Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

radman

How Strict Do We Need To Be?

Recommended Posts

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.

You may want to explore the possibility of other intolerance. I had thought I was getting cross contamination from a lot of foods like potato chips, thought I couldn't handle vinagers because I would react to ketchup etc. After 3 years of off and on recurrance of symptoms I finally realized it was the potatoes and tomatoes. Everytime my DS would come home from college for the weekend I would make a big pot of either chili or gluten-free stew. Everytime he left I would get sick. I then spent a few days, after I was symptom free eating potatoes or tomatoes with each meal, it only took 3 days to realize I had found the problem. The point is that many of us may have other intolerances that will come to the light after we have been gluten-free. I was able to link the nightshade intolerance to my recurring joint pain (but no swelling unlike gluten), and the blood in my urine that had me so worried (I was terrified of cancer but after my experiences with the urologist I was afraid to go back. After being told I am novacaine resistant he wanted to do a painful procedure with NONE not more, I got up and ran and never looked back), and my DH is finaly really, really healed. :D The point of this is that we tend to attribute symptoms to the celiac, that is natural and expected but if you have been gluten-free for awhile and you are pretty sure there is no CC you may want to check to make sure other intolerances are not present. I knew about dairy and soy but never thought my favorite innocuous potatoes could be a problem.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites
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 :unsure: ). 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.

Radman, please don't worry about selfdiagnosis, in this instance it is not a bad thing, many of us have had to resort to that. I would like to suggest that you not try right away to replace your gluten foods with gluten-free alternatives. Wait if you can for a couple of months and eat Gluten Free by eating foods that are naturally free of the poison. Eat fruits, veggies, meats, potatoes, rice etc but don't try right away to replace your pizza crusts and breads. You need to get the addictive substance totally out of your system, and most gluten-free alternitives to baked goods are very different from the gluten filled ones. A bit more time between the poison and the good flours may make the taste and texture of them easier to get used to. Using corn tortillas is a great idea and there is also rice tortillas available in some places that are good. Also please be sure to replace your toaster and check your toiletries and shampoos, even if you don't think it is really needed. I am glad you came back on and I hope you take any knowledge you gain and spread it far and wide amongst your peers. And please turn on your computer and show other doctors this site whenever you can, there is so much for all of us to learn.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Radman,

Welcome to the board. After you are done getting your "friendly" lectures, hope you find this place welcoming. No one messes around with gluten around here!! LOL! I think like we all agree, once one goes gluten free, then their bodies become way more sensitive to even very small amounts of gluten. This is why we worry about even the small amounts, because we don't like being sick and feeling horrible. It is out of necessity. I think the same thing will probably happen to you. The first four months I felt great. I have three kids and cooked for them too and ate out a small amount. As time went on I all the sudden started feeling as bad as I had before, so out of necessity I had to be very careful about cross contamination. Some people don't know when they have small amounts or any at all, so they probably aren't as careful.

My husband is a resident in Radiology. We will be moving to MD for this year to do a Chest Fellowship. I am an RN and used to work in the NICU, but now I am a stay at home mom to three boys.

My 14 month old son had all the classic symptoms of celiac. I diagnosed him, because his blood work had come back normal. THis is common in young children, but no one told me that. He responded SO dramatically to the diet it was quite obvious. He had never had a normal bowel movement in his life, among many other things that changed. Then I realized I had many symptoms have celiac, which had gotten much worse after having him and so I went gluten free. I had the bloodwork done after two months gluten free and it was borderline. I didn't want to start eating gluten for a biopsy, so never had one. I am very careful about not getting gluten or feeding it to my son.

The only problem with not getting a formal diagnoses, is that if you start feeling better you might start thinking as time goes on that it was all in your head. This happened to me and it took me several times of "testing" myself. I am done doing that though and suffering the consequences. I feel great now and the diet is well worth it! I just thought I was the "smelliest" female out there and never knew why. I think for a long time it just gave me gas. My husband was very happy to have me following the diet! LOL!

Goodluck. There are great things out there to eat. I am also vegetarian. I eat alot of the Kinnikinnick frozen pizza crusts, their english muffins and chocolate covered donuts are good.

