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Do People Try To Make You Prove Your Intolerance?


Juliebove

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Juliebove Rising Star

I have not seen this too much here, thankfully.  But I sure have on other forums elsewhere and sometimes even in real life.  Things like...

 

Are you sure you can't have dairy?  Why don't you try it again!  Who diagnosed you?  Oh!  That's not a *real* Dr.  They did the wrong test!  That test is not legitimate!  Sorry to tell you this but you just wasted your money!  You can't believe those test results.  Too many false positives!  On and on and on like that.  Have even seen people attack other people for their symptoms and try to tell them that they are psychological and can't be related to food! 

 

This whole thing rather sickens and saddens me.

 

Sometimes we don't know the hows and whys of why something makes us sick.  We just know that it does.  Like me, with garlic.  I can handle a small amount of it.  I generally don't cook with it unless I am making something for my garlic loving Italian husband and often when I do it is just for him.  I am taking deodorized garlic capsules again.  Tried them years ago but can't remember why.  But after discovering bleeding in my eyes due to diabetes am trying anything and everything purported to strengthen the veins.  And so far so good in the stomach department.  But if I eat too much garlic, I get bad stomach pains.  It isn't an allergy and it isn't an intolerance.  I just know that I can't eat a lot of it.

 

But if a person tells me that a certain food doesn't agree with them, the reason why doesn't really matter to me.  Oh, I will listen if they want to tell me why.  Because stuff like this is of interest to me.  But I would never tell someone something like...  Oh but if you eat that, at least it won't *kill* you like *my* legitmate allergy would do to *me*!  Note that I am just repeating what I've heard others say or have seen written.  I myself do not have actual IgE allergies to food.  It just annoys me that some of these people think they are either better than *we* are because they have no food issues.  Or that their food issues are more serious than ours are.  And yes, I know that celiac does cause damage.  Celiac is not my issue.  In no way do I want to demean it.  I just think that for the rest of us with food issues, our food issues are just as real and serious to us (and by serious I do not mean necessarily damaging or life threatening but to be taken seriously) as yours are to you!  If you know what I mean.

 

Have you ever run across people like this?  They drive me nuts!


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Adalaide Mentor

Weirdly enough, I ran into one on Saturday at the gluten-free Expo. I was checking out a shake which I shouldn't have bothered because they all have soy right? But I was like maybe one is in existence that doesn't and this is it and I can taste it for free and it won't taste like crap! Nope, soy.

 

Now, I'll explain quick what my problem is with soy. I have a condition called idiopathic intercranial hypertension. Part of my treatment is following a low tyramine diet and avoiding trigger foods that cause me to produce obscene amounts of cerebrospinal fluid (CSF) in a very short amount of time. One of those foods for me is soy. It's tricky for me because soy lecithin doesn't bother me, but soy oil does so regular allergen labeling is not accurate for me and I have to count on the actual ingredient list. (Soy oil is not required to be listed as an allergen which is terribly frustrating for me.) If an episode is triggered, I will get a blinding migraine, nerve pain beyond imagining down the left side of my body and will lose vision in my left eye. The key being the vision loss. My eye doctor has warned me that my blood vessels in my right eye are so intertwined and twisted around each other that if my condition ever starts affecting my right eye also it could be immediately and permanently catastrophic. (He didn't expound but I got the idea.) Without that complication, I am at risk of permanent vision loss in my left eye.

 

Keeping that in mind, one of the guys at the shake booth asked me what my problem is with soy. I rattled off the name of my condition, that it is managed with diet and said in a quite sarcastic but joking and light tone that it's "fun." He said he wouldn't use that word to describe it, it was as if sarcasm and humor were things he didn't understand. He then went on to explain all the health benefits of their shakes and how they have helped so many people and that maybe if I just tried them I would find out that the soy in them wouldn't be a problem because somehow magically because it's in that particular shake it wouldn't make my day the most horrid day ever. I've rarely ever wanted to hit someone so much in all my life. Instead I smiled and nodded and walked away and didn't let him ruin my day.

