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Are There Various Levels One Can Tolerate Gluten Without Symptoms?


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17 replies to this topic

#1 rubyred

 
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Posted 24 January 2009 - 06:35 AM

I've heard of Celiacs who are extremely sensitive and react to extremely small amounts of gluten and CC. I've also heard of (silent) Celiacs who don't react, or at least show no outward symptoms when exposed to gluten. I'm aware that internal damage is still being done, even if there are no symptoms felt.

My question is - is there a middle ground? Can a Celiac have reactions to gluten, but only when enough is eaten? Like for instance, I seem to not react to very small amounts of gluten or CC. I should say that I have not been diagnosed with Celiac and am not sure if I am "just" (I know it's not just) gluten intolerant or if I really do have Celiac. I am taking my endoscopy results to Dr. Fasano for a second opinion next month. Anyway, I don't purposely eat gluten but I know I'm getting it from small amounts. I live with roommates who are gluten eaters and just know that I have CC issues. I try my hardest but am not 100% gluten free, maybe only 99%. (I know that if I have Celiac, I'm still doing damage even if I can't feel it...that's why I can't wait for my doc's appt!!) Since I'm not reacting everyday, would this point to more of a gluten intolerance issue, opposed to Celiac? Or do some Celiacs only show reactions when enough gluten is eaten?

Thanks for any input....I know I'm seeing Dr. Fasano soon but just thought I'd throw this question out there and see if anyone has personal experience with levels of tolerance to gluten.
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#2 marciab

 
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Posted 24 January 2009 - 06:59 AM

Yes .. I have a friend who can get by with being CC'd on a regular basis, but when it finally hits, he knows he has to back off all possible gluten for awhile. He appears to be very insensitive to gluten where as I get CC'd / sick very quickly.

But, it would be hard to know what extent you've been CC'd if you're eating gluten-free foods since our standards for Gluten free aren't in place yet. Eating out is always a huge risk ...
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Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)
August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...
July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)
Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)
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June 19, 2007 - Positive DQ2, Dx Celiac

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#3 Jestgar

 
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Posted 24 January 2009 - 07:00 AM

Unfortunately, "gluten intolerance" hasn't been sufficiently studied to be able to say if damage is being caused or not. Also, if you consider the biopsy, it doesn't diagnose Celiac, it diagnoses the damage done from Celiac. So a negative biopsy could mean "no", or it could mean "not yet".

I guess the answer is - nobody knows.

All of us live with CC, to some degree. You can only do your best.
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#4 rubyred

 
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Posted 24 January 2009 - 07:11 AM

Unfortunately, "gluten intolerance" hasn't been sufficiently studied to be able to say if damage is being caused or not. Also, if you consider the biopsy, it doesn't diagnose Celiac, it diagnoses the damage done from Celiac. So a negative biopsy could mean "no", or it could mean "not yet".

I guess the answer is - nobody knows.

All of us live with CC, to some degree. You can only do your best.




Thanks for your responses!

Jestgar - I think I was asking more if a Celiac can eat small levels of gluten and not react. I know there is always CC risks, unfortunately. I still use the toaster that my roommates toast bread on. Not ideal, I know :huh: but I don't seem to react to that CC. (any other Celiacs out there that are less sensitive?) But thank you for taking the time to respond. It is greatly appreciated!! I'm trying to learn as much as possible :D
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#5 Jestgar

 
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Posted 24 January 2009 - 07:18 AM

I react to small amounts, but I don't react very strongly. I'm probably less attentive to CC than some of the people that are out for weeks if they get a crumb.

I've adopted the mindset that I'm less reactive because I normally get no gluten. These keeps me on my toes with regard to paying attention to what and where I'll eat.
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"But then, in all honesty, if scientists don't play god, who will?"
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- Ashleigh Brilliant

Leap, and the net will appear.

#6 WW340

 
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Posted 24 January 2009 - 07:21 AM

I know a blood and biopsy positve celiac that does not react to eating a small amount of gluten. Unfortunately for her, she thought she could get by with eating small amounts (not watching for cc). While she was not reacting as far as she could tell, her body was suffering the consequences. She developed further problems, including a fracture due to osteoporosis, thyroid problems, and now GI problems that she is having trouble getting under control.

She is now being very strict with her diet, but the damage is done.
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#7 Lisa

 
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Posted 24 January 2009 - 07:37 AM

After over three years on the diet, I consider myself in "remission". Reaction time can vary and sometimes, not at all.

