What Are The True Risks Of Eating Gluten?

[Canadian Karen]

There has been more than one person here that has made that comment. It really makes you wonder what is the lessor of two evils...... Those of us who have "built in gluten meters", pay the price every time we "get glutened", but then, for those who don't get symptoms when they ingest gluten, who knows years down the road, the price they pay just might be worse than all of our "gluten episodes" put together...... Either way, it sucks!!!!

You didn't comment on your picture! Is that you? My daughter would give anything to be able to swim with a dolphin!

Karen

[tarnalberry]

I'll stick with it though...I even bought a new grill so I can start eating more meat. The thing I hate is that I was considering giving up meat altogether before the diagnosis, but I don't see myself doing that now!

There are a number of sites that specifically support vegetarian celiacs. You can still do it if you want to. (In fact, most gluten-free flours/grains have more fat and protein than wheat anyway. And a better protein profile.)

[mmm..gluten]

There are a number of sites that specifically support vegetarian celiacs.  You can still do it if you want to.  (In fact, most gluten-free flours/grains have more fat and protein than wheat anyway.  And a better protein profile.)

Too late now...I already bought a 36,000 btu Weber!

BTW, your other post was excellent.. I just figured I wouldn't reply to it and waste bandwidth unnecessarily!

[Canadian Karen]

Let us know when the BBQ is! We'll be there!!!! lol!

Karen

[mmm..gluten]

There has been more than one person here that has made that comment. It really makes you wonder what is the lessor of two evils...... Those of us who have "built in gluten meters", pay the price every time we "get glutened", but then, for those who don't get symptoms when they ingest gluten, who knows years down the road, the price they pay just might be worse than all of our "gluten episodes" put together...... Either way, it sucks!!!!

You didn't comment on your picture! Is that you? My daughter would give anything to be able to swim with a dolphin!

Karen

Yep, that's me. I have tons of dolphin pics, as I see dolphins quite frequently. I won't be guilty of OT posting though, since Kaiti is looking for a good excuse to get rid of me, so let me close with "dolphins are absolutely gluten free".

[KaitiUSA]

I'm not looking for a good excuse to get rid of you...I know exactly where you are coming from as I said I was there at one point. I hold nothing against you so where did you get that from that I have something against you?

I didn't even mean to come across like that ...as I said before I'm not against you I'm on your side here. I'm on here to help people. I don't want anything bad to ever happen to any of you.

I understand when you don't have the symptoms like some people it may be harder to follow since you don't feel immediate effects.

And responding to your previous post where you said your expected to play the "poor me" syndrome. That's what we try to prevent...we don't have it bad at all and don't need to play that game. We could have it alot worse. A while back I posted on this lady I know who is 41 and a cancer survivor...well she found out that she now has it again and it spread and she had 3 young kids below the age of 6...

and we have mission trips every year to Honduras and they have absolutely nothing and when I see these types of things...I have no right to complain..I have things good...celiac disease is very controllable

[skbird]

Another thing to consider is that you may develop a more sensitive reaction to gluten as time goes on. I just felt generally crummy most of the time before going gluten free. I had some intestinal issues and some mood/neurological issues, but would not have thought they were connected. After going gluten free I had hidden gluten a few times and felt bad for a day or two, migraines, etc. But now when I have something that was not overtly containing gluten but cross-contaminated (at a restaurant, or bread crumbs on the counter) I have gotten sick for over a week, feeling really bad. The reaction has definitely intensified for me.

I have a coworker who point-blank said to me, it's a good thing you weren't born in a poor country or in another time, how would you avoid this food now? Well, that quite frankly got my goat, so to speak. There are people all over the place voluntarily giving up food, for low carb diets, for low fat diets, for vegetarianism, out of choice. I have given up gluten to keep myself from being sick all the time.

I used to get colds every other week during the winter, and if any stomach virus was going around I'd get it. I also had a grandmother who died of colon cancer, she also had her gallbladder out prior to that for gallbladder troubles. I don't want to go through that.

I'll admit that some of the specialty gluten-free foods don't taste great. I have tossed out a few packs of bagels and breads that really were not good. But I usually make most of my own food from scratch anyway so it's not that hard to get by. I eat wonderful foods now. And I don't have any reaction to them if I make them myself.

It's a hard thing to let sink in - I do think I was helped by having another major food intolerance, to peppers, potatoes, eggplant and tomatoes, which no one I knew, including doctors, knew anything about. But I learned that though it seemed totally absurd, I felt so much better not eating them, so it was worth the effort of avoiding them. I get sick from even the smallest amount of those foods, too.