 

But yes, apparently if you put soy in a shake it magically won't make me blind for a day or 3 or risk permanent injury to me... I just can't fathom how it is that of all the places in the world I could run into this kind of twit, I managed to find one there. Besides, what kind of jerk tries to talk someone into eating food that will make them sick? None of us go around trying to talk people into eating rat poison, because just a little taste won't make you that sick.

1desperateladysaved Proficient

I  do get bothered when people question me in detail about my limitations, because they doubt them.  There is also the ones that give you dirty looks or out and out gasps when you need to ask about the ingredients in the foods!  Often, I think it does stem out of a honest concern for me.  Yesterday, I realized someone knew that I couldn't have grain.   He thought of a 10 grain cereal recipe and began with several grains.  I shook my head as he went down the list and in the end I could have flax and sesame.  He didn't have a malicious intent, I think it didn't register or he didn't understand it.  That is what I usually try to think when people make mistakes such as this.  They don't understand, so if I can drop the subject, I do.

 

 I have been thinking about this quite a bit lately and figure that I have been too concerned about what others feel about my reactions.  I think that I am the "expert" on my own reactions; I know when I have them.   I may not always understand them or where they come from, but nobody can tell me whether I had a reaction or not.  I can't afford to worry about whether people will trust me about it.  I need to make the decisions that make my healing possible.  It is working, so I can just trust my judgment!  When hearing about other people's strange reaction I just trust what they say and feel compassion or try to tell remedies that have worked for me.  Sometimes, a pat on the back or to know another has felt the same is all they need.

 

.

StephanieL Enthusiast

I think people think it's all or nothing is the thing. They don't get that there is a "spectrum" of food issues so to speak.  

That said, standard AND alternative testing for allergies and intolerances is really really really scientifically sketchy at best and quackery at worst.  I would trust someone saying "it doesn't agree with me" over some of the alternative testing because of my research on things but if they did the testing BECAUSE of how they were feeling, I would trust that. I *do* get frustrated that the words get muddled and lose meaning though.  Having a child who does suffer from several life threatening food allergies,when someone says they "get it" because they are lactose intolerant it's really frustrating.  It is NOT the same thing so please, don't suggest that it is.  My vegan in-laws pull this. I'm sorry but your lifestyle choice doesn't make me feel bad for you when you can't eat something when you are out. It's unfortunate there isn't an option but that is your CHOICE.  Obviously things like allergies, intolerances and other medical conditions are not the same but they do vary in severity.

IrishHeart Veteran

Having developed a problem with high histamine foods, soy, MSG, food dyes and other chemicals in foods  along with celiac, I can say that I do understand how difficult it is to try and explain things to people, especially when I have already explained what celiac is, what gluten is and why I simply cannot just "try something" they want me to try---when I do not know the source.

 

If the person seems interested, I will explain it briefly.

 

If the person is already yawning when I start my first sentence....I simply say

"I really can't try (fill in the blank) because it gives me grief .....but thanks anyway."

 

I really do not think any of us with health issues (or our children with health issues) owe anyone any explanations for why we

eat the way we do or why we turn down things offered to us.

 

We do it because we have to. As Stephanie points out, it's not a choice. 

bartfull Rising Star

"Are you sure you can't have dairy? Why don't you try it again! Who diagnosed you? Oh! That's not a *real* Dr. They did the wrong test! That test is not legitimate! Sorry to tell you this but you just wasted your money! You can't believe those test results. Too many false positives! On and on and on like that. Have even seen people attack other people for their symptoms and try to tell them that they are psychological and can't be related to food!"

 

If anyone said any of those things to me they would be shown the door. RIGHT NOW!

LauraTX Rising Star

With my myriad of health problems, I generally don't talk about them to strangers when I don't have to other than "I lack part of my immune system don't be sick around me."  People always read something on the internet or see a commercial on TV and that makes them an expert.  Their sister/friend/grandma/cat had that and they cured it with this magical treatment!  

