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I Have Celiac, But No Sickness When I Cheat... Help!

moats1234

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moats1234 Newbie
moats1234
Posted

So I am a bit confused. I was diagnosed with Celiac about 2 months ago and have been pretty strict about my diet. My doctor said that my levels were like nothing she has ever seen. However, I cheated two weeks ago and ate a meal full of gluten. I didn't get sick. Yes, I was tired for a few hours and I did develop a slightly itchy rash on my hands, but that's it.

Is this normal? I'm kind of lost as my doctor said there is nothing more she can do for me but for me to follow a diet. HELP!

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ravenwoodglass Mentor
ravenwoodglass
Posted

While not the norm it can happen. Levels of sensitivity vary. Please don't use this as encouragement to 'cheat' every now and then. The tiredness and rash do show that your body is reacting. Once that rash, which is likely to be DH, gets a good hold in your skin it can take up to 2 years for the antibodies to leave the skin. You could also have other organs like your liver, gallbladder, thyroid and other organs including the brain being impacted. Keep strict to the diet.

luvs2eat Collaborator
luvs2eat
Posted

When I had been gluten free for a whole year... I scarfed down a big hunk of the beautiful crusty loaf of bread I'd made for others... and had NO repercussions. I had this wonderful idea that I might be able to "cheat" maybe once a month and actually made plans for certain gluten foods I missed.

I never followed thru on those cheats tho, cause an accidental glutening made me so sick... I've never intentially cheated since!!

No sickness when cheating doesn't mean damage isn't being done!

Mari Contributor
Mari
Posted

It may be that you need some positive feedback to counteract the negative aspect of such a restrictive lifestyle. Ask your Dr. to set up tests to check your antibody levels at regular intervals so you can follow your success with the diet. There are several other Celiac/gluten forums with people who will support and sympathasize with you and you will find many others who hate the limitations on diet and lifestyle. You may not realise it now but your inner self really doesn't want to develop refractory sprue, osteoporosis, gluten ataxia, neurological problems.

mushroom Proficient
mushroom
Posted

While eating gluten free is a pain in the butt, especially when you don't get overwhelming relief from it, you still must kick gluten's butt to protect yourself from the rest of the harm that celiac disease does. It is not to be messed with :ph34r:

Salax Contributor
Salax
Posted

I have actually become that person. At first I would get horrible CC or gluten reactions during the first 5-6 months of being gluten-free. Now still gluten-free, I have become asymptomatic/no reactions, etc. I ate a meal that was suposed to be gluten-free and then after eating it I found out it wasn't..I had no reaction. I started to doubt the diagnosis.

The more research you do, you will find this is mostly happening in children, which is were the.."cured/remission" theory comes in. You can't eat gluten safely..because even though there isn't a reaction now..there will be one day if you continue to eat it. Just like a tiny bit of arsenic won't hurt you today or the next, but over time it's a toxic build up in your body.

Please be careful with your body. B)

Emilushka Contributor
Emilushka
Posted

I agree completely with what others have said already. I just wanted to add that you should remember that cheating increases not only temporary damage to your gut but also your potential risk for cancers - lymphoma isn't a joking matter and continued activation of your immune system and damage to your gut does predispose you more and more to getting it. All of the current research shows that if you keep being reactive to gluten (either you have really bad Celiac or you eat gluten) you'll have increased risk.

Please take this seriously. It's your body and your choice, as always. But please consider what you're doing to yourself when you eat gluten.

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India Contributor
India
Posted

I have a postcard with the following quote, which I remind myself of every so often: 'Look after your body... if you don't, where will you live'?

Keep well x

dilettantesteph Collaborator
dilettantesteph
Posted

I heard Dr. Fasano give a talk in which he put up a picture of an iceberg. He said that the symptomatic celiacs were like the top of the iceberg, and the asymptomatic celiacs were like the part of the iceberg which was underwater. Most of them don't get diagnosed since they are asymptomatic, but according to him are in the majority. He also said how sad that is because often the don't know that they have it until they get life threatening symptoms.

You are lucky not to have symptoms. I get bad symptoms from every little bit of cross contamination. Enjoy it.

shopgirl Contributor
shopgirl
Posted

I heard Dr. Fasano give a talk in which he put up a picture of an iceberg. He said that the symptomatic celiacs were like the top of the iceberg, and the asymptomatic celiacs were like the part of the iceberg which was underwater. Most of them don't get diagnosed since they are asymptomatic, but according to him are in the majority. He also said how sad that is because often the don't know that they have it until they get life threatening symptoms.

You are lucky not to have symptoms. I get bad symptoms from every little bit of cross contamination. Enjoy it.

My gastroenterologist actually drew me that exact picture when she was diagnosing me. She put in a third category in the middle of people where the water is just lapping against the iceberg, causing minor, manageable symptoms

Takala Enthusiast
Takala
Posted

Don't get too cocky.

The longer you stay off, the more likely you're going to notice what it feels like.

I've gotten really sick a few times from cross contamination where I never did find out for sure exactly what it was, other than I had eaten something out of the ordinary that day, that had the possibility. One of the things that really aggravates me to no end is to eat something where the new container is marked "gluten free," and it's a very good chance that it was the item that got me. I have twice reacted to seasoned "gluten free" snack chips that were purchased as a special treat. Lately I am suspicious of 2 other items, I'm waiting for days where it doesn't matter if I've got to function, and I'll try it one more time... 1 more reaction and I'll write it up as a warning. :angry: But I need to try them on different days.

Other times (not often, but under extraordinary circumstances) I risked getting cross contaminated and .... nothing.

There is so much other non gluten food that's good I'm not tempted to cheat. I had so many other things go wrong on a regular diet it's just not worth it, I'm self diagnosed, btw, off of tests others misinterpreted and an elimination diet.

Not worth the arthritis flares, neuropathy, kidney problems, heartburn, gallbladder symptoms of not being able to eat fats, bad obgyn problems, bone loss, dizziness, lack of coordination, visual problems.... the list goes on.

ElseB Contributor
ElseB
Posted

I had absolutely NO symptoms before diagnosis, and very few now. I only have symptoms if I eat food with gluten (as opposed to CC). I never cheat - the glutening happens when I'm told something is gluten-free but it isn't. I'm quite sure I've been glutened more often than I realize. I find this really scary. I actually wish I was one of those people that immediately started vomiting or got bad diarrhea. Then I'd know for sure.

moats1234 Newbie
moats1234
Posted
  • Author

Thanks everyone for your input!

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