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I'm Cured!-temporarily?


Candy

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Candy Contributor

B) This may sound strange,but after going totally gluten-free for 2-3 months,I feel fine -so now I'm back to eating wheat and refined sugar.I felt I could eat it,so when I went to the supermarket I gingerly picked up two wheat rolls and a pumpernickel bagel and I ate them without pain or side effects or anything.I can't believe it,I feel like singing Aretha Franklin's song "So Damned Happy", 'cause I am! This week I ordered two wheat pizzas and ate those ,as if I were never Gluten-Intolerant,I had anchovies(little fish)out on my half for a topping. I ate wheat pound cake,two pieces, with no problem.I can even enjoy tomato-basil wheat tortilla wraps,since my wheat is going down real easy suddenly.I'll probably have bouts of Gluten sensitivity throughout my whole life where I'll have to go back and forth between wheat bread and rice bread,but for now I'm back on wheat! Has anybody experienced this? gluten-free for a few months then healed and back on wheat and some refined white sugar? It's amazing,it really is. I went around feeling like God raised me from the dead or something-I'm healed! I'm healed! I kept thinking. I will still keep gluten-free bread mixes handy so if and when I revert back to rice dependence I'll have some handy.

Candy


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Jnkmnky Collaborator

You do KNOW that Celiac disease can't be cured, right? I've also never heard of a true remission. Good luck with what you're doing. Go get a biopsy in a year and let us know the results. Also, if you're truely cured, call that Dr. Fasano and let him take a look at you so the rest of us can get cured and have a Dominoes Pizza party! :lol:

VydorScope Proficient

How do you know you had celiac disease to begin with ? HAving the genes just means you CAN GET IT, not that you have it.

jenvan Collaborator
B) This may sound strange,but after going totally gluten-free for 2-3 months,I feel fine -so now I'm back to eating wheat and refined sugar.

Candy--

Well, if you have Celiac or gluten intolerance, going on the gluten-free diet WILL make you feel better. But that doesn't mean you are cured. You can not be cured of Celiac...its with you period, and so is the gluten-free diet. Don't let your lack of symptoms fool you.

Have you been diagnosed with Celiac or had Celiac-like symptoms? Or were you just trying the diet? If you have Celiac, you can not yo-yo on the diet--you will never heal and your chances of premature death, cancer etc. will remain high. Some folks who have Celiac and return to the gluten-containing diet will seem fine and not begin to feel poorly again for months. Supposedly some folks can experience a "remission" from Celiac at one point in their life---However, the question remains--how would one determine if they were in such a state? And how would they know the healthiest protocol for them? In this situation you can not monitor your internal on symptoms alone.

Why did you end up going on the gluten-free diet? Please know that Celiac is not to be taken lightly. If you are not sure if you have it or not, I encourage you to seek testing and do some investigating so as not to hurt your indefinitely. If you think you don't have Celiac or just a simple gluten intolerance, I encourage you to figure that out too...either can end up being damaging to your health.

Fiddle-Faddle Community Regular

Hi, Candy,

I had a similar experience this week--I gave in and had a spring roll and a steamed dumpling (I have some Chinese friends who are awesome cooks) and, as far as I could tell, I didn't react.

However, I'm not ready to dive back into gluten yet. I have too many immune system problems--I have Hashimoto's, which right now is not well under control, and there was that unexplained DH-type rash. I think, after reading this board, that gluten plays a strong role in many immune system problems, as do vaccines. I already know that I have bad reactions to mercury-containing vaccines. I feel like a sitting duck, and gluten could be the straw that breaks my back (don't you juse LOVE mixed metaphors? :lol: ).

If you did have a confirmed diagnosisi of celiac, you might want to be very careful at this point. In fact, even if you didn't, you might not want to have gluten more than a couple of times a week, and keep monitoring things like gassy tummy and bloating.

Either way, good luck, and keep us posted! I'm so glad you're feeling good!

Nantzie Collaborator

Maybe it was candida and not celiac. Google candida and see if maybe that matchs your symptoms. Candida feeds off of carbs, but can be brought back into balance by cutting out carbs for a period of time. So that would make a lot of sense for you. Worth a look.

Hope you continue to feel better.

Nancy

mamaw Community Regular

Have you been actually dx'd for celiacs? If so I think you are playing with fire.......or russian roulette.........

I hope this doesn't come back to bite you with a vengance.

mamaw


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Nantzie Collaborator

Very true. Did you ever get a biopsy? If not, you probably should.

celiac3270 Collaborator

Your signature says you have the gene. It doesn't say you were diagnosed. And the way it works with the genes is that 1/2 of the population (about) has DQ2, and maybe 10% have DQ8 (don't know exactly how many so that percentage could be off a bit). So you might not even have celiac in the first place.

Secondly, if you did experience pain before when eating wheat, there was likely SOME problem, be it celiac or something else. And you can't just go back to eating wheat. A lot of people have mistakenly done that, but I can tell you that whether or not you feel bad, your intestines are being destroyed again, and if you continue to eat wheat, you'll find yourself back in the same situation you were in at the start in a few days or weeks. Furthermore, if you continue to eat wheat when you have celiac, then you have tremendous health risks long term, such as the development of other autoimmune diseases, diabetes, cancer, etc., and you're shaving years off of your life expenctancy. So if you have a problem with celiac, you need to stay on the diet 100%.

  • 2 weeks later...
ms-sillyak-screwed Enthusiast
B)...I'm back to eating wheat and refined sugar.I felt I could eat it,so when I went to the supermarket I gingerly picked up two wheat rolls and a pumpernickel bagel and I ate them without pain or side effects or anything.I can't believe it,I feel like singing Aretha Franklin's song "So Damned Happy", 'cause I am! This week I ordered two wheat pizzas and ate those......

