you - no, they are bad for you..........and so it goes on...........and on.

The Medical Profession has done little to help me - the understanding of my issues, and my recovery are totally down to my own efforts. The Medical Profession did nothing to help my lovely Mum figure out that she was 'Celiac' until it was too late and all her organs had fallen apart. What I have worked out is going on in my body is poles apart from the Medical Profession, which has absolutely no clue and, if they did anything at all, would only offer me drugs to control the symptoms!

Medical Science has stuck at the gluten issue for Celiacs because, as yet, they have not found any other rational explanation. Doesn't mean that there isn't one.

Time will tell.........one way or another.

Originally of course, Celiac itself was an umbrella term covering those who were unable to digest carbohydrates in general. They were treated by the removal of, not only gluten-containing foods, but also sugar and most grains and starches.

It was only after a panel of 6 Doctors had come to a conclusion that the problem was gluten after testing just 10 children and deeming the removal of gluten a success (in their case), that Celiac was then confined solely to those whose symptoms appeared to remedy after the removal of gluten from the diet.

It completely left floundering those who did not come under that category, and did not cater for those who still had major problems with other carbs. Even those diagnosed as Celiac on a gluten-free diet often still displayed gut damage and were inconsistent in their reactions to being 'glutened', or would be convinced that they were getting gluten from somewhere inadvertently, when in fact, it was a reaction to a different carbohydrate.

In one fell swoop, 90% of those who would have originally been classed as Celiac, were completely swept out of the back door.

Open Original Shared Link

[ravenwoodglass]

There are people out there who have reversed their Celiac with diet, just as there are people out there who have reversed their Diabetes, and their Rheumatoid Arthritis and their MS, etc. We are told that Celiac can only be controlled by the permanent removal of gluten from the diet, yet some, even diagnosed Celiacs, after their gut has completely healed can then consume it with no further problems.

I have a real problem with that statement. It is well known that for some people with celiac after they have healed on the gluten free diet they will 'seem' to tolerate gluten again. That is the reason for doctors thinking that celiac was a childhood disorder that could be outgrown. We now know that is not the case. It can take a while for the gut symptoms to show up again after we have healed but that does not mean we are 'cured'. There is no cure for celiac disease it is a genetic difference not a bacterial infection and the diet does not change the genes. It may take a few years to get to the point of damage where symptoms are more than an annoyance again and the autoimmune aspect means that the body may pick another organ to attack.

[ksymonds84]

I have a real problem with that statement. It is well known that for some people with celiac after they have healed on the gluten free diet they will 'seem' to tolerate gluten again. That is the reason for doctors thinking that celiac was a childhood disorder that could be outgrown. We now know that is not the case. It can take a while for the gut symptoms to show up again after we have healed but that does not mean we are 'cured'. There is no cure for celiac disease it is a genetic difference not a bacterial infection and the diet does not change the genes. It may take a few years to get to the point of damage where symptoms are more than an annoyance again and the autoimmune aspect means that the body may pick another organ to attack.

I do too. Celiac is a life time autoimmune illness thats only cure is the gluten free diet. Another board that I belong to posted the health benefits of Celiacs that follow the diet. They live just as long and sometimes longer than people who are not celiac. Those that cheat or stop doing the diet have a higher percentage of lymphomas ect and less than average life time. I will try to locate that article. I fear that a new diagnosed celiac will think that they could turn around celiac with diet and eat normal again. Maybe this is so with someone who is gluten sensitive because of another health issue but sadly this is not so for the Celiac.

[AliB]

The problem lies in the fact that although gluten-free removes gluten, it does not remove other foods that may be contributing to continued damage.

Granted, the damage may not be particularly obvious in some people but it may still be there - a biopsy may show that the villi have healed, but is highly unlikely to pick up evidence of Leaky Gut damage which is right down deep in the gut wall. Unless the gut has completely healed, gluten intake will eventually bring it all back.

The Leaky Gut damage may actually only be in a very small area of the gut wall so the chances of finding it within the gut would be like trying to find a needle in a haystack. Any permeability of the gut will allow the proteins to escape into the bloodstream and the reaction will continue.

When I said about the gut being completely healed, I meant completely healed, not just the surface area. Although Leaky Gut has gained a lot of credence there are still some die-hard members of the Medical Profession who consider it a load of rubbish. Hmm. Didn't they say the same about Chronic Fatigue......and Fibromyalgia? There are an awful lot of people out there who are sick with health issues the Medical Profession cannot diagnose or have no answer for - doesn't mean they are not sick!

Just because they can't diagnose something, doesn't mean it doesn't exist.

