How Strict Do We Need To Be?

[Rusla]

Radman-- If you want corn pops may I recommend Gorilla Munch by Enviro Kids they are gluten-free and very good.

[radman]

Hi all,

Thanks for the great links. The BMJ article is very helpful. It shows a relatively modest excess risk of malignancy which to me is reassuring. More importantly, the excess risk primarily in the first year after diagnosis. This time frame implies diagnostic bias, rather than cancer caused by the celiac. This would be expected to take years to develop. The higher upfront risk is likely due to the fact that people presenting with GI sx's of celiac get medical evaluations and endoscopies and these find cancers that may be unrelated. This type of correlation is seen all the time.

The typical epidemiology of cancer induced by the process itself, in this case celiac, would show excess risk weighted to the out years, usually 5-20 years later.

Also, much of the excess risk, and certainly at least some of it, is due to genetics. This may also be the case for many of the autoimmune problems. It is not necessarily that celiac (or specifically poorly treated celiac) CAUSES the malignancy or autoimmune disease, but that the genetic susceptibility may travel in groups. In other words the HLA genotype that is associated with disordered immune response is the cause of both the celiac and the autoimmune illnesses. They are correlated, but not necessarily causally.

If this is the case, avoiding gluten would have no effect on whether or not you develop autoimmunity in other forms. There is no doubt for example, that patients with Rheumatoid Arthritis have a higher risk of developing Systemic Lupus Erythematosis, but better treatment of the RA would not reduce the risk of SLE.

As an analogy:

Suppose there is a gene that is related to both baldness in men, and heart disease. One would see, and does see, a strong correlation between male pattern baldness and heart attack. If you just look at the fact that bald men have a higher risk of heart disease, you may mistakenly think that the lack of hair causes the heart disease. You might then madly try Rogaine or hair tranplants to diminish your risk of having a heart attack. This might make you look better (or worse depending on the skill of the hair surgeon), but it would not reduce your risk of heart attack.

Thank Malley for the unfortunate news on the corn pops. I looked at the ingredient list, and there it is plain as day "wheat starch". Dang.

Well I'll have to try some cocoa pebbles and Gorilla Munch (if I can find it). They sound pretty good though

[Lisa]

Oh my God, we have caught and captured a doctor. I am glad Radman likes active discussion or he'd be out of here in a flash.

Once again welcome to the board, I think. It is obvious that many of us like to bounce things off you and glad for your responses.

Hang in there Radman, learn and pass the word. Glad you're here.

Lisa.

[VydorScope]

Thank Malley for the unfortunate news on the corn pops. I looked at the ingredient list, and there it is plain as day "wheat starch". Dang.

Well I'll have to try some cocoa pebbles and Gorilla Munch (if I can find it). They sound pretty good though smile.gif

Mainstream cearels..

GM Cocoa Pebbles

GM Fruity Pebbles (WITHOUT MARSHMELLOWS)

Normal Cocoa Puffs (NEW CHANGE make sure you got new formula)

75% less Sugar Trix (NEW CHANGE make sure you got new formula)

Thats all that I know of in the mainstream cerals, there are some of the genrics that are good too. Then you ahve the speciality cerals that are usuall over in the "organic" or "health food" sections such as Envirokids line (Gorrilla Much, Panda Puffs, Kola Crisps).

[gabby]

Are you really a medical doctor? Or are you just someone masquerading as George Clooney?

[Guest BERNESES]

Radman- Glad you decided to stick around. I, like many others on the board, react to minute amounts of gluten. I can't imagine how sick I would get if I took the burger out of the bun and ate it. However, two things- one, in the beginning, I was not that sensitive. I just felt low grade hideous all the time. Depression, GI problems, 20 lbs weight loss. Very, very sick- they actually thought I had cancer or AIDS because my symptoms were so extreme. I found that just removing the major sources of gluten (not the hidden ones) gave me an immense amount of relief almost immediately. But I found that the more I got it out of my diet and the more I learned about what it was in, I realized that even the smallest amount via cross-contamination would make me almost sicker than I had been before I stopped eating it.

I don't know how long my case has been active (looking back I suspect probably since I was a child- I'm now 38) but clearly I ate gluten for all those years without feeling "too bad". end result- I was so sick I even thought I was dying. I would just hate to see you continue to consume gluten and end up like that. even if you don't develop intestinal lymphoma or another autoimmune disease, it could still significantly affect your life and health. I have been gluten-free for about a year now and I am only now just starting to feel like I could return to work full-time. You may not get anything as serious as cancer, but you could significantly impact the quality of your life.

Ironicay, my biopsy showed no damage at all yet I couldn't function. it was really really scary.

