It's not only long-term care. Some hospitals won't provide GF meals unless someone has a diagnosis of celiac. I have celiac, but no formal diagnosis because the GI 14 years ago thought because I wasn't anemic that I had diverticulosis (still none), so only GF for a week and one biopsy sample of my small intestine (the celiac was new, triggered by H1N1, so minimal GI damage). I have the HLA DQ8 0302 haplotype, but that just means that I am at risk for it; the genetic test doesn't confirm celiac because ~30-40% of people have HLA DQ2 or DQ8. There is no way that I'm making myself sick for weeks just to confirm something that I have. I have celiac listed on my medical charts, but some doctors won't accept that without endoscopy and bloodwork. It is easier convincing them now that I have collagenous colitis (8 years). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10039793/#:~:text=Background,based%20cohort%20studies%20are%20rare.
It's not only long-term care. Some hospitals won't provide GF meals unless someone has a diagnosis of celiac. I have celiac, but no formal diagnosis because the GI 14 years ago thought because I wasn't anemic that I had diverticulosis (still none), so only GF for a week and one biopsy sample of my small intestine (the celiac was new, triggered by H1N1, so minimal GI damage). I have the HLA DQ8 0302 haplotype, but that just means that I am at risk for it; the genetic test doesn't confirm celiac because ~30-40% of people have HLA DQ2 or DQ8. There is no way that I'm making myself sick for weeks just to confirm something that I have. I have celiac listed on my medical charts, but some doctors won't accept that without endoscopy and bloodwork. It is easier convincing them now that I have collagenous colitis (8 years). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10039793/#:~:text=Background,based%20cohort%20studies%20are%20rare.
Oh, I am so sorry... you have the two main problems that we face in modern medicine:
1. Getting the diagnosis.
2. Needing more research so the modern medicine will get the diagnosis.
It is a dead end street and so frustrating!!
I agree, making yourself sick, so the paperwork matches reality, is NOT an option!
If you ever, and hopefully not, you land in hospital, there are some companies that deliver GF meals...I have used that in days gone by.
Cheers to you for doing what you wisely know is necessary!
@barbbielor
Oh! You are good to avoid those gluten free treats. Sometimes I just want an Oreo!
I was diagnosed in 2008 and back in “the day” gluten free bread was the consistency of cardboard. Heavy, dense, flavorless stuff. I am so grateful for the variety of products one can buy today and still maintain rigorous adherence to the diet.
I’m frankly surprised that more restaurants don’t adapt recipes to make sauces gluten free. If one can avoid cross contamination by avoiding places that are oblivious or the cuisine is dependent on gluten ingredients, you can enjoy more than a salad.
Progress!
Have you tried the 'Glutino' line of products?
They have an 'Oreo ' cookie that is addictive.
Don't know if they are available in the U.S., but maybe online?
...and No, I'm not a shareholder!
Oh, I am so sorry... you have the two main problems that we face in modern medicine:
1. Getting the diagnosis.
2. Needing more research so the modern medicine will get the diagnosis.
It is a dead end street and so frustrating!!
I agree, making yourself sick, so the paperwork matches reality, is NOT an option!
If you ever, and hopefully not, you land in hospital, there are some companies that deliver GF meals...I have used that in days gone by.
Cheers to you for doing what you wisely know is necessary!
Thanks. My brother had cancer a few years ago and the hospital staff said he couldn't have GF food because of no diagnosis. He hadn't been to a doctor in decades (paranoia), so no diagnosis. It is a lot easier in large metropolitan areas to get GF food (and ingredients) so I'm set. I wish I could find a bike or travel touring option for GF; I gave up bike tours because their GF was gluten lite.
Have you tried the 'Glutino' line of products?
They have an 'Oreo ' cookie that is addictive.
Don't know if they are available in the U.S., but maybe online?
...and No, I'm not a shareholder!
Have you tried the 'Glutino' line of products?
They have an 'Oreo ' cookie that is addictive.
Don't know if they are available in the U.S., but maybe online?
...and No, I'm not a shareholder!
I have! I have to say “get thee behind me, Satan.”
There are now Nabisco gluten free Oreos.
I have to keep thinking about my A1C and visualize my endocrinologist’s finger wagging at me.
