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Do I Understand This Correctly ?


Mamato2boys

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Mamato2boys Contributor

I'm still trying to wrap my little brain around this concept, lol. I understand that celiac disease is an autoimmune disorder. Does "only" having gluten sensitivity (as per Enterolab testing) fall under the autoimmune disorder list ? I'm under the impression that someone who is GS that continues to eat gluten could do enough damage that they could then get celiac disease (defined as villous atrophy, etc.), is that correct ? So in other words, being gluten sensitive is kind of a spectrum of celiac disease.

Ultimately it doesn't really matter I suppose. One way or the other DH, the boys and I will have to avoid gluten for the rest of our lives, and I'm ok with that. We all feel so much better without it that I can't imagine going back, but I'm just curious how this works.

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CarlaB Enthusiast

With Enterolab you cannot tell whether it's celiac or gluten sensitivity. Gluten intolerance can also be autoimmune. Gluten intolerance may be a stage before celiac or it may not. I don't know that any studies have been done on this, but common sense tells us that someone doesn't wake up one morning with full-blown celiac. Though I do think some people might not ever become celiac, yet do other damage to their body with the autoimmune reaction.

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ArtGirl Enthusiast
With Enterolab you cannot tell whether it's celiac or gluten sensitivity. Gluten intolerance can also be autoimmune. Gluten intolerance may be a stage before celiac or it may not. I don't know that any studies have been done on this, but common sense tells us that someone doesn't wake up one morning with full-blown celiac. Though I do think some people might not ever become celiac, yet do other damage to their body with the autoimmune reaction.

This celiac vs gluten intolerance has been a puzzle for me, also. I've not had a biopsy but did show two gluten intolerant genes via Enterolab. But, I also did not show any malabsorbtion. I've been reacting to gluten for at least 40 years and have not developed either full-blown Celiac or any other autoimmune diseases. I guess I can consider myself very lucky because if there had been damage being done all these years I'm sure I'd be a gonner by now.

I'm sure that others can relate a different story. Perhaps the problem is that our current terms and definitions are not sufficient but we don't yet have the knowledge to make them more accurate.

What's the difference between a sensitivity and an intolerance???? Is the first not an autoimmune reaction and the other is? I have other food sensitivities, but the definition of "sensitivity" in this case has to do with the degree of the allergy to the foods - sensitivity being a lesser reaction than allergy.

It is all very confusing!

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CarlaB Enthusiast
What's the difference between a sensitivity and an intolerance???? Is the first not an autoimmune reaction and the other is?

I don't know ... I use the two interchangeably.

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Mamato2boys Contributor
With Enterolab you cannot tell whether it's celiac or gluten sensitivity. Gluten intolerance can also be autoimmune. Gluten intolerance may be a stage before celiac or it may not. I don't know that any studies have been done on this, but common sense tells us that someone doesn't wake up one morning with full-blown celiac. Though I do think some people might not ever become celiac, yet do other damage to their body with the autoimmune reaction.

Well, according to EnteroLab my son has genes for sensitivity, but no genes for celiac disease. I guess that's where I'm confused ? I took that to mean that while he shows a gene for gluten sensitivity and does have some malabsorption, he *probably* doesn't have celiac disease and we could avoid him getting it if we change his diet (which we have).

I guess maybe it's not clear to anybody how it works - including doctors. That seems to be the case, anyway.

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Guest cassidy
Well, according to EnteroLab my son has genes for sensitivity, but no genes for celiac disease. I guess that's where I'm confused ? I took that to mean that while he shows a gene for gluten sensitivity and does have some malabsorption, he *probably* doesn't have celiac disease and we could avoid him getting it if we change his diet (which we have).

I guess maybe it's not clear to anybody how it works - including doctors. That seems to be the case, anyway.

I'm a bit confused by all of this as well. You say that you think you may be able to avoid him becoming celiac since he isn't testing positive for it now and he is going on a gluten-free diet now.

My question is, is being gluten intolerant or sensitive to gluten any "better" than having celiac? My blood test was negative so I'm guessing that I don't have celiac, however I react to crumbs of gluten and I have been sick for the last 28 years. So, just based on my severe symptoms both before going on the diet and now when I'm glutened, I don't see how gluten intolerance is any less severe than celiac. Gluten intolerance may or may not lead to intestinal damage (I'm still confused on that) but it certainly can do things to other parts of the body. I had 4 surgeries that I now think were all due to complications of my gluten problem and could have been avoided if I had been treated earlier.