In my case, I believe it would take repetitive glutenings over an unknown period of time, for me to be symptomatic with digestive issues. I have reacted within a 24 hour period with neuro symptoms, that would make me a bit unpleasant to be around. <_< I could clear a house within minutes. :rolleyes:

You may be symptomatic, just not the way that you expect to be, gluten sensitve or with Celiac.

But,as Jess said, more research is needed.
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#8 sbj

 
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Posted 24 January 2009 - 09:50 AM

I think I was asking more if a Celiac can eat small levels of gluten and not react. I know there is always CC risks, unfortunately. I still use the toaster that my roommates toast bread on. Not ideal, I know :huh: but I don't seem to react to that CC. (any other Celiacs out there that are less sensitive?)

Since you are going to see Dr. Fasano how about a quote from the man himself?

"For all of them the basic [treatment] is a gluten-free diet. But the rules of engagement are different for where you are on the spectrum. That is why a proper diagnosis is extremely important. Celiac disease is an all-or-none proposition. If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf. It's a different story with gluten sensitivity and allergy. Some people can't tolerate a crumb, and others have a threshold that is such that you can tolerate a piece of pizza."

It's very important to know whether you are celiac or not ...

http://www.celiac.co...showtopic=54628
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#9 rubyred

 
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Posted 24 January 2009 - 10:30 AM

SBJ - I think you are misinterpreting what I am saying. Or I'm not being clear enough. Trust me, I am very aware of the dangers of a Celiac eating even half a crumb of gluten. As I said in my original post, I know there is internal damage being done any time gluten is ingested, no matter how much, period.

My question was - is it possible for someone with Celiac to not react outwardly to ingesting small amounts of gluten, like say from CC. I know that they will be reacting internally, but my question was about external symptoms....ones you feel and experience as a result of eating gluten.

I ask because I am trying to find out if I have gluten intolerance or Celiac. I don't seem to be very sensitive to gluten (like from CC). I was wondering if that pointed more toward gluten intolerance, or if other Celiacs were not as sensitive as those who can tell if they have eaten a crumb.
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#10 happygirl

 
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Posted 24 January 2009 - 10:33 AM

Very recently, a stranger and I were talking about Celiac, which she has. She said she can eat a piece of pizza or a burger, but anything more than that, she begins to get symptoms.
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#11 Gentleheart

 
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Posted 24 January 2009 - 10:47 AM

Since you are going to see Dr. Fasano how about a quote from the man himself?

"For all of them the basic [treatment] is a gluten-free diet. But the rules of engagement are different for where you are on the spectrum. That is why a proper diagnosis is extremely important. Celiac disease is an all-or-none proposition. If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf. It's a different story with gluten sensitivity and allergy. Some people can't tolerate a crumb, and others have a threshold that is such that you can tolerate a piece of pizza."

It's very important to know whether you are celiac or not ...

http://www.celiac.co...showtopic=54628



I have high regard for Fasano. So without getting into a big discussion about Celiac vs Gluten Intolerance, does this quote indicate that HE, at least, believes them to definitely be two different diseases and not merely more or less advanced manifestations of the same one? And does TRUE CELIAC mean endoscopy proven damaged villi only or can it be just as elusive as gluten intolerance can? This quote certainly would prove that it's very important to know whether you are celiac or not! It would make a huge difference in how you would conduct your dietary life.
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#12 sbj

 
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Posted 24 January 2009 - 11:40 AM

My question was - is it possible for someone with Celiac to not react outwardly to ingesting small amounts of gluten, like say from CC. I know that they will be reacting internally, but my question was about external symptoms....ones you feel and experience as a result of eating gluten.

I ask because I am trying to find out if I have gluten intolerance or Celiac. I don't seem to be very sensitive to gluten (like from CC). I was wondering if that pointed more toward gluten intolerance, or if other Celiacs were not as sensitive as those who can tell if they have eaten a crumb.

Well of course someone with celiac disease can not react outwardly! All silent celiacs - by definition - are eating sometimes quite large quantities of gluten, for sometimes years on end - without any outward symptoms. I am diagnosed celiac and I could not tell you - for the life of me - if I have eaten any wheat. I have no external symptoms now and never have.

I don't believe you can draw much in the way of conclusions from your lack of symptoms. I would leave a diagnosis to the doctor who is no doubt going to look at celiac panel and biopsy results. In that same article Fasano also states:

Are there other symptoms that help you know it's celiac disease?

No, because some of the symptoms of allergies overlap with celiac disease. The situation becomes even more complicated when you talk about gluten sensitivity. That's a condition where the vast majority of people [have].

What is that?

It's an immune reaction to gluten, but it's not an allergic base and not an autoimmune base like celiac disease. But definitely there are different machineries involved in that. And there are specific ways to diagnose celiac disease and specific ways to diagnose an allergy. There are not yet ways to diagnose a sensitivity.

