14 years after diagnosis I’m cheating

[Gluten-Hater]

I started out as an actual activist in the USA for celiac patients like myself. I spent 12 or more years rigorously fighting for proper labels on food etc. now I’m so sick and tired of being celiac I eat stuffed crust pizzas from dominos. This week I was so sick and tired of my bland annoying fake for the real things foods that I filled my cart with anything affordable to eat lest I also mention I live below the poverty line so eating special foods isn’t an option for me it’s whatever I can afford on food stamps. I hate my life. I’m so sick of being celiac. I’m depressed I turned into a smoker three years ago I’m trying to quit. So what do you think. Hyper vigilant at the start and turning to gluten as I don’t know why. The only reason to cheat is blueberry mufffins w real gluten and stuffed crust pan pizzas. I do it I’m trying to stop. I had celiac possibly 15 yrs prior to diagnosis and at age 32 I was diagnosed same year I had a heart attack and found out I had osteoporosis. Go figure huh. 

[trents]

So how did you feel physically after your binge? Was it worth it?

If I were to eat a piece of wheat crust pizza or a wheat made blueberry muffin, within two or three hours I would be writhing on the bathroom floor with intractable vomiting and unbearably painful gut cramping followed by several hours of diarrhea. When I was diagnosed about 20 years ago my symptoms were relatively minor. I could eat that pizza or that muffin and my gastric distress would be very minor. Not so now. Are you a silent celiac still? Even after being off gluten all those years?

Edited August 25, 2021 by trents

[Gluten-Hater]

Oh I’m sick bloated lethargic I feel horrible. Bad idea. I got so fed up with my food choices and cooking I grabbed a bunch of regular food. I went from hyper vigilant to blassse, but I don’t do this often and I read some stats on what happens if you bing. Ie can take weeks or months to recover.. it wasn’t even worth it but the food was so inexpensive and I didn’t have to slave cook it. I just want to be normal. I was diagnosed at about age 30. So is it common to have this behavior emerge? Because if I did it , the former activist, literally a Celiac activist, then I know others must have done this too . 💔😞✝️♥️✝️🦋❤️🌸👋🧝🏻‍♀️

27 minutes ago, trents said:

So how did you feel physically after your binge? Was it worth it?

If I were to eat a piece of wheat crust pizza or a wheat made blueberry muffin, within two or three hours I would be writhing on the bathroom floor with intractable vomiting and unbearably painful gut cramping followed by several hours of diarrhea. When I was diagnosed about 20 years ago my symptoms were relatively minor. I could eat that pizza or that muffin and my gastric distress would be very minor. Not so now. Are you a silent celiac still? Even after being off gluten all those years?

No I’m not silent celiac never was I also have DH 

[Gluten-Hater]

Yes same I almost vomited bad cramping lot of pain. I binged for three days though never did that before. I’d do a stuffed crust pizza every 6 months to once a year. I should learn how to make gluten-free STUFFED CRUST HUH ? No this was my first major binge but I had been cheating in recent years. This time it was so much gluten I did get sick. I’m in bed typing in lots of pain 😞

[Gluten-Hater]

I should change my name I was upset when I joined. I even have brain damage from being celiac undiagnosed for 15 yrs prior. Sorry about my name 😢 

My family refuses to acknowledge I have celiac disease or they often don’t invite me to family affairs because I’m celiac and I miss thanksgiving and Easter. I’m very depressed about it.

[trents]

The social limitations of having to eat gluten free are, to me, the bigger issue than missing taste and texture of things made with wheat. My wife does a good job of making gluten-free substitutes that taste pretty good. Just from a culinary standpoint, the hardest moments are those when I'm smelling the baking of fresh wheat bread or French toast made with sour dough wheat bread.

But it's the social limitations that are the hardest. I'm a Christian and try to be active in my local church. But of course, most of the church activities involve some kind of meal. I'm blessed in that my friends and family seem to be understanding of my need to eat gluten-free but there are still times I don't go to things simply because a meal is being supplied and I would have to fix my own and bring it with me. At least our church uses non wheat wafers for communion. One of the pastors' wives was a celiac so that got the leadership onto non wheat communion wafers.

