Damage From Intolerance Only?

[Sk8ing]

Hello, I am new to this site, although I used to post on another celiac disease forum years ago. I have not been tested for celiac disease, and because of having to reintroduce gluten in order to be tested, will not ever be (for certain personal reasons). SO...my question is, if a person is merely gluten intolerant, as opposed to having celiac disease, does gluten still do damage to the intestines? When I first found I couldn't tolerate it, everything was going right through me, and it was a year before I could eat certain foods again - even rice. That would seem to indicate intestinal damage which was later repaired. Since I haven't been tested for celiac, on occasion I will eat something with gluten. Usually I get away with it without feeling sick, but not always. Then I start to worry that I might actually have celiac disease, and might be taking a health risk (cancer, etc.). I know it probably seems obvious - just abstain, right? Sometimes I feel silly doing that without the diagnosis, especially when my doctor told me it's just fine to eat gluten if you have celiac disease. (Okay, I know he was off there, but his comment keeps coming back to play on my mind.) The thing that confuses this issue for me is that I am allergic to almost every food you can name, so maybe I'm just allergic to gluten, too - but sometimes I could swear it isn't like my other allergies. That brings me to another question that I asked years ago, but didn't really get answered (maybe no one knows): Wouldn't having an allergy test for wheat solve the mystery? If all of us were tested for that, and it was negative, wouldn't that indicate celiac disease by default? (And my other question was whether gluten damages the intestines of someone who is merely "intolerant". I'm restating it because this paragraph is so wordy! I think it will get lost up there.) Thank you, anyone

[RiceGuy]

Firstly, gluten intolerance means your immune system reacts to it. That reaction is what damages the intestine over time - Celiac disease. From your description, it sounds like you had damage, which has healed at least to some degree.

So, plain and simple, you need to avoid all gluten in order to remain healthy. Even if you eat some once in awhile and don't notice anything, the damage is being done. The toxins which leak into the bloodstream as a result can cause other problems, either now or later. It's like getting a small dose of radiation every so often. Eventually it can cause cancer or something.

While it may be possible to be allergic to wheat and not be gluten intolerant, it doesn't seem to be the case for you. Having a year pass before being able to eat certain other foods isn't an allergy IMO.

I never got any tests done for gluten at all. The improvement after changing my diet is all I need to be sure. None of the doctors I went to ever came close to figuring out the problem, so I have nothing good to say about them. It's been nearly a year gluten-free for me, but much damage still remains.

[Sk8ing]

Wow. That's a great answer - thank you. As for your own recovery, hang in there. Not only did I feel so much better over time (so I'm presuming you will also), but I talked to someone who recovered fully - other than having celiac disease, that is - after about a year or so, and was so much worse off to begin with than I was. She could eat only bananas and one other thing (I forget what), and feebly got out of bed to pick her daughter up from school, then went back to bed. Her husband helped with everything else. When I met her she was healthy. So much of that takes a long time - long meaning at least a year. Thanks again for your help! I really feel, I guess justified, now in making more of a stand. I think sometimes I infer that some people think, "Well, you don't look sick."

[darlindeb25]

Sk8ing--listen to yourself and realize, even you know you can never have gluten. You say you felt so much better over time. I have never had a diagnosis--my sister and father do--what are my odds? The doctor I am seeing now told me that even without a diagnosis, he is 99% sure I am a celiac. He is going to try and help me with my other issues that stemmed from celiacs, my neuropathy. I go for more bloodwork tomorrow. Gluten insensitive, gluten intolerant, or celiac disease all have the same solution--WE MUST ALWAYS BE GLUTEN FREE TO BE HEALTHY. Deb

[KaitiUSA]

Listen to your body and stay gluten free. Even if you have a problem with gluten that is not celiac disease it can still cause your body harm.

[mommida]

I recently found this on-line and I think it may help answer some questions you may have.

www.enabling.org/ia/celiac/cdf-fas.html

It appears to be notes from a confrence taken by Dr. Alessio Fasano.

