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How Strict Do We Need To Be?

radman

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radman Newbie
radman
Posted
  • Author

Good evening everyone,

Fiddle:

I must admit ignorance about CF, to me this means cystic fibrosis, and I don't think this is what you mean.

I'll look into the sourdough issue further, but I am not optimistic. The microorganisms responsible for sourdough's sourness work on carbohydrates, not proteins like gluten, but then perhaps there's more to it.

And no, intestinal lymphomas are not ONLY associated with celiac, but I don't think we know what proportion are associated. This would be an interesting study to do.

Welcome welcome welcome Allan, we have so much in common. While I appreciate Karen's take, I must say that initially I certainly did feel some animosity which surprised me, but hey life's too short to get down on things like that. Plus the majority of folks here are wonderful, and very helpful. I just try to be respectful, and people generally return the sentiment. I think our science training causes us to analyze this problem in a similar way. You are entireley correct that the risk of nonGI complications have not been shown to be secondary to the autoimmune response, or even to celiac directly. See my previous posts discussing correlation vs. causation. And nutritional causes are not the only indirect source of the ancillary complications. Genetic predisposition which travels in tandem with the celiac gene is another potential cause of other autoimmune problems, including neuropathy, arthritis, thyroid problems, ataxia, etc. Lots of folks aren't appreciating what I'm saying in this regard. The bottom line, though, is that I personally do not have any noticeable associated symptoms aside from the gas, foul stools, and grumbling stomach from gluten. Given what I know about immune system function, autoimmunity, genetics, and the other diseases in general, I remain concerned primarily about small intestinal malignancy and osteoporosis. I do not beleive I am at risk for the other problems, because it does not appear that I have the genetic predisposition to those other complications. I have been thinking a lot about the oats issue as well, and I come to the same conclusion as you. Oats don't have gluten, only cross contamination is a potential problem. I bought some Quaker oats but haven't tried them yet. I'm giving myself two months pure gluten free before introducing oats and other things like rice crispies (with a little malt flavoring) to see if they cause any noticeable reaction. I also relate to the longevity vs. quality of life issue. I have commented on the balance we all make regarding the risks and benefits of being less absolutist about the cross contamination/minimal gluten intake issue.

Finally, I have great respect for the misery that so many here have endured, so I would just ask them to please not take these ramblings personally. We all need to realize that the disease affects some of us very differently than others. We need to work out the best management for our individual cases, and help one another as best we can. That's the power of this board.

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  • Replies 489
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Lisa Mentor
Lisa
Posted

alanh:

First of all I would like to welcome you to the board.

Second of all....I have to the best of my knowledge been gluten free since August. Obviously, new to this diet there have been many times that I made a mistake or was not as diligent as I should have been.

It has taken me nearly eight months to learn to identify when and where I have been glutened. It is a long learning process as has been for everyone here on the site. My personal difficulties are when I am feeling "normal", I catch myself living my "before Celiac" lifestyle. A resent instance, was Sunday afternoon at a Bridal Shower, when I took one small carrot and diped once into a ranch dressing dip. The subsequent result was three days of painful acid D and fatigue.

I am not as technical as some who post here. I do feel that you need to read more of this disease. I am to date one of the blessed ones here. I have developed few of the side effect of celiac, which mine includes minor brain loss in the right side of my brain and moderate muscle atrophy. Basically, I starved my brian of all foods to maintain a health active orgain. And yes, I am lucky, many of my friends here are in wheelchairs. My future may spell out other issues.

Please learn more for your health and your future.

radman Newbie
radman
Posted
  • Author

Ok, on a lighter note, I need some practical advice.

My neanderthal buddies only know one way to socialize, and that is over a beer. A beer after work, a beer after golf, a beer while the wives talk. Since I can no longer drink beer, I keep making excuses, but I'm running out. They are suspecting I may be turning into a panzie a$$. If I tell them I have a food intolerance and can't drink beer and eat pizza, I then officially become a panzie a$$. Jerks.

What to do?

p.s. this is actually more serious than it sounds :(

VydorScope Proficient
VydorScope
Posted
Ok, on a lighter note, I need some practical advice.

My neanderthal buddies only know one way to socialize, and that is over a beer. A beer after work, a beer after golf, a beer while the wives talk. Since I can no longer drink beer, I keep making excuses, but I'm running out. They are suspecting I may be turning into a panzie a$$. If I tell them I have a food intolerance and can't drink beer and eat pizza, I then officially become a panzie a$$. Jerks.