[Scott Adams]

I would urge you to try to quit gluten again. Have you tried this new pizza? Yes, it contains "gluten-free" wheat starch, and the last few batches I've tested were gluten-free, but it tastes like the real thing...so binge on it instead of gluten:

 If you want to change your screen name send me a personal message with three choices.

[GodsGal]

1 hour ago, Glutenlover said:

I should change my name I was upset when I joined. I even have brain damage from being celiac undiagnosed for 15 yrs prior. Sorry about my name 😢 

My family refuses to acknowledge I have celiac disease or they often don’t invite me to family affairs because I’m celiac and I miss thanksgiving and Easter. I’m very depressed about it.

Hi Glutenlover, 

I know that it is tough. Celiac disease feels very isolating for me too. Some people "get it" and others don't.

I also have a hard time affording food sometimes. The struggle is real. Hang in there. You are not alone in this. I have not binged, but I have been tempted to. 

Do you know any people in your area who also have celiac? Are you able to get counseling? I have found these things to be very helpful.

[GodsGal]

1 hour ago, trents said:

The social limitations of having to eat gluten free are, to me, the bigger issue than missing taste and texture of things made with wheat. My wife does a good job of making gluten-free substitutes that taste pretty good. Just from a culinary standpoint, the hardest moments are those when I'm smelling the baking of fresh wheat bread or French toast made with sour dough wheat bread.

But it's the social limitations that are the hardest. I'm a Christian and try to be active in my local church. But of course, most of the church activities involve some kind of meal. I'm blessed in that my friends and family seem to be understanding of my need to eat gluten-free but there are still times I don't go to things simply because a meal is being supplied and I would have to fix my own and bring it with me. At least our church uses non wheat wafers for communion. One of the pastors' wives was a celiac so that got the leadership onto non wheat communion wafers.

Trent's, thanks for mentioning the church activities. I am experiencing that reality as well.

The Mennonite Relief Sale is happening soon in my area. Part of me wants to go, but I know that it will be hard. "Food, food everywhere, and not a bite to eat."

There will probably be some raw vegetables and fresh fruit. But the other food will likely be off limits.

I am planning on taking my own food if I do go, and hopefully donating some "made in a gluten free kitchen" baked goods. 

[trents]

6 minutes ago, GodsGal said:

Trent's, thanks for mentioning the church activities. I am experiencing that reality as well.

The Mennonite Relief Sale is happening soon in my area. Part of me wants to go, but I know that it will be hard. "Food, food everywhere, and not a bite to eat."

There will probably be some raw vegetables and fresh fruit. But the other food will likely be off limits.

I am planning on taking my own food if I do go, and hopefully donating some "made in a gluten free kitchen" baked goods. 

My wife grew up in a Mennonite Brethren family and church. Her parents would often buy things at the Mennonite Relief sale. She grew up in the Willamette valley of Oregon in a community where there was a concentration of Mennonites. Her maternal grandfather came over on the boat from Prussia when he was a small child. Before I was diagnosed with celiac disease, my wife used to make one of their ethnic dishes called verenika. It was delicious. 

[Gluten-Hater]

11 hours ago, Scott Adams said:

I would urge you to try to quit gluten again. Have you tried this new pizza? Yes, it contains "gluten-free" wheat starch, and the last few batches I've tested were gluten-free, but it tastes like the real thing...so binge on it instead of gluten:

 If you want to change your screen name send me a personal message with three choices.

I don’t know how to change my screen name. I’m not going back to gluten btw it was just a self deprecating episode thanks I have hot gluten free pizza next door at my local pizzeria so I’ll just get that when I get the urge thanks

[trents]

I believe only Scott Adams can change your screen name. I believe you would need first to create a new account with a different user name and then Scott can merge the old with the new. Send Scott a message using the forum's personal messaging tool (PM).

[Gluten-Hater]

20 hours ago, trents said:

My wife grew up in a Mennonite Brethren family and church. Her parents would often buy things at the Mennonite Relief sale. She grew up in the Willamette valley of Oregon in a community where there was a concentration of Mennonites. Her maternal grandfather came over on the boat from Prussia when he was a small child. Before I was diagnosed with celiac disease, my wife used to make one of their ethnic dishes called verenika. It was delicious. 

Oddly my great grandmother came from a Mennonite group in Pennsylvania USA. 

