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How Does Everyone Feel When They Cheat?

Guest Jemenii36

By Guest Jemenii36
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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VioletBlue Contributor
VioletBlue
Posted

Never cheated. I'm 45. I don't want to die young. Well, okay, some would say that ship has already sailed. But I don't want to die at fifty. There is way too much I want to do with my life to check out that early. My life depends on this diet, and I value life in a way I never have before. I don't know, maybe you do have to be closer to the end than the beginning to treasure every extra day you get.

Violet

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  • Replies 59
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Franceen Explorer
Franceen
Posted

Since I never really had a FORMAL and OFFICIAL via a positive test - at first I duped myself into thinking that the Capn Crunch and Rice Krispies I was eating once per day, weren't "enough" to worry about. I had terrible awful DH, and no "reportable" stomach symptoms at the time. People on this forum chided me and told me that I could be doing damage even without a dx and symptoms. When my DH nearly killed me my Dr told me to go 100% "no-cheat" gluten free and see what happens. I did, with the help of this forum, and it's wonderful, helpful people. And the DH disappeared completely, except for when I accidentally get Glutened (which DOES happen when you travel, eat a restaurants that you don't choose, and get a "glucose free diabetic meal" instead of a "gluten-free meal" on a plane (14 hr flight) and HAVE to try to pick at the most innocent looking items (and then you get Glutened anyway!).

I DO NOT CHEAT.

When I get glutened accidentally, now I get the big D and gas for about 1 - 2 days!

(IHOP scrambled eggs REALLY got me, they didn't tell me they pre-mix pancake batter in the eggs to make them fluffier).

BUT, JUST TODAY, my primary care Dr (not the allergist that finally dx me as "gluten intolerant") told me that my "ketones" were high in my blood and he thinks that my gluten-free diet is harming me in some way, but did NOT think I should really try to go back - but thought that maybe I should challenge the diet and see if my KETONES go down......

Hmmmm. He recommended that I got to a homeopath (odd for a medical dr. to support a homeopath!!) and maybe a nutritionist. Usually ketones are up when you eat no carbs and too much protein! That's not my diet! I eat Dark Snickers and Dark Milkey Way and Reese's as comfort foods! (AND it shows on my hips now too)!

Am

Franceen Explorer
Franceen
Posted

Since I never really had a FORMAL and OFFICIAL DX via a positive test - at first I duped myself into thinking that the Capn Crunch and Rice Krispies I was eating once per day, weren't "enough" to worry about. I had terrible awful DH, and no "reportable" stomach symptoms at the time. People on this forum chided me and told me that I could be doing damage even without a dx and symptoms.

When my DH nearly killed me my Dr told me to go 100% "no-cheat" gluten free and see what happens. I did, with the help of this forum, and it's wonderful, helpful people. And the DH disappeared completely, except for when I accidentally get Glutened (which DOES happen when you travel, eat a restaurants that you don't choose, and get a "glucose free diabetic meal" instead of a "gluten-free meal" on a plane (14 hr flight) and HAVE to try to pick at the most innocent looking items (and then you get Glutened anyway!).I DO NOT CHEAT. When I get glutened accidentally, now I get the big D and gas for about 1 - 2 days! (IHOP scrambled eggs REALLY got me, they didn't tell me they pre-mix pancake batter in the eggs to make them fluffier).

BUT, JUST TODAY, my primary care Dr (not the allergist that finally dx me as "gluten intolerant") told me that my "ketones" were high in my blood and he thinks that my gluten-free diet is harming me in some way, but did NOT think I should really try to go back - but thought that maybe I should challenge the diet and see if my KETONES go down...... Hmmmm. He recommended that I go to a homeopath (odd for a medical dr. to support a homeopath!!) and maybe a nutritionist. Usually ketones are up when you eat no carbs and too much protein! That's not my diet! I eat Dark Snickers and Dark Milkey Way and Reese's as comfort foods! (AND it shows on my hips now too)!

But I often really crave Dunkin Doughnuts, Waffles, Pancakes, and Angel Food Cake!!!!

