How Strict Do We Need To Be?

[mouse]

PLEASE lets not do another thread with hostility. It IS not productive in the least. He came to us for some answers and SECONDARY he is a doctor. If someone cannot deal with this then they need to go to the doctor bashing thread and not this one.

[Canadian Karen]

I agree, Armetta........

We need some of that "LOVE" from the end of the religion thread over here! LOL!

Hugs.

Karen

[ravenwoodglass]

Man so much negativity.

I said I was a cancer doctor because I am a cancer doctor, not that anyone should really give a rip. To state it more precisely, I am a radiation oncologist, if you are a stickler for professional monikers. Sorry if that is a problem for some of you. I came here to get some help with my celiac not get a hatchet job by some people with "issues".

Well gotta say, folks, there seems to be just to much animosity around here.

Please try to remember the long, painful and often humiliating road that so many of us took to get where we are. Very large numbers of us were belittled, disbelieved, and thought to be everything from drug seekers to mentally ill. It took a very long time for us to develop the distrust that many have of the medical profession in general. You say your symptoms so far are pretty mild, most of us can not say that, many have lost celiac loved ones to early deaths related directly to undiagnosed gluten intolerance. We all of course realize that you had absolutely nothing to do with that but for some of us the anger we still feel is very real. If I myself have said anythig that you feel attacked you as a person I apologize, it was not meant that way. You need to read as many posts as you can, learn as much as you can from all of us and encourage testing of everyone you see and all your family members.

[jerseyangel]

Yes, Radman, please stay around. There is so much to learn here! I stumbled onto this site 2 months after my dx. I had no idea about checking my products, cross contamination, or that anyone else was experiencing exactly what I was going through. I was lost after my dr. told me to go on the gluten-free/dairy free diet, gave me an outdated food list and said--see you in 6 months! I learned that this is more than a diet, it's a lifestyle. The people here are very caring and knowledgeable. I wish you would take some time and read through some of the past threads. You will see how much this board has become a source of support and comraderie as we all try and navigate our way through this. A lot of us are still angry and feel betrayed by the medical professionals that were supposed to help us. There are lost years, chronic health problems, failed jobs, marriages, and relationships resulting from years (in some cases) of undiagnosed Celiac. You had nothing to do with any of that and we all know it. This is a subject that we are all very passionate about. I truly hope you choose to stay a member of our community. I think we have a lot to offer each other.

[VydorScope]

I hope you do not leave, I hope the community here can get beyond its predjuices and sterotyping to see you as a fellow suffer with celiac disease in need of help. MANY here already do, such as my self!

[Guest BERNESES]

I hope you do not leave, I hope the community here can get beyond its predjuices and sterotyping to see you as a fellow suffer with celiac disease in need of help. MANY here already do, such as my self!

Well said- and by many of you. radman- I hope you stick around. I don't care what you do for a job. You're a person (until proven otherwise ).

[Ursa Major]

Hi radman, and welcome to this board. I really hope you'll stay. If you are serious about learning how to live well with celiac disease, this is the place to be.

And sure, I got ticked off a couple of times by things people said (it doesn't help that I can be oversensitive due to Asperger syndrome) and left for a few days, but just had to come back . And there are some people here who I don't really care about (I WON'T name those). But most people here are fabulous, and I wouldn't know what I would have done without their knowledge and advice. No matter where you go you'll encounter people you don't like, that's life.

Now to cancer: I believe it is a misconception that celiac disease only causes intestinal lymphomas. First of all, it appears that an awful lot of celiacs have had their gallbladder out, because they got gallbladder disease, me included (as well as my mother and my sister, and many women on this board). My mother, who had all the same symptoms as me (unexplained weight gain, depression, alternating diarrhea and constipation, debilitating pain in all joints and muscles, heart palpitations and heart racing (at times up to 200 beats a minute, resting), anemia (my ferritin was down to 4 at one point), irritability, rashes, night sweats long before even pre-menopausal...............and the list goes on) had a heart attack at the age of 65, and died of liver cancer a year later. Her mother died of stomach cancer when my mother was 20. I doubt that it was a coincidence.