Laura

[Sk8ing]

Thank you, Laura, for this excellent article! I have copied it, and will send to some of my family members (more to follow on that). Thanks, Kaiti, for your encouragement, too. Those times when I've eaten gluten have become less frequent over time, since I stay healthier when I don't. As I'm responding here, I'm realizing that I've been looking to give myself permission to truly abstain. I hope that makes sense. It actually makes me feel better to know one way or the other which "side" I fit into. For a long time, I told everyone I could have no gluten at all; but then when I felt recovered, it seemed like I was making too much of my health. My family has been wonderful and supportive, however. (But I do have a friend who kind of acts like I'm a hypochondriac, and that doesn't help!)

My granddaughter couldn't eat the smallest amount of gluten from age one to three, after which they had her tested. Lo and behold, it came back negative, and suddenly she was able to eat everything. I tried to educate my daughter on celiac disease, but it's hard for people to understand all this, I think. The fact that they also told her that their daughter had no allergies to wheat or anything else, to me, pointed to celiac disease anyway - something made her terribly reactive to gluten for the better part of those two years. I think she didn't have enough gluten prior to the test for anything to show up. So anyway, I'm thinking that it really is in our family, regardless of what the test and doctors have said. A naturopath told me I had celiac disease when I was at my worst, but that after a year or so I could try to reintroduce wheat into my diet, and then, as I mentioned in my previous post, my regular doctor said celiacs could go ahead and eat gluten, too. Such confusion here!! I don't understand why American doctors are so behind on this.

Thanks again for the help you've given me here.

[Felidae]

I know what you mean SK8ing about feeling silly not eating gluten when you do not have a celiac diagnosis. I feel that way a lot. But then I think about how sick I was before going gluten-free and think maybe I shouldn't feel silly.

[Sk8ing]

You're so very right. For me, a little encouragement goes a long way. Just knowing there is a connection to other people here, which I sense already, makes it much easier to do. I guess that's the reason for the forum!

I'm still wondering about the earlier comment, and not just as it pertains to me, but to everyone who knows they have either celiac disease or an allergy/intolerance - wouldn't it work just as well or better to have an allergy (blood) test for wheat? If that came back negative, couldn't one assume with certainty that they had celiac disease? It's an easier, more reliable test - no hospital stay or anything.

(Didn't mean to overlook you up there, Deb - I appreciate your comments, too.)

[Felidae]

My knowledge of allergies is that you have an anaphalaxis (sp?) and/or hives type of reaction. Gastro or other stomach problems are not a true allergy, but may be due to an intolerance.

[Sk8ing]

That is true. I get the digestive problems, but also some eczema, so the "allergies" I have probably aren't true ones. Still, I had a blood test for them which was completely accurate. It wasn't the RAST test, but one that gave a count of IgE's in the blood (whatever those are!) - my doctor at the time said it was more accurate than the RAST, which gives a count of EgE's. If she explained that to me at the time, I certainly don't remember what it meant any more! That was twenty years ago. Anyway, there are tests for wheat intolerances, and they're the same tests as for allergies.

[Felidae]

Sorry, I wasn't doubting your allergies, I just don't think I have any food related allergies. I am interested in intolerance testing, though.

[Sk8ing]

Oh, that made me chuckle! No offense was taken whatsoever - I was just trying to explain everything in a way that it might relate to celiac disease. I've just always wondered why doctors don't go the allergy testing route instead of doing an endoscopy (for celiac testing), but I'm sure they have a logical reason. Some day maybe I'll know what it is! (Hey, I know - I could ask my doctor.)

[Claire]

Too much here to remember what to respond to.

I do not have Celiac. I had allergy testing at one time and was absolutely free of any 'allergy' to anything.

I am sensitive to almost everything! Allergy tests do not pick up anything but true allergies - not sensitivites/intolerances or celiac.

I have my own way of thinking about celiac and gluten sensitivity/enteropathy. It is like a coin with two sides. One side is Celiac. The other side is gluten sensitivityenteropathy. Celiac usually has GI symptoms but not always. GS may have GI symptoms but usually not as severe as Celiac. There may or may not be intestinal damage. While untreated Celiac or poorly controlled celiac can lead to serious intestinal problems - i.e. T-cell lymphoma and also spawn other autoimmune diseases. GS is known for presenting more neurological symptoms - ataxia, neuropathies etc. It also seems to spawn other autoimmune diseases.

