Does It Matter How Sensitive

[finlayson]

Happy New Year to all fellow celiacs. Wishing you all a healthy, safe year. I have a question about something that puzzles me on some of the threads. I have read quite a few times on people's posts that "it depends how sensitive you are" or "if you are not really sensitive" you could try a particular restaurant or product. I thought that it did not really matter how you reacted to gluten if you are a diagnosed celiac, the damage from ingesting gluten would be the same. I myself an a silent celiac, in as far as my symptoms are so subtle and slow to emerge that I can rarely tell which food or event caused them. So, my question again is, does it matter how sensitive you are to gluten ingestion in terms of health?

[silk]

I would agree with you that it does not matter whether it makes you noticeably ill or not. The end result is the same. My daughter came home from high school one day all excited because another student who has Celiac told her that she has some pill that she takes when she wants to eat gluten so that she does not get sick. I have no idea what the girl was talking about but told my daughter, it may allow her to eat the gluten and not get physically sick but it is still doing damage to her system and if she continues this, she is setting herself up for other health issues, most notably cancer. My daughter was bummed but accepted that there is no magic pill to make this disease go away.

[pricklypear1971]

I think what most people are referring to here is that some people react to what is commonly thought as "safe" levels of gluten - below the 20 ppm, or even 5 ppm.

So, a person who is not super sensitive could eat at a gluten-free restaurant without a reaction, but the super sensitive (reacts to gluten below 20 or 5 ppm) may not.

[finlayson]

Ah yes, a magic pill would be very nice. When I was first diagnosed my family doctor actually told me that since I did not have noticable symptoms, I probably wouldn't need to follow the gluten free diet! Yeah for doctors.

[finlayson]

Thanks for your reply pricklypear. That makes a lot of sense and it had not occurred to me.

[IrishHeart]

IMHO

It does not matter how much gluten is ingested in terms of PPMs or how violently you react or if you do not even react at all. (I personally suffer symptoms for as long as 12 days after CC)

We are all equally affected by the gluten because the AUTOIMMUNE response is triggered whenever ANY gluten is ingested.

From the Mayo Clinic:

"When gluten is ingested, the immune system triggers an isolated inflammatory response in the small intestinal mucosa.

A lifetime gluten-free diet can completely stop the immune response. Once the patient is on a gluten-free diet, the small intestine begins to repair itself and the antibody levels decline and eventually disappear. However, reintroduction of gluten-containing products stimulates the immune response again."

Whether you have instant D or a headache of brain fog or lesions reappear--or if you do not notice a darn thing--the damage is still done.

EDITED TO ADD: But the< 20 PPM level is considered safe by most researchers.

[IrishHeart]

Ah yes, a magic pill would be very nice. When I was first diagnosed my family doctor actually told me that since I did not have noticable symptoms, I probably wouldn't need to follow the gluten free diet! Yeah for doctors.

I trust this idiot is no longer your doctor?????!!!!

[finlayson]

No, she is no longer my doctor. I would agree with you, Irish Heart, that even a trace amount of gluten would trigger the immune reaction. I can't think why it would not. I choose not to eat in restaurants for this reason, even though that can be an emotionally charged decision at times which family.

[tarnalberry]

IMHO

It does not matter how much gluten is ingested in terms of PPMs or how violently you react or if you do not even react at all. (I personally suffer symptoms for as long as 12 days after CC)

We are all equally affected by the gluten because

the AUTOIMMUNE response is triggered whenever ANY gluten is ingested.

Whether you have instant D or a headache of brain fog or lesions reappear--or if you do not notice a darn thing--the damage is still done.

But that just isn't true. Studies looking for safe-levels find patients who ingest gluten at 20ppm (or some level, depending on the study) with no villainous atrophy and no elevated blood work (and no symptoms). The majority of them, actually.

[IrishHeart]

No, she is no longer my doctor. I would agree with you, Irish Heart, that even a trace amount of gluten would trigger the immune reaction. I can't think why it would not. I choose not to eat in restaurants for this reason, even though that can be an emotionally charged decision at times which family.

Many of us eat out safely at restaurants.(And there are those who disagree with this statement)

You need to pick and choose which ones will be able to accomodate you. Diners are NOT a good choice. They do not have the time or the facilities to make separate meals. They mass-produce food. The IHOP??--not a good place

An upscale restaurant or places that people report on here---like P F Chang's??--they can feed you safely. Many places have employees who have learned how to avoid CC.

You cannot be afraid of living, hon! And unfortunately, with celiac, we may be CCed ocassionally, no matter how vigilant we are. It's just the nature of this beast.

....but it should not make you paranoid or fearful of food. that is no way to live. Just my humble opinion!

