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BostonCeliac

My Doc Said I Could Cheat....

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Hi everyone.

This morning I had my 6 month follow up with my Gastro Doc. The first time we met, I felt like he was very non-chalant about the whole "celiac thing". I basically told him I was 95% sure I had it (my sister was diagnosed, plus positive bloodwork) and he said it could be, but it could be other things too, like IBS...

He didn't push the endoscopy, but I wanted it to be 100% sure + I wanted to know how much damage there was. He did it & sure enough it was celiac - he said he could tell even without looking at the biopsies they did.

SO - I've been all over the internet & this forum soaking up as much information as possible. And today I told him about some accidental gluten that was ingested (I ate 5 Bisquick pancakes thinking they were Pamela's!!) and how it didn't really affect me at all. Whereas some other times I think I got a hidden breadcrumb & was crampy and bloated.

From there he said that as long as a strict gluten free diet is followed "it's OK to cheat once in a while". I was really shocked to hear this.

By my understanding, this was NOT OK. I mentioned that I was surprised & he said something along the lines of it being a 'secret'.

I would love to hear what you all have to say about this.

THANKS!


Positive Bloodwork & Positive Endoscopy, Gluten Free since 8/29/06

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What do I have to say? Your doctor needs more education on celiac disease and the other health issues, including cancer, that it can cause!! This comment from him is proof that docs aren't very well educated on the disease.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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It's a "secret"??!?! That's a frighteningly close to unethical thing to hear from a doctor. Sure... cheating *once* a year isn't the end of the world (but still not worth it) - once a month is the equivalent of not following the diet however. What cheating once a year would do for you, however, is make it harder to stick to the diet as you're reminded - every year - of what you're missing, rather than finding a real alternative.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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umm, sounds like bad advice.. although it may come from "dr"...its not advice to follow. Accidental gluten is one thing, but saying "its okay to eat it".........nope IMHO

Typical advice you'd get from someone who does not have celiac and one who does not have to live with the after effect....

sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Hey all... I figured I would get responses like this, but for a minute I thought - am I missing something?

I really don't think he gets it at all. He only ever talks about the fact that there is a little Irish in me which therefore means celiac? ughh..

I'll tell you this - that was my last appointment with him. He told me I didn't need to come back anyway, as long as I stick to the diet. I just found out there is a Celiac Center here in Boston, so if need be - I'll go there.

Also - I hear you on the cheating tarnalberry -- I'm VERY good with the diet. I've had a few accidents, sure. But would NEVER just eat pizza for fun, gluten free food is actually good too! (except for the bread). It's just not worth it!


Positive Bloodwork & Positive Endoscopy, Gluten Free since 8/29/06

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..offer to bring in a fresh stool sample for the doc after you get glutened... :D:lol::lol:

...and drop it off just before lunch......


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Hi everyone.

From there he said that as long as a strict gluten free diet is followed "it's OK to cheat once in a while". I was really shocked to hear this.

This is our 1 week anniversary of my husband's celiac diagnosis. His dr also told him that it was ok to cheat, that there may or may not be repercussions depending on how much he ingests.

It seems this kind of misinformation is not unheard of.

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just to chime in my doc also told me it was ok to cheat, and i gotta tell you his attitude toward the whole thing upset me too. after my biopsies came back positive he basicly said "you have celiac, check in with a dietition" and that was it. he also chalked it up to my being irish.if not for this site and ALL THE AWESOME PEOPLE on it id be lost


diagnosed  Celiac in Feb 2007... having a real hard time commiting to the diet

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I'm glad to know that I have a good and Celiac educated doctor who tells me to watch my diet very closely, which of course I do.

I can't believe these doctors telling you to eat the very poison that makes you ill, and oviously damages your intestine! :o


Shirley

[save the Earth, It's the only planet with chocolate and wine.

It isn't about waiting for the storm to pass...

It's about learning to dance in the rain.