Hopefully someone will do some great research and clear all this up. In the meantime, we are all better off on the diet and I am very, very thankful that all of us have figured out what is wrong, even if I'm not sure what to call it :)

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Kibbie Contributor

Here is how I have started explaining what Celiac Disease is to people: (Summed up from Gluten free Living for Dummies)

When anyone (even people without Celiac disease) eats gluten containing products it causes our bodies to produce an excess amount of zonulin. (A protein found in our small intestine that basically works as a doorman allowing the nutrients of our food to pass into the bloodstream) You heard me right.. EVERY person on earth produces too much zonulin when they eat gluten! Having too much zonulin opens so many ..doors.. that toxins (gluten fragments) get into our blood stream that normally wouldn..t have been allowed in.

This is where a Celiac's body acts differently than ours does. Her body sees these gluten fragments as invaders and it launches and attack against them.. the problem is their body also attacks itself (the autoimmune part of this Celiac) they produces antibodies ant react against normal, healthy tissue rather than the bad stuff.

Their body attacks the villi (the little finger things on our intestines that help absorb nutrients) on the lining of the small intestine causing them to flatten (really they are chopped down like a tree). If they have been chopped they are no longer able to absorb nutrients from her food. The damage always happens at the top of the intestine first.

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ArtGirl Enthusiast
My question is, is being gluten intolerant or sensitive to gluten any "better" than having celiac? My blood test was negative so I'm guessing that I don't have celiac, however I react to crumbs of gluten and I have been sick for the last 28 years. So, just based on my severe symptoms both before going on the diet and now when I'm glutened, I don't see how gluten intolerance is any less severe than celiac. Gluten intolerance may or may not lead to intestinal damage (I'm still confused on that) but it certainly can do things to other parts of the body. I had 4 surgeries that I now think were all due to complications of my gluten problem and could have been avoided if I had been treated earlier.

ditto

celiac - sensitivity - intolerant .......... probably all related with celiac/DH being the worst as far as intestinal damage and neurological issues. But intolerance can sure wreck havoc on the rest of the body.

Certainly one should NOT conclude that if one is not officially diagnosed celiac and is only sensitive/intolerant that one need only eat gluten "light". There are plenty of folks on this forum who get just as sick being intolerant (intolerant genes) as those with the celiac genes. But, there are also those who do not.

As has been said, there needs to be more research and case studies. Although, I must say, this forum is a wealth of case studies, although not "scientific".

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Mamato2boys Contributor
ditto

celiac - sensitivity - intolerant .......... probably all related with celiac/DH being the worst as far as intestinal damage and neurological issues. But intolerance can sure wreck havoc on the rest of the body.

Certainly one should NOT conclude that if one is not officially diagnosed celiac and is only sensitive/intolerant that one need only eat gluten "light". There are plenty of folks on this forum who get just as sick being intolerant (intolerant genes) as those with the celiac genes. But, there are also those who do not.

As has been said, there needs to be more research and case studies. Although, I must say, this forum is a wealth of case studies, although not "scientific".

Yup, that's how I was looking at it - that they're all related, but celiac being the "worst" because it implies intestinal damage, etc.

I definitely agree that "only" being sensitive does NOT mean you can go gluten light. I know that all four of us most definitely react to glutens even though we're "only" GS.

I was just curious because Enterolab kind of made it sound like (at least to me), that's how it worked - that it was a spectrum of sorts. But then I was confused about not having the celiac gene, because if it's a spectrum what does it matter if you carry the gene or not ? If you're GS and continue eating glutens on any level, then you're doing damage somewhere. Maybe that's the key - that celiac disease is specific to intestinal damage (right ?), and that being GS means damage elsewhere without villous atrophy. ???

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Jestgar Rising Star

How 'bout if we just call this ALL Celiac, with intestinal damage just being one of the possible symptoms. I don't see that destroying my intestine is any more, or any less, important than destroying my brain or destroying my pancreas. I would like to keep all of them intact, thank you very much.

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chrissy Collaborator

people with celiac disease have an increased level of zonulin----above the normal population and those celiacs that are gluten free. zonulin is like the gatekeeper of our intestines and in celiacs, the gates get stuck open.