The Gluten FRee Pantry mix is great for making a sandwich. It does get dried out fairly quickly though, so I freeze and then thaw it out as I need to. It is a great bread that you don't have to toast.

Tinkyada pasta is great. Pamela's Pancake mix is great and there are good premade cookies and packaged cakes, etc. Just be sure you are checking for gluten or else you won't ever make much progress.

Goodluck,

Monica

Lori,

I am sorry you aren't feeling any better and feel worse now. I was having the same problem for awhile. I am not sure what to tell you. Are you eating well? Are you making sure you are eating a wide variety of foods. Have you had your thyroid checked?? Maybe something is wrong with your thyroid now? Just an idea.

Maybe your body has become more sensitive to small amounts of gluten. THis definitely happened to me. Maybe you should have a follow up biopsy done to see where you are at healing. I do think you can start feeling worse if you are getting any gluten. I know how you feel though. I am sure like me though, you are being as careful as you can. Hope you start feeling better soon. I know it doesn't make the diet very appealing when it seems to be making you feel worse.

Monica

Share this post


Link to post
Share on other sites

Radman--I guess most of us ,with our lack of faith in the medical profession in diagnosing this is well founded as you knew the same problem existed. I have not tried to make pizza crust yet but I plan to out of my Bette Hagman books. Her other recipes that I have tried have turned out great. On the issue of Bm's you will have a very hard time grossing this bunch out. We are always discussing poop here. I guess I was the classic adult child with my bloated belly etc., with this thing.

Skoki-mom--You had best have your B-12 levels tested and your thyroid. As those were the two things that made huge amounts of my hair fall out and believe me I felt like I was dying with severe B-12 loss and thyroid problems.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

Share this post


Link to post
Share on other sites

Radman,

There is absolutely no way you can gross any of us out in your descriptions of bowel movements. Trust me, we have discussed it at length, in great detail, the texture, colour, consistency, frequency, smell, etc. etc. We have even celebrated when someone finally got a normal one! :lol:

There's not too much that we don't feel free discussing openly on this forum. ;)

Take care,

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites

Good morning everyone!

I've read all the posts and appreciate all the information.

And halleluah for mallysmom and skokimom and some of the others who can relate to my initial comments (about strictness of the diet for things like buns touching burgers). I see that there ARE others with less severe symptoms who have been wondering about these things.

Clearly if one is experiencing severe symptoms or ancillary problems like brain fog, fatigue, pain, headaches, etc. then obviously a hyperstrict diet makes perfect sense. But for others who have ONLY minor (relatively) GI sypmtoms, the whole issue looks very different.

Again, I think this disease is highly variable in its intensity and not all of us are the same. This is true of so many diseases. As an analogy think of the spectrum of disease for diabetics- from borderline glucose intolerance which doesn't require treatment to brittle diabetes requiring glucose pumps and die from diabetic coma and ketoacidosis if they don't strictly regulate their blood sugars. Most are in between and are managed quite well with simple oral medications and dietary changes that many don't follow anyway. I assure you the risks of other health problems related to diabetes is very different between these patients.

But for now, I have taken the advice many have offered to go completely gluten free for 3 months or so, then try a little gluten challenge and see how it goes.

And thanks for all the advice on food. I am beginning to agree that trying to replicate traditional foods like pizza may be a disappointing strategy, and finding new ways to eat is smarter. I still think I'll give the Kinnikinick crust a try and maybe even follow the recipe given for a generic crust, before I give up and use a corn tortilla :)

Please, for those who have different points of view, make them known and lets all try not to be too critical. We can't learn from each other if people are afraid to bring up thoughts outside of the general consensus.

Thanks again!

Share this post


Link to post
Share on other sites

If you are Novacaine resistant, alot of times lidocaine can help. Novacain does squat for me, but lidocaine works, and I am officially my dentists wussiest patient.

Radman, when I first got diagnosed I thought I could skate on a few areas. Once I went gluten free my sensitivity sky rocketed, and my body is very clear that it doesn't want this anywhere near me. I am now as 100% as I can be, though cr@p happens, and I do eat out alot, though if bread has even touced the plate I won't eat what's on it. I won't eat the butterfinger chocolate bar onteh table because it says processed on equipment that also processes wheat, cause I know I'll have a reaction. I wish I was less microsensistive, but I'm also grateful, because its a constant reminder when I get lazy that, yeah I really do need to do this.

