New Member - Long Standing Cs (long Post)

[RKB-MD]

I just discovered this web-site and wanted to introduce myself and say a big HI! to all the celiacs on this board.

I’m a 38 y.o. male physician who has had a life-long gluten intolerance. I was diagnosed at the age of 2 when my parents brought me to an enlightened pediatrician who took one look at the malnourished, sickly, well below statistical norm child and said – “Sprue”. This was after 2 years of my mother being told that my problem was that she “worried too much” – lovely state of medical affairs in the 60’s. My parents, along with a wonderful Pedi GI doc decided not to subject me to a biopsy, but instead used the elimination diet with wonderful success. It was miserable being a kid who always had to bring my own cake to other people’s birthdays, and I hated that my mom was constantly calling school and camp to arrange for my dietary needs. As I grew up I rebelled on my diet, intermittently being ill (tons of D), and not understanding why I felt so worn down all the time. Every time I went back to college after having been home on a gluten-free diet, there would be a transition period of D until I guess I destroyed enough microvilli. The constant DH on my feet drove me crazy – especially as I didn’t know what was going on – thought it was just athlete’s foot. Remember, this was the dark ages of the 80’s.

Dating was always miserable – made me feel like I had as a kid with all the questions for waiters in front of a girl who immediately assumed that I was “weird” based on this diet (of course no other reasons LOL). And, if I avoided the subject with the waiter, I rued it afterwards (yes that was another joke).

In medical school I was HLA typed (match) and the IGA bloodwork came about – no surprise giladin positive. Residency was tough as even hospital cafeterias have no clue, and the fatigue of the work on top of the diet was miserable.

Fast forward a few years and I “grew up” and became super-strict on the diet. Also, society changed greatly and most restaurants have gotten much better about the issue of food allergies. During an all too short marriage (5 years) I became a pretty good cook out of necessity – restaurants are still hit-or-miss, her family was also very accommodating, although they never really learned about reading labels completely. The label rules that were enacted in 2005 (?) have helped, although I have found plenty of errors and omissions in the “Contains: Wheat” category. I really appreciate the specifics on the “Modified Food Starch” and “Hydrolyzed Vegetable Protein” these days. The Atkins diet fad has been wonderful as no eyebrows are ever raised when bread is refused, or meals ordered sans bun/bread/etc. I now have some wonderful friends who, when we cook together, really watch out for additives and read labels too! Fortunately, I’ve just met a woman who not only has friends who have been recently diagnosed, but also is understanding and kind about the whole meal issue – it doesn’t hurt that I can cook! These days I keep to pretty much a no-carb diet (other than fruits, veggies, and occasional rice and spuds). Travel, especially to foreign locals, is still super tough – I used to know how to say “Corn tortilla, NOT wheat” in Spanish.

The replacements are out there, and I respect everybody’s individual opinion on matters of taste and palatability, but I will say my personal experience for the “must have baking product needs”: Kinikinik (sp?) makes the best mix for pizza crust, Fern for yellow-cake, Pamela’s Products for pancakes, Energy breads (must toast first!), and while I am forgetting the brand as it has been so long since I had it, there is a pasta made from tapioca flour that is excellent!

I empathize with all recently diagnosed individuals, and their spouses and significant others. It is a tough diet. For those who are with someone who refuses to help or comply – DTMFA! For those who have irritating or downright hostile coworkers/ church members/ etc – just look them straight in the eye and say “steatorrhea” – when you start to define it, and they start to look ill, just laugh and walk away. If anyone DARES to hide wheat/oats/ barley and feeds it to you purposely, I’d bring them a Tupperware container with the results!

I found this board today after a Vietnamese restaurant meal on Wednesday of this week that has caused probably the worst reaction I have had in a long time and I Googled “Banana celiac”. I didn’t pay attention to the soy sauce issue (bad me!), and I believe that there was a lot of white pepper in the pepper sauce. Also, I have the (non medical fact based) impression, that the long-standing super-strict compliance with my diet has made my jejunum super sensitive.

That was a super long intro, and now I have some questions for the other members.

I’m pretty well versed in what to avoid, but a brief survey of this forum has raised some new questions in my mind.