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Mamato2boys Contributor
How 'bout if we just call this ALL Celiac, with intestinal damage just being one of the possible symptoms. I don't see that destroying my intestine is any more, or any less, important than destroying my brain or destroying my pancreas. I would like to keep all of them intact, thank you very much.

:lol:

I found this from Dr. Fine's website:

What is the difference between celiac sprue and gluten sensitivity?

Gluten sensitivity implies that a person's immune system is intolerant of gluten in the diet and is forming antibodies or displaying some other evidence of an inflammatory reaction. When these reactions cause small intestinal damage visible on a biopsy, the syndrome has been called celiac sprue, celiac disease, or gluten sensitive enteropathy. (Nontropical sprue and idiopathic steatorrhea are other terms that have been used for this disorder in the past.) The clinical definition of celiac sprue also usually requires that there is clinical and/or pathologic improvement following a gluten-free diet.

In the past, celiac sprue could only be diagnosed after somebody developed certain symptoms like diarrhea, weight loss, or growth failure in children. A biopsy would be performed and if abnormal and typical of celiac sprue, and if a gluten free diet brought resolution of diarrhea, weight gain, or growth, only then would a diagnosis of celiac sprue be made. However, recent advances in diagnostic screening tests and application of these tests to people at heightened risk or to general populations have allowed detection of celiac sprue, sometimes even before damage to villi has occurred. This latter scenario is often called gluten sensitivity.

Can I have gluten sensitivity if small intestinal biopsies are normal or only minimally abnormal?

Although by definition a normal small bowel biopsy rules out celiac sprue, it does not rule out gluten sensitivity. Although asymptomatic people with gluten sensitivity may have normal or near-normal biopsies, so too may people with symptomatic gluten sensitivity. This has been reported in the medical literature (called "Gluten Sensitivity with minimal Enteropathy" or "Gluten-Sensitive Diarrhea without Celiac Disease". Furthermore, even though such people's intestine's appear normal under the microscope, up to one half already have nutrient malabsorption, a major contributor to osteoporosis and malnutrition, attesting to the fact that microscopic analysis of intestinal biopsies is an insensitive way of assessing function and immunologic food sensitivity. However, because there is still a virtually universal reliance on small bowel biopsies to diagnose gluten intolerance, most asymptomatic or symptomatic gluten sensitive people (based on screening tests) will not be diagnosed corectly or be instructed to follow a gluten-free diet even though symptoms may resolve completely.

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Jestgar Rising Star

yes, but it's all semantics. Celiac Sprue was originally diagnosed based on it's similarity to tropical Sprue. I'm saying they labeled it incorrectly, based on this one symptom.

Cystic fibrosis was originally thought to be a lung disease, but it's now known that it affects all aspects of the body.

Since what we now define as "sensitivity" can have all of the same additional manifestations as "Celiac" except the intestinal damage, maybe they just picked the wrong organ to use to define the disease.

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lonewolf Collaborator
yes, but it's all semantics. Celiac Sprue was originally diagnosed based on it's similarity to tropical Sprue. I'm saying they labeled it incorrectly, based on this one symptom.

Cystic fibrosis was originally thought to be a lung disease, but it's now known that it affects all aspects of the body.

Since what we now define as "sensitivity" can have all of the same additional manifestations as "Celiac" except the intestinal damage, maybe they just picked the wrong organ to use to define the disease.

Good point! I wonder too if people with DQ2 and DQ8 are more succeptible to intestinal damage, hence showing positive on the biopsies, while people with other gene patterns have different symptoms but still react to gluten just as badly, but in different areas of the body. It seems that people here could be put into categories like:

A) Developing biopsy diagnosed Celiac as an infant or young child

B ) Developing biopsy diagnosed Celiac as an adult

C) Having all the symtoms of Celiac since childhood, but still testing negative on bloodwork/biopsy

D) Developing Celiac symptoms as an adult, but no diagnosis because of negative tests

E) Having no symptoms whatsoever, but diagnosed by a "fluke "

F) Having symptoms that are completely neurological or non-GI, but still definitely gluten related

Everyone in all of these "categories" still has gluten intolerance/Celiac/gluten sensitivity, but only the ones diagnosed by biopsy have the title of "Celiac".

Edit: I have no idea why the smiley face is here instead of the letter "B" that I typed. And thanks to Michi8 - now it's gone!

