Janie -
I have had Celiac Disease for 40+ years. First 10 years struggling and not understanding what was happening. About 30 yrs ago I started to become gluten-free with the more careful I was the better I felt. But about 20 yrs ago a cascade of ramifications from the damage that had happened on those first 10 yrs began to develop.
Anemia was the first symptom. Next was Asthma and then Histamine Intolerance, Adrenal Fatigue, Arthritis, Heptiformus dermatitis, and a few additional small problems.
Not trying to scare you, rather give you a frame of reference at the potential problems that gluten caused damage can do to your body’s proper functioning.
Chris47 -
I was diagnosed 17 years ago. I could only shop the outside aisles of the grocery store and health food stores. It has gotten much easier but spending time with a dietitian that understands Celiac and all the things you need to be careful with is really helpful since it is more than just food.
There are online apps such as FindMeGlutenFree that help with finding safe places/foods to eat (you still have to quiz the server/chef on if the food is safe). the National Celiac Assoc. has info (link below) and there are local chapters in many cities; here is the one for Denver https://denverceliacs.org/ . Bob's Red Mill has a lot of GF flours, including GF oats (high protein); make sure oats that you buy are certified GF because of crop rotation and processed in a plant with (nasty) wheat. Other safe high-protein flour are legumes (beans, pea), quinoa, amaranth, teff, timtana (timothy grass), nuts, and more. My gluten intolerance likely started 50 years ago. It morphed into celiac 14 years ago after catching H1N1 followed by an attempt on my life (high stress can be a trigger as well). Consider keeping a food log because once you have one autoimmune disease, others can follow. I was diagnosed with collagenous colitis 8 years ago and that is controlled by avoiding NSAIDs and legumes. Good to get enough exercise and avoid stress and the usual stuff doctors tell us. Nice thing about celiac is that it can be corralled by not eating gluten; tough parts are finding safe foods and the social isolation (especially for kids). https://nationalceliac.org/resources/what-is-celiac-disease-2/?gad_source=1&gclid=Cj0KCQjwhtWvBhD9ARIsAOP0Goj3ArbOBgXtZZKcfoYYpgG4GFLJzPn4jr7RRoNNzRWWwc7SIofRitEaAuuOEALw_wcB
If you don't cook, think about taking a GF cooking class. Almost everything can be cooked GF (even sourdough bread that is close to real bread). A lot of GF packaged food is high sugar/salt, and mostly rice and tapioca flours. So, no healthier than gluten-full processed food. There are a number of GF flours that are similar to wheat flour, such as Bob Red Mill's 1 to 1 Baking Flour, Pamela's, King Arthur, and others. High protein flours can be added to the mix Psyllium husk is a good additive to increase soluble and insoluble fiber (also for GI bacteria). There are also a lot of GF cookbooks and online recipes.
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.
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.
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.
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).
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?
@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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2 ReactionsHow do you get your protein? Where can I find certified Gluten-free food, name brands? Thank you
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1 ReactionI was diagnosed 17 years ago. I could only shop the outside aisles of the grocery store and health food stores. It has gotten much easier but spending time with a dietitian that understands Celiac and all the things you need to be careful with is really helpful since it is more than just food.
-
Like -
Helpful -
Hug
5 ReactionsThere are online apps such as FindMeGlutenFree that help with finding safe places/foods to eat (you still have to quiz the server/chef on if the food is safe). the National Celiac Assoc. has info (link below) and there are local chapters in many cities; here is the one for Denver https://denverceliacs.org/ . Bob's Red Mill has a lot of GF flours, including GF oats (high protein); make sure oats that you buy are certified GF because of crop rotation and processed in a plant with (nasty) wheat. Other safe high-protein flour are legumes (beans, pea), quinoa, amaranth, teff, timtana (timothy grass), nuts, and more. My gluten intolerance likely started 50 years ago. It morphed into celiac 14 years ago after catching H1N1 followed by an attempt on my life (high stress can be a trigger as well). Consider keeping a food log because once you have one autoimmune disease, others can follow. I was diagnosed with collagenous colitis 8 years ago and that is controlled by avoiding NSAIDs and legumes. Good to get enough exercise and avoid stress and the usual stuff doctors tell us. Nice thing about celiac is that it can be corralled by not eating gluten; tough parts are finding safe foods and the social isolation (especially for kids). https://nationalceliac.org/resources/what-is-celiac-disease-2/?gad_source=1&gclid=Cj0KCQjwhtWvBhD9ARIsAOP0Goj3ArbOBgXtZZKcfoYYpgG4GFLJzPn4jr7RRoNNzRWWwc7SIofRitEaAuuOEALw_wcB
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4 ReactionsIf you don't cook, think about taking a GF cooking class. Almost everything can be cooked GF (even sourdough bread that is close to real bread). A lot of GF packaged food is high sugar/salt, and mostly rice and tapioca flours. So, no healthier than gluten-full processed food. There are a number of GF flours that are similar to wheat flour, such as Bob Red Mill's 1 to 1 Baking Flour, Pamela's, King Arthur, and others. High protein flours can be added to the mix Psyllium husk is a good additive to increase soluble and insoluble fiber (also for GI bacteria). There are also a lot of GF cookbooks and online recipes.
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Like -
Helpful -
Hug
4 ReactionsI 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.
-
Like -
Helpful -
Hug
4 ReactionsI'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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Like -
Helpful -
Hug
1 ReactionMy 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).
-
Like -
Helpful -
Hug
2 ReactionsNow 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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Helpful -
Hug
4 Reactions@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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Like -
Helpful -
Hug
2 Reactions