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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Repeated Accidental Glutening Effects?! How Long Does This Last?!
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Hi all, 

I am new to this forum and am new to celiac as well been gluten free for a year now. In that time i have had a couple of glutenings (2 as a test and one accidental) and recently I realized after gradually feeling crappier and crappier for a month (as in all my muscles flared up, previous injury killing me, irritable, anxious, emotional/depressed) when I realized it was this big container of taco seasoning i bought at Sam's Club (Tone's taco seasoning IS NOT GLUTEN FREE). Totally my fault i didn't look at the label.

 

Anyways, after feeling pretty crappy and one bad hangover I was even sicker. Nauseous every day, felt hungover even though i wasn't, couldn't drink any alcohol (which is very unlike me) and still with the irritability and what not. Just not good and not myself. That continued for about a week and now i am mostly better but still experiencing muscle twitches, spasms, generally very uncomfortable and feel like i have to massage my arms, neck, shoulders constantly for relief. 

 

I really screwed myself up here... slowly glutening myself at least once a week for 8 weeks. Has anyone done this before? Not just a one time incident but a repeated exposure?

When will i stop feeling so WEIRD?! I am wondering now if this has really flared up the celiac and i am not absorbing my vitamins and that is perhaps whats causing me the muscle issues.

 

ANY thoughts, advice or questions welcome.

 

Thank you :)

 

lmj

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Always read the label on everything you buy. Even if it's something you buy weekly, read the label because they often change ingredients. Buying two of something? Read the label on both in case one is newer and made with a diiferent recipe.

 

An example: I buy Blue Bunny all natural vanilla ice cream. I have a severe corn intolerance so I can't eat most ice creams, but this one is made with sugar instead of corn syrup. One day they were out of the big container so I bought a pint instead. The name is the same, but the pint also has guar gum. Now, it isn't that guar gum has gluten although it can be hard on the stomach. But if I didn't read the label first, I wouldn't have known it, and would have wondered where the stomach cramps came from.

 

Now, you could very well have done enough damage to put you back at square one. You say you've been gluten-free for a year but are new to celiac. Were you tested? Did they do vitamin level testing too? Also, alcohol can be rough on the system. When we heal we start to absorb everything we ingest and a lot of us have found that we can't drink nearly as much as we used to.

 

I hope you're feeling better soon. And remember: every label, every time. :)

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Always read the label on everything you buy. Even if it's something you buy weekly, read the label because they often change ingredients. Buying two of something? Read the label on both in case one is newer and made with a diiferent recipe.

 

An example: I buy Blue Bunny all natural vanilla ice cream. I have a severe corn intolerance so I can't eat most ice creams, but this one is made with sugar instead of corn syrup. One day they were out of the big container so I bought a pint instead. The name is the same, but the pint also has guar gum. Now, it isn't that guar gum has gluten although it can be hard on the stomach. But if I didn't read the label first, I wouldn't have known it, and would have wondered where the stomach cramps came from.

 

Now, you could very well have done enough damage to put you back at square one. You say you've been gluten-free for a year but are new to celiac. Were you tested? Did they do vitamin level testing too? Also, alcohol can be rough on the system. When we heal we start to absorb everything we ingest and a lot of us have found that we can't drink nearly as much as we used to.

 

I hope you're feeling better soon. And remember: every label, every time. :)

You are right I usually do check but damn! It must have slipped my mind.

 

The confusing part is my diagnosis i suppose. My doctor is strange... but anyways I got a limited blood test for celiac last June and it was negative but she told me to go gluten-free anyways.because I was sick with diarrhea for 2 months bad muscle cramps pain, knots, etc... and weakness.   I have heard there can be false negatives? so I did go gluten-free and saw improvement.In December I requested a genetic test. and it came back positive with low risk. I didn't realize after that that she added "celiac sprue" as an ongoing health condition in my file until I saw a dietitian a couple weeks ago and she asked me when i was diagnosed celiac. Confusing right?

 

When I spoke with my doctor the other day it was still confusing (she doesn't seem to understand my questions I guess- or i don't understand her accent) 

She repeated the gene test results. I asked if I am to assume that means I have celiac and she said yes. I should live my life that way. 

 

So I am. After the little things I notice (ok this is gross) but in my stool once i have eaten either trace amounts or like this one big mistake it looks weird. different and seems like the fat is in the water (god this is gross im sorry) 

 

I feel though in kind of a weird situation because i didn't have a biopsy. Not that I would even consider eating gluten again to get one.

 

This taco incident makes me feel like how i did before i stopped eating it in the first place. the inflammation in my body is out of control. 

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yep, you're going to have to read and reread labels all the time. Sometimes wheat lurks in things you wouldn't expect. Sometimes it will be the Allergy warning that it shares equipment with wheat products.

 

The last thing that glutened me was a walmart brand sugar free drink mix, why that has wheat it in I have no idea. The Kraft Crystal Light doesn't have wheat and is even (on newer packages) labeled gluten-free.

 

While cleaning out my pantry I found similar things. walmart brand SF gelatin  has traces of wheat - namebrand SF Jello does not.

 

walmart refried beans - traces of wheat,  whereas the other can I had that was food lion brand did not.

 

I have to allow more time when I go shopping now and have to be sure to take my reading glasses to be able to read all the fine print.

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I have had that problem of repeated accidental glutenings over a long period.  It takes longer to heal from that but it does happen.  I think that it depends on too many factors to give a time frame.  Just be glad that you figured out the problem.

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I can see where you would forget to check a label on a spice mix since most of them are gluten-free.  Penzey's makes a really good Taco Seasoning and they are gluten-free!!  You can order online if you don't have one near you and if you sign up for their mailing list, you get a coupon with each catalog for a free spice of some kind...and they have a lot of great recipes in their catalogs!!!

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I really screwed myself up here... slowly glutening myself at least once a week for 8 weeks. Has anyone done this before? Not just a one time incident but a repeated exposure?

 

I did that after being gluten-free for a few months.  Some fries I bought for my kids were not gluten-free. I don't know if I got the brands mixed up or they changed the label, but I was eating 2-5 of them a couple of times a week for a couple of months.  I could not for the life of me figure out why I was steadily feeling worse.  LOL

 

I haven't been glutened since then though, at least that I know of.

 

Hope you feel well soon.

 

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Not much to add other than what's already been said other than sympathy - got 'got' two weeks ago today and still feeling the need to massage my cramping shoulder/neck muscles! Horrible, isn't it? Someone in a thread I just posted about muscle pain suggested alternating warmth and coldness on the area and that seems to be working. I did a little bit of yoga too and that helped. Hope you feel better soon. 

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Could you post the link to the topic you mentioned? Would love to read more on that.

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I had accidentally glutened myself last saturday. I had gotten a hot plain tea from Starbucks and realized too late that not all their tazo teas are gluten free and I got one that wasnt. It took almost a week to start feeling better. I learned never to assume. Lol.

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elless, glad you brought this topic up again as two weeks down the line from glutening caused by half a very small bar of chocolate and some crumbs, and the terribly bad idea of taking several NSAIDS to help with a painful joint  probably causing damage in itself, I feel I am back to square one with discomfort.  Then today I happened to meet my nutritionalist who pointed out that here in the UK a lot of envelopes have gluten in the glue and had I been doing any mailshots.  Now I look back at months of occasional envelope licking and am wondering if this has worsened the pain I am in, cumulative effect as it were.  I will try very hard now to just eat clean and hope that I can get back to feeling well again.  These posts haver really made me think.

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