Gluten free since 1989

West Kootenay.... British Columbia

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I'm glad to know that I have a good and Celiac educated doctor who tells me to watch my diet very closely, which of course I do.

I can't believe these doctors telling you to eat the very poison that makes you ill, and oviously damages your intestine! :o

Viola I'm with you on this one! Under no circumstances should one ingest gluten once diagnosed with celiac disease. Even if one has no symptoms when ingesting gluten damage is being done to you intestines. In the long run the health crisis you face are not worth the cheating. I would find another another doctor immediately. This doctor doesn't seem to take celiac disease very seriously. This is really quite upsetting because if he is giving out this kind of ill advice his patients will pay for it at the end.

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From there he said that as long as a strict gluten free diet is followed "it's OK to cheat once in a while". I was really shocked to hear this

I am probably going to looked on as a pyraha here but I personally think while cheating once is a while is not acceptable - don't get too paranoid about the odd mistake. We all make them (see my classic oops). It is not the end of the world and you will doubtless not be hospitalized by dipping your lettuce leaf into a salad dressing that has malt vinegar in it.

Classic celiac disease is not like having a bee sting allergy, so we need to be very careful but not paranoid.

As I said at the top - this is not a popular way to think, but I have survived mighty well for forty years by making occasional poor judgements.

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From there he said that as long as a strict gluten free diet is followed "it's OK to cheat once in a while". I was really shocked to hear this

I am probably going to looked on as a pyraha here but I personally think while cheating once is a while is not acceptable - don't get too paranoid about the odd mistake. We all make them (see my classic oops). It is not the end of the world and you will doubtless not be hospitalized by dipping your lettuce leaf into a salad dressing that has malt vinegar in it.

Classic celiac disease is not like having a bee sting allergy, so we need to be very careful but not paranoid.

As I said at the top - this is not a popular way to think, but I have survived mighty well for forty years by making occasional poor judgements.

Kate, you're right about not getting to the point of paranoia. But that is just it: We all make mistakes at times and get glutened. It is inevitable in this gluten-filled world. For a doctor to then go and say it is okay to gluten yourself on purpose is insane.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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The 12th International Celiac Symposium was recently held in New York (Nov 2006) and what most Australian doctors took away from it was how little the North American doctors knew about it. These posts prove that. That is a terrible (stupid, unethical....) thing to say to a coeliac. Accidental poisoning is inevitable, so why add to your risk?

It is a crying shame you know, with the large population of coeliacs in North America (300 millions Americans, 30+ million Canadians) that the medical community is lagging behind you all.

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I also was told I could have gluten after following the diet for 6 months. I did not take his advice , and save the occasional glutening, I have been gluten-free since April '03. I do not believe my GI was being cavalier about the condition, rather it was a lack of knowledge of the disease process. At least he was looking for celiac 4 years ago !! I think a lot of them go on old information, and do not keep up with the fast changing research. I wish there was more current information being disseminated to physicians...I'd like to know what the federal government's initiative is actually doing on celiac enlightenment!! I try to direct more physicians to this website......but you gotta realize you all can be a tough act! Some of them wouldn't withstand the withering criticism , but they are most likely the ones to reap the biggest benefit!! End game......I let him know he was wrong about the periodic cheating.


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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My celiac sister came to stay with me for the weekend. She was diagnosed at a year old. She decided to have gluten free waffles, but didn't used the regular toaster. I went to say something and she said I don't worry about that. I was a little stunned. I've only been gluten free since the beginning of the year and know better. I even took her to a gluten free bakery. I was more thrilled than her. I have to say the owner was shocked that she'd never had a donut. They had gluten free ones. She is 7 years younger than I am. I can see why she has so many problems: Thyroid, fibromalgia, persnicity anemia, and arthritis, eczema. She will eat gluten if she feels it is worth the symptoms. I'm trying to figure out what I'm missing. I don't like the symtoms.

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Hi everyone.

This morning I had my 6 month follow up with my Gastro Doc. The first time we met, I felt like he was very non-chalant about the whole "celiac thing". I basically told him I was 95% sure I had it (my sister was diagnosed, plus positive bloodwork) and he said it could be, but it could be other things too, like IBS...