-Are bananas still considered one of the best ways to help “cure” a bad reaction? I can understand the K+ replacement aspect (I’m having muscle weakness and some neuropathies today), but is there anything else to the magic banana? Any other “remedies” other than time?

-Taco Bell is bad? The ground beef contains fillers? Are the chicken or beef strips marinated in something evil?

-Any other fast-food surprises? Other than the obvious (KFC, Popeyes, etc).

-I thought all grain based alcohols were a big no-no, especially the bourbons, whisky, and Scotch categories. Chopin Vodka is the only potato-based vodka readily available in the USA, but I really like Abosult and Grey Goose.

-I know about balsamic vinegar, and white pepper – but other surprise gluten containing compounds?

-I’m sure I’ll come up with some more…

Russ

[skoki-mom]

Hey Russ,

Just wanted to say hi and welcome to the site. I can't answer to most of your questions as I'm the subclinical variety. As well, I live in Canada, so many products and even fast food chains have different ingredients and prep methods than places in the US. However, I can answer to the alcohol question Distilled alcohols are gluten-free, as the proteins are filtered out in the distillation process. I'm not a big drinker of hard alcohol, but I love my Smirnoff Ice and a good hockey game (note that SI is gluten-free in Canada but not in the US), and thank God there is always chocolate. However, it seems that a lot of people with celiac disease also have issues with many other foods as well, alcohol being one of them. Nothing makes me sick (including gluten), so I am one of the lucky ones!

Cheers!

[jerseyangel]

Hi Russ and welcome!

Hopefully we can all learn from each other

Since I've never liked Mexican food , and don't really drink alcohol much, all I can comment on are the bananas.

They're not a "cure" for a gluten reaction--but they do help. When I've been glutened (always by cross contamination), I go to bananas and mashed potatoes. I need something in my stomach, and those don't make things any worse in the nausea dept! The only other tip I have is that I drink plenty of spring water, and hope it passes quickly.

[rinne]

Hi and welcome.

I go for bananas and potatoes, also sweet potatoes if I am feeling glutened.

As for the alcohol, I can't drink grain based alcohol. When I was first gluten free, only two and a half weeks and just starting to feel better, I had one ounce of Scotch and suffered for three days.

I don't eat out much or eat processed food so I can't be of any help with those questions.

[angel-jd1]

I just discovered this web-site and wanted to introduce myself and say a big HI! to all the celiacs on this board.

I’m a 38 y.o. male physician who has had a life-long gluten intolerance. I was diagnosed at the age of 2 when my parents brought me to an enlightened pediatrician who took one look at the malnourished, sickly, well below statistical norm child and said – “Sprue”. This was after 2 years of my mother being told that my problem was that she “worried too much” – lovely state of medical affairs in the 60’s. My parents, along with a wonderful Pedi GI doc decided not to subject me to a biopsy, but instead used the elimination diet with wonderful success. It was miserable being a kid who always had to bring my own cake to other people’s birthdays, and I hated that my mom was constantly calling school and camp to arrange for my dietary needs. As I grew up I rebelled on my diet, intermittently being ill (tons of D), and not understanding why I felt so worn down all the time. Every time I went back to college after having been home on a gluten-free diet, there would be a transition period of D until I guess I destroyed enough microvilli. The constant DH on my feet drove me crazy – especially as I didn’t know what was going on – thought it was just athlete’s foot. Remember, this was the dark ages of the 80’s.

Dating was always miserable – made me feel like I had as a kid with all the questions for waiters in front of a girl who immediately assumed that I was “weird” based on this diet (of course no other reasons LOL). And, if I avoided the subject with the waiter, I rued it afterwards (yes that was another joke).

In medical school I was HLA typed (match) and the IGA bloodwork came about – no surprise giladin positive. Residency was tough as even hospital cafeterias have no clue, and the fatigue of the work on top of the diet was miserable.