 

People do this with every ailment.  My dad, bless his soul, passed away from ALS (Amyotrophic Lateral Sclerosis AKA Lou Gehrigs disease) a few years ago.  Before he looked visibly sickly and had to use a wheelchair, he would tell people what he had, saying it was a fatal illness with no cure or effective treatment.  Then people will say things like "Oh yeah I have weakness in one arm, too, I know how it feels."  You can really tell if people are actually listening or not due to some of their responses.  He couldn't comprehend how people can compare anything to his death sentence.

 

If you are in my house, you will respect the fact that you cannot have gluten, you will not smoke on my property because even the smell on you when you walk inside makes my asthma go off, and you need to wash your nasty hands so you don't get me sick, because a 2 day cold to you is 4 weeks of suffering to me.  I don't mind inquiries and dumb questions, I try to be patient, but if you are disrespectful of things I need to do for my health, I would show anyone the door, I don't care who it is.  Outside there is more I will tolerate, but when people start telling you their expert medical opinion I just tell them, I have it handled, I only take medical advice from professionals.  Usually that makes them hush.


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Celtic Queen Explorer

Funny you should bring this up.  I am going through "an issue" with my mother in law right now.  I've been gluten-free for 2 years.  She knows this.  But lately she's been having issues with it.  Unfortunately we both have strong personalities and I have a feeling the whole situation will come to a head soon with a large fight.

 

Our house is semi-gluten free.  We only have bread and beer in the house and my family knows to be careful with both.  They don't mess with my peanut butter or my butter dish.  And if they want a sandwich, they have to make it themselves.  And they also know that anything I am cooking for the family will be gluten free.

 

I just got back from a week at the beach with my entire family. My son is seven.  At home when he wants a pb&j, either his father makes it for him or he makes it himself.  My husband had to leave early from vacation, so when DS wanted a sandwich, he had to make it himself.  He knows how.   My MIL threw a fit and acted like I was abusing the boy because I was making him fix his own sandwich.  And she doesn't get it why I don't want to touch bread in any way, shape or form.  I'd ask my husband to grab a bun for DS's hot dog and MIL will make snarky little comments like, "We need to go buy you some wipes so that you can touch the bread and then wipe your hands."  Ugh, like I would want to touch poison and "just use some wipes afterwards" to get it all off.  And hubby could care less about fixing sandwiches or grabbing buns.  He doesn't mind.  DS even knows to wash his hands afterwards and to try and not get me sick.

 

She also kept making little comments about what I was eating.  I brought a bunch of my own food with me, so I wouldn't have to worry about being cross-contaminated by the 5 gluten-eating kids who were there, plus all the adults.  So she would fix spaghetti and say, "I know you don't want any of this."  Ummm...no, I really don't because I'd rather not be sick for 6 weeks.  My SIL was watching all this go down.  We were in the car by ourselves one night and she said to me, "It seems like mom is testing  you about the gluten thing.  It's almost like she doesn't really believe that you can't eat stuff and have to be as careful as you are."   You would think after two years of watching me bring my own food with me, turn down food from people, asking about gluten free items every time we go out to eat, changing my eating habits, etc, you would think she would finally get it. 

 

But I also think part of the problem is that she glutened me one time and really hasn't gotten over that.  She was making her traditional Christmas eve dinner of shrimp.  It's naturally gluten free, but she served it in a bowl that she had used to make bread in before and I got sick on the way home from her house.  I can't remember if I mentioned it to her or if my husband did, but ever since then she's been a little crazy about the gluten thing.  Almost like she doesn't believe I got sick at her house.

