I've Been Wondering About Our Differences

[TGK112]

Since being diagnosed - I have always wondered  about our differences. Reading this forum, it is very apparent that we all react with varying types and degree of symptoms - from having no symptoms to becoming violently ill. I have always been curious - do we also have differences internally. I know that the standard is that we are able to tolerate 20 ppm - but have read that some people can only tolerate 5 ppm. Does that mean some of us can tolerate 30 ppm? Do our intestines get equally inflamed?? Or do some people get mild inflamation while others get severe inflammation.

 

Does anybody know the science of this??

 

I posted something similar to this when I first got diagnosed, and got a lot of preachy - "don't eat any gluten! "-responses. I know that - and I have never cheated. My second endoscopy showed full recovery and my latest blood test showed normal antibody levels. So I am not looking for permission to cheat - I am just curious about the science.

[BlessedMommy]

I've been wondering that very thing as well and I'm not looking for permission to cheat either, so I understand where you're coming from.

[BlessedMommy]

If someone can "tolerate" 20 PPM of gluten, does that mean that your body essentially doesn't recognize that small of an amount? Do people's body's abilities to "recognize" gluten vary?

[LauraTX]

One would think that the activity of the antibodies would probably differ with some people's being over the top in their response.  Maybe this will come out of future research, because Celiac research really has a long way to go still.

[1desperateladysaved]

It is also possible, that a person can't detect or feel damage.  Perhaps a test would be for everyone to eat the same 5pm dish and see who reacts.  I am not signing up!  We always say one could possibly do damage to the small intestine, BUT we don't see that damage on every occassion.  All we have is a subjective reaction or a measure of damage over time.

 

I have been trying to assume that everyone reacts when they think they do.  Who knows what is happening within a person but themselves?  I fully believe that one person will eat something and feel fine, but another will react violently.  Sometimes this makes talking about it together difficult.  One doesn't want a newbie to fear things they shouldn't.  Yet, one doesn't want a super-sensitive person to be persuaded to try something foolish for them.

 

Live healthy to the best of your ability,

 

Dee

[dilettantesteph]

It is known that there are different genes responsible for this condition.  Open Original Shared Link

One thing that genes do is give the sequence for amino acids that make up proteins. Open Original Shared Link

Some of these proteins act as catalysts for the reactions that our bodies need.  Some of these make up the receptors that react with gluten which leads to us gettting sick.  Open Original Shared Link

Open Original Shared Link

I think that the different genes create slightly different receptors that interact better or worse with gluten.  A stronger interaction of receptor with gluten will cause illness at lower gluten concentrations than a weaker interaction. Open Original Shared Link

 

Add to all that perception of reaction, differences in diet, differences in intestinal flora, and so many other factors yet unknown.  The studies looking at damage have been concentration on villi damage only.  Should they look in more places?   There are a lot of unanswered questions.

[sweetsailing]

I tend to agree with dilettantesteph about the gene factors.  I do think that the correlation between genes and symptoms is perhaps stronger than the correlation between symptoms and intestinal mucosa.  We have all heard some on here that had very little symptoms but severe villi damage, so based on that I don't know that symptoms correlate well with the amount of intestinal damage

 

There is however some evidence that your genetic make up, which celiac genes you have and how many, does correlate with how one reacts to gluten, once that reaction sequence has been "triggered".

 

Then of course, there are all the other factors that dilettantesteph mentions. 

 

What I still wonder about is the connection of genetics to intestinal damage.  So, my theory goes something like this.  If you have a genetic make up that puts you in the high risk category (i.e. 2 copies of DQ2 or 3 or 4 copies of celiac genes), I think it's likely that you have fairly severe symptoms and react quite strongly to gluten, however because the reaction is so strong and immediate, perhaps the intestinal damage is limited because it is still very early in the disease process.  Perhaps this explains why some have negative biopsies?

 

Of course, all of this is pure speculation on my part, but it kind of makes you wonder. 