....... ate wheat pound cake,two pieces, with no problem.I can even enjoy tomato-basil wheat tortilla wraps,since my wheat is going down real easy suddenly......

....I'm back on wheat! Has anybody experienced this? gluten-free for a few months then healed and back on wheat and some refined white sugar? It's amazing,it really is. I went around feeling like God raised me from the dead or something-I'm healed! I'm healed!

celiac3270 -- Well said!

Candy -- You aren't a Celiac-wanna-be? Are you? Celiac de jour; for you too? Doctors say people think it's chic and trendy to have celiac disease now... Or perhaps someday you will wake-up from the wild fantasy glutened dream and have to live with a life with steatorrhea diarrhea.

I'd take celiac3270 advise.

Be well!

KaitiUSA Enthusiast

Well sorry to inform you but as they have said...you CAN'T cure celiac. You feel better after being gluten free for 2-3 months because the damage likely healed and you were not getting reactions because you were not eating gluten. If you get back on it now you will do more damage and then it will eventually catch back up with you. Jst because you may not feel the symptoms does not mean damage is not being done because I can assure you that you are slowly killing yourself by eating wheat again. Some people just never get symptoms. I hope you will research that a bit and I really hope you come to the realization that you need to be on this diet and not just temporary.

Wait, were you diagnosed because I just saw that you have a gene for it. Having the gene does not mean you have celiac. Many people have the gene but never get it activated.

  • 2 weeks later...
jesspiag Newbie

I was diagnosed as a Celiac in 1982-83 when I was around 2 years old. My case was a severe one, I began devleopining normal but right around the time baby food was introduced I began to decline in weight and became severly malnurished. I was hospitalized and many tests were run by many doctors, most of whom did not know what they were looking for, and eventually I was diagnosed with what was then a rare disease...Celiac.

Growing up I knew of no one else who had Celiac and felt different and weird because I ate sandwiches on rice cakes (the options were slim then) and couldn't eat my friend's birthday cakes. My mother was well informed and gave me everything she could, but until recently the substitutes for things like cake and donuts, bread and pizza were not very good at all. I continued to have have slip ups, a malt one day, soy sauce another, and continued to be violently ill. But I was curious, and when I was about 13 I had my first intentional gluten. I remember thinking "I'm just going to try a piece of a donut, I know I'll be sick, but I want to know what it tastes like." So I ate a piece and waited...but nothing happened. So slowly, I began trying things I never had before (which seemed like everything) pizza, bread, chicken nuggets, cake, cookies, pretzles, beer...until eventually I was completely off my gluten free diet (secretly because I knew my mom would kill me if the gluten wouldn't). I wasn't getting sick and finally I felt normal.

I couldn't imagine how hard it would have been to go through college gluten free, I lived in a ho-dunk town in North Carolina and if I thought the gluten free selections were bad at home (a suburb of Chicago) it was nothing compared to the deep fried gluten caked fare of the south.

When I graduated and moved back home I felt guilty (the jig was up, my mom found out), and not so well, I knew I had to go back to gluten-free living, and suddenly Celiac was everywhere, on the news, in the magazines, co-workers had it, friends of friends, I wasn't alone anymore. It was hard getting back on the diet, but I can't say I regret having gone off it. I was a kid and instead of experimenting with drugs and alcohol, I experimented with gluten, I had to know. I had a biopsy done once my mom found me out and the biospy showed my intestines were normal...unharmed by my years of glutunous gluten consupmtion. But it doesn't make sense...Celiac doesn't go away!

So...to make a LONG story not as long...I was lucky, or the biopsy was wrong (and if you knew my doctor you might agree) but I am still a Celiac and always will be. And I can tell you from experience, it's easier to stay on the gluten free diet and develop new healthy eating habits and find great gluten free meals because the longer you do it the easier it gets. But if you start and stop, it's harder to keep up with what's new in the gluten-free world, harder to get back into the swing of life as a Celiac, and it reeks havoc on your body. Truth is, we could have it a lot worse. Every year new products come out, restaurants offer more gluten free dishes, and the community of support grows. Stick with it! I'm doing it again and I feel great (no more headaches, missed parties because I'm too tired, having the big D at the most inconvient of times or all the time for that matter), and you will too! And when it's hard, or you feel like there's nothing you can eat, or no one who understands, you can always come here and count on someone to help...we're all in this together.

DingoGirl Enthusiast
but I can't say I regret having gone off it. I was a kid and instead of experimenting with drugs and alcohol, I experimented with gluten, I had to know.

:lol: that is SO funny!

So...to make a LONG story not as long...I was lucky, or the biopsy was wrong (and if you knew my doctor you might agree) but I am still a Celiac and always will be. And I can tell you from experience, it's easier to stay on the gluten free diet and develop new healthy eating habits and find great gluten free meals because the longer you do it the easier it gets. But if you start and stop, it's harder to keep up with what's new in the gluten-free world, harder to get back into the swing of life as a Celiac, and it reeks havoc on your body. Truth is, we could have it a lot worse. Every year new products come out, restaurants offer more gluten free dishes, and the community of support grows. Stick with it! I'm doing it again and I feel great (no more headaches, missed parties because I'm too tired, having the big D at the most inconvient of times or all the time for that matter), and you will too! And when it's hard, or you feel like there's nothing you can eat, or no one who understands, you can always come here and count on someone to help...we're all in this together.

I am puzzeled, by your story, have to admit....your villi may have been restored from years of being gluten-free, but eventually, I think it would have caught up with you again.....so glad that you're back to eating right!

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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