Could Sensitivity Be Directly Related To Diet Compliance?

[Mike M]

Having personally dealt/coped with Celiac for some time now and the more I learn, I am starting to make observations that may have some merit in my opinion (or maybe not!). So, I have a question(s). Could it be that those that appear to not be so sensitive to smaller amounts of gluten exposure, may have "desensitized" there immune system by consuming small amounts of gluten on a somewhat regular basis? Now I am not talking about eating gluten on purpose here. Casual gluten exposure is what I am saying through minor cross contamination or just eating products produced in a mixed facility ect. Could this be why there seems to be such a reaction gap in those that are ultra sensitive vs. those that seem to not react? These immune systems possibly can cope with small amounts of gluten without such a bad reaction? I don't know, hoping to hear other views.

P.S. I do have some other observations I would like to discuss. I would like to discuss these things in a positive way. Thanks and all the best, Mike

[YoloGx]

While I do agree that may be part of it for some folks, I think that for others they just haven't had celiac that long thus they react less... It is an interesting question no matter what however. I know for myself I am sensitive to a lot more than gluten, so I am on the ultra sensitive side it appears. No fun but that's the way it goes. And from what I am learning, everyone is affected by their diet to some extent or other, "normals" included. The standard American fair according to Dr. Mark Hyman (Ultra Mind Solution etc.) is making most everyone either sick, crazy or crotchety!

Bea

[Sailing Girl]

I, too, have wondered about this.

When I first went gluten-free (because I was nursing and my daughter needed to be gluten-free), it was really just major-sources-of-wheat-free -- I was living in a mixed home, still drinking *beer* and eating foods with soy sauce on occasion, using the same non-stick pans, etc., as the gluten eater living there. I didn't know any better. But I felt better than I had in my entire adult life -- all sorts of nagging little health problems went away.

Then (once DD weaned) I added back some very limited bread sources -- and my health started to decline again. I was still incredibly gluten-light, but I started to have major neuro symptoms and horrible gastro symptoms. Eventually those led me to this site, and I realized the need to be completely, utterly gluten-free.

I don't have a gold standard Celiac diagnosis, but I do have a significant amount of medical expertise, and based on my medical history (and my daughter's), there's little doubt I'm Celiac. I'll never get the gold standard diagnosis unless they develop a test for it that doesn't involve a gluten challenge.

I've spent the last 19 months methodically (some of my friends would say neurotically) eliminating gluten sources from my diet. And while my health is now back to superb, I've become dramatically more sensitive, and I react to products made on shared lines and many labeled "gluten-free." I also react to grain-based alcohols and vinegars.

So I do think our bodies react more noticeably to minute gluten once we're almost 100%. But it's also possible that we were reacting all along to those microscopic amounts of gluten -- and we just didn't notice because our antibodies always were activated anyway with the larger quantities of gluten we were consuming.

[Mike M]

I, too, have wondered about this.

When I first went gluten-free (because I was nursing and my daughter needed to be gluten-free), it was really just major-sources-of-wheat-free -- I was living in a mixed home, still drinking *beer* and eating foods with soy sauce on occasion, using the same non-stick pans, etc., as the gluten eater living there. I didn't know any better. But I felt better than I had in my entire adult life -- all sorts of nagging little health problems went away.

Then (once DD weaned) I added back some very limited bread sources -- and my health started to decline again. I was still incredibly gluten-light, but I started to have major neuro symptoms and horrible gastro symptoms. Eventually those led me to this site, and I realized the need to be completely, utterly gluten-free.

I don't have a gold standard Celiac diagnosis, but I do have a significant amount of medical expertise, and based on my medical history (and my daughter's), there's little doubt I'm Celiac. I'll never get the gold standard diagnosis unless they develop a test for it that doesn't involve a gluten challenge.

I've spent the last 19 months methodically (some of my friends would say neurotically) eliminating gluten sources from my diet. And while my health is now back to superb, I've become dramatically more sensitive, and I react to products made on shared lines and many labeled "gluten-free." I also react to grain-based alcohols and vinegars.