I hope it works for you and that you see an improvement when you go 100%. It does make a difference.

Elonwy


Positive Bloodwork 7/8/05

Inconclusive Biopsy 7/20/05

gluten-free since 7/23/05

Never felt better.

"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"

Share this post


Link to post
Share on other sites

For pizza I used to use this recipe during my low-carb days, it was fantastic and I never missed the crust. It had all the flavors I loved best. But since then, I've found out I'm unable to process dairy either and I doubt I'll find a pizza sans cheese I would want to eat, might as well have Thai food. :D

Deep Dish Pizza Quiche

I'm not sure what it is either but giving up gluten my system got a lot more sensitive to food. Maybe the gluten sensitivity just masked the other ones? I'm on a low-starch diet for other reasons (another autoimmune disease) but I've eliminated all grains and dairy. Pretty much I eat fruits, veggies and meats along with a few interesting things like coconut milk yogurt.

Share this post


Link to post
Share on other sites

Man, all of the stuff I miss when I'm gone for the weekend! <_<

Welcome, Radman! So glad a dr. is on here!

You'll find that many of us are adamant because life before gluten-free SUCKED! I feel lucky that I only had problems for 3 years before dx. I'm also glad that doctors aren't throwing narcotics at me any more for stomach pain. When you're doubled over with pyloric spasms and can't function, something is seriously wrong! Try telling a gastroenteroligist that when you're only 20.

After a week totally gluten-free, I get scary reactions to gluten, and it doesn't matter if I eat a stack of pancakes or if a molecule of the flour from the pancakes make it into my hashed browns, my reaction is still the same. People treat gluten like an allergy because for a lot of people it behaves like one. Personally, I'm stoned, sweating, and have a pounding heart in 10 minutes. And then the cramping and depression starts. It's scary, especially if I need to drive, speak, walk in a straight line, etc. Other people notice something is wrong almost before I do. And I'm not allergic to wheat, in any way shape or form, but the immune system is still in high gear.

And seriously, you'll notice the brain fog going away when you're gluten-free. Sometimes you don't know how miserable you were until it's gone. It's like a toothache, you don't realize how much it hurt you all the time until you get it fixed. I do a little dance when I have a normal bm, it's ridiculous.

I have an incredible respect for doctors, since many in my family are/were in the medical profession as nurses. Even though you're an oncologist, you're still a doctor, and you should be respected as such. I respect you because you're doing the research, which is more than many doctors are really willing to do.

Stick around, the best way to know how to deal is to learn from those that came before us. :)


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

Share this post


Link to post
Share on other sites
Guest Robbin

I am glad you're back Radman. I found your example of a diabetic very interesting, since I have thought of these parallels and see it in my own family.

MALLEYSMAMA--I want to first say I am sooo glad you are really trying hard to stick to this, but listen, maybe you should think about this, my son that has type I diabetes since age 9, initially "felt" whenever he was in hypoglycemia (low blood sugar) Now, at age 21, he doesn't feel it coming on and it is scary. There are some similarities.

Also, again, just speculating- Let's say someone goes for years with symptoms and some damage occurs. Then, they go completely gluten free and their body suddenly is "stable". Maybe the severe reaction that occurs when accidently glutened is from damaged nerves or some hormone stimulation. Like a hypoglycemic--the reaction to sugar--their bodies OVER-produce the insulin response. Interestingly, a large number of us are hypoglycemic, too. Maybe we should do a survey. How many have severe reactions to gluten and how many are hypoglycemic? There is obviously a severe sensitivity in certain people and the reason is?? Perhaps further gene research will uncover another gene that is involved in determining who will get severe reactions and other food intolerances, or maybe a certain kind of damage has to occur elsewhere in the body. There are so many risks involved that it is something I wouldn't want to chance. Take care all. :)

Share this post


Link to post
Share on other sites
Like a hypoglycemic--the reaction to sugar--their bodies OVER-produce the insulin response. Interestingly, a large number of us are hypoglycemic, too. Maybe we should do a survey. How many have severe reactions to gluten and how many are hypoglycemic? There is obviously a severe sensitivity in certain people and the reason is??