YouAreWhatYouFeat Newbie

I have been diagnosed with Latent Celiac Disease and I had Leaky gut Syndrome. When I told everyone, I recieved comments like, "That's not even real....Iv'e never heard of it" and "Wow, a little won't kill you....you have had gluten for how many years?" Then I was in the store looking for yeast free bread since the protein in yeast is so similar to that in gluten that your body reacts the same way to it. My boyfriend of over 5 years said to me, "Oh god, this is just another little phase of yours." I think the problem is that there isn't enough education on Celiac or how gluten effects your body. This way, all of us with real isssues don't feel like we are making up a problem or something. Thankfully, my boyfriend and others around me have been alot more supportive recently! I guess the 6months pregnant look, gas, and other not so pretty symptoms finally proved to them why I need to be very careful about what I eat.

bartfull Rising Star

"Then I was in the store looking for yeast free bread since the protein in yeast is so similar to that in gluten that your body reacts the same way to it."

 

Actually, that is not true. You may, because of the leaky gut, have trouble with yeast but I assure you, many if not most celiacs can eat yeast with no problems.

Adalaide Mentor

Last I checked having a kid make their own sandwich isn't some sick, twisted form of child abuse. By the time my daughter was 5 she had pushed and pushed me so far with wanting to be self-sufficient that I was letting her use the microwave a little with some supervision. And... not super sharp paring knives to cut things like strawberries and other not super hard things. Aren't kids supposed to learn their way around a kitchen?

 

If my husband is home and he wants something that is gluteny I make him touch it. I'm not going to touch it then have to wash my hands. I'm already surprised that I don't have cracked and bleeding hands from how often I have to wash them. Wipes won't magically get rid of gluten in a way that washing your hands wouldn't take care of about a million times better. The whole point is, why bother if someone better suited to the task is standing right there. Your MIL sounds like a real winner. (I may have a lot of pent up MIL hate atm and am willing to aim it at any moderately apt target.)

IrishHeart Veteran

since the protein in yeast is so similar to that in gluten that your body reacts the same way to it.

 

I have never heard of this or found it in any medical literature about celiac, hon.,

"Then I was in the store looking for yeast free bread since the protein in yeast is so similar to that in gluten that your body reacts the same way to it."

 

Actually, that is not true. You may, because of the leaky gut, have trouble with yeast but I assure you, many if not most celiacs can eat yeast with no problems.

 

I agree!

YouAreWhatYouFeat Newbie

It is called cross confusion: Open Original Shared Link

 

Yeast, dairy, and corn are all suspects of this. I have heard this by a couple popular doctors in the Celiac community. Also, I know by how I feel when I eat all 3 that it's true lol

kareng Grand Master

I'm sorry if yeast, dairy and corn bother you, but it isn't a gluten reaction.

 

I think you should get your info from real doctors and Celiac researchers.

 

Open Original Shared Link

 

No  mention about not eating yeast, etc:

 

Open Original Shared Link

 

"What is the treatment for celiac disease?

There are no drugs to treat celiac disease and there is no cure. But celiacs can lead normal, healthy lives by following a gluten free diet. This means avoiding all products derived from wheat, rye, and barley.

What are the recommended blood tests to diagnose celiac disease"

 

 

Open Original Shared Link

IrishHeart Veteran

It is called cross confusion: Open Original Shared Link

 

Yeast, dairy, and corn are all suspects of this. I have heard this by a couple popular doctors in the Celiac community. Also, I know by how I feel when I eat all 3 that it's true lol

 

 

You really should understand that this man is not a doctor.

There is no validity to "cross-reactors" to gluten.

NONE.

 

And this is posted at the bottom of the page you reference on his website as "medical info" Check it out.

 

Disclaimer: The contents of this site are for educational purposes only. Nothing here should be construed as medical advice. Nothing here is a substitute for actual medical care. Consult a qualified healthcare professional.

bartfull Rising Star

Karen is right. There are TONS of celiacs who eat corn and soy and dairy and yeast with no problems at all! SOME of us have additional intolerances, but even if these foods make us feel crappy, they are not true gluten reactions. I, for example, am intolerant to corn. But my reactions to corn are skin related, while gluten has me running to the nearest restroom. And dairy? I eat plenty of white cheddar and a big dish of ice cream every night. No problems at all.