[trents]

8 hours ago, Glutenlover said:

Oddly my great grandmother came from a Mennonite group in Pennsylvania USA. 

When they hear "Mennonite," most people envision folks driving around in-horse drawn buggies with men wearing tall hats and women wearing long dresses and bonnets. But there are different Mennonite groups with some of them being more progressive and embracing modern technology. My wife's Mennonite heritage is the latter.

[GodsGal]

My heritage is more progressive as well. My roots are in Virginia. I very much appreciate modern technology. 🙂

It's interesting that in all of life, we have to decide what we need to let go of, and what we want to hold onto. And for those of us with celiac and other food issues, the question might look more like, "Can I adapt this recipe in some way? Or, do I just need to grieve over it and let it go?"

My big food items to figure out right now are: a good substitute for Mom's homemade fried donuts, a good gluten free/dairy free pie crust recipe, shoofly pie, etc.

 

 

[trents]

GodsGal, 

I grew up in Virginia but haven't lived there since 1976. Moved out west when I was 25.

I agree. You can adapt some dishes to gluten-free and they are a reasonable facsimile of the original version but others you just have to let go of.

Edited August 26, 2021 by trents

[Scott Adams]

4 hours ago, trents said:

I believe only Scott Adams can change your screen name. I believe you would need first to create a new account with a different user name and then Scott can merge the old with the new. Send Scott a message using the forum's personal messaging tool (PM).

I can simply change your screen name, no need to create a new account. Please just PM me what you'd like it to be, and include 3 choices. The reason it's not easier to change this is due to spammers being able to hide easier if they can change their own screen names.

[Wheatwacked]

18 hours ago, Glutenlover said:

I’m very depressed about it.

Whenever I get cravings for something, it is usually because of some essential nutrient missing in my diet. Been that way all my life, but when I was young I was scoffed at and called a picky eater. Gluten confounds that because it is so addictive.

For depression try 10,000 iu (250 mcg) a day of vitamin D3. You want to raise your plasma level to around 70 ng/ml. If you are drinking bottled water or live in an area of low ground water lithium content you are likely deficient in Lithium. 5 mg a day will help defer the urgency of your cravings. Lithium in drinking water and the incidences of crimes, suicides, and arrests related to drug addictions - PubMed (nih.gov)   https://pubmed.ncbi.nlm.nih.gov/1699579/

[AlwaysLearning]

The depression you describe makes me think you have a vitamin deficiency. I would get outside into the sun to get as much vitamin D into your system as you can before summer ends. Then I would budget to buy some vitamin D supplements to hold you over the winter.

It sounds to me as if you have been turning to comfort foods to try to counteract your depression. Unfortunately, just about every food out there that will give you a quick high, like sugar or gluten, is going to come back and make you feel worse in the long run.

So what is the solution? I would try to get excited about cooking. Cooking from scratch is a great way to save money on groceries, and most whole ingredients don't contain gluten, so your choices should be pretty broad. Start experimenting with making soups from scratch. They can be an extremely cost-effective way to get lots of nutrients in your food but on a low budget. 

Some of the ingredients I use are bone broth, carrots, split peas, tomatoes celery, onions, sweet bell pepper (red), mushrooms, corn, cauliflower, broccoli, canned chicken, rice, pasta, black beans, zucchini. Not all in one soup, of course, but mix and match any of these low cost ingredients and send your soups in different directions when it comes to flavor profiles. I just recently made two batches of soup, one a chicken noodle heavy on carrots, celery, and green spices. And another that was black beans, tomatoes corn, mushrooms, rice, and used a hotter spice profile. 

I make huge pots and because I end up with so much to freeze that I run out of containers, I make more-condensed versions then add more water when I heat them up later.

But you should do your own research in looking for soup recipes so that you feel a personal connection to what you make and feel a sense of accomplishment in learning something new and developing your own techniques. But they can be a great way to break you out of your current slump and I'm sure you'll be pleasantly surprised by how far you can stretch your food dollar this way. My favorite is after you make a batch, it is also really nice to have pre-made food that just needs to be thawed and reheated and can last for weeks depending on how much you make. 

I won't comment on the smoking as I'm sure you're already aware of how stupid it is to be smoking in the era of covid. But quitting would be a great way to get the money back into your budget for more-exciting food.