Fast forward a few years and I “grew up” and became super-strict on the diet. Also, society changed greatly and most restaurants have gotten much better about the issue of food allergies. During an all too short marriage (5 years) I became a pretty good cook out of necessity – restaurants are still hit-or-miss, her family was also very accommodating, although they never really learned about reading labels completely. The label rules that were enacted in 2005 (?) have helped, although I have found plenty of errors and omissions in the “Contains: Wheat” category. I really appreciate the specifics on the “Modified Food Starch” and “Hydrolyzed Vegetable Protein” these days. The Atkins diet fad has been wonderful as no eyebrows are ever raised when bread is refused, or meals ordered sans bun/bread/etc. I now have some wonderful friends who, when we cook together, really watch out for additives and read labels too! Fortunately, I’ve just met a woman who not only has friends who have been recently diagnosed, but also is understanding and kind about the whole meal issue – it doesn’t hurt that I can cook! These days I keep to pretty much a no-carb diet (other than fruits, veggies, and occasional rice and spuds). Travel, especially to foreign locals, is still super tough – I used to know how to say “Corn tortilla, NOT wheat” in Spanish.

The replacements are out there, and I respect everybody’s individual opinion on matters of taste and palatability, but I will say my personal experience for the “must have baking product needs”: Kinikinik (sp?) makes the best mix for pizza crust, Fern for yellow-cake, Pamela’s Products for pancakes, Energy breads (must toast first!), and while I am forgetting the brand as it has been so long since I had it, there is a pasta made from tapioca flour that is excellent!

I empathize with all recently diagnosed individuals, and their spouses and significant others. It is a tough diet. For those who are with someone who refuses to help or comply – DTMFA! For those who have irritating or downright hostile coworkers/ church members/ etc – just look them straight in the eye and say “steatorrhea” – when you start to define it, and they start to look ill, just laugh and walk away. If anyone DARES to hide wheat/oats/ barley and feeds it to you purposely, I’d bring them a Tupperware container with the results!

I found this board today after a Vietnamese restaurant meal on Wednesday of this week that has caused probably the worst reaction I have had in a long time and I Googled “Banana celiac”. I didn’t pay attention to the soy sauce issue (bad me!), and I believe that there was a lot of white pepper in the pepper sauce. Also, I have the (non medical fact based) impression, that the long-standing super-strict compliance with my diet has made my jejunum super sensitive.

That was a super long intro, and now I have some questions for the other members.

I’m pretty well versed in what to avoid, but a brief survey of this forum has raised some new questions in my mind.

-Are bananas still considered one of the best ways to help “cure” a bad reaction? I can understand the K+ replacement aspect (I’m having muscle weakness and some neuropathies today), but is there anything else to the magic banana? Any other “remedies” other than time?

-Taco Bell is bad? The ground beef contains fillers? Are the chicken or beef strips marinated in something evil?

-Any other fast-food surprises? Other than the obvious (KFC, Popeyes, etc).

-I thought all grain based alcohols were a big no-no, especially the bourbons, whisky, and Scotch categories. Chopin Vodka is the only potato-based vodka readily available in the USA, but I really like Abosult and Grey Goose.

-I know about balsamic vinegar, and white pepper – but other surprise gluten containing compounds?

-I’m sure I’ll come up with some more…

Russ

Russ-

Welcome to the board. I am impressed and excited that we have a MDCeliac with us now. Thanks for not being too afraid to join.

I'm sure as you read through the old posts many questions will come up. I can see that some already have in reguards to "fast food". Many fast food places offer online lists that contain nutritional info. Taco bell is one that you mentioned and they do have information online as to what we can eat/not eat. Even places like KFC have an online list (coleslaw, potato salad and things like that are "safe" however I get scared with the risk of cross contamination in places like that).

If you haven't read about the McDonalds fry fiasco you might want to search for the posts on that one. You can form your own opinion from there.

I always find it interesting how folks will get diagnosed so early in life. They follow what they think to be "the gluten free diet with no mistakes" and come online to find out SO much more. I think that many of us on this board are VERY strict with our diets. I know many folks do not eat any processed foods. Some choose to not eat out at all because of cross contamination risks. Others are a combination of everything.

As far as bananas.....I think that they are pretty easy on the stomach. I guess that would help when we are not feeling so hot. They are also fortified with yummy vitamins, so that's always a bonus.

I got cross contaminated this last week. I don't find that there is any "cure". I drink extra fluids. Usually drink some gatorade or powerade. I eat foods that are going to be easy on my tummy. Nothing too spicy. Time is the best healer.