It's a lot to absorb at first but I think it will start making sense to you as you go along. I have changed my attitude about this about a dozen times in the past 7 months. I think at times I've gone to ridiculous Herculean lengths to eat the right things and then others just gotten by without thinking too much about it.

I think you'll find that people here aren't trying to get someone to make it all better for them - they're trying to do for themselves. In fact many won't trust other people to do it for them, so I think that's the wrong thing to read into this site. We're all a very resilient "do-it-yourself" kind of bunch.

At least you know this is something going on with you. If you keep addressing it, you may find more things you didn't realize were problems will resolve.

Take care

Stephanie

[Emme999]

  I won't be guilty of OT posting though, since Kaiti is looking for a good excuse to get rid of me

Getting a little touchy aren't you?

Talk about thin-skinned

[mmm..gluten]

Getting a little touchy aren't you?

Talk about thin-skinned

Yeah, but you should have seen the PM she sent me...holy cow, talk about sailor speak. I'll let you know when I finish crying.

[KaitiUSA]

Yeah, but you should have seen the PM she sent me...holy cow, talk about sailor speak. I'll let you know when I finish crying.

[Magnus]

WOW! I didn't expect so many responses. I am truly impressed by the breadth of the discussions taking place about this topic. I have to admit that I am a little scared now after hearing so much and also admit that my problem with the diet mainly has to do with pizza and cereal, my 2 favorite foods. I guess I can find gluten-free versions, though. I guess I wrote this because this past week has been particularly bad in terms of diarrhea. I will try to be gluten-free like mmm...gluten to see what happens.Now for a few other questions:

Do you guys go to restaurants at all, knowing that even gluten-free foods could be cross-contaminated?

Has anyone tried Atkins diet (gluten-free of course) and it work?

Does anyone have "cheating holidays" like going all year gluten-free but eating whatever at thanksgiving, christmas, etc?

Is a little bit of gluten the same as a lot? (is it worse to eat 2 sandwiches (4 pieces of bread) or just a little soy sauce?)

Thanks for the replies!

[mmm..gluten]

WOW! I didn't expect so many responses. I am truly impressed by the breadth of the discussions taking place about this topic. I have to admit that I am a little scared now after hearing so much and also admit that my problem with the diet mainly has to do with pizza and cereal, my 2 favorite foods. I guess I can find gluten-free versions, though. I guess I wrote this because this past week has been particularly bad in terms of diarrhea. I will try to be gluten-free like mmm...gluten to see what happens.Now for a few other questions:

Do you guys go to restaurants at all, knowing that even gluten-free foods could be cross-contaminated?

Has anyone tried Atkins diet (gluten-free of course) and it work?

Does anyone have "cheating holidays" like going all year gluten-free but eating whatever at thanksgiving, christmas, etc?

Is a little bit of gluten the same as a lot? (is it worse to eat 2 sandwiches (4 pieces of bread) or just a little soy sauce?)

Thanks for the replies!

I'll let the others with more experience answer, but what I have been doing is ordering gluten-free things at restaurants - sometimes they get it, sometimes they don't, in which case I order a salad with no dressing or croutons and get vinegar and oil.

LaChoy soy sauce is gluten-free.

[KaitiUSA]

Everytime you go out to eat there is always a chance for cross contamination. I however do go out to eat sometimes. Outback has a gluten free menu(upon request) and I have had wonderful experiences there.

Alot of fast food places have some gluten free items too. You can find alot of gluten free products on the companies website.

There are restaurant cards you can get and present the waiter/waitress with it to aware them of celiac.

Open Original Shared Link

Gluten is gluten..obviously the more gluten you eat the more damage you get but ANY amount will do damage.

Your body will literally attack your intestines that start to try to absorb the gluten you consumed.

I do not cheat at holidays. There are ways to work around it. The family could come to your house and you could prepare a gluten free meal. Or maybe you could bring something to your relatives house that you can have. There are many options there.

[Canadian Karen]

Going out to restaurants is touch and go. Personally, I stick with restaurants that I know are knowledgeable about celiac and gluten. Outback Steakhouse is one. They have a gluten free menu, all you have to do is ask for it, let the waiter know you are celiac, and they are quite knowledgeable about what to do......

Here is a link:

Open Original Shared Link

Also, Swiss Chalet has a list that clearly indicates what is safe for us:

Open Original Shared Link

Or, you can look in your area, there are usually restaurants that offer gluten free food. For example, here in Toronto, there is a franchise called Il Fornello. Here is a link:

Open Original Shared Link

Also, there are mainstream companies that are very helpful to us by clearly indicating gluten in their products. Kraft is my personal favourite! I live by Kraft!