He didn't push the endoscopy, but I wanted it to be 100% sure + I wanted to know how much damage there was. He did it & sure enough it was celiac - he said he could tell even without looking at the biopsies they did.

SO - I've been all over the internet & this forum soaking up as much information as possible. And today I told him about some accidental gluten that was ingested (I ate 5 Bisquick pancakes thinking they were Pamela's!!) and how it didn't really affect me at all. Whereas some other times I think I got a hidden breadcrumb & was crampy and bloated.

From there he said that as long as a strict gluten free diet is followed "it's OK to cheat once in a while". I was really shocked to hear this.

By my understanding, this was NOT OK. I mentioned that I was surprised & he said something along the lines of it being a 'secret'.

I would love to hear what you all have to say about this.

THANKS!

My doc also said I could avoid gluten but not worry about "hidden" gluten like that in soy sauce or vinegar. He said this because 1) My bloodwork was normal on gluten and 2) My villi weren't damaged or flattened, the only evidence was white blood cells etc in my biopsy. He said he was comfortable with the celiac diagnosis only because of my positive dietary response.

My dietitian on the other hand instructed me never to cheat and to be vigilant for hidden gluten, even to the point of not walking into a bakery.

As bad as I feel after a little gluten, I'm not taking any chances. My decision on whether or not to have a gluten-free household will depend on my son's blood work and/or gene testing. The non-celiacs may have to go out for gluten. :P


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Heres the way I see it. If you don't cheat you won't need this doctor anymore. If you do cheat you will continue to have problems. Thus he can see your smiling face at least every six months or so and that vacation home in Bermuda will get paid for. :unsure:<_<:D


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)

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Hi everyone.

This morning I had my 6 month follow up with my Gastro Doc. The first time we met, I felt like he was very non-chalant about the whole "celiac thing". I basically told him I was 95% sure I had it (my sister was diagnosed, plus positive bloodwork) and he said it could be, but it could be other things too, like IBS...

He didn't push the endoscopy, but I wanted it to be 100% sure + I wanted to know how much damage there was. He did it & sure enough it was celiac - he said he could tell even without looking at the biopsies they did.

SO - I've been all over the internet & this forum soaking up as much information as possible. And today I told him about some accidental gluten that was ingested (I ate 5 Bisquick pancakes thinking they were Pamela's!!) and how it didn't really affect me at all. Whereas some other times I think I got a hidden breadcrumb & was crampy and bloated.

From there he said that as long as a strict gluten free diet is followed "it's OK to cheat once in a while". I was really shocked to hear this.

By my understanding, this was NOT OK. I mentioned that I was surprised & he said something along the lines of it being a 'secret'.

I would love to hear what you all have to say about this.

THANKS!

I thought I'd cheat one day even thou I have felt so much better! Wrong! My Mom has it my daughter has it but my blood work was -. So why not cheat-I got my answer-I got a migraine! No more cheating for me. And my daughter gets very sick if gets any by accident. I think the Dr. is crazy!

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:lol: I am laughing right now because I went to the gastro. for the first time yesterday and the second question out of his mouth was "do you have any irish in you?" (and I have naturally flaming red hair so it's pretty obvious). Maybe we should just pin the tail on the Irish and call us all celiacs to make diagnosis easier since we're the only ones apparently who get this wacky disease! :lol:

Amy


Diagnosed with Celiac Disease February 2007

Finally feeling better than ever!

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Well, my family background is Swedish and I have it, my mom is English/German, and she has it, and my Irish hubby doesn't! Go figure!