What to do?

p.s. this is actually more serious than it sounds :(

Buy glutne free beer. Like this one:

Open Original Shared Link

(linked from an ad here, I never heard of it :) )

I do notlike beer, so can not comment beyond that. :)

Rusla Enthusiast
Rusla
Posted
Ok, on a lighter note, I need some practical advice.

My neanderthal buddies only know one way to socialize, and that is over a beer. A beer after work, a beer after golf, a beer while the wives talk. Since I can no longer drink beer, I keep making excuses, but I'm running out. They are suspecting I may be turning into a panzie a$$. If I tell them I have a food intolerance and can't drink beer and eat pizza, I then officially become a panzie a$$. Jerks.

What to do?

p.s. this is actually more serious than it sounds :(

Good evening Radman,

I would have never figured you for having neaderthal buddies, but then it is nice to a mixture of friends. Anyway how about drinking, rum,or tequila...tell them only macho men with added attractions drink what you do. If you go to the same place all the time take a look at their food list ahead of time, and find out from them if there is something they can do special for you. Then tell your cave dwelling friends that you have recently developed more refined tastes and perhaps they would like to do that also.

Sorry I can't be more help. I never did drink beer, it always made me sick now I know why.

Lisa Mentor
Lisa
Posted
alanh:

First of all I would like to welcome you to the board.

Second of all....I have to the best of my knowledge been gluten free since August. Obviously, new to this diet there have been many times that I made a mistake or was not as diligent as I should have been.

It has taken me nearly eight months to learn to identify when and where I have been glutened. It is a long learning process as has been for everyone here on the site. My personal difficulties are when I am feeling "normal", I catch myself living my "before Celiac" lifestyle. A resent instance, was Sunday afternoon at a Bridal Shower, when I took one small carrot and diped once into a ranch dressing dip. The subsequent result was three days of painful acid D and fatigue.

I am not as technical as some who post here. I do feel that you need to read more of this disease. I am to date one of the blessed ones here. I have developed few of the side effect of celiac, which mine includes minor brain loss in the right side of my brain and moderate muscle atrophy. Basically, I starved my brian of all foods to maintain a health active orgain. And yes, I am lucky, many of my friends here are in wheelchairs. My future may spell out other issues.

Please learn more for your health and your future.

Please consider this post deleted.

radman Newbie
radman
Posted
  • Author

Vydor:

I was initially happy to see that a gluten free beer was available, but as I think about it I doubt it will help with this particular problem. "What'll ya have? Bud, Coors, Guiness?"... "Uh, have ya got a gluten-free Grist Mill?"

But this will be good to have at the house to drink with the ocassional barbeque.

Rusla:

Good advice as always. Drinking straight up vodka couldn't be considered wimpy, but it could be problematic in other ways :lol:

By the way, do grain based liquors like scotch and bourbon have gluten?

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Hi, Radman,

Actually, I do mean cystic fibrosis. What caught my eye was the similarity in stomach symptoms. I was wondering if the pulmonary stuff could possibly be another expression of celiac the way Dermatitis Herpeteformis is.

Hi, Alan, welcome to the forum.As you may have noticed, people to tend to react with great intensity here. I believe everyone means well, but as someone stated on page 14 of this thread (or was 15), many have been to hell with this disease, and not all have come back.

Having said that, would everybody PLEASE calm down?!?!?! Nobody is trying to offend anybody else, but it seems that everybody is taking offense at everything.

I think I understand where Alan and Radman are coming from, as I suspect I come from the same planet in terms of the mildness of symptoms and how late in life they started. Most of you guys who have been to hell and back have had many major health problems for decades.

I haven't. I had one rash that wasn't even confirmed as DH, but I went off gluten just in case--and noticed a lot of good things, both for me and for my children who are now "gluten-lite."

Your suggestions of banning every gluten molecule from our house and the five-mile radius beyond it is logical. In your experience, it has been a total poison, and in your experience, one molecule is easily enough poison to wreak several day's worth of havoc on your bodies.

But it's also logical to wonder--isn't it possible that every "normal" healthy person might develop celiac if their bodies receive enough of a gluten overload. Is celiac like vaccines, where 15% or more develop autism, perhaps becasue they are genetically wired differently, or perhaps their bodies have a different "set point" of what they can handle? For those of us who have such mild symptoms that they don't even register with us--what if remaining "gluten-lite" instead of gluten-free actually protects us from developing 30 million food intolerances? What if going totally off gluten somehow triggers our bodies into rejecting other things in its stead? Certainly, I think a gluten-lite diet would just put us on a slower path to the hell that the rest of you have expereienced--but it could possibly go either way. We really don't know. Those of you who are the most passionate about being gluten-free and who are the most affected by a molecue of cross-contamination--as far as I can tell, you guys had the severe problems for years before your diagnosis and subsequent flight from gluten. Isn't it possible that those of us at a very beginning stage of gluten intolerance (and later in life) might not need to be as vigilant as you?