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sunshinen Apprentice

I guess my biggest distinction is that there are other food sensitivities that come and go, that are caused by overexposure, environmental issues, stress, or part of some other issue with the body. I would say I am sensitive to milk, but that is getting much better as my intestines/stomach heal, and I look at it as something where as long as I can tolerate how it makes me feel, then it's okay to consume. I am hopeful that it will prove temporary, rather than a permanent intolerance that will always cause an inflammatory immune response.

With celiac it is autoimmune and lifelong, and every speck must be avoided because of the unseen damage this autoimmune reaction could be causing (whether to the intestine, the skin, the nerves, the brain, or elsewhere) and the secondary diseases and conditions it can lead to. (Though, it seems they have shown that the inflammation from any food sensitivity/intolerance can still lead to secondary conditions because of the inflammation in the body).

Another problem is they don't seem to have much worked out on how you know whether it is truly "just" a sensitivity to gluten or whether it is actually celiac that just hasn't caused that much damage yet. I read somewhere that sensitivity is environmentally caused, while celiac or intolerance is genetically predisposed and triggered. But even if you do not have the "celiac" gene, how do you know you just don't have a gene they haven't identified yet?

For me it comes down to knowing being gluten free is going to be lifelong, verses having hope that (like my aunt) it may prove to be temporary. Which is not to say that her temporary sensitivity was any less severe. She was hospitalized before being put on an elimination diet. After healing, she now is okay on a rotation diet. I have never been as sick as she was, but I don't have the hope that my body will someday not react to gluten by attacking itself.

So I think there are definable differences, but testing for them is another matter. For most of us, it all means the same thing: eat gluten, feel like ****; stop eating gluten, feel much better!

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Guest cassidy
:lol:

I found this from Dr. Fine's website:

In the past, celiac sprue could only be diagnosed after somebody developed certain symptoms like diarrhea, weight loss, or growth failure in children. A biopsy would be performed and if abnormal and typical of celiac sprue, and if a gluten free diet brought resolution of diarrhea, weight gain, or growth, only then would a diagnosis of celiac sprue be made. However, recent advances in diagnostic screening tests and application of these tests to people at heightened risk or to general populations have allowed detection of celiac sprue, sometimes even before damage to villi has occurred. This latter scenario is often called gluten sensitivity.

If I understand this correctly, it is saying that if you catch it before you have damage then you have gluten sensitivity, however if that person continued to eat gluten then they would develop celiac.

My question still stands - I was sick for 28 years - I'm talking from birth. How come I didn't develop celiac during that time? My mom told me the other day how I had D after every time she breastfed me. I had reflux from birth and it only went away after going gluten-free - it is clearly due to gluten. So, how can some babies/adults who are only sick for a year or two before diagnosis develop celiac and me who was sick for 28 years not develop it? If gluten sensitivity leads to celiac if people don't go on the diet then I would think that I would have had celiac a long time ago.

And, like someone else said, why does it matter if you have the celiac genes or gluten intolerant genes if anyone could develop celiac if they didn't go gluten-free after becoming gluten intolerant?

None of this really matters, I'm just curious. I wonder if 10 years from now we will know so much more that what we think now will seem silly. Remember, they thought earth was flat at one point.

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tarnalberry Community Regular

Because the genes need to be triggered for the gene expression to start occuring? Happens in a lot of different things. (I don't think the full reason is understood, but that's my understanding.)

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ArtGirl Enthusiast
If I understand this correctly, it is saying that if you catch it before you have damage then you have gluten sensitivity, however if that person continued to eat gluten then they would develop celiac.

Let me rephrase your statement a little.

If you catch it before you have damage then you have gluten sensitivity, however if that person continued to eat gluten then they would be DIAGNOSED WITH celiac disease.

The combination of genes must play a major roll in determining if one's sensitivity to gluten causes a significant escalation of the autoimmune response and then goes on to cause damage, either GI or neurological. I have had GI issues for probably 40 years and have not had significant damage that I'm aware of*, GI or neuological - although I do show some indications of one or two very mild neurological symptoms.

(* I base this conclusion on the fact that the test from Enterolab did not show any malabsorbtion and my own conclusion that the villi must not be damaged from the gluten - although I will admit there has probably been major inflamation.)

This has been an interesting thread. I've been curious about the sensitivity vs celiac distinction and everyone's input has been most helpful.