Two sides of the same coin! Dr. Braley (Dangerous Grains) believes this should be one disease entity - not two. It certainly would be far less confusing to patients and doctors alike.

Gluten is toxic to both celiac disease and GS - damage is ongoing as long as gluten is being consumed - whether or not we feel any 'effects'.

[RiceGuy]

I think what Sk8ing is suggesting, is if you find you cannot eat wheat/gluten, and an allergy test for wheat is negative, then it would have to be an intolerance. Since the allergy test is more reliable, ruling that out would rule in the other, given the reactions to wheat/gluten have already been discovered. Is that what you mean Sk8ing?

I suppose they don't do that, because they don't acknowledge the sensitivity unless there's been a medically recognized diagnosis. They don't like the patient doing any self-diagnosis and telling them what's wrong. They want to tell the patient what's wrong.

That's my guess/opinion.

As for the eczema, there is actually very little known to the medical community as to the causes. However, they have noticed tendencies for it in family histories, so they suggest one cause is genetic. There are also some allergies suspected, whether environmental or dietary, etc, but again they really don't have a good handle on eczema in general. It is not uncommon for the gluten intolerant to have eczema. I haven't looked into whether it occurs more with those who have more damage or anything, so I can't be of any further help there. One thing I'm sure of, is that eliminating gluten will help if you have the intolerance. That means shampoo and any other hair/skin care products.

I have my own way of thinking about celiac and gluten sensitivity/enteropathy. It is like a coin with two sides. One side is Celiac. The other side is gluten sensitivityenteropathy. Celiac usually has GI symptoms but not always. GS may have GI symptoms but usually not as severe as Celiac. There may or may not be intestinal damage. While untreated Celiac or poorly controlled celiac can lead to serious intestinal problems - i.e. T-cell lymphoma and also spawn other autoimmune diseases. GS is known for presenting more neurological symptoms - ataxia, neuropathies etc. It also seems to spawn other autoimmune diseases.

From what I've learned thus far, I'd say that gluten intolerance is the fact that the body reacts as it does - with an immune system response. Over time, that response damages the small intestine. That damage, as I understand it, is what's called Celiac disease.

Perhaps one way to further explain it is like this:

If you suffer from a thyroid disease due to lack of iodine (typically goiter), it can be because you aren't getting enough iodine in your diet. However, it can also be caused by malabsorption, which could be due to Celiac disease. It's the domino effect. The bottom line is, that the thyroid condition will ultimately have one root cause, though the basic reason in this case is lack of iodine. If you go to a doctor for gioter, you'd probably either be told to increase your iodine intake, given regular shots, or be given a prescription medication. Chances are, the Celiac disease would not be discovered.

So, one problem leads to the other. With gluten intolerance, one result is the damage to the intestine. And once that begins, all sorts of other problems will develope. You might have muscle pain, but the root cause is the intolerance to gluten, not Celiac disease, nor malabsorption. Those are only some of the other dominos that fell along the way.

Fortunately, Celiac disease isn't caused by all sorts of things. The body doesn't normally attack itself, so once this condition is discovered, the actual cause - gluten intolerance - is the logical conclusion.

I hope that is a correct explanation. The last thing we need is more misinformation out there. It makes sense to me, but if it's wrong I'd hope someone can point it out.

[RiceGuy]

I was just poking around for info and found stuff that suggests allergies are an immune response. I'm not sure if that's actually correct yet, but if it is, then the difference with an intolerance would have to be the autoimmune response.

[Sk8ing]

To RiceGuy: Yes, it makes sense, and what you said about testing was exactly what I meant. In my mind, my granddaughter has celiac disease because the doctor said she had no allergies. When I was tested for allergies, it showed no allergy to wheat, but then I had only a few allergies at that time. I've gotten so many more over the years that, I suppose, now I may have one to wheat and gluten. So that will remain a mystery to me, but that's okay - what has been said here has given me renewed conviction to stay away from gluten (totally).

