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


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12 replies to this topic

#1 moats1234

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Posted 21 October 2010 - 06:03 PM

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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#2 ravenwoodglass

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Posted 22 October 2010 - 02:02 AM

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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 luvs2eat

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Posted 22 October 2010 - 04:59 AM

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!
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#4 Mari

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Posted 22 October 2010 - 12:14 PM

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.
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DQ6/DQ8
HLA-DQ B allele 1 *0602: HLA-DQ B allele 2 *0302
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#5 mushroom

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Posted 22 October 2010 - 01:03 PM

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:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
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Citric acid free June 2009
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#6 Salax

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Posted 22 October 2010 - 02:39 PM

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)
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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
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(")_(") Eat your vegetables!


#7 Emilushka

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Posted 22 October 2010 - 03:15 PM

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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#8 India

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Posted 23 October 2010 - 03:36 AM

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
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Self diagnosed but confirmed by biopsy
Gluten free Jan 2010
MSG free Jan 2010
Corn free Apr 2010
Soy free Jun 2010
Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

#9 dilettantesteph

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Posted 23 October 2010 - 06:17 AM

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.
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#10 shopgirl

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Posted 23 October 2010 - 09:16 AM

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 sometimes not even realizing that some of the things they're feeling are symptoms.

Original poster, you may find after you've been on the diet long enough that you had symptoms you never even realized you had. My gastro told me it's possible I've felt sick for years without truly realizing it because, to me, it's normal to feel this way. Just a thought.
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"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

#11 Takala

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Posted 25 October 2010 - 03:11 PM

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.
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#12 ElseB

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Posted 25 October 2010 - 03:46 PM

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.
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#13 moats1234

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Posted 26 October 2010 - 05:34 AM

Thanks everyone for your input!
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