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    Do you have questions about celiac disease or the gluten-free diet?

bails74

Do you want to eat gluten again?

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I've been eating a gluten free diet for a long time now.  In the beginning I didn't mind eating gluten free because the pain of eating gluten was too much.  I wouldn't go anywhere near anything with gluten and you couldn't pay me to do it.  But I've been doing a lot of things to help improve my digestion and I have eaten things with wheat in them (small amounts) and gotten away with it.  I don't think I could ever go back to eating wheat again consistently even if I could tolerate it.  But there's some high gluten foods that I do miss and I would have them occasionally if I could.  

Just wondering if I'm alone on this. Anyone else out there that would eat gluten occasionally if you could?  Or are you never going to touch anything with Gluten in it ever again even if you could get away with it?

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1 hour ago, bails74 said:

I've been eating a gluten free diet for a long time now.  In the beginning I didn't mind eating gluten free because the pain of eating gluten was too much.  I wouldn't go anywhere near anything with gluten and you couldn't pay me to do it.  But I've been doing a lot of things to help improve my digestion and I have eaten things with wheat in them (small amounts) and gotten away with it.  I don't think I could ever go back to eating wheat again consistently even if I could tolerate it.  But there's some high gluten foods that I do miss and I would have them occasionally if I could.  

Just wondering if I'm alone on this. Anyone else out there that would eat gluten occasionally if you could?  Or are you never going to touch anything with Gluten in it ever again even if you could get away with it?

I think it depends on why you are gluten free.  People with Celiac should not consume gluten because it sets off an auto immune reaction.  

If you went gluten-free because of FODMAPS, then you should be able to get away with small amounts of wheat- especially if you balance the amount of FODMAP in your other food.

if you went gluten for some other reason, maybe the reason has gone away?  

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4 minutes ago, kareng said:

I think it depends on why you are gluten free.  People with Celiac should not consume gluten because it sets off an auto immune reaction.  

If you went gluten-free because of FODMAPS, then you should be able to get away with small amounts of wheat- especially if you balance the amount of FODMAP in your other food.

if you went gluten for some other reason, maybe the reason has gone away?  

For me personally, I did an elimination diet that excluded wheat/gluten.  As soon as I ate something with wheat in it I had an immediate reaction.  My eyes started watering and I was sneezing.  For the next week my body was all achy.  I had bad headaches.  I lacked energy.   After that I cut out wheat/gluten.   

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I have a bucket list of gluten foods for my family to bring me on my death bed -_-. But I would not eat them unless I was dying anyway.
I have found Gluten free version of everything, harder is when you can not have starches to simulate that gooy texture or sugars....I do some fun things every now and then making baked goods with 2-6tbsp of psyllium husk in them to make them gooy like a raw gooy yeasty gluten dough. I also found flavor drops from oooflavors for Sourdough bread, rye bread, wheat bread, pizza, squaw bread, cinnamon rolls, etc. I add to my gluten and grain free versions to make them at least taste accurate. My gluten free cookies are just as good as the gluten and full carb ones even if my one low carb. My almond butters are a godly treat, I even made dead on accurate lemon squares, brownies, waffles, pancakes, and doughnuts. Decent breaks, bagels, and buns, and the perfect dressing bread for making thanksgiving dressing.  Heck I even ones made a montecristo using store bought low carb almond based breads still would love to be able to eat the ones from cheddar's.

I think the thing I really miss most is just going out to eat at a restaurant and not having to worry about being made sick -_-.

 

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16 hours ago, bails74 said:

For me personally, I did an elimination diet that excluded wheat/gluten.  As soon as I ate something with wheat in it I had an immediate reaction.  My eyes started watering and I was sneezing.  For the next week my body was all achy.  I had bad headaches.  I lacked energy.   After that I cut out wheat/gluten.   

Maybe you should consider getting tested for a wheat allergy (IgE response).   Your symptoms sound more like an allergy and not gluten intolerance.  I am not a doctor, but I get your symptoms when I am around cats or horses.  I do not think you need to be on wheat to get tested (skin) I like getting tested for celiac disease.  At least then you might be able to consume rye or barley.  

https://www.mayoclinic.org/diseases-conditions/wheat-allergy/symptoms-causes/syc-20378897

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8 hours ago, cyclinglady said:

Maybe you should consider getting tested for a wheat allergy (IgE response).   Your symptoms sound more like an allergy and not gluten intolerance.  I am not a doctor, but I get your symptoms when I am around cats or horses.  I do not think you need to be on wheat to get tested (skin) I like getting tested for celiac disease.  At least then you might be able to consume rye or barley.  

https://www.mayoclinic.org/diseases-conditions/wheat-allergy/symptoms-causes/syc-20378897

Thanks for that suggestion.  I'm going to get tested for that.   I have been tested for celiac but it came back negative.   I know there are a lot of people that are Gluten Intolerant that no test will pick up anything however. 

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On 7/2/2019 at 4:38 AM, cyclinglady said:

Maybe you should consider getting tested for a wheat allergy (IgE response).   Your symptoms sound more like an allergy and not gluten intolerance.  I am not a doctor, but I get your symptoms when I am around cats or horses.  I do not think you need to be on wheat to get tested (skin) I like getting tested for celiac disease.  At least then you might be able to consume rye or barley.  

https://www.mayoclinic.org/diseases-conditions/wheat-allergy/symptoms-causes/syc-20378897

I got tested for wheat allergy and it came back negative.  I guess I'm gluten intolerant.  