So I do think our bodies react more noticeably to minute gluten once we're almost 100%. But it's also possible that we were reacting all along to those microscopic amounts of gluten -- and we just didn't notice because our antibodies always were activated anyway with the larger quantities of gluten we were consuming.

Thanks for the responses. Your post brings up another observation that seems plausible to me.....I read over and over about these possible "triggers" that may cause full blown celiac to "kick in" so to speak. I have read that it was a surgery or a severe auto accident or a serious stomach virus that some folks seem to be able to relate getting this disease too. They all seem to possibly have a common link in my opinion. Could it be the lack of eating for a sustained period of time that allows our bodies to have a break from gluten and give it time to build up more and more antibodies? Could it be that our immune system was so run down that it could not mount up a defense and was running on almost empty with regards to antibodies? When enough antibodies are present, is this enough to finally have the gut damage? I don't know, just asking out loud. In my opinion, those of us with celiac now, may have been born with this disease and it just may be a matter of our bodies performing an antibody balancing act until it tips all the way to full blown celiac (villi damage)? Lots of questions! All the best, Mike

[Tallforagirl]

In my opinion, those of us with celiac now, may have been born with this disease and it just may be a matter of our bodies performing an antibody balancing act until it tips all the way to full blown celiac (villi damage)? Lots of questions! All the best, Mike

A study done here in Australia found no relationship between severity of symptoms and severity of gut damage: Open Original Shared Link

Just reading this board I am often suprised to note that often those with the strongest symptoms are negative for antibodies when blood-tested, whereas many who are asymptomatic or with very mild symptoms have very positive test results (myself included).

It would be really interesting if researchers could find out why some are so much more sensitive than others. My personal theory is that some celiacs get an allergic reaction to gluten alongside the celiac disease.

[YoloGx]

My personal theory is that some celiacs get an allergic reaction to gluten alongside the celiac disease.

Antihistimines do not help with this however so I wouldn't call it a strict allergic reaction. However it could be a "sensitivity" reaction. Chicken or egg question of course. I have found nevertheless that taking baking soda and apple cider vinegar as well as the usual remedies of probiotics and digestive enzymes really does help so there may be some truth to the "sensitivity reaction" part.

As for me, I have noticed that whereas last year when I first went off all trace gluten I easily got D etc., but then it was usually over with unless I stressed myself out. Now however if I get a good dose of CC, I get headaches, can't sleep, my nerves get shot and my body gets generalized inflammation and body aches. Plus its way easier for me to get congested. This often then will hang on three to four weeks. Major bummer.

I have thus decided not to date for the time being until I improve a lot more since dating seems to be the major way I get CC'd these days. I also have decided to make myself in charge of family parties so I prepare all the food to get around those CC problems... Fortunately I am a pretty good cook so my plan thus far is working out... Now instead of my family focusing on their collective opinion that I am an over sensitive nut case they are instead appreciating what a good dinner I made for them etc. etc.

Bea

[tom]

The thread title is "Could Sensitivity Be Directly Related To Diet Compliance?" w/ the post revealing the theory that the sensitivity could be a result of the strict compliance.

Isn't it the other way around?

Doesn't the high sensitivity preclude & prompt the strict compliance?

[mushroom]

The thread title is "Could Sensitivity Be Directly Related To Diet Compliance?" w/ the post revealing the theory that the sensitivity could be a result of the strict compliance.

Isn't it the other way around?

Doesn't the high sensitivity preclude & prompt the strict compliance?

You could be right. When we first start out we don't know how sensitive we are. I for one was deathly afraid of eating out because of fears of cc. Even now, I can probably count on my fingers (without using toes) the number of times in 16 months I have eaten in restaurants. But I am getting bolder, because I can honestly say that I have never suffered cc from eating out--mind you, I am pretty careful of where I go and what I order. I can pretty much say that the only times I have been caught out with gluten is with medications (I know, my bad for not always being thorough in checking).

So I count myself lucky as not being one of the supersensitive. And yet, with diagnosis (self) at 67, I had consumed gluten for longer than most.