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sunshinen Apprentice

I think it is misleading to state that gluten sensitivity is celiac disease that simply has not progressed to that level of damage. Many people with gluten sensitivity can continue eating gluten and their intestines will never be damaged. They will never develop that autoimmune response, regardless of how bad their immune response is. In fact, if you do not have the gene for celiac disease, it is "extremely unlikely" that you will ever develop this autoimmune response where you develop antibodies that attack your own healthy tissues.

While it is certainly valid to try to diagnose celiac before it succeeds in destroying the intestines (and thus why I believe the definition of the disease should not be related to the extent of damage, but on the process that causes the damage), it seems unkind and simply wrong to scare everyone who shows some sensitivity to gluten into thinking they will face this autoimmune response, that they need to take the same super precautions that those with the autoimmune response have to take. This does not mean those with gluten sensitivity (without the celiac gene) experience any less pain and suffering than celiacs. Many experience worse reactions than many official celiacs and many have to be just as cautious for their health and sanity. But there are many gluten sensitive people who can handle some level of gluten.

This immune/autoimmune distinction is why there is a noted difference between genes that predispose to celiac and genes that predispose to gluten intolerance. Those without the celiac gene still need to be careful about elevated inflammation in the body. This alone can cause additional problems and misery. But there is a definitive difference, and one that should be a relief to some who know they don't have the gene for celiac. On the flip side, if you have the celiac gene, you're "sensitive" to gluten, and just don't have that positive biopsi, I'd say it's best to consider yourself celiac before the damage does reach that level.

That said, I'm all for inclusion. As far as I'm concerned, we're all one big happy family. I just don't want people to suffer the hardships of a diet that may be more restrictive than they really need to be.

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jaten Enthusiast
I think it is misleading to state that gluten sensitivity is celiac disease that simply has not progressed to that level of damage. Many people with gluten sensitivity can continue eating gluten and their intestines will never be damaged. They will never develop that autoimmune response, regardless of how bad their immune response is. In fact, if you do not have the gene for celiac disease, it is "extremely unlikely" that you will ever develop this autoimmune response where you develop antibodies that attack your own healthy tissues.

While it is certainly valid to try to diagnose celiac before it succeeds in destroying the intestines (and thus why I believe the definition of the disease should not be related to the extent of damage, but on the process that causes the damage), it seems unkind and simply wrong to scare everyone who shows some sensitivity to gluten into thinking they will face this autoimmune response, that they need to take the same super precautions that those with the autoimmune response have to take. This does not mean those with gluten sensitivity (without the celiac gene) experience any less pain and suffering than celiacs. Many experience worse reactions than many official celiacs and many have to be just as cautious for their health and sanity. But there are many gluten sensitive people who can handle some level of gluten.

This immune/autoimmune distinction is why there is a noted difference between genes that predispose to celiac and genes that predispose to gluten intolerance. Those without the celiac gene still need to be careful about elevated inflammation in the body. This alone can cause additional problems and misery. But there is a definitive difference, and one that should be a relief to some who know they don't have the gene for celiac. On the flip side, if you have the celiac gene, you're "sensitive" to gluten, and just don't have that positive biopsi, I'd say it's best to consider yourself celiac before the damage does reach that level.

That said, I'm all for inclusion. As far as I'm concerned, we're all one big happy family. I just don't want people to suffer the hardships of a diet that may be more restrictive than they really need to be.

Ditto

All the research I've read/heard is explained well in this post.

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Marlene Contributor

This is something that I have been wondering about too. My Enterolab results stated that I have 2 gluten intolerance genes -- not Celiac. However, my TgG levels were elevated, indicating tissue damage. Not only that, a number of years ago the outer third of my eyebrows became very thin. I asked a Naturopathic doctor about that and he said it was evidence of an autoimmune disorder and figured it was thyroid. I had my thyroid tested and it was fine. I have been gluten free for 5 months now and my eyebrows are growing back in. I am thinking there must have been some kind of autoimmune reaction going on in my body even though I don't have Celiac genes.

Marlene

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Jestgar Rising Star

So what if "gluten sensitivity" is caused by something other than the DQ genotype? Only if you have the gluten sensitivity gene AND the DQ genotype do you develop intestinal damage and are labeled "Celiac". From reading all the different manifestations of this disease presented by people on this board, it seems more likely that intestinal enteropathy is only one aspect of the disease.

Consider Lupus: Most people have the rash, but not all. Some people have kidney damage, but not all. Some people have a high ANA titer, but not all. I've forgotten all of the different manifestations, but it's often described as a "chinese menu" type of diagnosis - If you have one from column A, and 2 from either column B or column C, or 3 from column D, then you have lupus. If you have anti SM antibodies, you have lupus - even if you have no other symptoms.