And Sara Lee Walnut Coffee Ring, and cheescake WITH the crust, and CHINESE FOOD (real stuff like Wonton Soup, egg roll, Lo Mein.....) and Hostess Cupcakes, and German Spaetzel, and more............But never enough to get even close to eating it.

Guest Jemenii36
Guest Jemenii36
Posted

Judy-i am soon to be 21 years old and began a gluten free diet about march of last year. I think I was not clear as to what cheating is, considering the responses. Yes, of course if I got symptoms as bad as some people do then I don't think I would EVER cheat (which is probably about once every two months if not less). And when I do cheat, I don't have a donut or bagel, I will have something such as french fries (CC). Regarding your story, I completley understand because the same thing happened with my mother. She had thyroid Cancer and has an autoimmune disorder where much of the inside of her body is scaring over now, after being on the gluten free diet. Do you think if damage has been done for so long that one will be fighting for their whole life to get healthy? It seems that many people who have been under diagnosed for many many years have so many health issues that their body will have a hard time being 'normal' again. Do you think this is true? Do you think the extraordinary damage that celiac disease has on one's body can be reversed after a certain amount of time?

PaulaHayden Newbie
PaulaHayden
Posted

I was diagnosed 3 years ago...I cheated for quite awhile. However, what I found was that every time I cheated, the reaction got worse. I dont cheat anymore and actually I cannot tolerate many things that I used to be able to in the beginning...kind of screwed myself!

Paula

jayhawkmom Enthusiast
jayhawkmom
Posted
A question comes to mind.

For those who have cheated....even tho no outwards signs of discomfort..........what are your ages? I'm only guessing but bet maybe your younger than most of us who have not cheated.

I'm 36. My 6 year old is much smarter, she'd never consider "cheating." I hope her attitude carries with her throughout her school years and beyond.

Judyin Philly Enthusiast
Judyin Philly
Posted
Judy-i am soon to be 21 years old and began a gluten free diet about march of last year. I think I was not clear as to what cheating is, considering the responses. Yes, of course if I got symptoms as bad as some people do then I don't think I would EVER cheat (which is probably about once every two months if not less). And when I do cheat, I don't have a donut or bagel, I will have something such as french fries (CC). Regarding your story, I completley understand because the same thing happened with my mother. She had thyroid Cancer and has an autoimmune disorder where much of the inside of her body is scaring over now, after being on the gluten free diet. Do you think if damage has been done for so long that one will be fighting for their whole life to get healthy? It seems that many people who have been under diagnosed for many many years have so many health issues that their body will have a hard time being 'normal' again. Do you think this is true? Do you think the extraordinary damage that celiac disease has on one's body can be reversed after a certain amount of time?

I'm so glad you wrote. I had a feeling you were younger :lol:

I know my mom had un-dx'd celiac. She died 4 months after i got my dx and i didn't know about the gene's and heredity factors etc. Was a real newbie..........I could do a long list of the symptoms she had looking back....esp......GERD and precocious anemia and the dreaded 'BIG D'.

My thyroid was nuked when i was in 3rd grade........who know which came first the thyroid or the celaic........i sure don't know. Your mom's scaring all over i guess in many organs or just the digestive track? Oh, Maybe you mean healing..........right.....guess i miss read.

This is such a great question. ;)

Do you think if damage has been done for so long that one will be fighting for their whole life to get healthy? It seems that many people who have been under diagnosed for many many years have so many health issues that their body will have a hard time being 'normal' again. Do you think this is true? Do you think the extraordinary damage that celiac disease has on one's body can be reversed after a certain amount of time?[

It scares me to think that I'm not healing............I'm sure not sick like I was but am still seeking answers as to why more intolerances kept coming up. I'll learned so much from this forum in finding my way to feeling better. There is a good thread on Oxalates on here that you might find interesting reading.

Bless you at 21 for adhering so closely to this life of eating gluten-free. I'm glad to hear your terms on 'cheating' :lol: I'm sure with this definition your being really careful and cc in FF is like taking a chance........but sure not like making the decision to eat the bagel.

Good luck to you. How is your mom doing by the way?