By the way, if a doctor says you can cheat I'd ask him where he learned that little bit of info...which study, which doctor etc. said it....you'll find he won't be able to tell you that. REmember that in medical training, info on celiac disease gets about 5 minutes of mention and a couple of paragraphs in a textbook! :angry:

:lol: I am laughing right now because I went to the gastro. for the first time yesterday and the second question out of his mouth was "do you have any irish in you?" (and I have naturally flaming red hair so it's pretty obvious). Maybe we should just pin the tail on the Irish and call us all celiacs to make diagnosis easier since we're the only ones apparently who get this wacky disease! :lol:

Amy


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Heres the way I see it. If you don't cheat you won't need this doctor anymore. If you do cheat you will continue to have problems. Thus he can see your smiling face at least every six months or so and that vacation home in Bermuda will get paid for. :unsure:<_<:D

Good perspective!

On the cheating front... ???

This is a mine field ....

The bottom lineis noone REALLY knows....

Take 2 extremes of cheating... you can pathalogically avoid anything with possible gluten, including things we are "told" are safe... and you can do the cheating opposite which is convince yourself things that might not be safe ARE...

I'm starting to wonder about a brand cider .... I keep getting ill BUT I can drink 2-3 bottles of good wine and other than killing a few brain cells... I'm fine... I keep telling myself the cider is gluten-free.... I am starting to suspect I'm cheating myself!

As a note.. in France ALL GLASSES legally have to be washed before using them (immediately before) as well as the normal dishwasher...

Which is best... obviously neither! Its like Sophies choice... but the alternative is what? In Europe and it looks like the US 200ppm or 20ppm is considered legally gluten free.... One thing I know is I get ill off this stuff... the same goes for grain alcohol...

It is my opinion (based on a lot of reading and observation) that a small amount on a regualr basis is worse for long term health than a large amount infrequently... quite what is a regualr basis and infrequent or a "small amount" I honestly can't say.

I would say anyone eating McDonalds fries is cheating... don't get angry they have been tested definitively to contain gluten...

Is it enough to harm you? That I cannot say but even if they didn't the chance of CC is SO HIGH as to make it a certainty if you eat there once a week for a year. To this list you can add sharing a kitchen, specially a toaster or about 300 other things many people do....

What is important is noone knows... how much ... how often ... what complications!

As tarnalberry says, once a month you might as well not be on the diet... I kinda agree ... once a month...week??? who's really sure???

What I am sure about is most MD's haven't got a clue about celiac disease....

as long as a strict gluten free diet is followed "it's OK to cheat once in a while".

The question is what is once in a while?

Obviously the best approach would be never to cheat but its hardly possible if you count eating out as cheating... and eating out always carries a risk...


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Well, my family background is Swedish and I have it, my mom is English/German, and she has it, and my Irish hubby doesn't! Go figure!

Because it doesn't make ANY difference.... there is NO SUCH thing genetically as Swedish, English or German... its as simple as that.

Let me put it this way... many Americans have celiac disease... does the fact I have American relatives make any difference to this?

No because America is a melting pot of races....

Europe is NO DIFFERENT... there is no Irish ... Americans that say they are American Irish are just kidding themsleves and being nostalgic... in reality the Irish in a gross view are a mix of Vikings, Celts, English, Saxon and lots of Spanish... and that's just major groups...

Would a black Irishman have a higher or lower chance of celiac disease than an African American?

The number of Irish, Swedish or whomever that say they are racially pure is just a joke... Do you think the white americans didn't rape black slaves? The genetics of African Americans is mixed with caucasian and almost no African American who's family has been in America since slavery has no caucasian blood... similarly the English raped the Irish and Scots although in a more methodical and scientific way... the idea was that you put English blood into them and they were less liekly to rise up...

The Vikings were not known for asking permission either....

And all of this supposes that peple are not lying... a very large percentage of children are not the biological produce of their supposed and legal fathers... Random sampling shows 1:25 in N. America and Europe... in more primitive cultures its probably far higher...

Doctors who make diagnosis based on supposed heritage are VERY dangerous..... that is why its a legal requirement to check blood type before a transfusion, regardless of the mother swearing blind the blood type of the father!


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Your doctor is an idiot.

The "secret" is that you can cheat as much as you want if you want to remain sick all the time.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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