 

There is a lot of misinformation out there on the internet. We all need to get our info from reputable sources, such as the ones Karen posted. Plus, think about it - why would any company risk its reputation and its sales by selling "gluten-free" foods that contain corn or yeast or soy or dairy, if it were going to make celiacs sick? Wouldn't make any sense, would it? They'd be out of business in a hurry.

 

Stick around and read some of our stories. Check out the sites Karen posted. You'll learn a lot, and maybe we can even help you figure out your other intolerances. Some of us lose foods for a while, but once we heal we get them back. I hope this is true for you and that you will soon be feeling better. :)

YouAreWhatYouFeat Newbie

You really should understand that this man is not a doctor.

There is no validity to "cross-reactors" to gluten.

NONE.

 

And this is posted at the bottom of the page you reference on his website as "medical info" Check it out.

 

Disclaimer: The contents of this site are for educational purposes only. Nothing here should be construed as medical advice. Nothing here is a substitute for actual medical care. Consult a qualified healthcare professional.

All I am suggesting is that you keep an open mind about this before shutting it down. Have you researched this before you said it wasn't true? Have you tried eating corn, dairy, and yeast in one meal and documented any changes in how you feel? There are numerous sources of this information, not just from Dr.Clark. I am open minded to the fact that it isn't true, but let's make sure that it isn't before we shut it out. I am going to the gastroenterologist this week and will ask him. Here is another source of infor with the same thing. I will just keep finding more sources for you. There are foods that are cross confused with gluten. Here is a list of foods that can be confused:

 

Open Original Shared Link

Juliebove Rising Star

Weirdly enough, I ran into one on Saturday at the gluten-free Expo. I was checking out a shake which I shouldn't have bothered because they all have soy right? But I was like maybe one is in existence that doesn't and this is it and I can taste it for free and it won't taste like crap! Nope, soy.

 

Now, I'll explain quick what my problem is with soy. I have a condition called idiopathic intercranial hypertension. Part of my treatment is following a low tyramine diet and avoiding trigger foods that cause me to produce obscene amounts of cerebrospinal fluid (CSF) in a very short amount of time. One of those foods for me is soy. It's tricky for me because soy lecithin doesn't bother me, but soy oil does so regular allergen labeling is not accurate for me and I have to count on the actual ingredient list. (Soy oil is not required to be listed as an allergen which is terribly frustrating for me.) If an episode is triggered, I will get a blinding migraine, nerve pain beyond imagining down the left side of my body and will lose vision in my left eye. The key being the vision loss. My eye doctor has warned me that my blood vessels in my right eye are so intertwined and twisted around each other that if my condition ever starts affecting my right eye also it could be immediately and permanently catastrophic. (He didn't expound but I got the idea.) Without that complication, I am at risk of permanent vision loss in my left eye.

 

Keeping that in mind, one of the guys at the shake booth asked me what my problem is with soy. I rattled off the name of my condition, that it is managed with diet and said in a quite sarcastic but joking and light tone that it's "fun." He said he wouldn't use that word to describe it, it was as if sarcasm and humor were things he didn't understand. He then went on to explain all the health benefits of their shakes and how they have helped so many people and that maybe if I just tried them I would find out that the soy in them wouldn't be a problem because somehow magically because it's in that particular shake it wouldn't make my day the most horrid day ever. I've rarely ever wanted to hit someone so much in all my life. Instead I smiled and nodded and walked away and didn't let him ruin my day.

 

But yes, apparently if you put soy in a shake it magically won't make me blind for a day or 3 or risk permanent injury to me... I just can't fathom how it is that of all the places in the world I could run into this kind of twit, I managed to find one there. Besides, what kind of jerk tries to talk someone into eating food that will make them sick? None of us go around trying to talk people into eating rat poison, because just a little taste won't make you that sick.

I avoid most forms of soy because I had a thyroid condition.  Although I still have a goiter, I am not hypo or hyper like I used to be.  I used to eat a lot of soy too. 

 

Some lady handing out samples of something tried to give me one.  Can't remember for sure now what it was, but I do think it was shake which I wouldn't have taken even if I could have it because I don't like the texture of shakes. 