You know, one of the biggest things that went away was the hypoglycemia, but if I get glutened, it comes back a little bit. It's wierd to feel hungry like a normal person. I have read that hypoglycemia is a symptom of Celiac. Makes sense to me.


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

Share this post


Link to post
Share on other sites

Good morning everyone!

I've read all the posts and appreciate all the information.

And halleluah for mallysmom and skokimom and some of the others who can relate to my initial comments (about strictness of the diet for things like buns touching burgers). I see that there ARE others with less severe symptoms who have been wondering about these things.

Clearly if one is experiencing severe symptoms or ancillary problems like brain fog, fatigue, pain, headaches, etc. then obviously a hyperstrict diet makes perfect sense. But for others who have ONLY minor (relatively) GI sypmtoms, the whole issue looks very different.

Again, I think this disease is highly variable in its intensity and not all of us are the same. This is true of so many diseases. As an analogy think of the spectrum of disease for diabetics- from borderline glucose intolerance which doesn't require treatment to brittle diabetes requiring glucose pumps and die from diabetic coma and ketoacidosis if they don't strictly regulate their blood sugars. Most are in between and are managed quite well with simple oral medications and dietary changes that many don't follow anyway. I assure you the risks of other health problems related to diabetes is very different between these patients.

Hi Radman,

It is true that the intensity of the disease is quite variable. My step-daughter just has to look at a bread crumb and she gets sick for 2 weeks (ok, I am exaggerating a little on the looking at it!) She suffers from malabsorption, which I believe her is one the worst case scenarios. This happened because of misdiagnosis. For me, it isn't quite severe. I probably have things that have traces of gluten in it and don't know it. Yet, on the other hand, I was having some major stomach issues and the only way I can figure out what is causing this problem has been going on the Specific Carbohydrate Diet. Basically, think baby food and Elimiation Diet where it is a limited diet where every week you start adding things back in every 2-3 days.

But yes you are right not every Celiac is the same. But it is great that you are giving the gluten-free diet a chance to see how you feel. I look forward to hear your experience!


Laura

Started SCD 3/16/06

Diagnosed by Enterolab 2/06/06

IgA & tTg Positive, Malabsorption negative

HLA-DQB1, 0303 0302

Casein IgA positive

gluten-free 2/8/06

Celiac Blood Panel Normal 2/13/06

Rheumatoid Arthritis 7/05

Share this post


Link to post
Share on other sites

Again, I think this disease is highly variable in its intensity and not all of us are the same. This is true of so many diseases. As an analogy think of the spectrum of disease for diabetics- from borderline glucose intolerance which doesn't require treatment to brittle diabetes requiring glucose pumps and die from diabetic coma and ketoacidosis if they don't strictly regulate their blood sugars. Most are in between and are managed quite well with simple oral medications and dietary changes that many don't follow anyway. I assure you the risks of other health problems related to diabetes is very different between these patients.

I just want you to know that there is no such thing as a "brittle" diabetic. That is an antiquated way of thinking. I am on an insulin pump, not because I am out of control and have bad blood sugars and don't follow a good diet, but because I want to maintain the best control available for a diabetic at this point in time. Insulin pumps are widely used by diabetics trying to maintain the best control possible and not because we can't get control. It mimics the pancreas closer than MDI (multiple daily injections) and perfects the dose from .5 a unit to .1 of a unit. Also the two types of diabetes (I and II) are completely different and cannot be compared. The only similarities are symptoms - the buck stops there. Type 2's are generally diagnosed because of obesity, which causes insulin resistance, which can then turn into diabetes if not treated, and they can manage with diet and exercise, may need meds and may eventually need insulin. A T1 has historically been diagnosed in children (such as my case) and is thought to be hereditary our only choice is insulin, as our pancreas has stopped producing it. T2's have insulin resistance and that's exactly it - RESISTANCE vs NONE at all.

Sorry - you struck a chord here, with me. It's not a good analogy.

Peace

Ehrin


My name is forgettable, so I invite you to remember this tale." (RG)

Diagnosed with celiac disease, by biopsy, 10/05

T1 diabetic since 2/80

Share this post


Link to post
Share on other sites

I am glad you're back Radman. I found your example of a diabetic very interesting, since I have thought of these parallels and see it in my own family.