Tthat being said- I'm glad you decided to stick around. I can honestly say if my symptoms had not been so severe, I too would have been much less inclined to worry abaout things like CC and i may have felt that cheating occasionally was no big deal. But my body showed me otherwise. I have often said that I think this diet is probably hardest for people who have no symptoms or minimal symptoms. I'd probably be a lot more temmpted to "'cheat" if my body didn't go ballistic.

[Rusla]

Step right up folks, come one, come all..we have a real live doctor in our midst. Yes, we have one brave doctor who has joined the ranks of disgusted and bitter Celiacs.

Yes folks he was captured wandering in the hallowed halls of Celiac.com and we are thrilled to have lured him in with gluten-free food and smelly stool talk.

Now you over there, don't you be poking at this rare find with a stick. We got him in here and we don't want to be chasing him off. Let's offer him a gluten-free brownie and a bowl of Gorilla Munch and maybe some Jerk Swordfish.

[ianm]

Oh my God, we have caught and captured a doctor.

Yes, and soon he will be turned to the Dark Side.

[Guest BERNESES]

Yes, and soon he will be turned to the Dark Side.

Ahhh... the dark side. radman- I'll make you gluten free brownies anytime! Just tell me where to send 'em

[Guest nini]

I make the BEST gluten-free chocolate chip cheesecake!!! LOL

[Canadian Karen]

I suck at baking - I'll just send Altoids.......

Karen

[CMCM]

As a newly self diagnosed (by diet response only) celiac, I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc.

I have been eating tons of gluten for every day for years and living with the consequences (moderate symptoms, primarily loose bowels and low grade malabsorption). I find that that all magically goes away with simple avoidance of gluten containing foods.

However, I assume some others have much more severe reactions, thus the strict avoidance and worry for cross contamination, etc.

Are there others like me, with very troubling, but less serious reactions, that don't have to worry quite as much? An example would be, say, Kellogs Corn Flakes or Rice Crispies. These are flavored with a small amount of malt flavoring (made from barley). I've been eating those and so far I don't think they bother me.

Or am I just risking trouble?

The way I see it the only real trouble is the concern for maligancy due to long term inflammation in the small intestine (I happen to be a cancer doctor). A little malabsorption now and then won't lead to serious nutritional deficiencies or osteoporosis (if very occasional, I'm not suggesting to constantly eat small amounts, just not to worry about tiny amounts or a rare slip up). And as far as intenstinal lymphoma caused by untreated celiac, well I have only seen a handful (less than 5) cases of intestinal lymphoma in 15 years of practice treating only cancer. And I doubt all of these patients had celiac as a cause. So I would say this is a very rare complication, given that there are thousands and thousands of undiagnosed celiacs walking around untreated.

Sorry for the ramble but I've been wrestling with these issues. So how about it, any others who have milder forms of celiac? What do you do?

What you mention really is the crux of the issue to me. I'm 56, I ate gluten my whole life until 2 months ago. I tested with both a celiac and a gluten sensitivity gene, but having those genes doesn't necessarily mean I have celiac disease. I tested positive on the antibody test, but the malabsorption test was a low figure within the normally expected range. I don't intend to have a biopsy so see if I actually have intestinal damage and therefore the medically accepted diagnosis of celiac disease. I may or may not have it, but at the very least I am gluten sensitive with all that entails. So where to go, how rigid to be? This appears to be what is medically unknown at this point. My celiac mother got diagnosed in her mid 40's. She felt it was triggered by a hysterectomy....extreme symptoms began short after that. So did she have active celiac disease before that point? We'll never know, SHE doesn't know. It took her 7 or 8 years of acute illness to be diagnosed....her intestines were smooth as a billiard ball, her doctor said, so a lot of damage was done. She went gluten free at that point, gained back her lost 40 pounds within a few months, her intestinal villi regenerated rather quickly, and she is now 85 with no cancers ever, no big problems. She is fairly careful only because if she eats any gluten accicentally she gets violently ill. But she ate Rice Krispies for years, she makes things for her family occasionally with flour, she doesn't really worry about wheat in shampoos etc. (these don't make her sick). Her motivation with eating carefully is she doesn't want to get sick, pure and simple.

But I got a gluten sensitivity gene most likely from my father (presumably my celiac gene was from my mom). Looking back at his health, the things that bothered him were within the scope of celiac/gluten reactions: high blood pressure, slight overweight, diabetes 2 in his early 60's, sinus issues, unexplained fatigue, and the cancer which killed him at 73. Was this because he never got diagnosed and continued to eat gluten? He never smoked or drank, lived a healthy life, so could it have been celiac that did him in? And my 60 year old brother probably has one or both the genes I have, and he got prostate cancer at 53 or so. Could it be from celiac as well?