Welcome to the group. Post often.

-Jessica

[flagbabyds]

Welcome!!!!!!!!!!!!!!!!

I don't drink, (a little young...) so I cant help you with that part, but when I get glutened i eat by the BRAT diet, bananas, rice, applesauce, and gluten-free toast or Ener-G crackers.

you'l, find lots of good resources on this site, and it will help you a lot.

I like you was diagnosed when I was 2, but I am NOT rebelling at all!!!!!!!!!!!

[Guest nini]

Bananas are still the wonder fruit for most of us. I keep frozen ones on hand for just about everything.

I don't drink either, but there are lists of safe alcoholic beverages on the main site that these message boards are on.

This site is one of the best I've found as far as overall wealth of information. Stick around, learn from us, teach us, teach the world!!! HA HA!

oh and if you get a chance, check out my "newbie survival kit" even though you aren't new to the gluten-free lifestyle, the newbie kit has a collection of files of updated info that may be able to widen your food choices. (the newbie kit is available for download on my website, just click the link in my signature below and scroll to the bottom of the page then click on the link for the Newbie Survival Kit)

[happygirl]

Welcome to the board! We are happy to have you here! We have all come here for a variety of reasons and were diagnosed (or for many, never diagnosed) in different ways, but we are all here to support and help each other.

You mentioned "-I know about balsamic vinegar, and white pepper – but other surprise gluten containing compounds?"

Are you indicating that these items have gluten in them? Regular balsamic vinegar is safe....the only vinegars that are not safe are malt vinegar and certain 'flavored' vinegars (I think there is an apple cider flavored vinegar that is not safe, as opposed to apple cider vinegar which is safe.) Here is a related link about vinegar https://www.celiac.com/st_prod.html?p_prodi...-32106355856.94

I have never heard anything about white pepper---explain, please!

I drink absolut vodkas regularly and do fine with them. Here is a list of gluten free alcohols: https://www.celiac.com/st_prod.html?p_prodi...-32106355856.94

I think I would rather starve before I go to Taco Bell (in terms of gluten). Although many places offer their list of ingredients, and some may be gluten free, the risk of cross contamination, for me, is too high. I have very severe reactions that make me miserable and sick for days, so I cannot risk eating at fast food places...I have gotten sick there so many times (finally, I learned! its like banging your head against the wall repeatedly). The only things that I'll eat are a baked potato (uncut---they can cut your potato with a gluten containing knife) or a small side salad at Wendys. Others eat out more, some never eat out---it depends on reactions, knowledge of the diet, risk tolerance, values, etc.

Hope this helps

[daffadilly]

-Are bananas still considered one of the best ways to help “cure” a bad reaction? I can understand the K+ replacement aspect (I’m having muscle weakness and some neuropathies today), but is there anything else to the magic banana? Any other “remedies” other than time?

-Taco Bell is bad? The ground beef contains fillers? Are the chicken or beef strips marinated in something evil?

-Any other fast-food surprises? Other than the obvious (KFC, Popeyes, etc).

-I thought all grain based alcohols were a big no-no, especially the bourbons, whisky, and Scotch categories. Chopin Vodka is the only potato-based vodka readily available in the USA, but I really like Abosult and Grey Goose.

-I know about balsamic vinegar, and white pepper – but other surprise gluten containing compounds?

-I’m sure I’ll come up with some more…

Hi MD Russ, I am new to this board also. I have been gluten-free for two years & am very sensitive to cross contamination. I have two DQ1 genes, as does my whole family. My son married a girl that we know has at least one DQ1 as my grandchildren have two.

Bananas are good because they are a soft food. we do not know why it makes sense but soft foods do better when you are glutened. for the big D coconut macaroons help. Also, try to keep homemade soup in the freezer in single portions. The soup is cooked chicken, cabbage & carrots, & some seasoning. That is all that goes in it, then when you are glutened eat some of that. Rice and baked sweet potatoes are my comfort foods for those times when the gut feels awful. It varies with different people

Try Taco Cabana they have a gluten-free menu on line. Chipotle is hit or miss, most of their stuff is gluten-free (except for the really hot sauce - check their web site) but the problem is that they have those flour tortillas & when they put say beans on the tortilla they touch the flour tortilla with the spoon & then that spoon goes back into the beans & they pick up the cheese & lettuce with their gloved hands that has touched the flour tortillas. I love Chipotle & can mostly eat there with no problem, I always ask them to change their gloves & I do not eat the cheese.

alcohol should be okay unless you have a particular other allergy or something.