I understand that you are simply trying to help and protect us from the pains that you have suffered--I really do. I'm the same way about breastfeeding. I look moms who say, "Hmm, this is tougher than I thought, guess I'll switch to formula," and I think they can't possibly have any brains--and that's probably what you'll think of me for writing this post.

I'd like to hear from someone who has not had major celiac problems, but who has experimented with both gluten-free and gluten-lite.

And for those of you who are very upset, let me just say that this is similar to teenagers not wanting to learn from their parents' experiences but wanting to learn on their own. I'm sure there's a certain amount of denial, but there's no disrespect intended here. Let's use drugs as an example. As far as I know, there is easily enough research on drugs that I have never had the least desire to experiment even once. But gluten? There just isn't enough available research yet to convince me that I need to worry about cross-contamination when the 2 times I cheated with "real" soy sauce, I had absolutely no symptoms. This doesn't mean that I'm going to start eating bread, or even use "real" soy sauce on a regular basis (I cook Asian food way too often for that, and besides, I just discovered Thai fish sauce, which I like even better :) )But I'm not going to get my knickers in a twist worrying about cross-contamination until I see symptoms that tell me I need to. (And I am definitely on the lookout for those symptoms!)

Anyway, if you Serious And Experienced Ones can please try to be a little bit more patient with those of us who have a slightly different perspective, and try to understand that we are thinking out loud on this forum. In re-reading the posts on this thread, I'm finding more nastiness coming from the experienced people than from the newbies who are just trying to feel their way around a new world here.

Radman--sorry I can't help with the beer thing--I've always detested beer. When I was 8, my brother gave me a glassful--but told me it was ginger ale. Bleagh!!! :wacko:

Rusla Enthusiast
Rusla
Posted
Vydor:

I was initially happy to see that a gluten free beer was available, but as I think about it I doubt it will help with this particular problem. "What'll ya have? Bud, Coors, Guiness?"... "Uh, have ya got a gluten-free Grist Mill?"

But this will be good to have at the house to drink with the ocassional barbeque.

Rusla:

Good advice as always. Drinking straight up vodka couldn't be considered wimpy, but it could be problematic in other ways :lol:

By the way, do grain based liquors like scotch and bourbon have gluten?

Yes they do.

Even some vodka's are distilled with grain but not many. I suggest doing many tequila's and then dancing on the table.

VydorScope Proficient
VydorScope
Posted

Volenteer to be the permenat desingnated driver and stick with coke/pepsi/etc

tarnalberry Community Regular
tarnalberry
Posted
Ok, on a lighter note, I need some practical advice.

My neanderthal buddies only know one way to socialize, and that is over a beer. A beer after work, a beer after golf, a beer while the wives talk. Since I can no longer drink beer, I keep making excuses, but I'm running out. They are suspecting I may be turning into a panzie a$$. If I tell them I have a food intolerance and can't drink beer and eat pizza, I then officially become a panzie a$$. Jerks.

What to do?

p.s. this is actually more serious than it sounds :(

1. you can get yourself some gluten-free beer, or gluten-free hard cider. or switch to distilled beverages that are gluten-free.

2. you can explain yourself, and if they truely say you're a pansy and treat you like crap over it, then they are jerks, and do you really want to socialize with people who will TRUELY behave so poorly as to value a beverage over their friend?! you can still go out with them and just drink something else.

VydorScope Proficient
VydorScope
Posted
1. you can get yourself some gluten-free beer, or gluten-free hard cider. or switch to distilled beverages that are gluten-free.

2. you can explain yourself, and if they truely say you're a pansy and treat you like crap over it, then they are jerks, and do you really want to socialize with people who will TRUELY behave so poorly as to value a beverage over their friend?! you can still go out with them and just drink something else.

Tif, I might not understand the desire to drink, but one thing I do understand is male interaction. Its completely different then female interaction, and i doubt I could explain... but they would likly value him over the beverage AND give him heck over it.

Rusla Enthusiast
Rusla
Posted
Tif, I might not understand the desire to drink, but one thing I do understand is male interaction. Its completely different then female interaction, and i doubt I could explain... but they would likly value him over the beverage AND give him heck over it.

I think Vincent, you are refering to the traditon of "male bonding." Which of course men do so much more differently than women. :P

Lisa Mentor
Lisa
Posted

Radman:

If you need a manly drink try Maker's Mark on the rocks. My choice is Seagrams 7 - 7up...not manly enough but it works for me.