As for eczema, in my case I had an outbreak covering much of me just before being tested for allergies, and once I got the allergies under control, was able to clear up almost all of it. I still have a few smaller areas that get worse if I eat something I react to, so it is related to allergies for me, but maybe allergies aren't really the cause of the eczema.

You brought out several good points, and I've often wondered if celiac disease was not at the root of all of these other things that went wrong. Usually I've thought of it the other way around, but celiac disease isn't something caused by something else, as you said.

So if an intolerance is an autoimmune response, how would an allergy be categorized, as opposed to autoimmune-related? (Sorry, I probably missed that in a previous post. Thanks for your patience.)

Oh, I see what you said - immune vs. autoimmune. I don't quite understand what that means, though.

[Sk8ing]

Okay, I'm adding one more comment here, as I just remembered more on eczema: The doctor I saw at the time said that it is caused by allergies, but that for some reason not all people have that response. (No one else in my family has it, other than my kids, who have had just a bit on occasion.) Allergens accumulate under the surface of a person's skin if they've had a previous reaction, and are ready to create a new outbreak when the body is aggravated. My daughter's doctor told her to take antihystamines before skiing because the cold gives her hives (also called urticaria) on her hands, which are caused by the allergens there. She has also had some mild food allergies, which caused the allergens to go there in the first place.

[RiceGuy]

Okay, I'm adding one more comment here, as I just remembered more on eczema: The doctor I saw at the time said that it is caused by allergies, but that for some reason not all people have that response. (No one else in my family has it, other than my kids, who have had just a bit on occasion.) Allergens accumulate under the surface of a person's skin if they've had a previous reaction, and are ready to create a new outbreak when the body is aggravated. My daughter's doctor told her to take antihystamines before skiing because the cold gives her hives (also called urticaria) on her hands, which are caused by the allergens there. She has also had some mild food allergies, which caused the allergens to go there in the first place.

Well, if you Google around on eczema, only some are thought to be linked to allergies. According to the medical industry, there is no known cure - gee, what a surprise. I think there's an old treatment involving the application of olive oil though.

Now, as for the accumilation of allergens (toxins if you ask me), yes that can happen. The body is sometimes unable to dispose of certain toxins readily. Of course, if you are continually adding in more, that's not gonna help either. Plus in the case of a leaky gut, toxins are allowed to enter the blood stream and circulate all over the place. Other body systems aren't desiged to deal with them, so if they can't be flushed out, they end up anywhere the body can tuck them away.

Some excess nutrients are expelled in ways we might not expect. For instance, extra iodine can be excreted through the skin and cause acne (so try not to ingest too much kelp ). From what I know, this is the sort of thing the body attempts with certain toxins.

In your daughter's case, obviously her reaction isn't because of too much hystamine. What I'd try there is a cleansing of sorts. How to do that I suppose depends on the toxins, where they are, etc. I've not read up on that though. There are several natural cleansing formulas, teas, and herbs, etc. I know there are certain bath formulas which are supposed to draw out toxins too. Since the skin is contantly replacing itself, the offending substances should eventually work themselves out. So it does make sense for the body to put them there. Therefore, if the condition doesn't go away in a reasonable period of time, I'd suspect there is a constant influx of additional substances. I would also not be surprised if it's something other than "under the surface of the skin". I'd Google around and research some stuff if it were me. Hopefully it's not due to heavy metals, because those are terribly difficult to deal with. Fish can contain heavy metals - that includes tuna. Most people don't know that vaccines such as those for flu often contain mercury! I can't imagine how the medical industry can justify that. I think I heard there's been some change in that recently, but I'll never get any shots - for a lot of reasons (that's another topic altogether).

I do know from my own experience that yeast in the gut creates a variety of toxins. It can be debilitating. If you search this board for Caprylic Acid and Acidophilus, you will find posts from myself and others. Both are safe even if you don't have any particular yeast problem from what I know. I took the Caprylic acid and wow - what a difference! I got rid of problems I didn't even know I had. This may or may not relate to your daughter's condition, but it can't hurt to look into it and see if she relates to any common symptoms.