Here is a link to Kraft Gluten Free list:

Open Original Shared Link

Once you get the hang of this diet, it really isn't that hard. For us, the benefits far outweight the negatives.....

Karen

(edited by author to correct web link.....)

[mommida]

I guess I'm lucky to be highly sensitive. I know when my children will react. I've learned what it feels like to react and little tricks to help feel better quicker. I know how important the diet is. I know how to prevent suffering in their lives that I have gone through.

Mmm..gluten and Magnus,

It is your decision. I hope that your life will involve others that make you realize that your decision affects others. People that love you don't care if it takes a little longer to order your food at a restaurant.

People on the board can help you find gluten-free alternatives that taste better than the box it came in.

We are so lucky to have Kaiti posting on this board. There is no way of telling how many people she has helped with kind words and information.

Glad you started this thread and I hope you stick around.

Laura

(When I kiss my husband, he knows he's been kissed. He willingly avoids gluten just to make sure. He gets kissed as often as possible.)

[Emme999]

mmm...gluten & Mangus,

In response to the question, "How much gluten is too much?" and to explain why there is so much intensity over toothpaste, lipbalm & kissing on this forum - please read :

How much gluten is in a normal diet, and how much does it take to cause damage in a celiac?

The average gluten-containing diet contains roughly 10-40 grams of gluten per day. This figure is based on the amounts of gluten in your average slice of whole wheat bread, which contains around 4.8 grams of gluten (10% gluten by weight), and the amount of gluten in a serving of pasta, which is roughly 6.4 grams of gluten (11% gluten by weight). The smallest amount of gluten which has been shown by a biopsy to cause damage to a celiac is 0.1 gram per day (Catassi et al.). This is approximately the amount of gluten contained in 1/48th of a slice of bread! The biopsies in this study showed an increase in intraepithelial lymphocyte count, one of the earliest signs of damage. The challenge was on 10 patients (children) for 28 days each. Four of the patients showed an increase in IgA antigliadin antibodies. The intestinal permeability test remained normal.

(From the link: https://www.celiac.com/st_prod.html?p_prodi...-18105019712.01 )

[skbird]

I think many of the people on this list have tried Atkins or low carb - some figured out they were gluten-intolerant because of that diet. That is how I figured it out, actually. I was feeling great for the first year of the diet, then I started adding back in all these low carb breads, etc, and they are like 99% gluten. Gross! I would feel pretty nauseated most of the time when eating them.

The only gluten source that didn't bother me too much was eating white flour, for some reason. I could eat a personal pizza at Round Table and not have a big impact on my life. But now that I've been gluten free I feel horrible when I have the tiniest amount.

I was so depressed when my symptoms started returning after a year on low carb... it was really rough! Even my husband was telling me maybe I should go back on strict low carb. I really didn't want to!!! I was at about 150g carbs a day at that point (from 20g a day) and I just wasn't ready to go back...

I had a hard time doing most carbs though until I went gluten free. Now I'm eating actual sugar again and not feeling totally alien! And rice doesn't send me to the moon anymore, like it used to.

I actually will probably start cutting back as I've gone nuts with carbs lately - ordered some Kinikinnick donuts and bagels for fun but will not make a habit of it. Also gained a few pounds lately and want to get back to where I was.

Hope you don't feel too discouraged! There are many great eating options!

Stephanie

[Guest Leidenschaft]

Mmm...gluten and Magnus, I can relate to the denial and lack of symptoms... my mother (also on this board as Viola) was diagnosed 16 years ago, and of course it's common knowledge that Celiacs is hereditary. Since I didn't feel that I had the typical symptoms (the ones she had before diagnosis) I refused to get tested. I had heartburn, mainly when I ate Pizza or Spaghetti/Meat Sauce and I ALWAYS blamed the acid in the tomato sauce! It got to the point where I gave up both because I felt so terrible after eating them, but I still didn't think it was Celiacs. I had bloated guts, but usually constipation, not diarrhea which is the more common symptom. Long story short, I enjoyed beer and all other forms of gluten for another 13 years after Mom found out she had it.... Btw, another symptom that nobody picked up on was that I was chronically anemic my ENTIRE adult life! Folic acid deficient mostly. Instead of finding out why, all the doctors just pointed me in the direction of supplements.