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Jodi Mills Apprentice
Jodi Mills
Posted
A question comes to mind.

For those who have cheated....even tho no outwards signs of discomfort..........what are your ages? I'm only guessing but bet maybe your younger than most of us who have not cheated.

If your in you teens or early 20's I can sure understand how very hard that must be socially. I only wish that I'd known back then and I sure wouldn't be still suffering the effects of eating gluten and other foods for so many years. I can't get those years back.

Judy

Judy, I have only cheated the one time for some taco bell.well wait that too is a lie, i think i had a bud light on new years..i miss beer. so 2 times i have cheated, the rest has been CC, i am working on getting CCd less and its working. but you are right I am 23...just turned in november...It is very hard, i went to chucky cheeses for a bday party(friends daughter) and was so tempted to have some pizza, but sat there and enjoyed my wonderful caramel flavored cardboard.

Cory727 Newbie
Cory727
Posted

I cheat. I can

Guest Jemenii36
Guest Jemenii36
Posted

paula-

yes that is what it seems like! theless u cheat the more you find you can't!!! it sucks but its only better for you in the long run and everyone is always searching for a 'healthier' lifestyle and unfortunately this is what our healthy lifestyle is! :)

Guest Jemenii36
Guest Jemenii36
Posted

Judy-

It is unfortuanate the heredity has a big role in this whole thing because i do not want to pass this down to my child one day! Do you have any children, and if so do they have celiac disease? I am sorry about your mom...do u know if it had anyhting to do with celiac disease and being undiagnosed? My mom is 46 and was diagnosed last january so she still has a long recovery period to go...she is doing ok...but because of the celiac disease she has the autoimmune disorder called "lychanplanus"...iam not sure how to spell it. But basically all of her mucus membranes, prior to diagnosis, were extremely inflamed and red and sore, but now all of that is scaring over and causing a lot of problems. Considering celiac disease goes undiagnosed all too often, many doctors do not know how to fix this. We are extremely blessed to have found an amzing doctor out of NYC who is willing to work with her the whole way...but as you can imagine it is going to be a long journey. Thank you for being so concerned...How are you doing with the gluten free diet? Do you know anyone else in your family that has it currently?

It scares me to think that I'm not healing............I'm sure not sick like I was but am still seeking answers as to why more intolerances kept coming up. I'll learned so much from this forum in finding my way to feeling better. There is a good thread on Oxalates on here that you might find interesting reading.

Bless you at 21 for adhering so closely to this life of eating gluten-free. I'm glad to hear your terms on 'cheating' :lol: I'm sure with this definition your being really careful and cc in FF is like taking a chance........but sure not like making the decision to eat the bagel.

Good luck to you. How is your mom doing by the way?

Guest Jemenii36
Guest Jemenii36
Posted

Judy-

It is unfortuanate the heredity has a big role in this whole thing because i do not want to pass this down to my child one day! Do you have any children, and if so do they have celiac disease? I am sorry about your mom...do u know if it had anyhting to do with celiac disease and being undiagnosed? My mom is 46 and was diagnosed last january so she still has a long recovery period to go...she is doing ok...but because of the celiac disease she has the autoimmune disorder called "lychanplanus"...iam not sure how to spell it. But basically all of her mucus membranes, prior to diagnosis, were extremely inflamed and red and sore, but now all of that is scaring over and causing a lot of problems. Considering celiac disease goes undiagnosed all too often, many doctors do not know how to fix this. We are extremely blessed to have found an amzing doctor out of NYC who is willing to work with her the whole way...but as you can imagine it is going to be a long journey. Thank you for being so concerned...How are you doing with the gluten free diet? Do you know anyone else in your family that has it currently?