Many people here were diagnosed with fibromyalgia before being diagnosed with celiac disease. I was in such awful pain that I was on 50 mg of codeine contin twice a day, which would just take the edge off the pain, and often had to take 100mg plus extra strength Tylenol at night to be able to sleep. When I went off gluten, first of all the chronic diarrhea (which I had for 6 months previously) stopped overnight, but within a day my terrible backaches started subsiding, and within two weeks I was off the codeine, because the pain was so much better! Fibromyalgia is considered an autoimmune disease, and in my case, and I believe many others here as well, I believe that not only is there a clear correlation to celiac disease, but I make the claim that the fibromyalgia was actually CAUSED by the celiac disease.

I've had symptoms of celiac disease from the time I was a toddler, but it was never recognized. By the time I was 7 I had chronic backaches, joint and muscle pains, depression, was thin as a stick, had severe asthma. I was eventually ignored, because NOBODY can have all those problems for real, can they?

Anyway, please do yourself a favour and find yourself a nice 100% gluten free cereal for breakfast, and try to be completely gluten free for a while, to see what gluten really does to you. As others have said, you may be surprised at what you'll find. You will never know unless you do this simple experiment. I am sure others here will have some great suggestions on excellent gluten free cereals. I don't, because first of all, I've never liked cereal (when I grew up in Germany, cereal was considered baby food, and I WILL NOT eat baby food for breakfast! ), and secondly, I am intolerant to ALL grains, they make me sick.

[Carriefaith]

Now, I'm gonna go try to make a pizza with a bag of Gluten Free Pantry's pizza crust mix. Sure hope it doesn't dissapoint, I really miss my pizza

My favorite pizza crusts so far are kinnikinick pizza crusts. I can find them at my local grocery store, but you can order them online.

Open Original Shared Link

[frenchiemama]

I'm actually not sure why so many people took my comment as hostile. I was irritated by the initial attitude, yes. I am blunt, yes. I have never in my life been accused of being a people person, nor is my last name Sunshine. I also don't really feel the need to force the horse's head into the water once it has been led there. My answer to people who ask "Don't you think that you are over-reacting?" is and always has been: You are free to do as you choose, I personally choose to be careful. Don't question my choices, and I won't question yours. I apologize if people took my statements as hostile, they were not. I do, however, stand by the statements themselves. That is how I feel. Please feel free to ignore me if you don't like what I have to say.

[Guest Robbin]

Hi Radman and Welcome to the forum. I personally think you were very brave to tell anyone you were a physician on this board. Many of us, probably most of us, have been treated badly by a doctor or two (or three) and have a lot of anger issues. I am sorry that maybe some took out frustration/anger on you. That is unfortunate, since you are looking for answers just as we all are.

I sincerely hope you will remain with us. I am fearful for your health, and hope you go completely gluten free. I have had a suspicion, as you have that what "triggers" the autoimmune response to gluten could be also the "trigger" to a host of other related illnesses in susceptible individuals. That possibility alone is reason enough to be fearful of further gluten consumption.

One of my disturbing symptoms/consequences has been a severe vision distortion which has crippled my life, (along with the D, cramps, hair loss, fibromyalgia, infertility, endometriosis, and horrible itchy rashes, etc.)

I just turned 45. You need to keep your health, not only for yourself and family, but for the patients you will undoubtedly help. I care that you live a long time to do this. I had to give up a dream of a career in medicine years ago due to the fact that I was financially strapped and too sick all the time to work and go to school at the same time. Please realize that it is only with good wishes that I say this to you and extend the olive branch. STAY WITH US, PLEASE!!! WE CAN HELP EACH OTHER.

[ianm]

Radman I do hope you stick around because we need doctors like you to understand what this disease does to a person. Since your symptoms are mild you really don't seem to understand how desperatly sick many of has been and still are, sometimes to the point of almost dying. I lost my marriage to this disease and it almost destroyed my career. I feel like I wasted the first 36 years of my life because of this disease and I got NO HELP WHATSOEVER from the medical community. You have never been called a psycho, hypochondriac or someone who just wants attention when you know you are deperately ill. You were never put into special education as a child because your brain fog was so bad you could barely function. Until you put yourself in that position you will never truly understand why so many of us hate doctors as much as we do. Doctors are supposed to help us not laugh at us at dismiss us as lunatics. We have good reason to hate and mistrust doctors but we also want to believe that we can change that.

[Canadian Karen]

Radman,

I hope you read the link I gave you earlier about how we are trying to get the word out. Those were the best ideas we could come up with so far, but if you have any other suggestions from a medical community point of view, they would be greatly appreciated! We have come a long way in the last 5 years (e.g. in the choices of gluten free food in supermarkets alone), but we still have a long way to go in getting more than just the tip of the iceberg diagnosed......