Anyway, in 2002 my husband and I moved from British Columbia to New Brunswick, over 5000 km. I drove our van, he drove the moving truck. By the time we were into Ontario, my hands were so sore and weak I could not open a bottle of water. I thought it was tendonitis and gradually as the weather warmed into summer it went away. In November 2002 I was worse than ever, I couldn't peel potatoes, open cans with a can opener or open any bottles or jars. I finally got scared when Mom told me it was likely malnutrition from Celiacs that was causing this. I'm 38, work a very physical job with dogs, and enjoy many hand crafts, I was NOT interested in being crippled! After going through several doctors I finally found one willing to run the blood tests, they were VERY conclusive, and 6 months later a biopsy agreed! On Jan. 1/04 I went gluten-free for life! NO cheating!

At first I didn't feel a whole lot of difference, although over time my energy increased, my hands got a lot better although I still notice weather changes and the cold does bother them. I sitll can not open water/pop bottles without using a "boa" type tool.

In Feb 2005 I had ALL my blood work done again and ALL my vitamins and minerals are right where they should be! Proof that the gluten-free diet is healing my intestines and I'm actually absorbing the nutrition from my food! My Celiac blood test numbers were also WAY down from my first test!

I too don't have a high opinion of many of the specialty gluten-free foods, although I have found a poppy seed bagel made by Glutino that is REALLY good, and Pamela's Pancake and Baking mix ROCKS!! However, we do eat very well, stir fried or sauteed veggies, grilled/BBQ meats, brown rice pasta which I now thoroughly enjoy with our homemade meat sauce, and lots of different kinds of rice!

I still haven't decided what I think yet, but I have to admit I was laughing hysterically at the "kissing someone who ate gluten" thread. It seems so patently absurd that I damn near fell out of my chair.

It does sound absurd, however just this week I ended up "glutinated" when I accidentally sipped off the straw of my husband's pop! He'd been eating a sub sandwich with his pop! I was on the toilet the next morning!

(When I kiss my husband, he knows he's been kissed. He willingly avoids gluten just to make sure. He gets kissed as often as possible.)

I love this!! My hubby is also happy to keep healthy lips available!

Even if you're NOT convinced of the severity of Celiacs Disease, (and YES one day, like me, you will be!) at the very least you must admit that gluten-free living is a heck of a lot healthier than all the processed crap that we can no longer eat!

Good luck with it fellas!

[marycubs]

Hi -

I just wanted to add that I was 'lucky' to be diagnosed after only a two year period of symptoms. However, after two years of being in poor health and searching and being told by a few doctors that my problems were emotional, I was at my wits end. I can not imagine the pain and the emotions that you folks who dealt with this for years and years must have felt.

I am so happy that I didn't believe my symptoms were all in my head - and that I went to the web and did research and I found this site so that I knew what to ask my doctor for to be officially diagnosed.

The postings I have read have been very supportive, very informative and I think you are a great group of people! I admire your strength and courage and you taking the time to share information with us newbies ! Thank you !

Mary

[stef-the-kicking-cuty]

I went to the doctor because I had been having diarrhea on and off for 6 years....

.....If he was concerned that 2 weeks of being gluten-free would heal 6 years of disease, how bad can it really be?.....

Hello mmm..gluten,

welcome to our message board.

I found something that you wrote very interesting. By now you probably heard, that some people seem to have NO problems AT ALL. Sounds stupid, but they are out there. And they still do have celiac . So 6 years ago, when you didn't have diarrhea yet, how can you tell, you didn't have celiacs yet??? Maybe you already had it all your life, but you just didn't have the symptoms? Just imagine you never would have gotten any symptoms, not even diarrhea, it probably would have never been diagnosed. And then you already could have had a much bigger problem (like cancer for example) in 5 years?

By the way, I don't believe, that there are different levels of celiac. I believe that some people just get diagnosed sooner after the trigger of their celiac and some get diagnosed later. And the later you get diagnosed, the more severe your damage will be. You can compare that to the stages of cancer. (By the way, with some kinds of cancer you don't have pain/symptoms at the beginning either. So you could already live with cancer a couple of years and don't know it.) You don't have it any more severe than any other celiac, you just got diagnosed later after this disease was triggered in your body than another celiac. And celiac also progresses differently fast in different celiacs.

How can you explain, that one celiac has more damage than another lets say after both of them had exactly 2 years of pain? In my eyes there's a simple explanation. The one with the bigger damage could just have had it going on much longer without pain before these two years. Because maybe his pain intolerance is much higher? Who knows???

And the other thing, what gets me all the time is, when my student Kathy comes in and tells me: "Oh, I don't have it as severe as you do, cause my only reaction is JUST the dh rash." That is completely crap, because maybe her reaction isn't that big and she JUST has this rash, because her entire system is already THAT much damaged and slowed down, that her body doesn't have the power anymore to have any other severe reaction . Did anybody ever think of THAT?

