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BlessedMommy

By BlessedMommy
in Coping with Celiac Disease

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BlessedMommy Rising Star
BlessedMommy
Posted

I've noticed that there is a trend for people to say that they are sensitive to gluten and then proclaim that they can have a bit or have some predetermined amount because they "just aren't as sensitive as me."

 

I invited one such individual over to my house and started chatting with her about gluten free bread recipes and she said, "Oh well, I'm not as sensitive as you, so I just limit myself to 1-2 slices of regular bread per day."

 

Another person who made a big fuss over how she cleaned her house out from gluten and doesn't allow wheat flour in her house, etc. etc. recently ate 2 helpings of regular party food. (including pasta salad, mini pizzas, dessert, etc.)

 

Is there any actual scientific evidence that some people have a certain tolerance threshhold to gluten and can have a limited amount without health damage? Or is it just something that got made up in the wake of the gluten free fad diet?

 

I don't always even know what to say when someone makes a comment like that. I'm thinking that maybe the best reply when someone says something like that is to gently suggest that they get tested for celiac. So many people don't know that celiac can be asymptomatic or have mild symptoms.

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kareng Grand Master
kareng
Posted

If they are diagnosed with Celiac - then they can't eat any.  I suspect these people just decided they are gluten sensitive or went to some quack "doctor" who wanted to sell them some crazy tests and told them they are sensitive.  I just say something about I actually have Celiac disease and for people with a real medical need, there is no room to cheat.

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

I like that phrase! Good way of explaining it.

SMRI Collaborator
SMRI
Posted

Some people just like the attention too.  I know someone like that :D.  She was tested, all negative, but claims even a bite of "gluten" will set her off, but then find her cheating all the time.  Some people will believe anything they hear/read and do no research to confirm.  I once knew someone who told me her kids were allergic to wood.  Um, really?  I can't imaging how they are still alive sitting on your wood floor or eating at your wood table or just being in a wood framed house. Whatever.  I guess the positive in all of this is there are more, and better, options for those of us that really need to be gluten-free.

 

I guess I would say that I'm not sensitive to gluten, I have a disease that makes gluten lethal to me and even a "little" is an issue.  

chocominties Rookie
chocominties
Posted

I'm sure that some people could be "sensitive" or "less sensitive" or whatever.  Think about allergies--if someone is allergic to peanuts then it could mean that they get a little itchy or that they go into anaphylactic shock.  Someone with lactose intolerance could throw up or they could get a little gassy. 

 

I used to have a certain amount of tolerance for gluten.  Now I have none.  I've been suspecting that I have troubles with dairy, and after a month without it I find that I have a much lower tolerance than I did a month ago.  I might consume dairy four or five times a day in the past, and not necessarily feel bad.  I got incredibly sick the other day from eating a frozen mac and cheese. 

 

What would irritate me in a situation like this is just that people get the impression that gluten problems are like a mild lactose intolerance, where tons of people have it and ignore it because dairy is delicious.  I don't know how often I get asked "Do you ever cheat?"  (No, I'm not a fan of holes in my intestines.  I'm fully continent for the first time in about 20 years and it's AWESOME.)  I hate that there are people who would give the impression that cheating is okay.  Which is why I tend to just say I'm "allergic" rather than "intolerant" or "sensitive" or whatever.  Inaccurate, sure.  But it gives more of a sense of danger, I think.

Georgia-guy Enthusiast
Georgia-guy
Posted

I don't know how often I get asked "Do you ever cheat?"

You cheat on a test, you cheat at a game, you cheat on a real diet. But even though it's called a "gluten free diet" or "celiac diet" it's not a diet for us.....it's a medical treatment. Avoiding all gluten is "prescribed" by our doctors, the same way an inhaler is prescribed for someone with asthma/COPD, or a pace maker is "prescribed" for someone with chronic heart problems. Would someone ask a person with a pace maker "do you ever cheat and turn off/take out the pace maker?"

(I used prescribed in quotes a because a doctor prescribes a treatment no matter what it is, but most people associate the word "prescribed" with a medication written on a piece of paper that is then exchanged for drugs at a pharmacy)

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Georgia_guy, that is one of the best descriptions that I have heard of the gluten free diet. 

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Harpgirl Explorer
Harpgirl
Posted

My grandma is diagnosed with celiac disease. She "cheats" all the time. She was diagnosed in the early 90's and I don't think that she was ever taught how important it was to read labels and avoid cross-contamination. By the time I figured out my symptoms and got educated, her mind was too far gone to explain it to her.