Don't beat yourself up too badly. In the times in which we are currently living, it would be hard for anyone to not have had some bouts with depression. But I believe you can pull yourself back out. Start telling yourself the things you need to hear to build up the confidence needed to make changes in your life and avoid anyone who brings you down. You can do it!
 

[Gluten-Hater]

8 hours ago, AlwaysLearning said:

The depression you describe makes me think you have a vitamin deficiency. I would get outside into the sun to get as much vitamin D into your system as you can before summer ends. Then I would budget to buy some vitamin D supplements to hold you over the winter.

It sounds to me as if you have been turning to comfort foods to try to counteract your depression. Unfortunately, just about every food out there that will give you a quick high, like sugar or gluten, is going to come back and make you feel worse in the long run.

So what is the solution? I would try to get excited about cooking. Cooking from scratch is a great way to save money on groceries, and most whole ingredients don't contain gluten, so your choices should be pretty broad. Start experimenting with making soups from scratch. They can be an extremely cost-effective way to get lots of nutrients in your food but on a low budget. 

Some of the ingredients I use are bone broth, carrots, split peas, tomatoes celery, onions, sweet bell pepper (red), mushrooms, corn, cauliflower, broccoli, canned chicken, rice, pasta, black beans, zucchini. Not all in one soup, of course, but mix and match any of these low cost ingredients and send your soups in different directions when it comes to flavor profiles. I just recently made two batches of soup, one a chicken noodle heavy on carrots, celery, and green spices. And another that was black beans, tomatoes corn, mushrooms, rice, and used a hotter spice profile. 

I make huge pots and because I end up with so much to freeze that I run out of containers, I make more-condensed versions then add more water when I heat them up later.

But you should do your own research in looking for soup recipes so that you feel a personal connection to what you make and feel a sense of accomplishment in learning something new and developing your own techniques. But they can be a great way to break you out of your current slump and I'm sure you'll be pleasantly surprised by how far you can stretch your food dollar this way. My favorite is after you make a batch, it is also really nice to have pre-made food that just needs to be thawed and reheated and can last for weeks depending on how much you make. 

I won't comment on the smoking as I'm sure you're already aware of how stupid it is to be smoking in the era of covid. But quitting would be a great way to get the money back into your budget for more-exciting food.

Don't beat yourself up too badly. In the times in which we are currently living, it would be hard for anyone to not have had some bouts with depression. But I believe you can pull yourself back out. Start telling yourself the things you need to hear to build up the confidence needed to make changes in your life and avoid anyone who brings you down. You can do it!
 

I TrueType appreciate the depth and breadth of this reply to my behavior. I have quit smoking , in case anyone doesn’t know, there is a free hotline to quit smoking where they send you free patches and lozenges. This is my third quit and only been smoking in past four years. The helpline helped tremendously. Your response is so on the mark. I overspent on stuff this month, so next month I’m buying Vitamens which I’m completely out of except two more b Vitamens left. Health should come first. I’m definitely vitamin d deficient. I’m low on everything and even gouten free I have pernicious anemia. So I quit being vegetarian . Now as for soups and stews. I have a running joke about my aversion to them, but I hope someone else reads it and sees how to make soups and do this well. I’ll admit I can’t cook much anymore, sdoup should be what I try. I do like split pea soup.. I was in a coma and lost partial use of both arms so it’s hard to cook for myself. I also lost all my memories of how to cook. I do remember getting my youngest son a genetic test and he also has the celiac gene so I had been cooking for him baking for him most of his life. But after the inciden

[Gluten-Hater]

Just now, Glutenlover said:

I TrueType appreciate the depth and breadth of this reply to my behavior. I have quit smoking , in case anyone doesn’t know, there is a free hotline to quit smoking where they send you free patches and lozenges. This is my third quit and only been smoking in past four years. The helpline helped tremendously. Your response is so on the mark. I overspent on stuff this month, so next month I’m buying Vitamens which I’m completely out of except two more b Vitamens left. Health should come first. I’m definitely vitamin d deficient. I’m low on everything and even gouten free I have pernicious anemia. So I quit being vegetarian . Now as for soups and stews. I have a running joke about my aversion to them, but I hope someone else reads it and sees how to make soups and do this well. I’ll admit I can’t cook much anymore, sdoup should be what I try. I do like split pea soup.. I was in a coma and lost partial use of both arms so it’s hard to cook for myself. I also lost all my memories of how to cook. I do remember getting my youngest son a genetic test and he also has the celiac gene so I had been cooking for him baking for him most of his life. But after the inciden