Take care,

Karen

[Rusla]

Hi Radman,

I hope you stick around there is so much we all have and can learn from each other. There are times we all sound bitter and it is because so many of us have gone through our lives being told "it is all in our head" while we suffered.

This place has been my lifeline and we can help you as much as you could help us. There is one thing on my mind that, is probably on many peoples minds here. As you are an Radiation Oncologist, I wonder if you had to go through what many of us have gone through or if you think you were listened to more or not because of professional affiliation. I would be interested to hear your thoughts on this.

I know I have thought that most of us had to fight to be believed because we are not medical practitioners. Now that we have a real medical doctor in our midst your opinions would be very helpful to me and I believe to others here.

[radman]

Hi everyone,

well the gluten free pizza I spent all evening making was horrible. Now I must continue my quest for a reasonable facsimile, the Gluten Free Pantry mix tasted like potato flakes.

Now, I'm gonna try again to share, but try not to be too judgemental. I was asked about my experience with doctors trying to get a diagnosis, and the truth may sound strange, but here it is:

I actually never tried to get a diagnosis in the proper way. My symptoms have always been primarily loose, gassy, malodorous, floating bm's (sorry if I'm grossing you out ). It came on gradually, was somewhat intermittent, with periods of more frequent symptoms and periods of no symptoms at all. I never had anything more severe than this problem and like a lot of men, I avoided going to the doctor and mostly tried to hide it out of embarassment. Yes, I know, what a chump, but hey, like I always say, it's the way God made me Besides, I also know well the limitations of our medical system in dealing with these types of issues.

Now over the past year or so my symptoms have gotten worse in frequency and somewhat in intensity, so I had to admit that I needed to do something. I started researching before going to the doctor since, Like Sy Syms used to say "an educated consumer is my best customer". I usually get the best medical care for my family if I gently guide the process a bit. Figured it couldn't hurt for myself. I considered celiac, went gluten free for a few days, and bingo no more problems. That's pretty much where I'm at now. I'm trying to figure out if there is any reason to go to the GI doc now, since my response to diet seems pretty dramatic. I have no great desire for an endoscopic biopsy that just doesn't strike me as necessary. I might send for the enterolab test kit and continue my ill advised self diagnosis ("a lawyer who represents himself has a fool for a client" probably applies here).

So I think I'll try the Kinnikinnick pizza crust next.

[skoki-mom]

Frankly, I feel like crap most of the time since I started this diet. I used eat well, what would be described by most as a "well-balanced" diet. I had no gastric issues besides gas once in awhile (like I might have to go lay down due to gas for 15-20 min once every 3 or 4 months). I had great energy. I had healthy skin and hair. With the exception of stealing Santa's gingerbread man on Christmas Eve and licking a beater of cookie batter once (force of habit, as soon as the taste hit my tongue, I was like "oh crap, I shouldn't have eaten that"), I can honestly say I have been gluten free since August 27 (so 7 months). Even on those 2 occasions, I had no reaction (outwardly) whatsoever. Since going on the diet, my hair is falling out, my skin is dry dry dry, my poop has the consistency of toothpaste, I cry almost every day over something, I'm tired and easily frustrated, not to mention freaking starving half the time. If this is "healing", I think I'd rather be sick quite frankly. I often wonder why the heck I am doing this. Well, it is the fear of cancer and fibromyalgia pretty much that makes me adhere to the diet.

Well, just read what I typed and frankly I'm not entirely sure what the point of my post is. I guess I would just have to disagree that not everyone who has been on the diet for 3 months, 6 months etc can say they feel better. Someone I'm sure will probably say "no, it takes a year" or "have you checked all possible sources" (short of living in a gluten-free house, yes). All I can say is I know how *I* feel. I have no doubt that others have felt an enormous improvement in their health. Guess my only real point is there is no broad sweeping statement about anything regarding this disease. I learned in nursing school that "pain is whatever the patient says it is", and I suppose you could extend that statement to say "illness is whatever the patient says it is". I don't have any plans to start cheating on my diet as I feel it would be irresponsible for me personally.

[mouse]

Sorry about your pizza. I made the most awful one the other night and we ate it LOL. I guess we were totally hungry. They say that doctors make the worst patients BTW, you will probably make some lousy food mistakes until you get the hang of it. Two years and I am still trying to get the hang of it . Not the gluten, just the cooking.

