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

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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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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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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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