The incident that took my life that I woke up from I do not remember how to bake anything. I guess I will relearn this skill this winter. I know you are right about vitamin d. I’m crippled in legs and neck too and use braces to walk. From another incident many years ago. Now I went outside w my children yesterday and felt so incredibly better. I also swam in freezing cold water which helped my pain so much. Vitamens d isn’t as good as getting it from the sun very good point.

someone is complaining I said mennonites were a cult. I feel that since my ancestors on one part of my family’s side were  Mennonite , I feel after extensive research and horrible tales of escaping by former members, I feel as a descendant of them I have the right to call it a cult. It is a cult I’m very glad my great grandmother left them. Although the outside world is hard and lonely sometimes, I’m happy and thankful for my freedom, end of Mennonite discussion. Watch YouTube videos before you get mad at me watch videos about the women escaping.

now as for gluten I don’t think I’ll ever cheat again. Unless it the end of the world and all I can find to eat after 15 days of no food is something with gluten, I’m not eating it again. I have a deli out gluten free option for pizza I can buy once a month right next door to me. 
After everyone reached out to me I feel less alone. It’s a lonely disease. 
everything is focused on beer and food or drinking and food. I’m celiac and a AA member so drinking wine is out too. Did you know I lost my whole stomach lining my biopsy showed due to being celiac for so long undiagnosed 💔yes I did so it hurts if I try to drink some wine I throw it right up.

as I said I already have osteoporosis (early stage) from it . Celiac disease. I had a bone scan done . That and my other tests plus I had the top GI doctor in my state diagnose me

back to not eating gluten. I swelled up so that I looked 5 months pregnant or 6 yesterday from the gluten I ate all week. I was in terrible pain from it. I will not do it again

honestly it’s the money but then again I could stand to lose ten pounds so I will just eat less until I can start learning how to bake again. I love blueberry muffins. The only truly fun part was buying a huge cheap dinner remade w gluten in it that was affordable and huge. 
im definitely suffering from burnout. Has anyone else got burnt

[Gluten-Hater]

Anyone else gotten burnt out on being gluten-free over ten years into it ??? I cannot believe I started as an activist, I got Chex to make five new gluten free cereals, etc etc to being burnt out. Could be my lack of Vitamens bad eating habits even with gluten free foods idk. I was just wondering if it’s normal to be hyper vigilant to being burnt out on it ?
Celiac Disease. ? ♥️🙏🌸❤️💗✝️💕🌟🥰🍀🍄🧚🏻‍♂️Thank everyone for any replies I know no one with it locally except some elderly people. I’m not elderly. No one to hang out with. I’m a widow of a US MARINE who died because of what happened to him in Afghanistan. So I’m also a lonely broken hearted widow too 😢

[trents]

Back to the cult issue. I think someone took your original remark as you saying that the Mennonite movement as a whole is a cult. When I look at what you wrote I can see that you might have been meaning instead that the particular Mennonite community your great grandmother came out of was a cult. At least I hope that is what you meant. Cults can spring up out of most any legitimate religious movement. And it kind of depends on how you define a cult. Is "cult" defined by excessive control and manipulation by a religious group's leadership? Or, is it defined by departure from sound theology, which how "cult" was defined in the first few centuries of Christianity? Or, is it some of both? 

I hear what you say about the loneliness and isolation you feel as someone with celiac disease. I think all celiacs struggle with that to one degree or another. It can be very limiting. And depending on your resources and your support group (or lack of them) it can become a downward spiral. It sounds like you are dealing with a number of isolating factors in addition to being a celiac that magnify the problem. Thanks for your transparency. I am sure it has been a fresh breeze to others struggling with these issues.