[skoki-mom]

. I have no great desire for an endoscopic biopsy that just doesn't strike me as necessary.

I had a biopsy because I had to know for sure. I'm not saying I have any issues with anyone who chose not to go this route, as people have a lot of valid reasons for chosing not to do so. However, there is no doubt I have this disease. As a nurse, I just needed to see the pathology for myself.

[Fiddle-Faddle]

Hi, Radman,

I'm pretty much where you are, as I don't have an official diagnosis, and my symptoms are probably even milder than yours. What makes me wonder if everybody here might actually be right about being so strict is how many other problems of mine disappeared with the gluten.

On the other hand,I think it's a pretty good question. We don't really know exactly how this all works. I took my son off gluten and casein when he was 5, not because I thought he had celiac, but because he was diagnosed with Aperger's, and he had had problems digesting millk in the past ( and I had immediately taken him off milk, and very gradually reintroduced it much later). When we started a GFDF diet, his social skills improved noticeably. When we slowly reintroduced them, thee were no noticeable setbacks, either in behavior or digestion.

I can't help wondering if small amounts of gluten in people who have little or no symptoms are a big problem or not. There are no studies, of course. It certainly seems like a reasonable presumption that, in people who have little or no symptoms, tiny amounts of gluten should not have the same effect as in people with lifelong severe problems. I have a friend who was diagnosed as a small child in New Zealand, and she says that the wheat in soy sauce doesn't have an effect on her. I am assuming that I carry whatever genetic material would predispose me to celiac, but I had no symptoms until this year, probably because this was the first year that I ever cooked a lot of bread and pasta--before this year, I had never eaten bread or pasta for dinner (or breakfast, either), just because that is how my mom cooked, too.

I still think it's an outside possibility that everybody in North America has some degree of gluten sensitvity--just look at the racks and racks of antacids, diarrhea meds, etc. out there.

On the other other hand, my big worry is immune system problems. I already have Hashimoto's (interesting to see where THAT goes as I stay gluten-free), had shingles, and had that hideous rash, and I have absolutely no wish to see my immune system do anyting else idiotic.

So I think it's perfectly reasonable for you to wonder, and equally reasonable for everyone to respond as passionately as they have--look again where they are all coming from! I don't think you have your mind made up, though--I think you are asking very intelligent, thoguhtful questions.

I hardly ever eat out. As long as I order gluten-free, though, I'm not going to worry about cross-contamination, at least ,not yet. I may in the future, we'll see. In the meantime, it's your body--do what feels right to you. I'd be interested in hearing what your experiences are.

As far as brain fog goes, I have had far more brain fog since going OFF gluten. Somehow, that doesn't seem fair....

Oh, I almost forgot--you can make quite decent pizza (by my lowly standards, anyway) by using corn tortillas as the crust. Another one that my kids all like is using cooked rice: cobine 2 cups cooked rice, one beaten egg, and 1 cup shredded cheese (I used sharp cheddar and added garlic and a couple of shakes of Italian seasoning blend). Bake for 16--20 minutes at 400 (I think), add sauce and cheese, and bake again. My kids scar it down--and I never said a word to them about it being different from the gluten crust that they were used to.

Hope you hang around!

[Guest Robbin]

Radman, I highly recommend that you get a good gluten-free cookbook. Any of Bette Hagman's books are good, and The Gluten Free Kitchen by Roben Ryberg is a good one, too.

[MallysMama]

Thanks folks, and I do respect your wisdom of experience.

However, I don't for a minute believe that a celiac is a celiac is a celiac. Classical celiac occurs in children with severe malnutrition, bloated abdomens, profuse watery diarrhea with dehydration, even death.

Man, I could eat a loaf of bread a day and never come close to that type of reaction (in fact I have done that before). Actually, I believe the problem with under-diagnosing of celiac is due to the highly variable symptoms and severity for person to person.

I don't think exposure to gluten is causally related to other autoimmune diseases. These are likely due to genetic susceptibility to autoimmune problems, of which celiac is one. These genes travel in clusters and no doubt many individuals with celiac have the genes causing susceptiblity to these other autoimmune problems (thyroiditis, rheumatoid arthritis, etc.). However, I am 42 years old and have been exposed to gluten virtually every day, and I have absolutely no other autoimmune problems. At my age it is highly unlikely that I ever will.