MALLEYSMAMA--I want to first say I am sooo glad you are really trying hard to stick to this, but listen, maybe you should think about this, my son that has type I diabetes since age 9, initially "felt" whenever he was in hypoglycemia (low blood sugar) Now, at age 21, he doesn't feel it coming on and it is scary. There are some similarities.

Robin, your son is experiencing hypoglycemic unawareness and this is very simple to reverse.

I, around your sons age, (I'm 29 now) was experiencing the same thing due to having too many lows. All I had to do, to notice them again, was to run higher for about a week. This is very reversible.

Google hypoglycemic unawareness and you'll see what I mean. :)

Peace

Ehrin


My name is forgettable, so I invite you to remember this tale." (RG)

Diagnosed with celiac disease, by biopsy, 10/05

T1 diabetic since 2/80

Share this post


Link to post
Share on other sites

Hi Ehrin,

sorry my analogy didn't sit well with you. My purpose is not to analyze diabetes, my only point is that diseases are highly variable from person to person. Not everyone is the same. Diabetes, breast cancer, high blood pressure, you name it . They all vary in severity, and the treatments are tailored to the severity. Not paying close attention to your salt intake when your BP is 138/85 is not the same as when your BP is 180/100. The consequences are very different. Now please, no hypertension sufferers need to reply, the analogy may also not be perfect, but the POINT is relevant.

So I did have a backslide slightly today, maybe those corn pops this morning. Now the advice to try to eat simple meals and not tempt fate seems the only way to go for the next few months. I wish I had more time for self preparing meals, but I'll do my best.

Hey Fiddle Faddle, don't be offended, but we appear to think the same way!

:lol:

I would like to re-emphasize that my personal concern is not short term symptoms (that is important but secondary). My concern is long term ramifications of less than strict gluten avoidance. I can regulate it to whatever controls my bowel symptoms and that will be just fine (I'm not saying I am going to do this, but just thinking about it). If I am at risk for other problems by doing this, then it is not wise. I don't believe there is clear evidence of what this type of approach to diet will do to long term risks of osteo or intestinal lymphoma which are my chief concerns. And again this is my own personal assessment for my own body. I am not advocating anything just letting my thoughts out to stimulate discussion.

Share this post


Link to post
Share on other sites

Hi Ehrin,

sorry my analogy didn't sit well with you. My purpose is not to analyze diabetes, my only point is that diseases are highly variable from person to person. Not everyone is the same. Diabetes, breast cancer, high blood pressure, you name it . They all vary in severity, and the treatments are tailored to the severity. Not paying close attention to your salt intake when your BP is 138/85 is not the same as when your BP is 180/100. The consequences are very different. Now please, no hypertension sufferers need to reply, the analogy may also not be perfect, but the POINT is relevant.

That's quite alright! I agree, no one is the same Celiac or diabetic, but I just wanted to point out that pump users are not pump users because we cannot maintain control - it's quite the opposite. And that T1's and T2's cannot be compared - the equation just wont add up. If I can educate one person than my job is done!

I've been diabetic much longer than celiac (25 years vs 6 months) so I am learning just as much as you at this point as well as hypothesizing. So yes, your point is relevant, but I just wanted to bring some accuracy to it! :)

Peace

Ehrin


My name is forgettable, so I invite you to remember this tale." (RG)

Diagnosed with celiac disease, by biopsy, 10/05

T1 diabetic since 2/80

Share this post


Link to post
Share on other sites
I would like to re-emphasize that my personal concern is not short term symptoms (that is important but secondary). My concern is long term ramifications of less than strict gluten avoidance. I can regulate it to whatever controls my bowel symptoms and that will be just fine (I'm not saying I am going to do this, but just thinking about it). If I am at risk for other problems by doing this, then it is not wise. I don't believe there is clear evidence of what this type of approach to diet will do to long term risks of osteo or intestinal lymphoma which are my chief concerns. And again this is my own personal assessment for my own body. I am not advocating anything just letting my thoughts out to stimulate discussion.