 

When I told her that I couldn't have soy, she asked why and then gave me a skeptical look and said that she didn't know of a connection between soy and thyroid.  And apparently it is a rather complicated one.  All I know is once I stopped the Tiger's Milk bars, the roasted soybeans, Boca burgers and soy bacon, my hypo and hyper problems went away.

Juliebove Rising Star

I  do get bothered when people question me in detail about my limitations, because they doubt them.  There is also the ones that give you dirty looks or out and out gasps when you need to ask about the ingredients in the foods!  Often, I think it does stem out of a honest concern for me.  Yesterday, I realized someone knew that I couldn't have grain.   He thought of a 10 grain cereal recipe and began with several grains.  I shook my head as he went down the list and in the end I could have flax and sesame.  He didn't have a malicious intent, I think it didn't register or he didn't understand it.  That is what I usually try to think when people make mistakes such as this.  They don't understand, so if I can drop the subject, I do.

 

 I have been thinking about this quite a bit lately and figure that I have been too concerned about what others feel about my reactions.  I think that I am the "expert" on my own reactions; I know when I have them.   I may not always understand them or where they come from, but nobody can tell me whether I had a reaction or not.  I can't afford to worry about whether people will trust me about it.  I need to make the decisions that make my healing possible.  It is working, so I can just trust my judgment!  When hearing about other people's strange reaction I just trust what they say and feel compassion or try to tell remedies that have worked for me.  Sometimes, a pat on the back or to know another has felt the same is all they need.

 

.

That multi grain thing really gets me!  I can't have rye or oats and daughter can't have flax.  If it's multi grain, chances are those things are going to be in there.  People also don't get that we won't eat things if we don't know what is in them.

Juliebove Rising Star

"Are you sure you can't have dairy? Why don't you try it again! Who diagnosed you? Oh! That's not a *real* Dr. They did the wrong test! That test is not legitimate! Sorry to tell you this but you just wasted your money! You can't believe those test results. Too many false positives! On and on and on like that. Have even seen people attack other people for their symptoms and try to tell them that they are psychological and can't be related to food!"

 

If anyone said any of those things to me they would be shown the door. RIGHT NOW!

Thankfully I don't get a lot of that in real life.  I do get some. But I have seen it a lot on the Internet.  I don't care if they don't believe in the testing methods I used.  I only know that since I stopped eating the various foods, I am no longer sick all the time.  Lots of maladies cleared up.  So clearly to me, I can't have those foods.

Juliebove Rising Star

Funny you should bring this up.  I am going through "an issue" with my mother in law right now.  I've been gluten-free for 2 years.  She knows this.  But lately she's been having issues with it.  Unfortunately we both have strong personalities and I have a feeling the whole situation will come to a head soon with a large fight.

 

Our house is semi-gluten free.  We only have bread and beer in the house and my family knows to be careful with both.  They don't mess with my peanut butter or my butter dish.  And if they want a sandwich, they have to make it themselves.  And they also know that anything I am cooking for the family will be gluten free.

 

I just got back from a week at the beach with my entire family. My son is seven.  At home when he wants a pb&j, either his father makes it for him or he makes it himself.  My husband had to leave early from vacation, so when DS wanted a sandwich, he had to make it himself.  He knows how.   My MIL threw a fit and acted like I was abusing the boy because I was making him fix his own sandwich.  And she doesn't get it why I don't want to touch bread in any way, shape or form.  I'd ask my husband to grab a bun for DS's hot dog and MIL will make snarky little comments like, "We need to go buy you some wipes so that you can touch the bread and then wipe your hands."  Ugh, like I would want to touch poison and "just use some wipes afterwards" to get it all off.  And hubby could care less about fixing sandwiches or grabbing buns.  He doesn't mind.  DS even knows to wash his hands afterwards and to try and not get me sick.