It surprises people to learn how simple it is to cure certain ailments. Take for instance the use of apple cider vinager to cure heartburn. Garlic is a natural antibiotic. Regular intake will help boost the immune system. I recommend that highly, especially during flu season.

[Felidae]

Claire, I really like your explanation of celiac disease and gs.

[tarnalberry]

I was just poking around for info and found stuff that suggests allergies are an immune response. I'm not sure if that's actually correct yet, but if it is, then the difference with an intolerance would have to be the autoimmune response.

"Allergies" are an IgE mediated immune response. Intolerances (classic ones, not things like lactose or sucrose intolerance caused by a lacking enzyme) are IgG mediated immune responses. Most IgG food intolerances are NOT autoimmune, but celiac is.

[Nevadan]

"Allergies" are an IgE mediated immune response. Intolerances (classic ones, not things like lactose or sucrose intolerance caused by a lacking enzyme) are IgG mediated immune responses. Most IgG food intolerances are NOT autoimmune, but celiac is.

I agree with Tarnalberry, and from what I have read her "classic" intolerances can also include IgA mediated immune responses. IgG and IgA molecules are very similiar differing mostly in where in the body they are predominantly created. It appears from a molecular biology book I've been reading that the IgA's are more likely to be created in the gastro (esopagus, stomach, intestinal) linings while the IgG's are more likely to be created elsewhere in the body. IgA's eventually reach the blood thru glastro lining damage. I believe this is also consistent with Dr. Fine's basis for his Enterolab: testing for IgA in the stool provides earlier and more sensitive detection since it is more often generated within the gastro tract. On the other hand ELISA tests such as done by York Labs focus on IgG in the blood to detect possible food sensitivities which IMO may be more sensitive to partially digested food molecules that find their way to the blood stream, perhaps from a leaky gut problem.

If this is incorrect, someone please correct me - I'm still learning.

George

[Claire]

I think what Sk8ing is suggesting, is if you find you cannot eat wheat/gluten, and an allergy test for wheat is negative, then it would have to be an intolerance. Since the allergy test is more reliable, ruling that out would rule in the other, given the reactions to wheat/gluten have already been discovered. Is that what you mean Sk8ing?

I suppose they don't do that, because they don't acknowledge the sensitivity unless there's been a medically recognized diagnosis. They don't like the patient doing any self-diagnosis and telling them what's wrong. They want to tell the patient what's wrong.

That's my guess/opinion.

As for the eczema, there is actually very little known to the medical community as to the causes. However, they have noticed tendencies for it in family histories, so they suggest one cause is genetic. There are also some allergies suspected, whether environmental or dietary, etc, but again they really don't have a good handle on eczema in general. It is not uncommon for the gluten intolerant to have eczema. I haven't looked into whether it occurs more with those who have more damage or anything, so I can't be of any further help there. One thing I'm sure of, is that eliminating gluten will help if you have the intolerance. That means shampoo and any other hair/skin care products.

From what I've learned thus far, I'd say that gluten intolerance is the fact that the body reacts as it does - with an immune system response. Over time, that response damages the small intestine. That damage, as I understand it, is what's called Celiac disease.

Perhaps one way to further explain it is like this:

If you suffer from a thyroid disease due to lack of iodine (typically goiter), it can be because you aren't getting enough iodine in your diet. However, it can also be caused by malabsorption, which could be due to Celiac disease. It's the domino effect. The bottom line is, that the thyroid condition will ultimately have one root cause, though the basic reason in this case is lack of iodine. If you go to a doctor for gioter, you'd probably either be told to increase your iodine intake, given regular shots, or be given a prescription medication. Chances are, the Celiac disease would not be discovered.

So, one problem leads to the other. With gluten intolerance, one result is the damage to the intestine. And once that begins, all sorts of other problems will develope. You might have muscle pain, but the root cause is the intolerance to gluten, not Celiac disease, nor malabsorption. Those are only some of the other dominos that fell along the way.