The fact that you don't have much in the way of symptoms means that you could have any of the three conditions. If you have tested negative by the panel and by biopsy that points more, IMO, towards wheat allergy or gluten intolerance. There is no way to diagnose gluten intolerance. At some point you are going to need to make a decision - do I have celiac or do I have a gluten intolerance? From everything I have read, if you have celiac disease you'd better do your best to avoid any gluten at all. If you are gluten intolerant, and you don't suffer much with symptoms, then you can tolerate some cross contamination. It's an argument I don't want to get into but it appears that, in very general terms, the ingestion of gluten by those who are gluten intolerant does not cause the same sort of damage as does the ingestion of gluten by those with celiac. It's controversial but it would be interesting to hear what Fasano has to say to you so please report back. I hope you do not have celiac disease.
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#13 sbj

 
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Posted 24 January 2009 - 11:53 AM

I have high regard for Fasano. So without getting into a big discussion about Celiac vs Gluten Intolerance, does this quote indicate that HE, at least, believes them to definitely be two different diseases and not merely more or less advanced manifestations of the same one? And does TRUE CELIAC mean endoscopy proven damaged villi only or can it be just as elusive as gluten intolerance can? This quote certainly would prove that it's very important to know whether you are celiac or not! It would make a huge difference in how you would conduct your dietary life.

Hi Gentleheart!

I don't want to put words in the man's mouth but I can offer more. It looks as if they are different conditions because, per the doctor, celiac provokes an autoimmune response, allergy provokes an allergic response, and intolerance provokes an immune (as opposed to autoimmune)response. I don't believe his quotes indicate that one is merely an advanced state - I think his quotes point toward the opposite - they are different things with symptoms that overlap. True celiac does not require endoscopy proven damage and it can be elusive - my research - not sure of Fasano's opinion in that regard. I also think that some who are gluten intolerant need to be just as careful as those with celiac because they sometimes have even worse reactions to gluten. However, if you are like the poster, and it ends up that you are gluten intolerant without celiac disease, then you can tolerate some cross contamination without the same autoimmune response which can lead to lymphoma.

How do you know it's celiac disease and not an allergy to gluten?

It a very important question. We see roughly 1,100 people a year, and a fraction have celiac disease. All of them come claiming they are sick from eating and when they go on a gluten-free diet they feel better. As a matter of fact, there is a spectrum. A reaction to gluten on one end, and the worst-case scenario is the autoimmune reaction of celiac disease. But there is a lot in between.

Are there other symptoms that help you know it's celiac disease?

No, because some of the symptoms of allergies overlap with celiac disease. The situation becomes even more complicated when you talk about gluten sensitivity. That's a condition where the vast majority of people [have].

What is that?

It's an immune reaction to gluten, but it's not an allergic base and not an autoimmune base like celiac disease. But definitely there are different machineries involved in that.


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#14 Jestgar

 
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Posted 24 January 2009 - 01:05 PM

From everything I have read, if you have celiac disease you'd better do your best to avoid any gluten at all. If you are gluten intolerant, and you don't suffer much with symptoms, then you can tolerate some cross contamination.

I have never seen any research that has investigated damage to the body caused by 'gluten intolerance'.

Lack of study does not mean lack of existence.

To suggest to anyone that they can eat gluten and suffer no harm is irresponsible. You have no way of determining what damage any individual is, or isn't doing to themselves by consuming a substance that may, or may not be harmful to them.
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#15 sbj

 
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Posted 24 January 2009 - 01:59 PM

I have never seen any research that has investigated damage to the body caused by 'gluten intolerance'. Lack of study does not mean lack of existence. To suggest to anyone that they can eat gluten and suffer no harm is irresponsible. You have no way of determining what damage any individual is, or isn't doing to themselves by consuming a substance that may, or may not be harmful to them.

In that same article Dr. Fasano says:

Celiac disease is an all-or-none proposition. If you go on a 99.9 percent gluten-free diet, that 0.1 percent is perceived by the immune system as something dangerous there. It can't distinguish between a crumb and an entire bread loaf. It's a different story with gluten sensitivity and allergy. Some people can't tolerate a crumb, and others have a threshold that is such that you can tolerate a piece of pizza.

I said tolerate (I didn't use the word harm), in the context of cross contamination. This is almost precisely the same as Fasano, who says tolerate in the context of a piece of pizza. Irresponsible, indeed! OTOH, to suggest that others avoid a doctor-recommended endoscopy is, IMO, irresponsible.
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