 

She also kept making little comments about what I was eating.  I brought a bunch of my own food with me, so I wouldn't have to worry about being cross-contaminated by the 5 gluten-eating kids who were there, plus all the adults.  So she would fix spaghetti and say, "I know you don't want any of this."  Ummm...no, I really don't because I'd rather not be sick for 6 weeks.  My SIL was watching all this go down.  We were in the car by ourselves one night and she said to me, "It seems like mom is testing  you about the gluten thing.  It's almost like she doesn't really believe that you can't eat stuff and have to be as careful as you are."   You would think after two years of watching me bring my own food with me, turn down food from people, asking about gluten free items every time we go out to eat, changing my eating habits, etc, you would think she would finally get it. 

 

But I also think part of the problem is that she glutened me one time and really hasn't gotten over that.  She was making her traditional Christmas eve dinner of shrimp.  It's naturally gluten free, but she served it in a bowl that she had used to make bread in before and I got sick on the way home from her house.  I can't remember if I mentioned it to her or if my husband did, but ever since then she's been a little crazy about the gluten thing.  Almost like she doesn't believe I got sick at her house.

Oh yes!  I get that too.  "It won't hurt you to TOUCH it!"  Well, yes.  I get a rash.  So I won't.

Juliebove Rising Star

I have been diagnosed with Latent Celiac Disease and I had Leaky gut Syndrome. When I told everyone, I recieved comments like, "That's not even real....Iv'e never heard of it" and "Wow, a little won't kill you....you have had gluten for how many years?" Then I was in the store looking for yeast free bread since the protein in yeast is so similar to that in gluten that your body reacts the same way to it. My boyfriend of over 5 years said to me, "Oh god, this is just another little phase of yours." I think the problem is that there isn't enough education on Celiac or how gluten effects your body. This way, all of us with real isssues don't feel like we are making up a problem or something. Thankfully, my boyfriend and others around me have been alot more supportive recently! I guess the 6months pregnant look, gas, and other not so pretty symptoms finally proved to them why I need to be very careful about what I eat.

Oh yes, the kill you thing!  Lots of things won't kill you.  But they are not pleasant.  I suppose I could stick needles in my eye.  That problably won't kill me either.  Why do people have to be so extreme?

IrishHeart Veteran

All I am suggesting is that you keep an open mind about this before shutting it down. Have you researched this before you said it wasn't true?

 

That's all I do is research, hon. :)

I have told you there is no evidence of foods "cross-reacting" like gluten. The leading celiac researchers have made this clear as well..

 

If you feel those foods bother you, don't eat them. 

But to say they are "cross-reactors with gluten" so celiacs cannot eat them--- is just plain incorrect.

 

Karen has provided the links for you to read.

If you wish to believe random blogs on the internet, that's your choice, of course.

 

I wish you all the very best as you heal.

kareng Grand Master

All I am suggesting is that you keep an open mind about this before shutting it down. Have you researched this before you said it wasn't true? Have you tried eating corn, dairy, and yeast in one meal and documented any changes in how you feel? There are numerous sources of this information, not just from Dr.Clark. I am open minded to the fact that it isn't true, but let's make sure that it isn't before we shut it out. I am going to the gastroenterologist this week and will ask him. Here is another source of infor with the same thing. I will just keep finding more sources for you. There are foods that are cross confused with gluten. Here is a list of foods that can be confused:

 

Open Original Shared Link

 

 

Yes.  I have eaten all those things in one meal and by  themselves.  No problem. 

 

On this Forum, we ask that you provide reliable research to back up any claims that are not widely accepted.  Posting random blogs and websites that sell a product are not medical or scientific proof.   I went to the International Celiac Disease Symposium because I wanted to learn more about my disease.  If you were there, you heard many times the doctors and researchers saying there is no valid scientific evidence for "cross-reactivity" in Celiac Disease.

Celtic Queen Explorer

 

Your MIL sounds like a real winner. (I may have a lot of pent up MIL hate atm and am willing to aim it at any moderately apt target.)

Adalaide, sounds like we need to get together over a few gluten-free glasses of wine and swap MIL stories :D 

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    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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