Now if you apply this to "Celiac", if you have villi damage, you have Celiac, but they are ignoring all the other columns and what ifs and combinations of things.

I think the knowledge of this disease is evolving and the definitions may change over time.

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ArtGirl Enthusiast
...a number of years ago the outer third of my eyebrows became very thin. I asked a Naturopathic doctor about that and he said it was evidence of an autoimmune disorder and figured it was thyroid. I had my thyroid tested and it was fine. I have been gluten free for 5 months now and my eyebrows are growing back in. I am thinking there must have been some kind of autoimmune reaction going on in my body even though I don't have Celiac genes.

Very interesting..... could have been my story. I've lost most the hair on my arms, along with the eyebrow thing, but hair has been growing back. I always attributed it to the kelp supplements (iodine) I've been taking for a few years now, but maybe it's because I reduced gluten intake and finally went gluten-free five months ago. Last month my thyroid test was in the normal range.

And I have the intolerant genes, not celiac.

Earlier on this thread I checked out a link that described Sjorgren's disease - an autoimmune reaction affecting secretions in the eyes and saliva glands - and have what appears to be a very mild case of this (irritated eyes and not enough tears)

So..... is there an autoimmune reaction even for the "intolerant" folks, but it just doesn't attack the villi?

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Guest cassidy
Let me rephrase your statement a little.

If you catch it before you have damage then you have gluten sensitivity, however if that person continued to eat gluten then they would be DIAGNOSED WITH celiac disease.

The combination of genes must play a major roll in determining if one's sensitivity to gluten causes a significant escalation of the autoimmune response and then goes on to cause damage, either GI or neurological. I have had GI issues for probably 40 years and have not had significant damage that I'm aware of*, GI or neuological - although I do show some indications of one or two very mild neurological symptoms.

It just all seems strange to me that the course and symptoms are so varied. Most diseases have a path that they follow and this one doesn't seem to. It is strange that you could have symptoms for 40 years and I could have symptoms for 28 years and we don't have celiac-type intestinal damage, however some babies have it after 2 years. Maybe that is the gene different. If you don't have the celiac gene then you will never have celiac-type damage even if you get horrible symptoms from eating it?

It also seems strange that different genes can produce similar symptoms when glutened however they are causing different types of effects in the body.

I'm still not convinced that enough research has been done on all of this. I'm a drug rep and I've studied several different disease states in depth. All the other diseases I know well may be complicated but most people react the same way and have the same problems if they don't get treatment.

It is also strange that some doctors see gluten intolerance and celiac as part of a continuum. That makes it sound like gluten intolerance is less severe than celiac, however, based on my past symptoms and other people's stories here, I don't think that is true. You can be just as sick with gluten intolerance and just as sensitive.

My primary care doctor told me that gluten doesn't cause any type of damage. If you eat it you will get sick for a few days but there is no other consequence, I don't think that is true either.

Do people develop lactose intolerance? Is that something that can just happen at any age?

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Mamato2boys Contributor
It is also strange that some doctors see gluten intolerance and celiac as part of a continuum. That makes it sound like gluten intolerance is less severe than celiac, however, based on my past symptoms and other people's stories here, I don't think that is true. You can be just as sick with gluten intolerance and just as sensitive.

My primary care doctor told me that gluten doesn't cause any type of damage. If you eat it you will get sick for a few days but there is no other consequence, I don't think that is true either.

Do people develop lactose intolerance? Is that something that can just happen at any age?

My oldest son, who's 3, carries 2 gluten sensitive genes and no celiac genes. By Enterolab's definition, that makes him more sensitive to gluten than someone who only carries one gene. He had "mild" malabsorption (he was just under 3 years old when I had him tested). So obviously gluten was affecting his intestines. Yet genetically he's not celiac. His symptoms were yellow, VERY foul-smelling, large-volume BMs. My symptoms were more subtle - hypoglycemia, bloating, weight gain, and for the past year - constipation. DH had bloating, chronic diarrhea, and severe acid reflux. By comparison, because my son is obviously much younger than us, his symptoms were actually much worse because of the early onset. I agree with you that rating it as a "continuum" kind of discounts how sick someone who is "only" sensitive can be.

And yes, people can develop lactose intolerance.

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    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
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