Here's an article you may find interesting in regard to autoimmune diseases: http://www.uveitis.org/medical/articles/case/maid.html

And here's an article on malignancy and celiac disease:

http://bmj.bmjjournals.com/cgi/content/abridged/329/7468/716

Misery loves company, and that is true of autoimmune diseases. Long term with untreated Celiac, you're more likely to have other autoimmune problems like RA, diabetes, thyroid problems, etc.

Other long term problems? Sterility, dental enamel defects, periphreal neuropathy (there are those on here that feel like they're walking on stumps), chronic anemia, malabsorption, hypoglycemia...the list goes on. There's also a chance that your villi will become so damaged that they don't heal, even after being gluten-free. Nevermind osteoperosis and the lymphoma. I believe you're at higher risk of other bowel cancers, as well, not just the lymphoma. You'd know more about that than me, considering you're an oncologist.

The thing about dietary control by sympotoms is that you will never know how the gluten is affecting you. You don't know how much damage you have to do to cause symptoms. There are those out there that were asymptomatic and were tested only because of chronic anemia.

Also, I would be afraid to walk that line, because you ingest one microgram above your tolerance and you get sick. You never know how much the gluten affects you if you're never totally gluten-free. It's hard enough to do this diet without purposefully glutening yourself, because while we all strive for totally gluten-free, there is plenty of cc that happens. It's part of life in this day and age.


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

Share this post


Link to post
Share on other sites

Radman, there's a celiac site that several prominent Celiac researchers answer questions. I think I've even seen the "what happens if I'm not 100%" question come up a couple times.

http://www.clanthompson.com/exp_doctor.php

In fact, one question was identical to yours that Dr. Fine answered:

Is a strict gluten free diet really necessary?

QUESTION: A gastroenterologist that I know told me the other day that "They are finding that a strict gluten-free diet isn't really necessary for Celiacs."

This is the furthest from anything I have heard or read in any of the Celiac Organizations, or new studies by current experts. Did I miss something somewhere? This doctor is actually the consultant for our local Celiac Support Group, and we need to know whether this is accurate information or not.

Thanks in advance for your answer!

DR. FINE: As you say, this is the farthest thing from the truth, and the worst thing a doctor can tell a patient. Unfortunately, this is not the first time these words have been uttered by a doctor.

But here is the fact, and he may be aware of a study of which I am not. With respect to induction of intestinal histopathology only, every person likely has a threshold amount of gluten below which may not induce an intestinal reaction (symptoms cannot be used to determine this though). We know that it is the concentration of gluten in the intestine that is one of the many determinants of how and why different people manifest diifferent amnounts of gluten-induced intestinal damage and in different anatomic locations of the small intestine (e.g., just in the duodenum vs. all along the bowel in the severest cases). So as long as the gluten concentration stayed below that threshold level in that particular person, then theoretoically they could eat a certain amount of gluten and not have detectable damage in the gut by biopsy. But reactions from the mouth to the small intestine are likely to be enough to stimulate the immune system so this may not be safe overall. This is the problem for studies of oat consumption as well. They may not cause villous atrophy in everybody, but reactions still do and may occur.

Contrary to your doctors comments, a study of which I am aware from England looked at a "Low-gluten diet" rather than a gluten-fre diet in adolescents (as many such celiacs cheat) and they found much in the way of continued intestinal damage and symptoms.

Life long, strict gluten free diet is still the only and best treatment for celiac disease and clinically significant gluten sensitivity.

Thank you for your question.

Share this post


Link to post
Share on other sites

you gotta cut it out completely!

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?

Share this post


Link to post
Share on other sites
And again this is my own personal assessment for my own body. I am not advocating anything just letting my thoughts out to stimulate discussion.

B) Well I guess that's a good sign that you still feel brave enough to "stimulate discussion" with us! :P

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites
Radman you need to understand that for most of us doctors have done far more harm than good to us. Aren't doctors supposed to first do no harm? It seems all doctors know how to do anymore is be dope dealers. We are thrilled that a doctor has FINALLY decided to take some initiative and learn about celiac. We don't mean to make any personal attacks but it is hard for our anger to not come through sometimes.