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You many still have celiac disease as about 10% of celiacs are seronegative and you might not have had the complete celiac blood panel.  You might not have celiac disease and may be Non-Celiac Gluten Sensitivity/Intolerance.   Still, you have been gluten free for a while, so testing is not possible unless you start eating gluten again. If the diet is working, you probably have your answer — avoid gluten.  

I wish you well!  

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Right, the celiac blood antibodies testing doesn't work unless you have been eating gluten for 12 weeks.  But there are many  more people with NCGS than people with celiac disease.  The results is the same though, we have to avoid gluten for life.  In theory that is.  Really not enough is known about NCGS to say for sure.  Some NCGS people may have FODMAP intolerance as CL said.  Others may have a different issue.  Mysteries still surround us.

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As above posters said some don't show gold standard results. 

My journey , I could not finish my 2 week gluten challenge. I am considered NCGS. My symptoms are a mile long and include many organ system besides gi and skin.

My endoscopy showed intraepithelial infiltration, inflammation, (visible by the naked eye stomach and esophageal) discolored angry inflammation .  The past three years when the unlikely cc event occurs I break out faithfully in Dermatitis Herpteformis. I can't finish a 2 week challenge, so no 12 week challenge will be taking place to get a gold standard. 

As I learned from the veterans here DH may never show typical blood work results. I learned from veterans here to stay as whole foods as possible and limit processed to those my body likes often considered certified gluten-free.

Good luck on your journey. They may not completely understand where NCGS fits in etc, but my opinion take the diagnosis serious.

Edit : to answer your initial question about eating gluten not an exact /direct answer. When I get damaged cc I crave deep dish Chicago style pizza and Chicago style hot dogs for a few days after. I do not act on it or actually eat either, but it is an odd thing I have noticed . 

I love Ennis bucket list .

Mine is an afterlife dream of being greeted in the afterlife with a deep dish Chicago style pizza .

 

Edited by Awol cast iron stomach
One more thought

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I wouldn't do it unless I was going to the electric chair, and maybe not even then. The thought of it churns my stomach and makes the hair stand up on my arms. I'm not sure I could even swallow it. Yuck. Poison.

I have accidentally eaten things I thought were gluten free and absolutely no response. That doesn't mean there was not an auto immune reaction, which means damage. I tried something that was supposed to be ok when I first started going gluten free, that I later found out it wasn't, for an entire month before I got a reaction.  Don't be silly enough to take no reaction of a one time ingestion as your guide.

Nobody knows what an ongoing assault on your immune system will specifically do in the long run, but Celiac's is linked to so many other really awful diseases, why would someone with Celiac's chance it?  

If you have Celiac's and want to get Alzheimer's, Dementia, Rhumatoid Arthritis, Type 1 Diabetes, Fibromyalgia, or some other fun thing like that, and then slowly die, go for it. 

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There's some interesting thoughts here.   But there is no way anyone could ever avoid eating wheat/gluten completely.  At some time we are all going to consume it.  It is unavoidable.   What I'm doing is to avoid it as much as humanly possible but to also do things to help myself heal so when I do consume some I can handle it.   That's working for me at the moment.   I like trying to do things to help myself heal rather than just saying I'm going to avoid Gluten.  I did that in the beginning and became less and less tolerant of any wheat.

 

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Correct. With auto immune disease, the response is often stronger as the immune system recovers and gets stronger. So eating gluten and having less of a reaction is a sign that your immune system is WEAKER, not that things are better. I don't think that's what you want to do.

 

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3 minutes ago, Beverage said:

Correct. With auto immune disease, the response is often stronger as the immune system recovers and gets stronger. So eating gluten and having less of a reaction is a sign that your immune system is WEAKER, not that things are better. I don't think that's what you want to do.

 

That's interesting.  Are there any research papers to prove that?

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Not really. I some cases I feel social pressure to eat things that might be cross contaminated with gluten, or contain gluten. I still don't see the point, though in eating something that I know is harmful to my health. I merely find alternatives that I know are healthy. I get used to the very strict gluten free diet and it doesn't bug me. 

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bails74,

NCGS has been proven to be or at least suspected if not proven to be auto-immune in origin.

see this recent research about this topic "Extra-intestinal manifestations of non-celiac gluten sensitivity: An expanding paradigm."

https://www.ncbi.nlm.nih.gov/pubmed/29662290

Inflammation is being triggered by gluten not only in celiac's but in NCGS patients as well.

There is recent emerging research stay says microvilli trigger our body to assume an "inflammatory" state found in Celiac's and apparently NCGS patients alike.

Here is a nice article about it by Medical news today.

https://www.medicalnewstoday.com/articles/321624.php

My thought anything that can be triggered can be untriggered for now....know stress makes these condition worse.

it will take more study to prove microvilli are triggering our body to attack itself.

these things happen (in the body other than the GI tract) because other organs also have mircrovillli that tell our body to go into ant-inflammatory state.

the trick will be finding what conditions can silence or turn off this reaction in our body.

see this article entitled "Food additive found in candy, gum could alter digestive cell structure and function"  about how titanium dixodes in our food can trigger some people to react to food proteins in our body because our GI tract begins to leak.

But with all the additives in our food today ...we might just be slowly poisoning ourselves....and don't even know it.

https://phys.org/news/2017-02-food-additive-candy-gum-digestive.html

I hope this is helpful but it is not medical advise.

Posterboy,

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