I am pretty sure that my head-on auto accident was my trigger because my symptoms increased big-time after that. That was when I became lactose intolerant. But then again, I had a mycoplasma infection which had major impact on my body at about that time too.

Besides, when I do get glutened the symptoms don't last very long for me, and are not as severe (except when I keep on taking the med or supplement-=duh!! you would think I would wake up sooner.

So while I am very diet compliant, I have no troubles in restaurants or bakery departments of supermarkets, or other places that send some forum members up the wall. And yet I have two other auto-immune celiac-related diseases which are not going away.

So I don't have any answers.

[MollyBeth]

Just reading this board I am often suprised to note that often those with the strongest symptoms are negative for antibodies when blood-tested, whereas many who are asymptomatic or with very mild symptoms have very positive test results (myself included).

I seem to be one of the people that is not very sensitive. But before I went gluten free I was sick all the time and am still trying to get all my blood levels up to where they should be. Like my iron and ferratin. My blood test though came back completely negative. When I had my endoscopy though the doc said my villa were completely flattened in the biopsies he took.

I find this entire world of auto-immune very confusing. Everyone's story is soo different. Some people get skinny....I gained a bunch of weight because I was taking in so many calories everyday...even with all my malabsorption problems I still gained weight. Everyone's story is very different.

The thread title is "Could Sensitivity Be Directly Related To Diet Compliance?" w/ the post revealing the theory that the sensitivity could be a result of the strict compliance.

Isn't it the other way around?

Doesn't the high sensitivity preclude & prompt the strict compliance?

haha I'm sorry I just had to laugh at this!! So which came first??? The chicken or the egg??

[Jestgar]

Everyone's story is soo different.

I think this is the key.

I get almost no CC. I don't eat processed foods and I rarely eat out. When I accidentally to get CCd I know within minutes, however, my reactions are very mild and only last an hour or so.

I think your immune system dictates whether it will have a store of cells primed and ready to spit out antibodies, or whether it will clear out those rarely used cells and only give a small response to gluten.

[jerseyangel]

Doesn't the high sensitivity preclude & prompt the strict compliance?

It did for me.

I think your immune system dictates whether it will have a store of cells primed and ready to spit out antibodies, or whether it will clear out those rarely used cells and only give a small response to gluten.

I never thought of it that way--so that could explain the wide variation in symptoms from person to person. If that's the case, there's probably not a lot we can do to change it--just be ultra careful about the things that cause reactions in the first place?

[Mike M]

The thread title is "Could Sensitivity Be Directly Related To Diet Compliance?" w/ the post revealing the theory that the sensitivity could be a result of the strict compliance.

Isn't it the other way around?

Doesn't the high sensitivity preclude & prompt the strict compliance?

Well, it could very well be the other way around. I have also been thinking that perhaps some celiacs may produce a protective mucous coating that lines the intestines because of the gluten being an irritant and they just don't absorb well because of this. Maybe this is why some have no symptoms and yet have severe malabsorption issues and also perhaps have a negative biopsy? Maybe over time if this mucous idea is true, after a while the body doesn't produce this any longer and then we get the villa damage? Again, don't know! Not sure where I am going with this.....Seems interesting though. Mike

[Tallforagirl]

I think this is the key.

I get almost no CC. I don't eat processed foods and I rarely eat out. When I accidentally to get CCd I know within minutes, however, my reactions are very mild and only last an hour or so.

I think your immune system dictates whether it will have a store of cells primed and ready to spit out antibodies, or whether it will clear out those rarely used cells and only give a small response to gluten.

I think it's important to differentiate between your immune system response and your nervous system response.

Some celiacs react very quickly and violently with D, gas etc to even trace amounts of gluten. Others have a less sensitive nervous system, so they are asymptomatic even when ingesting large amounts of gluten. For both types of people, an autoimmune response is still taking place. I won't say that the same amount of gut damage happens in both types, because I think it's a very individual thing, but I would say that a strong reaction does not equal more gut damage.

It's definitely something that needs more research, but at the end of the day, all of us need to strive for as close a possible to 100 per cent gluten-free diet, regardless of "sensitivity".