I just wish the medical world knew more about it. I too would like to know if one could avoid gluten for a period of time, clear up the inflammation, and then only occasionally indulge. I'd like to think so....but apparently no one knows. If one gets very sick from any trace of gluten, then the answer of what to do is obvious. If the reactions are tolerable, it's less clear what to do.

I guess this doesn't help much, I'm just mulling things over as well.

[radman]

I agree with everything you said CMCM, and I personally doubt the cancers, such as prostate, have anything to do with celiac.

And thank you all for the welcome, I hope I can repay all of your helpful advice with an occasional worthwhile comment.

Now tomorrow I'm going full out strict gluten free, no corn pops tomorrow.

[Rusla]

I suck at baking - I'll just send Altoids.......

Karen

I can share my Gorilla Munch.

[skoki-mom]

I agree with everything you said CMCM, and I personally doubt the cancers, such as prostate, have anything to do with celiac.

And thank you all for the welcome, I hope I can repay all of your helpful advice with an occasional worthwhile comment.

Now tomorrow I'm going full out strict gluten free, no corn pops tomorrow.

If you like your cereal in the morning, I recommend Nature's Path cornflakes. I'm was never big on cornflakes before (would much rather have rasin bran, yum), but I find actually quite palatable. Good luck tomorrow! Pack your meals for work as I can pretty much assure you the hospital cafeteria can't accommodate your needs. At least the cafeteria where I work can't. I depend heavily on Thai Kitchen (check the website for the gluten-free varieties) or I'd never make it through the shift. Packing 3 meals on a 12 hour day shift requires a bit of effort, no doubt you are frequently there much longer than 12 hours. People make jokes about the size of the lunch bag (a mini-cooler) I drag in to work every day, but you do what you have to do. In desperation there is usually a pop machine and a bag of chips around.............

[Canadian Karen]

I would go nuts without my cereal in the morning. I have Gorilla Munch from Envirokids, with hemp seeds sprinkled on top - delicious!

Karen

[gfp]

dsvvsfd

[Canadian Karen]

Gorilla Munch is a type of cereal from Envirokids. It's very good - alot like corn pops.

Hemp seeds are extremely good for you and no, you wouldn't test positive. Here's a link:

Open Original Shared Link

Open Original Shared Link

Karen

[nikki-uk]

I just felt low grade hideous all the time. Depression, GI problems, 20 lbs weight loss. Very, very sick- they actually thought I had cancer or AIDS because my symptoms were so extreme.

I don't know how long my case has been active (looking back I suspect probably since I was a child- I'm now 38) but clearly I ate gluten for all those years without feeling "too bad". end result- I was so sick I even thought I was dying. I would just hate to see you continue to consume gluten and end up like that. even if you don't develop intestinal lymphoma or another autoimmune disease, it could still significantly affect your life and health. I have been gluten-free for about a year now and I am only now just starting to feel like I could return to work full-time. You may not get anything as serious as cancer, but you could significantly impact the quality of your life.

For me Berneses comments sums it up for me.My husband was so very ill the docs were sure he had cancer or Aids.He had no quality of life(he was bed ridden)

Okay,you may not end up with lymphoma,or it may take 20 yrs or more-but for my hubbie it's about the quality of life he had.

He was also dx with Psoriatic Arthritis 4 yrs before dx of celiac disease.

He just can't take a chance on EVER going back to being that ill.

I actually think he has been a coeliac since childhood,-so you could assume it took 30 yrs odd for him to get that ill.But at the end of the day it's about damage limitation!

I'm glad we finally have a doc on board,and Radman has raised such interesting questions,I've been glued to this thread!

One things for sure-there's alot about this disease that we don't yet know the answers to.

[VydorScope]

Radman,

I still go back to my oringal question... how many ciggerattes a day should I smoke? After all one wont kill me ... right? I geuss my education being so routed in Math, I just do not see "alittle damage over time" being a good postion. To me its like saying "The bridge will be okay if you only take two nails out a day, becuase Joe over there will put 1 nail back in" (damage vs healing). Sooner or later that bridge is comming down.

While I am not at the level of CC paranoia that some here are (I execpt some CC risk as the reality of life), I would not choose to knowningly eat gluten (such as Corn Pops), nor would I even considered leting my son (see avatar!) even getting close to gluten. To me thats like saying "Well as long as I have a fitler on my cigs, and only smoke 1 a day I am fine". (for the record I dont smoke!)

Since you say you going to true 100% truly gluten-free for a while, I will defintly try to follow your results, I think you will sing a different toon the first time you get gluten after that.Reason being is that humans are design to "get used" things after a while, and most times you do not know how sick you are till you get better. I did the gluten challenge THREEE times, and trust me you notice it then!

I agree there are defintly different levels of symptons. My son almost died from gluten (dx'd at 18months old), while I just slowly got sicker over decades of time. To me that just means in my sons case they took 10 or 20 nails for even one put back in. Same end game, just a shorter path to it.

