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T.H.

Is It Hard For You To Believe When People React To Different Gluten Levels Than You?

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So, just what it says: if someone claims to react to VERY different gluten levels than you do, is it hard to believe them?

And I mean this for someone either claiming to react to much less gluten, or much more gluten.

In conversation, I've heard both reactions.

- That there is NO WAY someone could react to such a tiny amount of gluten as X.

- And also that there is NO WAY someone could NOT react to such a large amount of gluten as X.

Do you feel like you have a range of gluten that seems feasible to react to, and beyond that it just doesn't make sense? Is your belief based on your own experience? Or on that of your doctor? Literature?

I guess I'm very curious what is shaping our beliefs on this subject, because I hear so much variation in what people are willing to accept in terms of how much gluten can 'really gluten' a celiac.

And a second question - do you find your non-celiac friends/family have very different ideas about how much gluten is safe than your fellow celiacs?


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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No, I don't find it is hard to believe at all. I do not have celiac. I do have food allergies. And I know that the way I react isn't necessarily the same as someone else would react. Daughter is allergic to wheat.

I do find that people who do not have issues with food usually do not understand and they seem to think that a little bit won't/can't hurt.

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I don't know where I stand on this question. Almost the only times I have known I have been glutened is from medications, and who knows how much gluten is contained in those? I also know I reacted to gluten on a supposedly washed cup that I drank out of (now I do know that the elderly lady in question was a rinser, and did not have a dishwasher, so the gluten removal would have been minimal at best,) but in my mind that is for me a small amount of gluten. I realize, Shauna, that it would probably be a lot more significant for you. I am very careful in restaurants, do not eat at fast food joints, and have not experienced a problem eating out. I have a gluten free house. My problems are with things I have no control over. But I have eaten food that others have prepared for me that have not been a problem. The only real problems I have had have been with medications.

I know very few celiac peeps, and most of the people I know do not understand what it's like to have to be so careful with food.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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I guess what is more surprising to me than the amount of gluten is the severity of the reaction. I recently met someone in my grad program who has a much stronger reaction than I do (although my reactions have certainly changed. He's been gluten-free for four years or so and is extremely sensitive; I've been gluten-free for almost exactly a year and my reactions have gotten much more unpleasant now that I'm on the diet).

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As with many subjects, I think one's perspective has to do with one's range of personal expreience, exposure to a range of others and eduacation on the matter.

I was just talking to a mom this weekend who was resistant to the idea that her son's eczema could be caused by a food allergy(my son's is) because he "surely would have other symptoms". Her opinion is in the absence of any testing mind you and her daughter HAS food allergies, but her symptoms are what people think of as classic allergic symptoms. This mom has been taught to, and experienced food allergies in a certain way only so at this time can't embrace anything outside that box.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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No.

I have both gluten intolerance and other allergies. If I were an obvious, hyper sensitive reactor to gluten, perhaps the problem with it would have been more obvious instead of going several decades with all the other health problems developing first. Now that I am off gluten, my other allergies seem to be a lot less reactive. However, in the outside world, I can still welt up spectacularly from some sorts of plants/weeds that other people can have contact with and have no reaction, insect bites, etc.

And now that I've been off of it for years, I can finally tell when I've eaten it, within a half hour, but still suspect I don't react as violently as many people. So what ? I also know I'm more pain tolerant than a lot of people, good thing or I'd have given up a long time ago.

What annoys the heck out of me is when I have a reaction to a manufactured good labeled "gluten free." I know what my reactions are. I tend to eat pretty simply. If my joints are suddenly flaring and my sense of balance is way off and I'm irritable after eating a boxed, manufactured good, gee, what are the odds it was not that. Sorry I don't puke, that doesn't make it less real. And that doesn't mean somewhere along the line something didn't messed this item up, or at least this batch.

I do tend to be a bit skeptical of people who make sweeping pronouncements as to how it takes "x" amount to provoke a reaction .... and then I find out they are normal. Just like I am pretty skeptical of the motivation of some of the so -called health writers for certain Big Name East Coast Publications which have written about celiac and gluten intolerance as a general interest item, and tend to use the words "lifestyle choices." The health editor at MSNBC is also dreadful, I've seen an interview segment she did on the Today Show last year, where she TOTALLY screwed it up with a person asking questions about her newly diagnosed spouse, (something like saying if it were only gluten intolerance he could re introduce it in the future, a really bad mistake) yet there was almost no feedback on it, and she should have issued a public retraction. I was getting the odd feeling she was lumping IBS into the "It's All In Your Head" category and implying that people who thought they were gluten intolerant just needed to be neurotic about something, instead of perhaps being undiagnosed.

