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My Little Experiment

Noel1965

By Noel1965
in Coping with Celiac Disease

Recommended Posts

Noel1965 Apprentice
Noel1965
Posted

Okay - I have been glutenfree for 14 months and I have not felt any better. For some time now I have thought about eating something with gluten intentionally to see what would happen. Yesterday was the day I finally tried it. I have felt the same as always - my symptoms the same but no worse. How does this make sense? There will not be another day of gluten but I just had to know if there would be any difference. Any thoughts?

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kbtoyssni Contributor
kbtoyssni
Posted

I'd say you're either accidentally eating small amounts of gluten (maybe from CC or makeup/lotions) or you're intolerant to something else. Maybe you should keep a food journal to see if you can track anything else down?

How did you get diagnosed? Just curious because after 14 months you should be feeling better.

RiceGuy Collaborator
RiceGuy
Posted

Some folks have related that their reaction to gluten is delayed somewhat. For some people this can apparently be several days. So I wouldn't leap to any conclusions until a sufficient amount of time is allowed for any reactions to occur. Also, some report having to eat gluten over a period of time (rather than just once) in order to get a reaction.

As for not feeling any better after 14 months, that does seem a bit long without improvements. It took six months for me to notice anything, so I know it can take at least that long though. Perhaps the comment by kbtoyssni that you may not be 100% gluten-free is a reason. You'd have to recheck your dietary choices to be certain I guess.

gfp Enthusiast
gfp
Posted
Some folks have related that their reaction to gluten is delayed somewhat. For some people this can apparently be several days. So I wouldn't leap to any conclusions until a sufficient amount of time is allowed for any reactions to occur. Also, some report having to eat gluten over a period of time (rather than just once) in order to get a reaction.

As for not feeling any better after 14 months, that does seem a bit long without improvements. It took six months for me to notice anything, so I know it can take at least that long though. Perhaps the comment by kbtoyssni that you may not be 100% gluten-free is a reason. You'd have to recheck your dietary choices to be certain I guess.

I'm 3rding the comment by kbtoyssni...

Noel1965 Apprentice
Noel1965
Posted
  • Author

Thank you all for your input.....I guess I should try an elimination diet to see if I feel better without everything but "whole foods". I just don't know if I can do it - I love food too much!!! I was diagnosed with celiac 14 months ago after blood test and colonoscopy and endoscopy. My doctors say there is something else but never make any suggestions or test for anything else. Very frustrating. You are all probably right - I must be getting cross contamination some how. I just thought that after a year gluten free I would feel alot better even if there was a little cc. It will be interesting to see if I get a reaction different than my everyday celiac symptoms in the coming days. I should wouldn't you think? I had a burger for lunch and pizza for supper - thought I might as well go all out if I was going to try this. Anyway I will let you know if I get really ill (I will definitely deserve it if I do.) I actually hope that I do get really sick to show me this is all worth it.

Felidae Enthusiast
Felidae
Posted

Since you have an actual doctors celiac diagnosis, why would you want to poison yourself with gluten? I understand that you are still not feeling well, but I really think that it is not a good idea for you to eat gluten. Eating gluten as a celiac can cause you other health problems later on, so just be careful.

You could try to eliminate dairy or soy temporarily to see if you feel better.

DingoGirl Enthusiast
DingoGirl
Posted

I am heading out and don't have much time to write (and haven't read this whole thread), but see what happened here, in my two-day cheating binge last summer (not good!):

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gfp Enthusiast
gfp
Posted
Since you have an actual doctors celiac diagnosis, why would you want to poison yourself with gluten? I understand that you are still not feeling well, but I really think that it is not a good idea for you to eat gluten. Eating gluten as a celiac can cause you other health problems later on, so just be careful.

You could try to eliminate dairy or soy temporarily to see if you feel better.

I honestly agree!

Seriously I think you have probably been getting cross contamination or hidden gluten...

And... I LOVE FOOD TOO..... there is so much that can be made gluten-free... it really shouldn't limit you at home...

