I have Celiac Desease

Posted by janiewhitemoon @janiewhitemoon, Oct 6, 2022

Is there any others with Celiac??

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@crazy

How do you get your protein? Where can I find certified Gluten-free food, name brands? Thank you

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I found out I have celiac disease about 18 months ago. My daughter found out she had celiac a couple of years before that and said I should get tested. My PCP talked me out of it. Finally after losing more than 20 lbs and my wife telling me I was turning grey, I got the test. It was positive and the number was vey high! Scoping my small intestine confirmed it. I was also severely anemic.

I fired my PCP shortly after that and I heard recently he “left our clinic” to work at his wife’s health food and supplements store.

We cleaned the wheat out of our house and I went gluten free. Six months later another test had me in the normal range and my iron was coming back. I am no longer anemic, my color came back, unfortunately so did the weight.

The best way to start gluten free is to eat things that don’t have gluten naturally. Most of what you can eat in the grocery store comes from around the perimeter of the store. Whole foods ( fruits, vegetables, meat and other natural protein are best and the easiest to pick from. Once you get into the interior aisles, you really have to read labels.

It’s really time consuming, but it gets easier the more you do it. Also, get the GF app. You can scan barcodes and it will tell you if the food has gluten in it.

When someone tells me they could never eat gluten free I just tell them gluten was killing me and once I found that out cutting out gluten was easy.

I can still smell the fresh bread and cinnamon rolls, smile and remember how good they used to taste. I don’t have to eat them anymore. 😊

Btw, Udi’s make’s very good bread and bagels, expensive tho.

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@springer44

I found out I have celiac disease about 18 months ago. My daughter found out she had celiac a couple of years before that and said I should get tested. My PCP talked me out of it. Finally after losing more than 20 lbs and my wife telling me I was turning grey, I got the test. It was positive and the number was vey high! Scoping my small intestine confirmed it. I was also severely anemic.

I fired my PCP shortly after that and I heard recently he “left our clinic” to work at his wife’s health food and supplements store.

We cleaned the wheat out of our house and I went gluten free. Six months later another test had me in the normal range and my iron was coming back. I am no longer anemic, my color came back, unfortunately so did the weight.

The best way to start gluten free is to eat things that don’t have gluten naturally. Most of what you can eat in the grocery store comes from around the perimeter of the store. Whole foods ( fruits, vegetables, meat and other natural protein are best and the easiest to pick from. Once you get into the interior aisles, you really have to read labels.

It’s really time consuming, but it gets easier the more you do it. Also, get the GF app. You can scan barcodes and it will tell you if the food has gluten in it.

When someone tells me they could never eat gluten free I just tell them gluten was killing me and once I found that out cutting out gluten was easy.

I can still smell the fresh bread and cinnamon rolls, smile and remember how good they used to taste. I don’t have to eat them anymore. 😊

Btw, Udi’s make’s very good bread and bagels, expensive tho.

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I've had celiac for 14 years. Doctors, including gastroenterologists, have almost no training in celiac or food intolerances. Consider making your own bread. I make kombucha for the probiotics and use that for sourdough bread. Adding psyllium husk to dough forms a gel (good for GI tracts too) so the bread is more like "real" bread. There are GF sourdough groups online. Canyon Bakehouse makes good bread too. So many of the GF products are high in salt, sugar, and other simple carbohydrates. National Celiac Assoc. has lots of info.

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My wife and I joined the club after one of our sons, about fifteen years ago. Since then more family members joined, including children and grandchildren.

I’m amazed at the diversity of symptoms. No one has the same symptom set. Some are more gastro-related, some more neuro, some more severe.

GF food is much more available now than in 2009. During a 2020 vacation, however, we did discover that Rapid City, SD appeared to be nearly devoid of GF food (maybe we went to the wrong stores). We survived because my daughter packed a “celiac survival” suitcase with food.

I second canyon Bakehouse products (wish they still had blueberry bagels).

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Now in my '70s, was celiac disease and pernicious anemia which is relatively easy to deal with, I'm beginning to think about where my husband and I will grow old together, very old. I have checked with some senior housing Continuum of care places and they can't promise they will provide gluten-free food if we begin to be unable to fetch our own ingredients and cook for ourselves. What will become of me? What plans are others making?
The symptoms of eating gluten are too unpleasant for me to choose to live with them So short of planning to stay in the home where we are now or move to a regular senior housing apartment, I don't know what we can do. What if we become unable to drive to the grocery store, unable to read and prepare recipes?
I don't think we can afford to have private help to take care of us.
Staying faithfully really gluten-free has kept me pretty healthy so far although I did have to forego a number of trips and experiences I would have enjoyed because there was nothing for me to eat, especially as I have been vegetarian for about 50 years.
Any ideas how to find a continuum of care home with suitable gluten-free food?