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Honestly, yes, I have a hard time believing someone when they say they react to some of the levels I've heard about on this board. As in, I don't understand how it could work that way.

But here's the thing - I don't have to understand or believe. I respect that folks have come to these conclusions for themselves, and that it is their choice to make them. Were I to offer to cook for someone with "that level of sensitivity", I would assume that I would have to cook to *their* specifications, not mine. (I probably wouldn't offer, as I probably couldn't do an adequate job.)

Most importantly, not understanding doesn't mean the other person is wrong. I think most people really don't understand when they say they don't believe, but even if they understand and don't believe, well... we get new understandings of things all the time.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I think it's disingenuous to assume an immune system that's tuned to find single bacteria and virus particles would somehow overlook 20 ppm of gluten. I believe most celiacs who think they can get away with mild CC or eat foods with traces of gluten would feel better and avoid the risk of refractory celiac if they went to a 100% gluten-free diet.

As others mentioned, I've reacted to "gluten-free" foods. Never to every box, but only occasionally. It's uncomfortable enough that I've mostly stopped paying outrageous prices for food that still sometimes makes me sick.

Doctors don't want to push people into a stricter diet because most folks won't follow it. It would also put many so-called gluten-free manufacturers out of business and expose a lot of problems in US food processing. Instead we pretend that traces of CC are OK and scratch our heads wondering why the rate of refractory celiac disease is increasing.

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I do believe people when they have a stronger or milder reaction than I'm familiar with. Each of us are different, our immune systems are in varying stages of strength and the disease itself falls along a range (mild villi atrophy to severe - for example). I have had gluten exposure and should have had a reaction and didn't and then have had horrible reactions to what I can only chalk up to trace amounts. I strongly feel the state of my immune system at the time of exposure determines the outcome. But that's me, and my body, and my experience.

Doctors don't want to push people into a stricter diet because most folks won't follow it.

I see this mentioned on the board a lot and it boggles my mind. Regardless of reaction (mild or severe) it's in our own best interest and health longevity to be 100% gluten-free. Doctors don't tell diabetics to not follow their diet because it's hard. The same should go for us. I guess where one could split hairs is if 'gluten free' labeled manufactured food is safe. I think that's an individual call and up to the person to determine. A dedicated bakery that does not use gluten containing items and operates in a gluten free facility is very safe in my opinion. Food labeled, 'made on a line that is shared with wheat' is very questionable regardless of testing.

Hopefully stricter standards, guidelines and labeling will take the guess work out of the equation.


40 year old former foodie on a quest to feel better!

-IgE to oats and rye

-Diagnosed with
Colitis
via endoscopy/colonoscopy Oct '10

-Following
FODMAP
diet since June '10, Positve
SIBO
test, July '10

-Diagnosed
non-celiac gluten intolerant
June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)

-
Osteopenia
June '10

-
Gluten free
since July '09 &
Soy free
since December '09

-
Dairy free
since '06

-
IBS & Sjogren's
diagnosed '05

-
RA
diagnosed as a toddler

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I have no problem believing there is a wide range of reactions to gluten. after all, silent celiac is just that, and those people walk around eating gluten without any idea they are celiac until they are diagnosed (if).

I also think there are some people with unknown other food intolerances have digestive systems that are already in a state of irritation and can react to many foods because of that existing irritation. And they may think it is gluten causing the symptoms but it might not be.

I see no problem with the idea that some people are very sensitive also, as our bodies are not clones so there should be a variation in reactions. Heck, some of us don't even make IGA antibodies the way I understand it, or they are very lackluster in their ability to make them.

Then there are the people with refractory celiac who have a terrible time due to their systems being in constant antibody overdrive. So there is definitely a wide range of reactions out there.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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I think a lot of people don't want to believe smaller amounts could cause reactions because of their own denial. If they admit someone else reacts to a small amount they might have to consider that those small amounts are harming them silently and consider making a change. Or if they were not diagnosed until they were on death's door, they might not want to be lumped in with people with milder symptoms because their experience was so much harder, or they'd have to be angry about their own disease not being caught sooner. They'd rather invalidate someone else's experience than deal with their own emotions. (like that person on the mythbusters thread)


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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(like that person on the mythbusters thread)

Which thread? I'd love to read this. We watch mythbusters all the time.