All my favotire recipes are naturally gluten-free... not using gluten-free bread or substitutes... because they really don't work for me in most cases...

REAL cooking ... that's what I love and live for!

Ursa Major Collaborator
Ursa Major
Posted

I can totally understand why Noel did his little gluten challenge. Wouldn't you question if you really had celiac disease after you've had no improvement on a gluten-free diet? I sure would!

Noel, are you sure you have eliminated all gluten? Did you buy a new toaster, new strainer for pasta, new cutting board? You shouldn't be using scratched teflon coated pots and pans, or wooden cooking spoons that have been used for gluten foods.

Do you take any vitamins or medication that could have gluten starch as a filler? Did you switch gluten-containing personal care products like shampoo, conditioner, soap, lotion, chap stick, toothpaste etc. to gluten-free ones? Vitamin E is often derived from wheat germ and could be a potential problem as well.

You might be intolerant to dairy or soy as well as gluten (and they both can give you much the same symptoms as gluten in that case), or you may have problems with other lectin foods (check the link in my signature for more info). Rice will give me diarrhea, stomach and bowel cramps, brain fog, somnolence, joint pain and other symptoms, just like gluten grains.

Replacement flours can be a problem, too, if they contain an ingredient you can't tolerate. Quite a few people here are unable to tolerate tapioca (I am one of them). In fact, I can't tolerate any starches very well, and I'm not the only one.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I caved in after about 6 months gluten-free (and feeling SO much better) and had a Chinese dumpling.

I had no reaction whatever.

However, I don't see this as license to eat gluten. I already have enough autoimmune problems, and I know enough to realize that more will develop if I go back to gluten.

The nice thing is, I don't react to cross contamination. The dangerous thing is, I don't react to cross contamination.

Noel1965 Apprentice
Noel1965
Posted
  • Author

Thanks for all of your feedback and I knew when writing my post some people would not understand why I would do this to myself - and that is okay - I see your point. My point in intentionally having some gluten yesterday was to see if it is in fact gluten that is making me sick - as in my symptoms. I know that it destroys my intestines/villi and that is why I have been gluten free for 14 months and will continue to be. I really wish that I would get violently ill right now to show me that the gluten is in fact making me sick and not leave me wondering if it is something else. Not that I disagree with my diagnosis - I believe the biopsy and the doctors and will stay gluten free. But I am starting to think that my symptoms are due to something other than the gluten. It has been 34 hours since eating the burger yesterday and my symptoms have not gotten worse than usual.

Thank you for your understanding Ursa Major - and yes, yes and yes....I have all of my own dishes, pans, strainers, toaster.......I have checked all of my personal care products - or just stopped using them - my hands are in such need of some hand cream!!! lol

I'll explain my frustration - I feel worse now and symptoms are worse than before I was diagnosed and I have been gluten-free for 14 months and did not cheat once until yesterday.....I didn't even really want it. I am trying to figure out what the heck is wrong with me. Ontop of celiac disease I also suffer from depression and post traumatic stress disorder - all my symtoms came to a head when my son Jordie came home from the hospital to die at home (he was only 12). I believe stress brought it on. Ontop of this Jordie had ulcerative colitis and my brother has crohn's (as do 2 cousins and 2 aunts). My doctor gave me the diagnosis of celiac disease and initially I was so thankful because all I had to do was change my diet and I would get better........and today I am worse and all I get told is keep at it. I just don't get it!

Sorry for griping I am just so frustrated and I feel like I am trying to figure this out alone and I do not have any idea how to "doctor shop". In fact everytime I am told about a good doctor, I find out that they are not taking new patients.

Thanks for listening........Noel

larry mac Enthusiast
larry mac
Posted

Noel,

That's just awful. I'm so sorry for your troubles. Sounds like you've had remarkable patience & perseverance given the circumstances. I sincerlely hope you find a better doctor, or follow some advise from the more knowledeable forum members here.

best regards, lm

Abug Rookie
Abug
Posted
Vitamin E is often derived from wheat germ...