I kinda agree with this quote here. I have had "intestinal issues", "nervous stomach", "stress issues" etc for about 3 years now. My main symtpom is gastro (D, cramps, grumbling, nausea) but I also suffer frm depression and anxiety and brain fog, and my doctor for 2 years just said it is IBS, oh it is stress blah blah blah food has nothing to do with it. Well in my case this was not true. Finally after 2 years my PCP referred me to a GI (4 days before going I went gluten-free and on the first day had a smi solid stool after 2 years of constant D). Well the Gi said we are going to do a Colonoscopy and Endoscopy and see what is going on... and I would have to start eating gluten again. Well I started eating gluten again and bam more D. So I got these scopes done and everything was normal... villi are fine, no visible inflammation in colon, but had micropscopic inflammatioon so my doctor pinned me with Inflammatory bowel disease. None of the meds to this date have worked regarding the inflammatory bowel disease. So I moved when I got married and had to get a different GI doctor... he wasnt convinced I even had IBD when he reviewed the records. He said that the prep for the scopes could have caused the inflammation or I could possibly have microscopic colitis... much less severe than UC or Crohns for sure! He said come back after tax season (I am an accountant and am very busy now) and we will see what we can do. Well I found Dr Fines Enterolab online and sent in some stool for tests. Well these tests came back gluten and casein sensative with NO inflammation to rule out UC and crohns... Hmmmmmm. Well I just wanted to get across that doctors arent always right and if I would have stayed with my original GI doc then he would be doing more harm than good by saying diet has nothing to do with it and since you are having D then eat more white bread, bagels etc! Well that is worst way of treating what I have! I am just so relieved that I have found out what is going on and I am working on going Gluten-free Casein-free... but wont totally until after my honeymoon in May because I wont be able to ask teh resort if they can accomodate someone with my sensativities... for now Imodium will do fine.


Dx'd with Ulcerative Colitis March 05

New GI doctor not convinced I have UC but maybe Microscopic Colitis

Dx'd With gluten and casien sensativity through Enterolab

Gluten score was 40 and casein score was 16.

Ready to feel better through a gluten-free/CF diet!

GO TERPS

Share this post


Link to post
Share on other sites
So I did have a backslide slightly today, maybe those corn pops this morning. Now the advice to try to eat simple meals and not tempt fate seems the only way to go for the next few months. I wish I had more time for self preparing meals, but I'll do my best.

Oh Radman!! I'm sorry to have to break this news to you. I just found out a week or two ago. But, corn pops now have Wheat starch in them. Stupid, I know. I emailed Kellogs and complained - but just for my benefit - not because I think they'll do anything about it. I grew up eating that cereal - and now my choices are limited to Cocoa or Fruity Pebbles. (I'm a huge cereal eater - so this is torture!!) But, I'm trying to be good. Good luck staying with simple meals!


Diagnosed by biopsy with Celiac at age 1 in 1984.

No other health problems.

Hubby - no health problems.

Mallory (2 year old daughter) - no known health problems at this time.

Hannah (born 04/02/07) - no problems yet!

Family - no one diagnosed with Celiac - ever - to our knowledge. (Lucky me!)

Share this post


Link to post
Share on other sites
Oh Radman!! I'm sorry to have to break this news to you. I just found out a week or two ago. But, corn pops now have Wheat starch in them. Stupid, I know. I emailed Kellogs and complained - but just for my benefit - not because I think they'll do anything about it. I grew up eating that cereal - and now my choices are limited to Cocoa or Fruity Pebbles. (I'm a huge cereal eater - so this is torture!!) But, I'm trying to be good. Good luck staying with simple meals!

I dont' mean to change the subject of the thread...but don't be afraid to branch out and try all natural brands of gluten-free cereals. There's tons of them. Arrowhead Mills, Perky Nutty Rice and Erewhon are really really good!


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

Share this post


Link to post
Share on other sites

And my personal favorite--Envirokidz Peanut Butter Panda Puffs! So good, you can eat them as a snack, right from the box ;)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites


  • Celiac.com Sponsors (A19):


  • Member Statistics

    • Total Members
      91,951
    • Most Online
      6,255

    Newest Member
    SDBella
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      115,586
    • Total Posts
      969,308

  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)


  • Celiac.com Sponsor (A22):


  • Blog Entries