Guest Jemenii36
Guest Jemenii36
Posted

well it's nice to see other people cheat a little..it is always nice when someone is similar anyhow :)

Guest Jemenii36
Guest Jemenii36
Posted

Judy-

It is unfortuanate the heredity has a big role in this whole thing because i do not want to pass this down to my child one day! Do you have any children, and if so do they have celiac disease? I am sorry about your mom...do u know if it had anyhting to do with celiac disease and being undiagnosed? My mom is 46 and was diagnosed last january so she still has a long recovery period to go...she is doing ok...but because of the celiac disease she has the autoimmune disorder called "lychanplanus"...iam not sure how to spell it. But basically all of her mucus membranes, prior to diagnosis, were extremely inflamed and red and sore, but now all of that is scaring over and causing a lot of problems. Considering celiac disease goes undiagnosed all too often, many doctors do not know how to fix this. We are extremely blessed to have found an amzing doctor out of NYC who is willing to work with her the whole way...but as you can imagine it is going to be a long journey. Thank you for being so concerned...How are you doing with the gluten free diet? Do you know anyone else in your family that has it currently?

Annie/NM Apprentice
Annie/NM
Posted

Thanks for the positive feedback! I'm really trying with the weight thing. It is crazy, sometimes if I have purposely cheated I don't get sick. Or other times, like yesterday, I was in bed all day, head fog etc..... and I have been really good the past 2-3 months. So go figure.

Guest Jemenii36
Guest Jemenii36
Posted

yeah well there you go...i hope your cheat was worth it at least! :)

Judyin Philly Enthusiast
Judyin Philly
Posted
Judy-

It is unfortuanate the heredity has a big role in this whole thing because i do not want to pass this down to my child one day! Do you have any children, and if so do they have celiac disease? I am sorry about your mom...do u know if it had anyhting to do with celiac disease and being undiagnosed? My mom is 46 and was diagnosed last january so she still has a long recovery period to go...she is doing ok...but because of the celiac disease she has the autoimmune disorder called "lychanplanus"...iam not sure how to spell it. But basically all of her mucus membranes, prior to diagnosis, were extremely inflamed and red and sore, but now all of that is scaring over and causing a lot of problems. Considering celiac disease goes undiagnosed all too often, many doctors do not know how to fix this. We are extremely blessed to have found an amzing doctor out of NYC who is willing to work with her the whole way...but as you can imagine it is going to be a long journey. Thank you for being so concerned...How are you doing with the gluten free diet? Do you know anyone else in your family that has it currently?

sorry for the delayed responce.

we had FiOS installed for 2 days thus no computer.

Yes i have on son who is 33. I'm not sure but GI wants him tested and we discussed it over christmas.

he doesn't have symptoms now. but as he said............" mom you didn't have symptoms at my age."

so think he's thinking about getting tested.

Not sure about my mom but my thoughts are YES probably somewhat related.

glad you mom has a good NYC dr. I haven't heard of her disease.

I think my brother has it...........but won't think about testing for it. He and i have fought our weight issues for years and since the 2 1/2 years gluten-free and other foods I've lost 70 #'s so for me this dx was the answer for me to lose weight.........i could have 'd' for 5 weeks and not eat do to nausea and gain 16 #'s. Iknow strange.........but............my illnesses have driven doctors nuts for years.

the gluten-free diet is fine for me now......it's the dairy, casein, and the other esp oxalates and nightshades....which i was using since going gluten-free..........so

guess i got all the questions answered.

thanks for caring.

Judy

nutralady2001 Newbie
nutralady2001
Posted

I don't cheat, simple as that it isn't worth it

Blitz Newbie
Blitz
Posted

Hi,

Just to add my 2 cents....

I'm a recently-diagnosed Celiac (blood test only so far, endoscopy/biopsy on Tuesday), and have been on a gluten-free diet for less than a week (the GI said it wouldn't make any difference that quickly). Initially I thought I would find it difficult to give up the carb foods I really like, such as bread (usually w/w or multi), bagels, pasta, noodles, etc. However, so far I'm quite pleased to say I haven't really been tempted. However, just to play my own devil's advocate, it may be because I haven't been at it for very long.

I know for a fact that I have been glutened once... but it was my fault. I bought some candy (my only vice), and proceeded to start eating it without first reading the ingredients list. Well, sure enough I looked while part-way through, and it had maltodextrin... EEK! I may also have been inadvertently glutened at a Thai restaurant on Friday night, but I'm not entirely sure. As I said, I have yet to feel any positive effects, and thus don't feel the reverse either. It's a real learning process, I'll say that much.