[tarnalberry]

Too late now...I already bought a 36,000 btu Weber!

Not too late. Grilled marinated vegetables are fabulous (I do a mean balsamic vinagrette marinade) and grilled falafels... tasty!

But I'm an omnivore, so I admit to enjoying a nice steak every so often ;-)

[mmm..gluten]

Not too late. Grilled marinated vegetables are fabulous (I do a mean balsamic vinagrette marinade) and grilled falafels... tasty!

But I'm an omnivore, so I admit to enjoying a nice steak every so often ;-)

Yeah, I had my obligatory almond rice PB&J for lunch with an apple and some yogurt. So far it's not too bad, but I am sure I am not as sick of it as you guys are..

[celiac3270]

[please read all the way through...it's not all an angry tirade]

Mmm...gluten, you're going to call me touchy too for saying this, but quite frankly, I don't care. I have a few things to say and I don't care what you think of me as a result.

First off, I don't think you're in a position to be telling us what's absurd and what isn't. We're the ones who have been doing this for a year, or two, or twenty. We've read the books, researched the internet. So here we go:

I have only been gluten free for a week or so, so I haven't noticed any changes yet, but my initial reaction was exactly the same as yours. I still haven't decided what I think yet, but I have to admit I was laughing hysterically at the "kissing someone who ate gluten" thread. It seems so patently absurd that I damn near fell out of my chair. I was close to writing everyone off as a bunch of hypochondriac martyrs, but I figured I should at least give gluten-free a shot and see how I feel.

First off, the amount of gluten necessary to contaminate a person, whether they feel it or not, is 1/48th of a slice of bread. That's a few crumbs...so it's not ridiculous at all that kissing someone who just ate a bagel could contaminate you. Additionally, processed foods usually have a degree of contamination, but nowhere near what is necessary to hurt you (maybe 5 ppm or something). Add the inevitable contamination that is in the average gluten-free diet to the kissing and the other disregarded contaminants and you have a problem.

And we are not hypochondriac martyrs. I can only speak for myself, but I can guess that nearly everyone who read that and had symptoms was pissed off and deeply insulted. Most of us have been extremely sick, some almost dying, and then you have the nerve to call us hypochondriacs? That's the same shallow thing everyone said to us before we had a diagnosis.

Interesting.. Hopefully this leads to more tasty gluten-free foods. Some of the stuff out there tastes like the packaging it comes in!

Probably because one week in, you haven't found all the best brands: Kinnickinick, Ener-G, Tinkyada, Glutino... and you don't even need to buy most of your stuff in a healthfood store. So many companies list gluten clearly on the label (i.e. don't hide it) and the companies that don't usually have a list (FritoLays, Hormel, etc.) And you can just eat unprocessed foods: meats, veggies, fruits, etc.

Agreed, that's why I said I haven't noticed any changes yet. Notice I also never said "screw the diet". Jeez, you people are touchy. Must be all the crappy tasting gluten-free food! Anyway, how do they confirm that the gluten-free diet is "fixing" things? Another endoscopy?

Another insult to our food which you've only experienced for a week. And yes, via endoscopy or bloodwork. I had another endoscopy.

Yeah, my doc said it was in the "beginning stages", although I am not exactly sure what that means or how he figured it out. Anyway, like I said, I'm going to give gluten-free a shot and see what happens.

You probably hadn't had it for a long time (which is lucky as in the US it takes an average 7 years and 97% of celiacs don't even know they have it) and therefore, your intestines maybe hadn't been destroyed yet.

Apparently people here have thinner skins than most, so I will try to keep that in mind. You are exactly right in interpreting my message though - I just didn't get it.

We're just sensitive about people insulting or belittling us or the diet. And defensive, having to deal with this all the time and dealing with the "it's all in your head" comments prior to diagnosis.

"OMG, help me, I can't have gluten, oh lawd, please, let's all go hug a gluten-free tree" type, but more a suck it up and deal with it type

Me, too. Knowledge is power...and there's nothing you can do to change it...that was my opinion, as well.

Who sent you a PM?

Finally, this isn't all bad. I do appreciate that you became more sensitive in the end.

-celiac3270

[celiac3270]

I do want to mention, though, that despite getting offended over this, you're still welcome to join us here. Just please try to be more sensitive to our situation. Thanks

[mmm..gluten]

The funny part, to me anyway, is that you choose to ignore pieces of sentences and focus on what you need to make your point. You sound like a good Hillary Clinton style democrat. Now run along and look up the word seems and close to..