[IrishHeart]

But that just isn't true. Studies looking for safe-levels find patients who ingest gluten at 20ppm (or some level, depending on the study) with no villainous atrophy and no elevated blood work (and no symptoms). The majority of them, actually.

yes,I do understand about the <20 PPMs --

Thanks for clarifying this for the OP.

I did not mean to imply that recovery was not possible--sorry if that what was it sounded like. Obviously, I agree that people recover the villi--otherwise, I would still be very sick.

Perhaps my use of the word "damage" was a poor choice.

But it is my understanding that the AI response is re-triggered any time gluten is ingested?

National Digestive Diseases

Information Clearinghouse (NDDIC)states:

"To stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating even a small amount of gluten can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms.

Some people with celiac disease show no improvement on the gluten-free diet. The most common reason for poor response to the diet is that small amounts of gluten are still being consumed. Hidden sources of gluten include additives such as modified food starch, preservatives, and stabilizers made with wheat. And because many corn and rice products are produced in factories that also manufacture wheat products, they can be contaminated with wheat gluten."

Is this incorrect??? The AI response is NOT triggered any time gluten is re-introduced?

Also, I am thinking about this article in particular:

Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore:

"Generally, three to six months of a gluten-free diet may result in normal antibody levels in a new patient. A strict gluten-free diet for more than three months may result in inconclusive serological tests in patients, who have started a diet without any diagnostic test. In this case a gluten challenge should be introduced for a proper diagnosis.

Each patient has different sensitivity to gluten for reasons that are unclear. The period of gluten challenge and the amount of gluten necessary to provoke serological immune response are individually different.

A 0.3 g/kg body weight/day of single gluten challenge causes immunological changes (cellular immunity) in the intestine (J Pediatr Gastroenterol Nutr 1989; 9:176-180) in patients on a gluten-free diet, however, the serological response is much slower."

So, there is an immunological response with any ingestion of gluten, but it may not be enough to appear in seriological testing.

But there is still an AI response, which is all that I was trying to say.

right? please correct me if I am wrong as I would hate to be saying the wrong thing here.

[mamaw]

I believe the pills your daughter's friend is speaking of is maybe Glutenease or one of those type pills.. Many people get the idea that this is a pass to eat gluten but it is NOT... These pills were designed to help the after bomb when some accidentally gets glutened...Some find they help with all the issues after a glutening..others find they are no help ...

I just can't understand why anyone would want to purposely eat gluten after they have been gluten-free & feel so much better...I understand mistakes happen that can't we always can't control

I can say in ten years I've been glutened once......years ago & that was enough for me...

My mantra is " It isbetter to have no knowledge than to have misinformed people sharing wrong information"

mamaw

[silk]

My mantra is " It isbetter to have no knowledge than to have misinformed people sharing wrong information"

mamaw

I agree!

[IrishHeart]

I agree!

IDK if being in the dark is any better than being misguided. Neither are very illuminating or helpful.

I think we have to rely on some accepted science once and a while.

However, people may have differing opinions, and present that information as "fact". THAT can cause confusion, for sure. (for example, those who suggest we can take a pill and eat gluten without any harm or that there are NO safe places to eat out or that there are NO safe packaged foods, etc.)

There are many opinions, all need to be weighed.

We all need to use common sense.

[silk]

IDK if being in the dark is any better than being misguided. Neither are very illuminating or helpful.

I think we have to rely on some accepted science once and a while.

However, people may have differing opinions, and present that information as "fact". THAT can cause confusion, for sure.

We all need to use common sense.

Irishheart, I get the sense that you feel that this conversation was directed at or about you????? I assure that is not the intent or the case here. I was agreeing with regard to the information given to my daughter by her classmate. I am sorry if you got the wrong impression.

[IrishHeart]

Irishheart, I get the sense that you feel that this conversation was directed at or about you????? I assure that is not the intent or the case here. I was agreeing with regard to the information given to my daughter by her classmate. I am sorry if you got the wrong impression.

Oh no,...I was not thinking that at all , hon!!! --I am agreeing with you on all aspects!!

Just reaffirming what was said...about being knowledgable and using our heads!

No magic pills protect us from gluten. (if only!!)

Cheers!!

Beautiful baby, BTW!!!

[silk]

Oh no,... Not at all , hon!!! --I am agreeing with you on all aspects!!

Just reaffirming what was said...about being knowledgable and using our heads!

No magic pills protect us from gluten. (if only!!)

Cheers!!

Beautiful baby, BTW!!!

Thanks! That is my youngest granddaughter. So glad there was no offense taken.