And regarding the age factor, I just turned 30. My intent is to stick with the gluten-free diet. I currently live alone, so it's a bit easier to control what I consume that way. ;)

Cheers!

-Geoff.

Franceen Explorer
Franceen
Posted

Hi Geoff,

You're doing so well!!

Maltodextrin in the USA is ok - Gluten Free.

But there are other ingredients in different candies to look for. Usually Wheat-based so they might state it in an allergen statement or bold it in the ingredients list, or just list it as is. It is "Malt FLAVORING" that is a no-no - since it is derived from Barley and they don't have to list Barley as an allergen.

Also got to watch "glucose syrup" since it can be corn or wheat based!! Mostly they list it as "corn syrup" if it is corn-based.

Good luck and I hope you stay not-missing the carbs. I finally started making my own bread just to have some complex carbs in the AM.

Franceen

Franceen Explorer
Franceen
Posted
Hi Geoff,

You're doing so well!!

Maltodextrin in the USA is ok - Gluten Free.

But there are other ingredients in different candies to look for. Usually Wheat-based so they might state it in an allergen statement or bold it in the ingredients list, or just list it as is. It is "Malt FLAVORING" that is a no-no - since it is derived from Barley and they don't have to list Barley as an allergen.

Also got to watch "glucose syrup" since it can be corn or wheat based!! Mostly they list it as "corn syrup" if it is corn-based.

Good luck and I hope you stay not-missing the carbs. I finally started making my own bread just to have some complex carbs in the AM.

Franceen

Oops. Just noticed you are in Canada. I'm not sure if maltodextrin is safe in Canada! Clan Thompson says that the FDA labeling law forces them to say if it comes from wheat or barley - but that's FDA in USA!!! Best to check with Canadian counterpart for labeling laws there.

psawyer Proficient
psawyer
Posted

Maltodextrin in Canada is safe.

Lux Explorer
Lux
Posted

Although I would never deliberately cheat (knowing now what I do about what happens when the tiniest bit of gluten gets into my system), I can understand the desire to.

I think, however, it's all about perspective. You (I) have a disease/intolerance/whatever you want to label it, that you can manage. You have control (bearing in mind that there are still so many out there who are still struggling to identify precisely what food/toxin is affecting them...). For those of us who can influence how our gut/bowels/skin/neurological system reacts - well, it is a wonderous thing that we can. I spent years wondering about the cause of my stomach troubles - being shifted around from med prac to med prac. Now that I know how to prevent it, I'm just so relieved - so incredibly grateful - to be able to do so.

That is not intended to evoke any sense of guilt, at craving certain foods. Of course, that is understandable - particularly when we are surrounded by culinary "delights" we can no longer eat. If we make a conscious effort to alter our attitude towards "it" (without sounding copiously self-help preacher-like!) I do think our physical responses/cravings will inevitably begin to change as well...

xxoo

ItchyMeredith Contributor
ItchyMeredith
Posted

I don't cheat. I have been CC'd but I have never intentionally consumed gluten since I started the diet.

I did have a goodbye gluten meal (pizza and brownie cheesecake) the day before I started the diet- but if I knew then what I know now about celiac I certainly would not have done it.

When I got my diagnosis I read everything I could get my hands on about the disease. It scared me straight.

I feel blessed to have found this out when I did....hopefully before I caused too much damage.

I was never sick. My only symptom of celiac was DH. If I were to order a pizza tonight from Papa Johns and eat the whole thing I would probably in itchy agony in a few days.....at least thats what I think will happen. But a gluten free life is a pain in the backside and the rash certainly is not enough of a motivation to keep going forever. The knowledge of the internal damage and my dead grandma who never got a proper diagnosis is what motivates me.

Mere

  • 4 years later...
CassandraMajere Newbie
CassandraMajere
Posted

I usually don't cheat, but sometimes, when my willpower does fail me, I always end up feeling guilty...though I don't have celiac just gluten sensitivity the symptoms make me regret cheating even more

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      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
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