I also agree with Fiddle-Faddle that there are levels of sensitivity. After reading so much on this site, I have realized that, although I get glutened, my level is not as intense as others.

As far as ages goes and your level of indulgeing. what in the world does that mean.... My mother died when I was 2 1/2, my step-mother died when I was 20 and my father died when I was 22. Talk about being alone. I have a daughter going to be married in two months with her sister close behind. and I want to be healthy enought to watch my grandchildren graduate from high school, I want to take pictures for the prom and I want to see it all. And if I have to watch my diet for the rest of my life to achieve those goals, I will damn well do it.

I am 51 years old and I have a whole lot of things that I need to do. Choices, it is all choices, and as the Templer Knight said "choice, wisely".

Lisa

radman Newbie
radman
Posted
  • Author

You guys seem to be forgetting that I am talking about my fellow males here, not humans. They don't reason about these things.

Seriously though, I wonder, at the risk of setting off another, err, opinionated discussion, just how much gluten is in a distilled beverage.

Long before I knew about my celiac, I knew that my gut did not tolerate beer very well, but that I could drink scotch and bourbon without much problem (well, provided it was one or two drinks :) )

VydorScope Proficient
VydorScope
Posted
You guys seem to be forgetting that I am talking about my fellow males here, not humans. They don't reason about these things.

Seriously though, I wonder, at the risk of setting off another, err, opinionated discussion, just how much gluten is in a distilled beverage.

Long before I knew about my celiac, I knew that my gut did not tolerate beer very well, but that I could drink scotch and bourbon without much problem (well, provided it was one or two drinks :) )

Distilling removes gluten.

I think Vincent, you are refering to the traditon of "male bonding." Which of course men do so much more differently than women. :P

:lol: "Male bounding" :lol: Typical Female response :lol:

Rusla Enthusiast
Rusla
Posted

I am going to come and take pictures of Radman dancing on the table.

Distilling removes gluten.

:lol: "Male bounding" :lol: Typical Female response :lol:

What would you call it Vincent? Is there a new word for it now? :lol:

VydorScope Proficient
VydorScope
Posted
I am going to come and take pictures of Radman dancing on the table.

What would you call it Vincent? Is there a new word for it now? :lol:

:rolleyes: Needing to name somthing, and describe it with words is such a female concept. :P:lol:

Guest nini
Guest nini
Posted

sorry if it appeared I was getting "my knickers in a twist" I'm under a LOT of stress in my "real life" since I lost my job last week...

back to the pressing question,

I like the option of switching to gluten-free beverages and finding out what other gluten-free food options your fave hang out places might offer, OR what is wrong with being the designated driver? (j/k) I think the social aspect of hanging out with the buddies is way more important than a drink...

jerseyangel Proficient
jerseyangel
Posted

Gosh Vincent--you're such a GUY!! :D

VydorScope Proficient
VydorScope
Posted
Gosh Vincent--you're such a GUY!! :D

Thank you. :D

Rusla Enthusiast
Rusla
Posted
:rolleyes: Needing to name somthing, and describe it with words is such a female concept. :P:lol:

That is because women comunicate as opposed to grunting and waving clubs. :lol::lol:

sorry if it appeared I was getting "my knickers in a twist" I'm under a LOT of stress in my "real life" since I lost my job last week...

back to the pressing question,

I like the option of switching to gluten-free beverages and finding out what other gluten-free food options your fave hang out places might offer, OR what is wrong with being the designated driver? (j/k) I think the social aspect of hanging out with the buddies is way more important than a drink...

I am sorry you are stressed and lost your job. If we all lived near each other we could all go out for a milkshake (with rum) or something. Then we could scratch our genitals and armpits and communicate. :lol::lol:

VydorScope Proficient
VydorScope
Posted
That is because women comunicate as opposed to grunting and waving clubs. :lol::lol:

:lol: thats casuse most of the time men can communcait more with one grunt then a woman can get out on the phone in say an hour ! :lol::lol:

Rusla Enthusiast
Rusla
Posted
:lol: thats casuse most of the time men can communcait more with one grunt then a woman can get out on the phone in say an hour ! :lol::lol:

Ha! I do not like talking on the phone. Now my older brother would spend and still does spend hours on the phone. :P:lol:

VydorScope Proficient
VydorScope
Posted
sorry if it appeared I was getting "my knickers in a twist" I'm under a LOT of stress in my "real life" since I lost my job last week...

Wow that stinks. Sorry, wish I was hiring at my office so I could offer you somthing... :(

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      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
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