Do not eat any Brach's candy (hidden gluten)

Wishing you the best - also check on line there are more & more gltuen free menus for restaurants, although you still have to ask for the manager etc IMO to be safe.

[CarlaB]

Taco Bell adds wheat to their beef. I thought that the only thing on their menu that is gluten-free is the tostada and the beans, but double check. I would never eat there due to the possibility of cross contamination.

Wendy's chili and Frosty's are safe. So are Chick-fil-a's grilled chicken salads. That's all I'll eat as far as fast food goes.

Most distilled alcohols are safe. The only ones that aren't are the ones that add back sour mash, so if you're not drinking a clear one, check with the manufacturer to be sure it's gluten-free. That being said, I get sick if I drink grain alcohol.

Someone answered about the balsamic vinegar, and was correct. Balsamic vinagraitte dressings, however, are not always safe, so you need to read labels.

I drink lots of fluids when I get glutened as it tends to dehydrate me badly. Ones with electrolytes seem particularly helpful for me.

What's with the white pepper, I've never heard about that?

[queenofhearts]

There was a post somewhere about Balsamic vinegar that did point out that some of the cheapest store brands actually have flavorings added that could contain gluten. The ones bottled in Modena though are required by law to be pure so they are safe. This includes many reasonably priced ones, not just the exotic aged kind.

I hadn't heard about white pepper either, but I know that some spice MIXTURES are not safe. Also if any of you are Indian food fans, asafedita is NOT safe, & is in most papadams & some spice mixtures. It is also known as Hing.

Leah

[ms-sillyak-screwed]

RKB_MD -- Welcome Dr. Russ!

I have been doing research for a celiac disease project and some of it has to do with banana babies. My late-Auntie that died on a feeding tube was a banana baby and my grandfather has bananas shipped. I have just come across a tiny hammer from the 1800's he used to open the banana crates.

In the historical newspapers I've been able to complie some useful old information to share. It is linked to my blogg but it started from a post here. It is still a work in progress...

Open Original Shared Link

Open Original Shared Link

Thanks for joining our group we are so happy you are here.

[RKB-MD]

WOW! Thanks for the welcome!

My information about the vinegars comes from older materials from a dietician who I respected. I would agree that the malt aspect affect some but not others. I have “heard” various information regarding apple cider, malt, and balsamic vinegars, but do not have any conclusive information about any of them.

Remember this is a disease state with highly variable penetrance – for those who do not understand this term: basically, some are affected much more than others. For example, some need to worry about cross-contamination (foods touching gluten containers), and some do not. It’s a weird disease state. Back in the early 90’s there was a supposed 10% world population affected. This has come into question with the variability present in the symptomatology and reactiveness. A lot of “enlightened” physicians are beginning to recognize that some people diagnosed with IBS actually have food allergies, and most of those are CS.

Regarding White pepper. I have no certain reference beyond a dietary recommendations from the late 90’s. This document came from an ICU dietician who had worked at the Chicago Institute for Celiac (does it even exist?) and was the only person to diagnose my fingernail pitting as due to a B vitamin deficiency (Where a highly respected Dermatology department couldn’t come up with an answer.).

Unfortunately I'm often in as much of "the dark" as the rest of you guys and gals.

Does anyone know the state of the research at the University of Washington regarding a "pill" to break down giladin (along the lines of Lactaid)?

[elonwy]

-Are bananas still considered one of the best ways to help “cure” a bad reaction? I can understand the K+ replacement aspect (I’m having muscle weakness and some neuropathies today), but is there anything else to the magic banana? Any other “remedies” other than time?

-Taco Bell is bad? The ground beef contains fillers? Are the chicken or beef strips marinated in something evil?

-Any other fast-food surprises? Other than the obvious (KFC, Popeyes, etc).