Fortunately, Celiac disease isn't caused by all sorts of things. The body doesn't normally attack itself, so once this condition is discovered, the actual cause - gluten intolerance - is the logical conclusion.

I hope that is a correct explanation. The last thing we need is more misinformation out there. It makes sense to me, but if it's wrong I'd hope someone can point it out.

Rice Guy, you have me confused.

You state that an allergy test for a wheat allergy is the most reliable. I have had that test and it was negative. I do not Celiac. So that would mean that when I get the test for genetically determinded gluten sensitivity it should be positive. I'll let you know.

Certainly gluten sensitivity and celiac are not the same thing. Can't tell for sure whether you are saying that or not. Contrary to what is frequently expressed here, gluten sensitivity does, at least in some cases, cause intestinal damage. Yet it is 'gold standard' only for Celiac.

You say "the root cause is the intolerance to gluten, not Celiac disease, nor malabsorption. Celiac disease is the intolerance to gluten. That is how it is defined in the literature.

The body attacks itself more often than we think. What about all the people with autoimmune diseases who do not have Celiac and do not have GS. How did that happen? Claire

[Sk8ing]

Hello again, everyone. I have enjoyed reading all of these responses. Just now I clicked on the Q&A / FAQ and found an article all about allergy vs. intolerance, which really helped me. Many of the questions I had were answered there. Maybe those of you who were on this thread who haven't yet seen it - or haven't read it for a long time - would like to check it out. Incidentally, in a previous post, I said that I'd had an allergy test for IgE's, which was better than the one for EgE's according to my doctor; well, I got that wrong! What I should have said was that my test was for IgG's instead of the RAST test for IgE's. Now I've probably confused a lot of people! Anyway, right there in the article it did say that the test I had was for food intolerances, not allergies - all this time, I've been mistaken about what I've had!

Thanks to all for the comprehensive information in this and the other areas - good reading!

Sk8ing

[RiceGuy]

Rice Guy, you have me confused.

You state that an allergy test for a wheat allergy is the most reliable. I have had that test and it was negative. I do not Celiac. So that would mean that when I get the test for genetically determinded gluten sensitivity it should be positive. I'll let you know.

I simply restated what Sk8ing was saying, in an effort to clarify it. It only appears as if I said it when taken out of context. The logic being used is a process of elimination. Once you rule out everything else, what you are left with is more likely to be the answer. Though allergies do appear to be detected easier from what I'm hearing. Perhaps because more research has been done on them. Again, I was mearly asking Sk8ing if I got the meaning.

It will be interesting to know the results if you get a test for gluten sensitivity/intolerance.

Certainly gluten sensitivity and celiac are not the same thing. Can't tell for sure whether you are saying that or not. Contrary to what is frequently expressed here, gluten sensitivity does, at least in some cases, cause intestinal damage. Yet it is 'gold standard' only for Celiac.

You say "the root cause is the intolerance to gluten, not Celiac disease, nor malabsorption. Celiac disease is the intolerance to gluten. That is how it is defined in the literature.

I agree that gluten sensitivity and Celiac are different things. However, are you saying the sensitivity is the same as the intolerance? As of now I think of the sensitivity as what may be the non-distructive reaction. To me "intolerance" means cannot tolerate, period. Whereas a sensitivity has a threshold level, under which an amount could go unnoticed. What I've been reading thus far indicates that a disease is an ailment which has a known cause, while a syndrome is one for which the cause isn't known. So, I conclude that the cause of Celiac is the immune system's response to gluten. The intestinal damage is the initial result, and the illnesses and disease which stem from that are more or less significant, depending on the individual. I guess the confusing part is that there are all sorts of diseases which result from the damage, and the damage is the result of the immune response. It's a cascade effect, not just a single cause/result.

Perhaps we are getting caught up in symantics here. There may be certain words used interchangably, either by all or part of the medical community. Keep in mind that many doctors still don't know about this stuff. Many of us here are far more informed than they are.

The body attacks itself more often than we think. What about all the people with autoimmune diseases who do not have Celiac and do not have GS. How did that happen?

Like you say, there are different auto-immune diseases, each with their own set of causes/effects.