Edited August 29, 2021 by trents

[Gluten-Hater]

59 minutes ago, trents said:

Back to the cult issue. I think someone took your original remark as you saying that the Mennonite movement as a whole is a cult. When I look at what you wrote I can see that you might have been meaning instead that the particular Mennonite community your great grandmother came out of was a cult. At least I hope that is what you meant. Cults can spring up out of most any legitimate religious movement. And it kind of depends on how you define a cult. Is "cult" defined by excessive control and manipulation by a religious group's leadership? Or, is it defined by departure from sound theology, which how "cult" was defined in the first few centuries of Christianity? Or, is it some of both? 

I hear what you say about the loneliness and isolation you feel as someone with celiac disease. I think all celiacs struggle with that to one degree or another. It can be very limiting. And depending on your resources and your support group (or lack of them) it can become a downward spiral. It sounds like you are dealing with a number of isolating factors in addition to being a celiac that magnify the problem. Thanks for your transparency. I am sure it has been a fresh breeze to others struggling with these issues.

Yes I meant that being descended from that organization the Mennonites that I’m allowed to give my opinion, after thorough research into that community I have myself deemed it as a whole a horrific cult. At least with the Amish whom not I live nearby, they allow all teens the chance to leave and decide if they want to stay after a certain period of time. With all or most mennonites they force them to stay are overly strict act like the taliban towards women and the outiside world. I’m a former defense contractor and I compare Mennonites to the Taliban minus the guns so that’s strictly my opinion I’m sharing. My job as a defense contractor made many famous friends and enemies and earned the respect of the pentagon. I have issues with a lot of things and know of many cults throughout this world from my experiences but let’s just stick to Celiac disease. If you are Mennonite I’m sorry if my opinion offends you sincerely 

[Wheatwacked]

41 minutes ago, Glutenlover said:

Vitamens d isn’t as good as getting it from the sun...hyper vigilant to being burnt out on it ?

"In case you were wondering, it doesn’t matter if you’re getting D2 or D3, and the sunlight-generated kind isn’t better than the nutritional variety. “The body can use each perfectly fine,” says Dr. Insogna. " https://www.yalemedicine.org/news/vitamin-d-myths-debunked

Quote

As little as 10 minutes of sunshine can make Vitamin D3 in the skin. But in New Jersey, the angle of the sun is only in the right place from about the end of April through the middle of October. You need to sit in the sun with your skin exposed without sunscreen, of course. In the winter in the northeast, when the sun is too low, a dietary intake of Vitamin D becomes the sole source during those months. Vitamin D3 either consumed in the diet or made in the skin is stored in the liver.  Department of Human Services | Calcium and Vitamin D (state.nj.us)  https://www.state.nj.us/humanservices/doas/healthy/calcium.html   

Quote

In contrast, the Endocrine Society stated that, for clinical practice, a serum 25(OH)D concentration of more than 75 nmol/L (30 ng/mL) is necessary to maximize the effect of vitamin D on calcium, bone, and muscle metabolism   Vitamin D - Health Professional Fact Sheet (nih.gov)  https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/

After 2 years of 250 mcg (10,000 IU) a day of vitamin D3 my blood level was  48 ng/ml. After 6 years it is (checked last month) 87 ng/ml. Even if you only do it for one or two bottles you will notice an improvement in your feelings of burn out very quickly. While sunlight is nice, and going outside has other advantages, once you get into the fall until the spring in the northern tier, you are using up your reserves. With that I have osteopenia. My dad broke his femur neck in a slip and mom cracked her forarm in a trip. I wonder if the higher incidence of osteopenia/osteoporosis in Celiac might just be that we are tested more. My T score in femur neck = -2.4.  In addition to D and Calcium for your osteoporosis, you need vitamin K, manganese, phosphorus, etc. Here is a good article: 11 Supplements That May Help Manage or Prevent Osteoporosis (healthline.com)   https://www.healthline.com/nutrition/osteoporosis-supplements

AA did not help me because I am superanxious about speaking. One week after starting GFD in 2014 my addiction was broken. Same thing, the stomach pain no longer was worth it. For years I would take a sip, throw up, then drink a half pint of vodka.

Still smoking after 50+ years, so congratulations to you. At one point I was on the patch, chewing the gum and still went outside for a cigarette after doing hypnosis. One day soon. When I started they were $0.35 a pack!

Pipingrock.com has the best prices for vitamins that I have found. "High Potency Vitamin D3, 10,000 IU, 100 Quick Release Softgel $4.99"