If say, for instance, Celiac actually was an inability of the body to process carbs in general, then replacing gluten-based carbs with the even higher carb gluten-free carbs may help some to heal from their initial inflammation and malabsorption, but may not address the real issue, the Leaky Gut - in fact it may even make it worse.

Over and over (and over and over) again - just on this forum alone, I see endless sufferers miserably complaining because they thought that having been diagnosed as Celiac and having dropped gluten, they were under the assumption they would get better. They can't understand what is going on. They are absolutely convinced they are not getting gluten, or they are convinced they are and can't figure out where from. Yet, so many times some end up coming back saying that they have finally realised the problem is corn, or soy, or some other, usually carbohydrate, food. They are so desparate for their pizza, or their bagels or their high-carb foods that they are just keeping the problem going but sans gluten.

Dr Haas had very good success with his 'Celiac Diet' or as it is now known, Specific Carbohydrate Diet because it removed all long-chain carbs from the diet and allowed the gut to completely heal properly.

Some think that just because they have removed the gluten and feel better, that is it - problem solved, but they are blissfully unaware that the hidden damage is still present and can take a lot more work to enable complete healing to take place.

Different things including some prescription drugs like antibiotics may be the trigger of the damage leading to gut dysbiosis but our high-carb Western (SAD/SED - or as I saw it written the other day S-UK) diet is the fomenter of the damage. Eventually it will get to the point where the gut begins to break down. Those who go gluten-free are just changing one set of high-carb foods with another - ok so they are no longer getting the reaction from gluten because it is no longer in the body, but the permeability that let it through is still there - that is why some cannot tolerate the tiniest amount - ever.

As far as genetics are concerned I think we have to have an open mind. There are a lot of 'Celiacs' out there who have the 'supposed' genetic markers, but who never get the disease, just as there are people who have the markers for Diabetes but who never become Diabetic. I am sure that genetics can point to genetic 'tendencies' or vulnerabilities, but that doesn't mean that an individual will develop a disease - all the factors have to be in place for that to happen.

A compromised gut can very much contribute factors to the weakness. Celiac is related to gut activity. Diabetes is related to gut activity. Crohn's is related to gut activity. What you eat can give you a migraine. What you eat can exacerbate joint pain. What you eat can give you diarrhea or constipation. There is no reason to assume that just because a health issue does not give you gut problems that it is still not related to what you eat. There is no reason to assume that any health issue not seemingly related to what you eat is not affected by what you eat.

You are what you eat. Sooner or later, unless we change the habits of a lifetime, what we eat can turn round and kick us up the butt...........

[mhb]

Glad others are grappling with my original post too, and it's not just me whose brain is a bit contorted by all this. First, I hope no one thought I agreed with the perspective when I referred to, "mere 'intolerance'" to gluten. I meant to have that open quote before "mere," indicating *others* em to view it that way.

About mention of celiacs going gluten free and being healed, while NCGS don't heal so easily, see the article on this site about celiacs more and more being seen with new and continuing issues after removing gluten. I have RSS so can't find it now (shouldn't be typing at all).

I'm sure bacteria play a crucial part in our health in all respects, including how we handle carbs of all kinds, and deserves more attention in the gluten community, but I've never known reality to boil down to one thing, in this case whether genes or bugs. How might celiac genes interact with how our body processes the byproducts of microorganisms? How are enzymes involved ...

[caek-is-a-lie]

The term gluten intolerance was invented to apply to people who have celiac symptoms, yet test negative for celiac. The medical community just can't admit that their tests might not catch all celiacs. What about all the people who test negative, continue to get tests and eventually test positive? All along they have similar symptoms which is why they push for more testing. Did they not have celiac before and then they develop celiac? I doubt it.

I completely agree. My family members have Celiac so I was tested 10 years ago. It came back "negative" only because I didn't pass a certain threshhold. But did I have any antibodies in my blood? Did they even do the test right to begin with?? Who knows? Now I'll probably never get tested because my doctors have no interest in doing it and I've already been gluten free for 3 weeks and have no intention of ever going back.

I keep thinking that if only I had gone gluten-free 10 years ago my Narcolepsy might not have gotten as bad as it did. I get the usual cramping, vomiting, and D when I eat gluten. But I can also correlate a lot of my Narcolepsy symptoms to eating toast, bread, and ramen noodles right around the time it first got really really bad. Eat some toast, fall down. Eat some spaghetti, fall asleep. Every time. But they didn't even tell me if I had any antibodies or no antibodies and never told me to get re-tested every 3 years. I'll never know if I'm "celiac" or just "gluten intolerant" and sometimes I resent being "just" "gluten intolerant" because I don't have numbers on paper to prove the celiac. But that doesn't mean I don't struggle just as much as anyone here to avoid every single little bread crumb I encounter. If I have to be that strict, do I really have undiagnosed celiac? Or not? Did celiac actually cause my Narcolepsy because the HLA types are similar? I guess I'll never know. All I can do is work hard to stay healthy and keep a positive attitude (no always easy to do!) And enjoy all the posts here on this forum that make me feel ever so much better about all of this. Thanks!