[skelly247]

It also depends on what part of gluten your body is making an antibody to.  Some people may make antibodies that are better at binding to/finding  gluten.  They would, presumably, get sick from less gluten than someone who has antibodies that are worse at binding to gluten.  Genetics does play a role in this but your bodies initial response in making an antibody to gluten also matters. 

[BlessedMommy]

So essentially if a person is "less sensitive" it means that their body is not finding or recognizing that miniscule amount of gluten that's there? 

[nvsmom]

I think that "less sensitive" just means that the symptoms are not as extreme as someone "more sensitive".  They just aren't feeling the reaction in the same way.

 

It is sort of like how one person experiences a virus in a different way than others would. If person A only gets the sniffles and a mild cough with a virus and person B gets a fever and ends up with a sinus infection that lasts two weeks, it doesn't mean that there are less viruses invading their cells, they have simply reacted differently to the same virus... Like how celiacs react differently to an exposure.

 

I am a firm believer that intestinal damage has very little to do with symptoms. Consider someone with non-celiac gluten intolerance (NCGI), they has absolutely no intestinal damage but they may have much more severe symptoms than some celiacs.

 

I for instance do not have a horrendous immediate reaction to gluten. If glutened I will bloat, get a stomach ache and possibly a migraine, and feel tired.  Annoying symptoms but I can function okay.  With repeated exposure I get worse symptoms with more fatigue, hair loss, foot pain, joint pain, C, moodiness and such - the joint pain is the big one for me.  

 

My symptoms are not severe and I do not think I would be classified as supersensitive... For about a month i was eating a few fries a couple of times a week that had wheat starch on them and that just caused my symptoms to grow slowly so I had a hard time figuring out if I was sick or what - doesn't seem sensitive.  But then another time I had a gluten-free beer that was supposed to be gluten-free to 6ppm - whoa, did I react to that! 

 

So different reactions at different times to different products. I think my body just responded differently based on my health at the moment just like I would respond differently to a virus depending on my health at the time of exposure.

 

But, that's all just my opinion and I could be very very wrong... or right.    Time and research will tell.

[BlessedMommy]

Interesting!

 

I have a theory that slight CC has a cumulative effect on me. I ate at Taco Bell twice (back when I was less careful) and though my menu item was technically gluten-free (bean tostada) I'm sure that it was CC'ed. After the 2nd time, I started getting a rash. 

[dilettantesteph]

I agree that there is a difference with feeling symptoms.  I think there is a difference in how our autoimmune reactions occur.  I agree with the build up of small amounts of cc.  I've felt that too.  There also seems to be a stress/anxiety component.  There is so much to be figured out still.

[NatureChick]

Just read this in the publications section. Talks about how two different genes cause two different reactions (on a molecular level).

Open Original Shared Link

I also read something a long time ago about how some people who don't have the genetic predisposition could have problems triggered by other big events in their life, such as a major illness, surgery, antibiotic usage - something that tells their immune system to go into overdrive. I would never be able to find the link now.

[TGK112]

Thanks all!

 

Lots of helpful responses! Agreed - there's a lot we still don't know!

[heymom45]

About 2 months ago, I asked these same kind of questions (concerning all the varied reactions) to my kids' pediatric gi dr. We were referred to him because I have diagnosed celiac disease and so does their eldest sister. I've read some of the posts detailing very severe reactions and could only pray for so many of you, because despite my having been diagnosed over 40 years ago I have had almost no symptoms compared to others!  The doctor's explanation was that if you have celiac disease, you must follow gluten free diet because even when small amounts are consumed your body IS adversely affected. You may not have dramatic physical suffering, but internally your body is ill. And like when someone is ill without know it, how you feel becomes "normal" (even though you are not at your prime). When you have the flu, by the time you KNOW you are sick, you have really been sick for a while.  

 

This was not a big enlightenment for me, but it gave me a little more to understand. And like has been said here,  there is still much to research and discover!