These are the main issues. Given my level of reaction, I don't think I need to be too rigid. I avoid bread, pasta, etc. But I'll simply take the bun of the burger or the croutons off the salad myself.

This is my own non-expert assessment based on my own level of intolerance, I am not suggesting others do this, just wondering what types of assessments others are making for themselves.

Radman,

I was so excited to read your first post (and this one). I completely agree with almost everything you've said and felt. (That's probably so because I, too, am in denial of the seriousness.) I get a lot of words of wisdom sent my way because of my relaxed attitude about Celiac at times. My symptoms are not very serious and don't put me down for days - more like just 10 minutes in the bathroom and I'm fine. I, too, just take the bun off of my burger and the croutons off of my salad. I work at Outback Steakhouse, have for 6 months, and I just barely, last week, requested the gluten-free menu when we went there to eat (we eat there ALL the time). I don't eat bread, pasta, etc. that has gluten in it - but I'm not overly-careful of "cross contamination." I just Barely decided to stop eating cereals (and it's "killin" me - so I don't know how long I'll last doing it) that have malt flavoring in them. I guess I, as the phrase says, "don't sweat the small stuff." (But I don't recommend it to anyone else...it's my own life in my hands - I don't offer these suggestions to anyone else.)

Oh, I almost forgot.

The comment about having increased reactions to gluten the longer one has been gluten free is very interesting. I haven't heard this before, but it makes sense, unfortunately. This could change things, obviously. If severe reactions develop from tiny exposures then the whole point is moot, and strict strict avoidance is the only answer.

I guess I'll will find out as time goes by.

This is one point in this thread that I don't agree with - ME being an example. I've had Celiac my whole life. I was one of those children (14 months when it got bad) that was malnurished (I have a nasty picture that looks like an ethiopian toddler) that you've heard about and thought that's all the disease affected. I grew up thinking the same thing - I had no idea, till I found this forum a few weeks ago, that so many people became gluten intolerant at an older age. In fact - I have a hard time finding anyone who got it as a child. Anyway - as I remember it, my symptoms used to be severe (accidently ate a pancake meant for my dad once and was in tremendous pain within an hour afterwards and was like that for 24 hours). However, the older I get and the longer I've had Celiac....the less severe my symptoms have seemed to be. And trust me, I know....I cheat often enough (though in small quantities - like a gold fish cracker of my daughter's) to be in pain all the time if I had severe reactions. I suppose that more research could be done into the possibility that my body has just stopped giving me those warning signs of damage...? Or maybe my body is building up immunity to the disease and I tolerate the gluten better - with less damage? (I know - this statement is giving many people heart-attacks to even think about...but you never know what could happen in rare cases, right?!)

Anyway - I welcome you, Radman, to this forum and appreciate your questions that are so simliar to mine! (It's nice to see that people give you, being a doctor, the same reactions and friendly "preaching" that they did to me - 22 year old non-doctor! At least they're being fair! ) I love this forum...it's teaching me a whole lot...and I really, honestly, am trying to be a "better" Celiac (for my sake, my daughters and hubby's sake as well). Good luck in all your research - and Keep on Posting!

[gfp]

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[gfp]

hgghd

[VydorScope]

Hi everyone,

well the gluten free pizza I spent all evening making was horrible. Now I must continue my quest for a reasonable facsimile, the Gluten Free Pantry mix tasted like potato flakes.

I have tried a zillion dif mixes/etc so far not been happy. Presently I am in my "bah, forget it got mroe important things to worry about" mode and just use Mission Corn Tortials as crusts. They are _ok_ I use a flat electric griddlle and liglth brown them first, then add suace, cheese, etc. Then cook them till the cheese is compeltely melted. Little bi of a corny taste to it, but its passalbe.

[Guest nini]

sorry your pizza was terrible... I do really love the Kinnikkinick crusts, so I hope you are pleased with them...

Mally'smamma, my theory on the reason you don't notice when you get glutenened is because of your constant cheating you have a low level of gluten in your system all the time... And it's true that some people go through periods in their life where they are less affected by celiac and at other times they are more sick. Just wanted to point that out.

Skoki Mom, you may have other food intolerances or anther health issue besides celiac that is going on, it's possible. Also, It took me a good 2 years before I really started feeling better.

[gfp]

jy