[caek-is-a-lie]

Generally, a Celiac will meet at least 1 of 3 criteria, with at least mild symptoms from the other categories;

Severe gut damage, or extreme reactions to gluten usually lasting for days triggered even by tiny cross-contamination, a significant number of seemingly gluten-caused 'separate' health issues.

This is me 100% except I don't know if I have gut damage because no one's looked. So at least 2/3 for me. Your description of "gluten intolerant" doesn't even come close to the severity of my symptoms so I don't see how I can keep using it...but where does that put me? This is all so confusing.

[veggienft]

This is me 100% except I don't know if I have gut damage because no one's looked. So at least 2/3 for me. Your description of "gluten intolerant" doesn't even come close to the severity of my symptoms so I don't see how I can keep using it...but where does that put me? This is all so confusing.

I agree that these excruciating life-threatening diseases are trivialized by the names celiac disease", "gluten intolerance" and "gluten sensitivity".

Here's how I understand the names. Somebody eats gluten. If the digestive immune system attacks the small intestine lining, that's celiac disease. The digestive immune system releases zonulin, a cytokine which makes the small intestine lining permeable, and passes the intestinal contents into the bloodstream .......including antigens .......viruses, bacteria, fungus, gluten and other protein antigens like casein.

These antigens can attack tissue from the bloodstream. These attacks fall under the category "gluten sensitivity".

These antigens can cause autoimmune reactions .......meaning the body attacks tissue compromised by an antigen. If the autoimmune attack is caused by gluten, that falls under the category "gluten intolerance". If the autoimmune attack is caused by another antigen, that falls again under the category "gluten sensitivity".

Celiac disease is the digestive autoimmune reaction to gluten, an attack against the small intestine lining. Gluten intolerance is any autoimmune reaction to gluten. Gluten sensitivity is any illness, caused directly by any antigen or an autoimmune reaction to any antigen, simply because a person ingests gluten.

Gluten sensitivity includes many diseases which have absolutely no connection to gluten except that eating gluten passes their causative antigens into the bloodstream.

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[JNBunnie1]

I think maybe you guys are downplaying the meaning of the word 'intolerant'. For example, when I get glutened, I become lactose intolerant for a while, usually a week or so. That doesn't sound so bad when you read it. 'Lactose intolerant.' Except that if I screw up, I will be SCREAMING in pain on my toilet for as long as it takes for the Imodium to kick in. Gentle word, big meaning.

Being gluten 'intolerant' does not make you or your problems less. Think of it this way: You are also 'rat poison intolerant'. You are also 'cyanide intolerant'. Same as 'gluten intolerant'. Don't let anybody tell you different, and that includes your doctor!

[caek-is-a-lie]

rotfl. You are totally right. I need to change my personal bias against "intolerant". I also find myself suddenly lactose intolerant in going 100% gluten-free, but hopefully that will subside. I loved "cyanide intolerant". That was great.

[mhb]

I think maybe you guys are downplaying the meaning of the word 'intolerant'.

Sorry you saw it this way, because I think we're all or mostly on the same page about this, but it illustrates my original post perfectly ... that just *using* the words intolerant and sensitive *sounds* less serious than *celiac* even in a community that for the most part I think knows better (other than maybe those new to it all?). I've had a concern that discussions about all this here and in the medical community are doing a disservice to community knowledge, maybe unintentionally, but with negative repercussions. I would go so far as to say that if one can't say for sure they have "celiac" they face potential and often real stigmatization of being a drama king or queen. All while failing to communicate to the public the larger gluten story historically and why it affects so many and that there's a LOT we don't understand yet, and that *anyone* who says gluten affects their health should be taken *very* seriously even if they are not dx celiac. Where is that message getting to the public? Should we all bombard Oprah to do a show?

[Fiddle-Faddle]

Celiac disease is the digestive autoimmune reaction to gluten, an attack against the small intestine lining. Gluten intolerance is any autoimmune reaction to gluten.

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Except what about DH???? DH sufferers often have NO villi damage, yet all doctors are in agreement that DH is a definitive diagnosis of celiac disease, with or without villi damage.

SO--we know that celiac disease is an autoimmune reaction that CAN bypass the intestines and attack the skin. So why is it such a stretch to think that it can also attack something else, like the thyroid, the brain, the pancreas, the joints....