[IrishHeart]

Thanks! That is my youngest granddaughter. So glad there was no offense taken.

absolutely not!!

sometimes printed words (where you cannot see someone's face or hear inflection) can be misunderstood but in this case...I assure you--I meant nothing either--except agreement on this topic of "magical anti-gluten pills " !!

Happy New Year to you.

[tarnalberry]

[quote name='IrishHeart' timestamp='1325437484' post='

So, there is an immunological response with any ingestion of gluten, but it may not be enough to appear in seriological testing.

But there is still an AI response, which is all that I was trying to say.

right? please correct me if I am wrong as I would hate to be saying the wrong thing here.

[IrishHeart]

I don't know that there is a way to say one way or another. If you have serology return to normal, no physical damage, and no symptoms, you're basically saying that no test can demonstrate that you are having an autoimmune response. Could there still be one going on at levels that cant be detected? No one could say, because you can't detect that little of a response.

For a practical matter, I think most of us use serology, physical findings, or symptoms to gauge. For the asymptomatic, this is obviously much harder, and it's a "the best you possibly can" sort of thing.

Yes, and I know that those with no obvious symptoms tell me they have absolutely no way of knowing if they have been glutened. No "barometer" of sorts.

Whereas, I always know for sure. Not sure which of us has the advantage.

I think I'd prefer no reaction, personally, as I have been in hell from gluten, but I could see where some would be tempted to "cheat" if they do not suffer the immediate "tell-tale" consequences.

[finlayson]

I'm one of those celiacs who does not show any symptoms to being glutened. Personally I would rather have a reaction just so I know and can trace it back to a particular food or event. I feel I have to be extra careful (hence my choice not to eat in restaurants). I'm sure all of you people out there who have violent reactions may be envious of me not showing any reaction, but it can be extremely difficult at times to simply not know.

[Gemini]

I'm one of those celiacs who does not show any symptoms to being glutened. Personally I would rather have a reaction just so I know and can trace it back to a particular food or event. I feel I have to be extra careful (hence my choice not to eat in restaurants). I'm sure all of you people out there who have violent reactions may be envious of me not showing any reaction, but it can be extremely difficult at times to simply not know.

Even if there are no typical physical symptoms to warn you that you have ingested gluten, another way to gauge compliance is whether or not you develop any other AI issues. I developed 3 more in the years I did not know I was a Celiac. So, even if you don't feel it, that doesn't mean you aren't sustaining damage that most testing as we know can measure. I don't think any person can claim they are a more sensitve Celiac than anyone else on the diet because of this. You may feel more responses but even if you don't, the inflammation is still there causing damage to other organs that doctors don't test for damage to.

You have to use common sense, minimize the potential damage and watch for other related AI diseases that may occur. If your other AI diseases improve on the gluten-free diet, then you can use that as a gauge you are doing well at avoiding gluten.

[IrishHeart]

I'm one of those celiacs who does not show any symptoms to being glutened. Personally I would rather have a reaction just so I know and can trace it back to a particular food or event. I feel I have to be extra careful (hence my choice not to eat in restaurants). I'm sure all of you people out there who have violent reactions may be envious of me not showing any reaction, but it can be extremely difficult at times to simply not know.

Well, that does explain your hesitation about restaurants. Yet, I do think you might venture out from time to time?

Sometimes, I wish gluten would glow green and make it easy for us all.

[dilettantesteph]

This is a really difficult issue. We have it in our household. My kids and I are very symptomatic and react to low levels of gluten. My husband is a "silent celiac" like the OP. He would never have known except that he was tested due to the kids. He actually has show changes, but they are things like he finds that it is much easier to lift heavy weights at the gym. These are certainly not symptoms that can tell him if a certain food has bothered him. He is going to have his antibodies tested again to see if the typical gluten free diet shared by many on this forum has been adequate for him.

The FDA published a study "Health Hazard Assessment for Gluten Exposure"

Open Original Shared Link

In it is says that different celiacs have scientifically measurable reactions to different levels of gluten.

Whether or not they are aware of these reactions due to obvious symptoms is a whole other thing.

There seems to be two issues, how symptomatic you are, and to what levels you react.

In my opinion, there is a lot more to be understood. I hope the scientists and doctors researching this area get busy.

[GFinDC]

And we know that some people never test positive for antibodies, but they still have celiac. So just because a person doesn't show antibodies in their blood doesn't mean they aren't reacting. That's where I think Kenneth Fine's (Enterolab) stool testing makes sense. He says that the antibodies are concentrated in the gut, not in the blood stream. The antibodies concentrate on the problem area in other words, where the gluten is. I wonder what the ppm limits would look like if they used stool testing instead of blood testing.