 

I was diagnosed as gluten-intolerant due to a negative blood test. But I still suspect celiac disease because I believe my doctor was incompetent. Compared to Grandma, I'm super-sensitive and cannot tolerate the slightest cross-contamination. But I seem to have become more sensitive the longer I go without gluten. 

 

If the people who "cheat" truly have celiac disease, they probably haven't let their bodies heal, so they don't seem to be as sensitive to gluten. They probably are just as sensitive as you, but they haven't given the treatment a fair chance.

SMRI Collaborator
SMRI
Posted

My grandma is diagnosed with celiac disease. She "cheats" all the time. She was diagnosed in the early 90's and I don't think that she was ever taught how important it was to read labels and avoid cross-contamination. By the time I figured out my symptoms and got educated, her mind was too far gone to explain it to her.

 

I was diagnosed as gluten-intolerant due to a negative blood test. But I still suspect celiac disease because I believe my doctor was incompetent. Compared to Grandma, I'm super-sensitive and cannot tolerate the slightest cross-contamination. But I seem to have become more sensitive the longer I go without gluten. 

 

If the people who "cheat" truly have celiac disease, they probably haven't let their bodies heal, so they don't seem to be as sensitive to gluten. They probably are just as sensitive as you, but they haven't given the treatment a fair chance.

 

Not that it isn't possible that you have Celiac, but lab tests are lab tests and while there is some room for error, they are pretty cut and dried providing they did the correct tests.  Your doctor has little to do with the actual lab tests outside of ordering the test and seeing the results.  Did you see a Celiac specialist?  Did you have a good endoscope done?

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Lab tests are lab tests, but the above poster was gluten free for about a month prior to her tests, which could have affected her results.

Harpgirl Explorer
Harpgirl
Posted

Actually I went gluten free after my blood was drawn. The results came back a month later as negative for celiac. My doctor had already done an endoscopy for my "mystery pain" and never bothered to do a celiac biopsy. When I finally connected the dots to celiac he ordered the blood test. If I hadn't brought it up at all, he would have diagnosed me with Irritable Bowel - AKA, "Got no idea what's wrong with you and I'm too lazy of a doctor to figure it out."

 

Sorry, I'm a bit jaded by that quack.

 

I've learned that quite a number of people with celiac disease have negative blood tests. I just know that gluten makes me absolutely miserable.

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Oh okay. :)

 

Really, I don't care anymore much what my DX is (or isn't). Bottom line is, gluten is poisonous to me and could cause me to get brain damaged and I won't touch it ever again. Good for you for taking charge of your health and doing what you needed to do.

Harpgirl Explorer
Harpgirl
Posted

Oh okay. :)

 

Really, I don't care anymore much what my DX is (or isn't). Bottom line is, gluten is poisonous to me and could cause me to get brain damaged and I won't touch it ever again. Good for you for taking charge of your health and doing what you needed to do.

Thanks :) Yeah, I see it as poison too. So sorry you have the response to gluten that you do! 

 

My hubby is from Kansas, and whenever we go there to visit family, we drive past all the wheat fields and all I see are fields of poison. ;)

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Yeah, no doubt, LOL!

 

A good friend of ours says that for me, Cream of Wheat is "Cream of Death." LOL!

Harpgirl Explorer
Harpgirl
Posted

Yeah, no doubt, LOL!

 

A good friend of ours says that for me, Cream of Wheat is "Cream of Death." LOL!

Hahaha!  :lol:

Serielda Enthusiast
Serielda
Posted

For myself, cheating is not an option.  IMO anyone with this animal knows better and would not  cheat because of the hades it makes our lives. After having other members in my family test positive and then myself I flat out said nope, not even one nibble of anything. I've read up on things enough that I am terrified of things like cancers that could come from not taking care of ones self. I a year ago lost  a loved one to that horrrible disease, and can not bring that kind of sadness and pain to anyone I love when I know darn well that I could have stopped it by just abstaining from  the crud. Besides why cheat? Most of the  gluten-free goodies and food I have had so far in  3-4 months at this has been amazing.

Due to the fact cheating is a non negotible for me, I have had one  count them one friend who well is  now no longer a friend due to disrespect issues who couldn't resist that and went on and on trolling at me to try and make me cheat and finally it turned into a  good bye ala " If you cared about me as a friend you would sure as hades not  ask me to harm myself to convience you? It had other things attached as this individual will not eat properly and take his meds so that he can hold a job and do well in his endevors. Things are to short, and easy come easy go to. I am just glad all my friends that remain are not such rude idiots. I still love the ex friend even after seeing my copies of reports on me, he still  won't accept things are the way they are.