-I thought all grain based alcohols were a big no-no, especially the bourbons, whisky, and Scotch categories. Chopin Vodka is the only potato-based vodka readily available in the USA, but I really like Abosult and Grey Goose.

-I know about balsamic vinegar, and white pepper – but other surprise gluten containing compounds?

-I’m sure I’ll come up with some more…

Russ

I use Nulev for the tummy aches, bloating and gas. I can't stand bananas, I don't do "mushy" fruit, so I'm unhelpful there.

Taco Bell is evil.

I've found that fast food really depends on the restaurant. I have a BK, a Mcdoo and a Wendy's near my work. I watched my ex-husband have a heart attack at 35 while eating a McD's Cheeseburger, so I don't think I can ever go in one again. The Wendy's near my work makes me sick, the one near my house is fine. I'm a big fan of the salad with chili on it ( Don't use the dressing or the tortillas strips). The BK near me, i talk to the manager every time and he makes me my bunless burger and gets me my fries before they are chucked in the bin next to the onion rings. Otherwise, I won't order. If you live on the West Coast, In-N-Out is the best thing ever.

Blue Ice potato vodka is from Idaho, and is AWESOME. I like chopin, but it's expensive and Blue Ice is a great mixer vodka, whereas Chopin is more of a "sipping vodka" as my Polish friend puts it.

White pepper??? Don't scare me, I love to use white pepper in soups.

Have you discovered Triumph dining cards? www.triumphdining.com Really helpful, I find they help me remember details as much as the wait staff, and really helps with ethnic restaurants.

Welcome.

Elonwy

[eKatherine]

The only difference between black pepper and white pepper should be that the while pepper has had the black hulls removed, unless there is some sort of cc picked up in processing, which I always thought was purely mechanical. I wouldn't be able to tell, as cc doesn't bother me.

[gfp]

Russ, I just wanted to extend the welcome here:

I have to say your story sounds exceptional in that you are an MD ready to accept.

(i deliberatly left that open as in page left intentionally blank)

We have had a few MD's and a few have left ... largely down to (IMHO) making statements like "Do you seriously beleive 1 crumb can hurt you" and then getting a whole load of people who have experienced this and then telling them basically their opinion is worth nothing if they didn't spend 10yrs in med school (and I have a set of nasty pm's from the last one when I contradicted him... as have others!)

You sound very open and willing to accept that not all experience by non trained physicians is rubbish

Few of us here were as "lucky" as you with diagosis, as one ex-active member wrote as a MD specialising in GI issues "I have seen thousands of patients but non had celiac disease" .. as someone pointed out even with the general population this just means he misdiagnosed hundreds

My information about the vinegars comes from older materials from a dietician who I respected. I would agree that the malt aspect affect some but not others. I have “heard” various information regarding apple cider, malt, and balsamic vinegars, but do not have any conclusive information about any of them.

Is the type of statement I like to read

However just as a pointer you already half answered this in your first post and accepting that perhaps the duodenum becomes more sensitive.

A lot of “enlightened” physicians are beginning to recognize that some people diagnosed with IBS actually have food allergies, and most of those are CS.

I think we are including you in the enlighted group

Strangely enough the MD who sent me the nasty pm's said (and I quote)

I can guarantee you that if a GI sees many patients with irritable bowel syndrome improve with the gluten free diet he/she would be the first to publish that as first case studies in a journal of gastroenterology, and than research would follow. The problem is people with IBS don't improve on a gluten free diet more than would be expected due to a placebo response.

Sorry, back to your luck at being diagnosed early....(I am not blaming you in anyway here, I just want to prepare you for a few responses BEFORE you get them to those who didn't take the time to read your post....)

Many of us were not... many spent years being told it was in our heads, we were hypochondriac and a few like my mother referred for physchiatric help. Some of us have an occiasional need to vent... and their are still far less enlightened physicians regarding celiac disease than enlightened ones. Please realise that non of this is personal and if you explain as you did here you will be highly valued as a member and if a few people complain from time to time they are having a bad day or more likely just had a bad visit to a MD

-Are bananas still considered one of the best ways to help “cure” a bad reaction? I can understand the K+ replacement aspect (I’m having muscle weakness and some neuropathies today), but is there anything else to the magic banana? Any other “remedies” other than time?