After fighting different GI issues my whole life, 7 years ago I was diagnosed with CD at the age of 56. I am very reactive to cross-contamination of gluten and it is a daily battle. My “intestines” can react “aggressively” within 30 minutes, but the increased brain fog and fatigue can last for a week to 10 days. Yes, GF alternatives are out there, but many are not very tasty or healthy for you. Oreo GF version #1 was a no-go for me as I reacted to them. Version #2 has been a win, so far… We are all different in our sensitivity or reactiveness, so having support and encouragement is awesome, but we must be our own strong advocate.
After fighting different GI issues my whole life, 7 years ago I was diagnosed with CD at the age of 56. I am very reactive to cross-contamination of gluten and it is a daily battle. My “intestines” can react “aggressively” within 30 minutes, but the increased brain fog and fatigue can last for a week to 10 days. Yes, GF alternatives are out there, but many are not very tasty or healthy for you. Oreo GF version #1 was a no-go for me as I reacted to them. Version #2 has been a win, so far… We are all different in our sensitivity or reactiveness, so having support and encouragement is awesome, but we must be our own strong advocate.
@michaelens I know you’ve been around Connect for several year, but this is your first comment. So, welcome! Sounds like you’ve had real problems until now. How have you managed CD since diagnosis?
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It's not only long-term care. Some hospitals won't provide GF meals unless someone has a diagnosis of celiac. I have celiac, but no formal diagnosis because the GI 14 years ago thought because I wasn't anemic that I had diverticulosis (still none), so only GF for a week and one biopsy sample of my small intestine (the celiac was new, triggered by H1N1, so minimal GI damage). I have the HLA DQ8 0302 haplotype, but that just means that I am at risk for it; the genetic test doesn't confirm celiac because ~30-40% of people have HLA DQ2 or DQ8. There is no way that I'm making myself sick for weeks just to confirm something that I have. I have celiac listed on my medical charts, but some doctors won't accept that without endoscopy and bloodwork. It is easier convincing them now that I have collagenous colitis (8 years). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10039793/#:~:text=Background,based%20cohort%20studies%20are%20rare.
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Helpful -
Hug
1 ReactionOh, I am so sorry... you have the two main problems that we face in modern medicine:
1. Getting the diagnosis.
2. Needing more research so the modern medicine will get the diagnosis.
It is a dead end street and so frustrating!!
I agree, making yourself sick, so the paperwork matches reality, is NOT an option!
If you ever, and hopefully not, you land in hospital, there are some companies that deliver GF meals...I have used that in days gone by.
Cheers to you for doing what you wisely know is necessary!
-
Like -
Helpful -
Hug
1 ReactionHave you tried the 'Glutino' line of products?
They have an 'Oreo ' cookie that is addictive.
Don't know if they are available in the U.S., but maybe online?
...and No, I'm not a shareholder!
-
Like -
Helpful -
Hug
2 ReactionsThanks. My brother had cancer a few years ago and the hospital staff said he couldn't have GF food because of no diagnosis. He hadn't been to a doctor in decades (paranoia), so no diagnosis. It is a lot easier in large metropolitan areas to get GF food (and ingredients) so I'm set. I wish I could find a bike or travel touring option for GF; I gave up bike tours because their GF was gluten lite.
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1 ReactionActually, Oreo has GF Oreos as well now. A bit too much sugar for me but they look like Oreos.
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2 ReactionsI have! I have to say “get thee behind me, Satan.”
There are now Nabisco gluten free Oreos.
I have to keep thinking about my A1C and visualize my endocrinologist’s finger wagging at me.
-
Like -
Helpful -
Hug
1 ReactionAfter fighting different GI issues my whole life, 7 years ago I was diagnosed with CD at the age of 56. I am very reactive to cross-contamination of gluten and it is a daily battle. My “intestines” can react “aggressively” within 30 minutes, but the increased brain fog and fatigue can last for a week to 10 days. Yes, GF alternatives are out there, but many are not very tasty or healthy for you. Oreo GF version #1 was a no-go for me as I reacted to them. Version #2 has been a win, so far… We are all different in our sensitivity or reactiveness, so having support and encouragement is awesome, but we must be our own strong advocate.
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Helpful -
Hug
1 Reaction@michaelens I know you’ve been around Connect for several year, but this is your first comment. So, welcome! Sounds like you’ve had real problems until now. How have you managed CD since diagnosis?
Yes, they are not nearly as good.... you're right way too much sugar.
My non-GF friends love the Glutino ones... so do I !
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1 ReactionYes, have tried those.... the Glutino is far and away better!
I don't buy them often, because they are too delicious!!
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