Thats just my NON_DOCTOR opinion on it, but one of my college degress is in Statistics and that gives me a , IMO, a far better understanding of testing and results then the average person.

[gfp]

sgfd

[radman]

Egg and cheese on a corn cake for me this morning. I gotta find some of those Gorilla things.

Vydor, I understand your cigarette analogy, and as I've said before the prudent person would simply avoid all exposure. However, smoking an occasional cigarette may not be recommended, but if it is only occasional it will not greatly affect health risks. Certainly nothing like the typical 2-3 pack a day for 30 years lung cancer patient I see. But for me personally, it is about balancing risk and benefit. I do that everyday when applying ionizing radiation to patients with cancer. And there IS a benefit to not having to be so hyperconcernced with things like cross contamination, and maybe I could even have a bowl of rice crispies now and then. So then the question becomes: What is the risk? There is a lot to learn here.

One thing though, that you might consider. NancyM gave me a link to a site with with some expert Q and A yesterday. Dr. Fine's response to the strictness question referenced that every person has a threshold exposure below which gluten causes no detectable intestinal damage. That threshold varies from person to person.

So when considering the statistics, realize the the risk curve may not begin to rise until the threshold is reached.

Beyond that, the risks we are talking about here have to do with intestinal damage, and what I really want to know is the risk of low level exposure to specific problems, like osteoporosis etc.

Anyway, that's just my personal interest. I am not one to just do what I'm supposed to do, I tend to question. This may not always be wise, as I've said. But then again, sometimes it is

Have a great day all!

[VydorScope]

Egg and cheese on a corn cake for me this morning. I gotta find some of those Gorilla things.

Vydor, I understand your cigarette analogy, and as I've said before the prudent person would simply avoid all exposure. However, smoking an occasional cigarette may not be recommended, but if it is only occasional it will not greatly affect health risks. Certainly nothing like the typical 2-3 pack a day for 30 years lung cancer patient I see. But for me personally, it is about balancing risk and benefit. I do that everyday when applying ionizing radiation to patients with cancer. And there IS a benefit to not having to be so hyperconcernced with things like cross contamination, and maybe I could even have a bowl of rice crispies now and then. So then the question becomes: What is the risk? There is a lot to learn here.

One thing though, that you might consider. NancyM gave me a link to a site with with some expert Q and A yesterday. Dr. Fine's response to the strictness question referenced that every person has a threshold exposure below which gluten causes no detectable intestinal damage. That threshold varies from person to person.

So when considering the statistics, realize the the risk curve may not begin to rise until the threshold is reached.

Beyond that, the risks we are talking about here have to do with intestinal damage, and what I really want to know is the risk of low level exposure to specific problems, like osteoporosis etc.

Anyway, that's just my personal interest. I am not one to just do what I'm supposed to do, I tend to question. This may not always be wise, as I've said. But then again, sometimes it is

Have a great day all!

Always question! Do not stop questioning, the day you do is the day you become a salve to popular opinion and give up any freedom we have!

I certinly believe there is a lower limit to where gluten impacts us. Just as I can safly eat arsenic in small doses (ever eat an apple? Then your living proof!), I believe if quantity of gluten is low enough it no longer matters.

What I doubt is our abbitliy to find that lower level with any degree certinity. Since the only way with present tech to find it is long term repeated exposure with routine bisopys to measure impact, and to use a statiscly sound number of random samples of the celiac population, well thats just more then I am will to ask of my fellow celiac disease sufferer.

So it comes do to , HOW will you know your eating a "safe" ammount? It apperas to be well established that symptons are a poor indicator of damage, what would you use for your ruler?

[Canadian Karen]

Radman,

I can understand your position and accept the fact that you wish to question the need for such strict adherence to the diet.

If I were in a different position, I may have also decided to follow that path. Be that as it may, I am the mother of four young children who depend on me. God has blessed me with these children (even after I was told by a Gyno at the age of 20 I would have a 50/50 chance of ever being able to conceive due to the endometriosis!), and it is my belief that it is my duty as a parent to make every effort possible to remain gluten-free as much as humanly possible so I can hopefully at least try to stop this downward spiral of my health. So many years have gone by without a proper diagnosis that my intestines are destroyed past the point of repair, but at least I can stop further damage from occuring.

One must also consider the fact that others depend on us and our actions directly affect not only ourselves but others who love us and depend on us.

In regards to the Gorilla Munch, you should be able to find it in any health food store that carries gluten free items - they are a pretty popular gluten-free item and usually easily found.

Take care,

Karen

[Guest nini]

I found Gorilla Munch at Kroger and Publix and Whole Foods...

I love Nature's Path Mesa Sunrise multi grain flakes... I pour honey all over them and then pour milk in the bowl... love it!