Oh my, maybe my trouble isn't coming from stress over buying a house, lol, I should re-check the company that makes my vitamin E capsules! I'm on a new bottle now, and didn't make the connection. If I find a problem, you'll be seeing a new thread pop up soon :D unless Noel needs a new source of vitamin E, then I'll ask. Actually, I saw a headline on the news once recently, "Is Vitamin E really good for you, or is it actually bad for you?" Unfortunately, I missed the story, so I didn't get to see what they thought, or hear any of the arguments against it.

tarnalberry Community Regular
tarnalberry
Posted

I didn't notice nearly as much improvement as I wanted until I cut out dairy as well. I discovered, via a strict elimination diet (I don't recommend my method to anyone) that I was casein intolerant.

Nancym Enthusiast
Nancym
Posted

Well, it sounds like celiac disease probably wasn't 100% of your problem. You might have some yet undiagnosed issues going on. Or it is possible there are other foods causing your symptoms. You might want to write down every single weird symptom you have, visual, intestinal, mental, etc and present that to your doctor. There are some diseases that have a lot of weird, disparate symptoms that people don't usually relate together.

As far as trying an elimination diet, I guess you have to weigh what means more to you, temporarily giving up some foods or trying to figure out your health issues. I know how difficult it is to ponder these changes and face them but implementing isn't actually as hard as it seems. And it takes a few weeks of adherence and you adjust. challe

Are you still eating dairy products? Most celiacs, maybe even all, are lactose intolerant until their villi heal, even then something like 50% are casein intolerant.

Sorry to hear about your loss. *hugs* Life throws us too challenges at once sometimes. :(

Felidae Enthusiast
Felidae
Posted
Thanks for all of your feedback and I knew when writing my post some people would not understand why I would do this to myself - and that is okay - I see your point. My point in intentionally having some gluten yesterday was to see if it is in fact gluten that is making me sick - as in my symptoms. I know that it destroys my intestines/villi and that is why I have been gluten free for 14 months and will continue to be. I really wish that I would get violently ill right now to show me that the gluten is in fact making me sick and not leave me wondering if it is something else. Not that I disagree with my diagnosis - I believe the biopsy and the doctors and will stay gluten free. But I am starting to think that my symptoms are due to something other than the gluten. It has been 34 hours since eating the burger yesterday and my symptoms have not gotten worse than usual.

Thank you for your understanding Ursa Major - and yes, yes and yes....I have all of my own dishes, pans, strainers, toaster.......I have checked all of my personal care products - or just stopped using them - my hands are in such need of some hand cream!!! lol

I'll explain my frustration - I feel worse now and symptoms are worse than before I was diagnosed and I have been gluten-free for 14 months and did not cheat once until yesterday.....I didn't even really want it. I am trying to figure out what the heck is wrong with me. Ontop of celiac disease I also suffer from depression and post traumatic stress disorder - all my symtoms came to a head when my son Jordie came home from the hospital to die at home (he was only 12). I believe stress brought it on. Ontop of this Jordie had ulcerative colitis and my brother has crohn's (as do 2 cousins and 2 aunts). My doctor gave me the diagnosis of celiac disease and initially I was so thankful because all I had to do was change my diet and I would get better........and today I am worse and all I get told is keep at it. I just don't get it!

Sorry for griping I am just so frustrated and I feel like I am trying to figure this out alone and I do not have any idea how to "doctor shop". In fact everytime I am told about a good doctor, I find out that they are not taking new patients.

Thanks for listening........Noel

Sorry for jumping on you earlier. You are really going through a lot. It sure seems like you may have something else going on with your system in addition to celiac.

I know all about the doctor shortage here. Too bad we aren't related or I could try to get you in with my doctor who also is not taking any new patients.

I hope things only look up from here.

babygirl1234 Rookie
babygirl1234
Posted

just because you arnt having any signs of being gluten doesnt mean that your not doing damage to yourslef ive been havent stomach probs for the last comp months and they still dont know why theythink its my celiac disease or over grown backteria. But i havent gotten the reluts of my breathing test i went for lastweek

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