-Taco Bell is bad? The ground beef contains fillers? Are the chicken or beef strips marinated in something evil?

-Any other fast-food surprises? Other than the obvious (KFC, Popeyes, etc).

-I thought all grain based alcohols were a big no-no, especially the bourbons, whisky, and Scotch categories. Chopin Vodka is the only potato-based vodka readily available in the USA, but I really like Abosult and Grey Goose.

-I know about balsamic vinegar, and white pepper – but other surprise gluten containing compounds?

Personally I find chicken soup very watery with cabbage and soft vegetables (or more accurately fruits) like zuccini ... as good a recovery as anything ....

The best control is possibly IMHO immodium and I believe (no evidence) this is because of the bonding to the endorphin receptors, my theory is the more are bonded to immodium the less are available to gluten and hence particualrly for neurological effects early immodium can offset the effects as well as its other more widely used purpose! However liquid immoium apparently contains gluten (Really perhaps I am paranoid) ... and I use sublingual in a first suspicion incidence to beat the breakdown of the protein and binding to the endorphin receptors.

Fast food surprises: nice way to put it.. how about battered onion rings in fries?

Grain based alcohol.... probably one of the bigger sources of disagreement here....

My opinion as someone who has spent a long time doing predictive modelling of multiphase eutectics is it will take a better man than me to say definately NO.

My general rule on gluten is "if in any doubt, leave it out!" I don't believe in waiting for someone to conclusively prove one way or another.

Many celaics continue with IBS.... you can make up your own mind who they are and read their posts. My own qualitative experience is that those who have IBS as well as celiac disease are the ones who think 200ppm is OK, malt is safe and grain alcohol is fine.

[jerseyangel]

Many celaics continue with IBS.... you can make up your own mind who they are and read their posts. My own qualitative experience is that those who have IBS as well as celiac disease are the ones who think 200ppm is OK, malt is safe and grain alcohol is fine.

Call it IBS, additional food intolerance or a touchy digestive sysyem--I continue to have problems over a year after beginning the gluten-free diet.

I almost never eat out (2 times since), bring my own homecooked food on trips, don't eat processed food at all anymore and cook or prepare everything I put in my mouth.

I wouldn't think of touching malt or grain alcohol--and I believe that for me, zero ppm (as close as I can realisticly get) is the only acceptable level.

Not everyone with "IBS" as well as Celiac is less than dilligent with their diets--can't always tell a book by it's cover

[Guest nini]

Call it IBS, additional food intolerance or a touchy digestive sysyem--I continue to have problems over a year after beginning the gluten-free diet.

I almost never eat out (2 times since), bring my own homecooked food on trips, don't eat processed food at all anymore and cook or prepare everything I put in my mouth.

I wouldn't think of touching malt or grain alcohol--and I believe that for me, zero ppm (as close as I can realisticly get) is the only acceptable level.

Not everyone with "IBS" as well as Celiac is less than dilligent with their diets--can't always tell a book by it's cover

Hang in there Patti, it took me 2 years before the IBS went away... yep took that long to heal.

[jerseyangel]

Hang in there Patti, it took me 2 years before the IBS went away... yep took that long to heal.

Thanks, Nini

I'm trying to be patient Guess I'm just having a bad couple of days.

[gfp]

Call it IBS, additional food intolerance or a touchy digestive sysyem--I continue to have problems over a year after beginning the gluten-free diet.

I almost never eat out (2 times since), bring my own homecooked food on trips, don't eat processed food at all anymore and cook or prepare everything I put in my mouth.

I wouldn't think of touching malt or grain alcohol--and I believe that for me, zero ppm (as close as I can realisticly get) is the only acceptable level.

Not everyone with "IBS" as well as Celiac is less than dilligent with their diets--can't always tell a book by it's cover

Sorry you're right, I was really countering that against the IMHO silly statement that patients with IBS show no reposnse higher than placebo on gluten-free diets. I hope you recover fully, my mother took a lot longer than me, I think that the longer you eat gluten the longer the repair process and in the really unlucky ... (well lets hope that's not you)... sorry, I bunched you together with others, its always a danger in statistical statements ....