They'd rather invalidate someone else's experience than deal with their own emotions.

Well said, and I wholeheartedly agree.


40 year old former foodie on a quest to feel better!

-IgE to oats and rye

-Diagnosed with
Colitis
via endoscopy/colonoscopy Oct '10

-Following
FODMAP
diet since June '10, Positve
SIBO
test, July '10

-Diagnosed
non-celiac gluten intolerant
June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)

-
Osteopenia
June '10

-
Gluten free
since July '09 &
Soy free
since December '09

-
Dairy free
since '06

-
IBS & Sjogren's
diagnosed '05

-
RA
diagnosed as a toddler

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I started a thread because my son wants to see gluten destruction on mythbusters :) Here is a link that has this community's commentary

And here is the link http://community.discovery.com:80/eve/forums/a/tpc/f/7501919888/m/43019274701?f=7501919888&a=tpc&m=43019274701&s=6941912904


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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So, just what it says: if someone claims to react to VERY different gluten levels than you do, is it hard to believe them?

And I mean this for someone either claiming to react to much less gluten, or much more gluten.

In conversation, I've heard both reactions.

- That there is NO WAY someone could react to such a tiny amount of gluten as X.

- And also that there is NO WAY someone could NOT react to such a large amount of gluten as X.

Do you feel like you have a range of gluten that seems feasible to react to, and beyond that it just doesn't make sense? Is your belief based on your own experience? Or on that of your doctor? Literature?

I guess I'm very curious what is shaping our beliefs on this subject, because I hear so much variation in what people are willing to accept in terms of how much gluten can 'really gluten' a celiac.

And a second question - do you find your non-celiac friends/family have very different ideas about how much gluten is safe than your fellow celiacs?

When my daughter went gluten free she removed it as much as humanely possible for months, but in a weak moment took a chance on eating teeny tiny bite of gluteny pizza. Disaster!

Learned never to do that ever again. Thru her own experimentation, she just cannot have any. She limits gluten free breads/cookies/etc, just in case. A friend of hers who claims to be allergic to wheat can eat anything containing gluten and wheat, in mass quantity - and have NO reaction. Lucky? Or is there major damage going on inside? Who knows.

Gluten free is just that: GLUTEN FREE. Who can actually know how much is causing serious damage, but not necessarily the symptoms? Why take a chance on that? Unless you have a little window, or get biopsied repeatedly, you are not going to know how much gluten is causing serious damage, even though you are not symptomatic.

Like those who drink alcohol to excess but seem fine. Damage is STILL going on. To the stomach wall, intestines, LIVER. Them may be able to walk/talk/drive just fine, but what is it doing inside, where the damage takes place?

As for the second question, most of my daughter's friends/family collectively agree that food allergies need to be taken very, very seriously. We have one or two that just can't be bothered but I believe that is a flaw with them personally. ( It's just too complicated to adjust menus to accommodate just one or two members of the family. Nice, huh? Oh well.) The majority of the family/friends are serious. And welcome the chance to offer fresh, non allergen containing foods/drinks. Some go so far as to remove gluten residue on counters, etc and prepare so as not to contaminate.

No offers of a gluten free Thanksgiving yet, though. lol.


"Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them -- every day begin the task anew."

Saint Francis de Sales

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I know I'm not as sensitive as some people on this board. I also know from personal experience if I eat soup with a roux because I am stupid and don't know what roux is (believe me I know now), that I will end up with DH, crippling arthritis and flu like symptoms for two weeks. But my husband is still a gluten-head and he hasn't gotten me sick so far with his glutenous crumbs. (I'm pretty careful)

I have noticed that my husband is feeling less gassy and has lost a lot of weight since I started only preparing gluten free food. But I know he still eats it outside the house. I almost fell out of my chair yesterday when he told me he thought he should have a blood test for celiac to see if he should stop eating gluten. Don't know where that came from. He'll never show up positive, but he might respond nicely to a gluten free diet. But without that positive blood test he'll never ever believe the results. So, yes I know some people can feel better gluten-lite, and some people need to be 100% gluten free.

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