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@yellowdoggirl1
It’s a worry. Having been diagnosed with Celiac for about 16 years, I’ve gone from being chained to my kitchen because eating out was impossible, to feeling pretty darned good about my options. I have done river and ocean cruises and been able to eat safely. I have an app that explains Celiac in a dozen different languages and the server will read, and has always nodded enthusiastically and returned to the table with a gluten free menu, or even the chef. Celiac is broadly recognized in most of the world as a disease that requires rigorous dietary restriction. What a difference the past nearly two decades has made.
I would be very surprised that any retirement facility or assisted living facility could not accommodate something so basic as special diets. If they don’t then it is not the right living situation for you.
Locally we have a service called (patronizingly) “A Place for Mom.” The different facilities pay for the service. You can call and talk to them and give them your requirements and they will do the legwork. I hope they have something like that where you live. But regardless, don’t settle for less than you deserve. Eating is fundamental to good health.

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@oldretiredguy

My wife and I joined the club after one of our sons, about fifteen years ago. Since then more family members joined, including children and grandchildren.

I’m amazed at the diversity of symptoms. No one has the same symptom set. Some are more gastro-related, some more neuro, some more severe.

GF food is much more available now than in 2009. During a 2020 vacation, however, we did discover that Rapid City, SD appeared to be nearly devoid of GF food (maybe we went to the wrong stores). We survived because my daughter packed a “celiac survival” suitcase with food.

I second canyon Bakehouse products (wish they still had blueberry bagels).

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@pmm

@yellowdoggirl1
It’s a worry. Having been diagnosed with Celiac for about 16 years, I’ve gone from being chained to my kitchen because eating out was impossible, to feeling pretty darned good about my options. I have done river and ocean cruises and been able to eat safely. I have an app that explains Celiac in a dozen different languages and the server will read, and has always nodded enthusiastically and returned to the table with a gluten free menu, or even the chef. Celiac is broadly recognized in most of the world as a disease that requires rigorous dietary restriction. What a difference the past nearly two decades has made.
I would be very surprised that any retirement facility or assisted living facility could not accommodate something so basic as special diets. If they don’t then it is not the right living situation for you.
Locally we have a service called (patronizingly) “A Place for Mom.” The different facilities pay for the service. You can call and talk to them and give them your requirements and they will do the legwork. I hope they have something like that where you live. But regardless, don’t settle for less than you deserve. Eating is fundamental to good health.

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Thank you, Patty, for the good suggestions. Maybe a place for Mom would be a good place to start. The facility we visited flat out said they could not accommodate a gluten-free diet for celiac disease and I know it's always complicated because we are vegetarians. I have tried eating fish and I just can't do it anymore. It has been 50 years or more so it's a pretty ingrained habit, no pun intended.
I do think if we didn't have the combination of celiac disease and lacto-ovo- vegetarianism we'd have a much easier time.
Anyway, I have read about the difficulties of eating while hospitalized and the struggle with a search I am only barely beginning. It will be interesting to hear what others have to say, if anything. Thank you again!

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We have tried Schar and found many of their products very tasty. However, for breads we prefer Canyon Bakehouse. As a bonus, sometimes the Wal-Mart near us has Canyon Bakehouse for $5 a loaf (versus up to $8 elsewhere)

BTW, I’ve forgotten what gluten products taste like as well. Several years ago I noticed that when I saw an ad for a gluten product I wasn’t associating it with food.

Life is interesting when 90% of the grocery store is irrelevant.

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@oldretiredguy Isn’t that the truth? I have no trouble cruising by the pastry section, but curiously, I am really irritated when they put gluten in something I used for seasoning for decades. And I miss good Cajun roux. I haven’t perfected gluten-free étouffée.
The time that I spend reading labels is time I’ll never get back!

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Primarily for those that live at high elevation, most GF pasta gets gummy quickly. The GF pasta closest to wheat pasta is hemp pasta (high Omega 3, fiber, and protein, no "medicinal" stuff). Texture very similar and it has a nutty flavor. Also, Ethiopian Injera bread is GF (unless they add gluten), made from fermented teff flour. Easy to make (add some psyllium husk to get gluten-esk stretch). Being GF is much easier than 10 years ago, but we always have to be vigilant. I got glutened from a "GF" group meal on a bike tour last year. I had a cytokine storm going when exposed to covid from a fellow cyclist. The covid took 10 day but the long covid took 8 months to recover from. I canceled the next bike tour when the director said "I'm sure there is something you can eat" at the microbrewery. Not.

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