[RKB-MD]

From a personal standpoint (no doctor stuff here), I have found that when I have glutened, either intentially or unintentially, especially over a period of time - say a week on vacation with eating out every meal - when I am in the recovery period, I sometimes get reactions to foods I had not reacted to before. For example, about 6 years ago I thought I had developed a lactose intollerance, but I can associate it to a time when I was also consuming gluten. After several months of lactaid, and gluten free, I was then able to consume all dairy with the exception of a glass of milk - that still does me in. Weird as I can add real cream or 1/2&1/2 to coffee without issue.

I am aware that there is (was) a suggestion about a genetic link to lactose intollerance and sprue.

Regarding imodium - I will never touch the stuff! I've had some abdominal surgery (again as a kid - such a fun childhood!) and several bowel obstructions requiring adhesiolysis. Last time I tried imodium I felt like I did when I was obstructed. I usually take Kaopectate to try to slow things down - but the caplets I had were expired and I didn't feel like being far from the toilet yesterday. Pepto leaves my tongue black and doesn't seem to help at all.

The banana daquiris helped last night - I'm actually contemplating eating today...

[jerseyangel]

Sorry you're right, I was really countering that against the IMHO silly statement that patients with IBS show no reposnse higher than placebo on gluten-free diets. I hope you recover fully, my mother took a lot longer than me, I think that the longer you eat gluten the longer the repair process and in the really unlucky ... (well lets hope that's not you)... sorry, I bunched you together with others, its always a danger in statistical statements ....

No problem--and I'm sorry if I was being overly sensitive.

[gfp]

From a personal standpoint (no doctor stuff here), I have found that when I have glutened, either intentially or unintentially, especially over a period of time - say a week on vacation with eating out every meal - when I am in the recovery period, I sometimes get reactions to foods I had not reacted to before. For example, about 6 years ago I thought I had developed a lactose intollerance, but I can associate it to a time when I was also consuming gluten. After several months of lactaid, and gluten free, I was then able to consume all dairy with the exception of a glass of milk - that still does me in. Weird as I can add real cream or 1/2&1/2 to coffee without issue.

I am aware that there is (was) a suggestion about a genetic link to lactose intollerance and sprue.

I can go a but further (and we discussed these things before at length ) but all my intolerances dissapear or are much less pronounced gluten-free.

Of all things I have a allergy to lavendar (kinda ironic) and geraniums. A drop of perfume with lavendar oil will bring me out in a huge rash when glutened and pre gluten-free ... but when gluten-free i can actually just get a very mild irritation from pure lavendar oil (I can't help myself, I'm a scientist before you ask why would I put pure lavendar oil on me)

Hay fever is exactly the same.... and exactly as you describe, a single glutening however big doesn't trigger it but seperate smaller but sustained episodes do...

Regarding imodium - I will never touch the stuff! I've had some abdominal surgery (again as a kid - such a fun childhood!) and several bowel obstructions requiring adhesiolysis. Last time I tried imodium I felt like I did when I was obstructed. I usually take Kaopectate to try to slow things down - but the caplets I had were expired and I didn't feel like being far from the toilet yesterday. Pepto leaves my tongue black and doesn't seem to help at all.

Isn't bismuth subsalicylate the active ingredient in both?

On immodium.... yep it can be a bit too much but for me I find the physchological and neurological effects much worse than the actual D.

I mean yep D is embarassing, cramps can be painful etc. but I find what we call "brain fog" is the worst aspect for me. I can't think of anything else that binds so effectively to the endorphin receptors (but Im not an MD so perhaps you can) but its pretty much engineered to do that, all round a better go at engineering opiates than heroine turned out to be! Talking of that kaolin and morphine is very effective still if you can get it!

The banana daquiris helped last night - I'm actually contemplating eating today...

That's good. Other light things that can help are peppermint tea... and a lot of people swear by cabbage ... I'm not a huge fan myself but add it to my chicken soups. Any or all of these might just be placebo but there are much worse ones than banana daquiri and who really cares if you feel better anyway?

[debmidge]

Banana Daquiri --- I'll take that medicine

[Fiddle-Faddle]

Hi, Dr. Russ, I just wanted to add my (belated) welcome aboard!