I've noticed that there is a trend for people to say that they are sensitive to gluten and then proclaim that they can have a bit or have some predetermined amount because they "just aren't as sensitive as me."

 

I invited one such individual over to my house and started chatting with her about gluten free bread recipes and she said, "Oh well, I'm not as sensitive as you, so I just limit myself to 1-2 slices of regular bread per day."

 

Another person who made a big fuss over how she cleaned her house out from gluten and doesn't allow wheat flour in her house, etc. etc. recently ate 2 helpings of regular party food. (including pasta salad, mini pizzas, dessert, etc.)

 

Is there any actual scientific evidence that some people have a certain tolerance threshhold to gluten and can have a limited amount without health damage? Or is it just something that got made up in the wake of the gluten free fad diet?

 

I don't always even know what to say when someone makes a comment like that. I'm thinking that maybe the best reply when someone says something like that is to gently suggest that they get tested for celiac. So many people don't know that celiac can be asymptomatic or have mild symptoms.

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

I think that sometimes people also are not educated by their doctor--even if they do have celiac. I knew a celiac (biopsy confirmed) who would happily use shared peanut butter and stuff like that because, "I'm not that sensitive." Apparently his doctor didn't tell him that lack of symptoms didn't equal lack of damage.

mbrookes Community Regular
mbrookes
Posted

I don't think the Celiac blood tests are as reliable as some of you think. My blood tests were "inconclusive", in that one test was totally positive, one was totally negative, one was so-so. Endoscopy, however, showed completely flat villi. Endoscopy is the true test.

SMRI Collaborator
SMRI
Posted

I don't think the Celiac blood tests are as reliable as some of you think. My blood tests were "inconclusive", in that one test was totally positive, one was totally negative, one was so-so. Endoscopy, however, showed completely flat villi. Endoscopy is the true test.

 

 

Maybe yes, maybe no.  My niece was positive on all blood tests and WAY positive, over 100 but was asymptomatic and they did not find any intestinal damage..8 biopsies done too.  Endoscopes are only as good as the person performing them and if they miss the spots where there is damage, it's not accurate either.  The right blood tests are nearly 100% accurate.

GF Lover Rising Star
GF Lover
Posted

I think both of you just confirmed why blood tests AND biopsy are both used to diagnose Celiac.  This is a good thing.  

 

Colleen

  • 3 weeks later...
kelcat Newbie
kelcat
Posted

I think some people like attention. When I went gluten free people kept asking me why? I've also had people tell me they are gluten free & then see them eating gluten. I get tired of explaining that it makes me sick. I find it hard to believe you have celiac or gluten allergy if you can eat it. Most people don't understand how sick it can make us.

BlessedMommy Rising Star
BlessedMommy
Posted
  • Author

Exactly!

 

I've come to the conclusion that gluten free is not, and cannot be a fad. Why? Because I've never seen a person who cleaned all cross contamination from their kitchen, religiously brought their own gluten free food everywhere, and only ate out at restaurants very carefully, do this just for fun. I'm sure that there theoretically could be a person who was that strict who didn't have a medical problem, but in my opinion, they're about as rare as a unicorn.

 

I think that the fad diet is the "gluten light" diet. But a strict gluten free diet is so stringent, that it's highly unlikely that someone would do it just for kicks.

mbrookes Community Regular
mbrookes
Posted

When I am eating out, I always explain to my server that I am not doing "gluten free" as a fad diet. It will really make me very sick. I have been amazed at how many answer with "Oh, I understand. My father-in-law (sister, cousin, friend) has that too. I'll watch your food carefully."

SMRI Collaborator
SMRI
Posted

When I am eating out, I always explain to my server that I am not doing "gluten free" as a fad diet. It will really make me very sick. I have been amazed at how many answer with "Oh, I understand. My father-in-law (sister, cousin, friend) has that too. I'll watch your food carefully."

 

I'll make it clear that it's not something I want to do :D.  I usually first ask for gluten-free and then depending on their reaction to that, I'll add I have Celiac Disease or a gluten allergy or whatever will make the biggest impact on them getting my food to me safe.  I just so rarely eat out now that it's not a huge issue, but sometimes I just don't have a choice.

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