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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Symptoms But Eating gluten-free
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veryami1    2

Hi,

 

So I've been doing really with my Celiac, I've been gluten free for over a month and starting to feel better already! However, today I have cramps, slightly looser stools, and the lightheadedness I was getting before I went gluten-free.  I'm guessing I must have had something accidentally. I can't think of anything, except I did eat out at Flame Broiler yesterday. Asked for no sauce, just plain chicken and rice.  Maybe they weren't careful enough or something.  I don't know. Anyways, my question is, is it possible I've been gluten-free and totally safe, and maybe I just haven't healed yet?  Is it correct to assume that even if I'm totally careful, I'll just have bad days, until I'm healed?  Or do you guys think i was glutened?

 

Thoughts?

 

Thanks in advance!

 

~Ami

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Sock    1

Yes; it's likely that you haven't completely healed. THAT said, a month into the diet and it's just as likely that you're still getting glutened by products you think are safe. It took me a few months to figure out that 'reading the label' isn't enough (depending on the company). I will say in this case you were almost certainly glutened when you ate out. Eating out = Russian roulette.

 

Unless it's a resteraunt that caters to celiacs (and even then!) you're gonna get glutened sooner or later. You may be incredibly lucky and visit the same resteraunt five times symptom free (and being symptom free doesn't necessarily mean that the food was safe!), then get nailed on the sixth.

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nvsmom    332

I agree. It could be either. One month is is still very early (although it might feel like forever ;) ) and many people find symptoms reappear  in the first 3 months or so, some need 6 or 12 months before symptoms stop cropping up.... Or you might have been glutened.  :(

 

Either way, I hope you feel better soon.

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veryami1    2

So my symptoms continue to change.  Last night I had a terribly runny nose - I thought I had a cold all of a sudden. Really sore throat too. This morning the runny nose has abated but I have tiny itchy red bumps around my neck.  I am diagnosed Celiac AND wheat allergy.  Do you think it sounds like I was glutened?

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GottaSki    459

So my symptoms continue to change.  Last night I had a terribly runny nose - I thought I had a cold all of a sudden. Really sore throat too. This morning the runny nose has abated but I have tiny itchy red bumps around my neck.  I am diagnosed Celiac AND wheat allergy.  Do you think it sounds like I was glutened?

 

With the allergy factored in...and allergic symptoms, it certainly sounds like you may have been exposed to gluten.  Are you allergic to any other items?

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cyclinglady    723

Flame Broiler is NOT gluten free!    The marinade they use has soy sauce it.  Flame Broiler does not accommodate gluten free eaters (maybe for those crazy dieters who think gluten-free is healthy).  Their marinades contain soy sauce.  It stays on the grille, even if you ordered fresh chicken, I have never seen a second grille……not to mention staff who do not get it!  

 

The only fast food I occasionally eat is at IN-N-Out and only at locations that have a second clean grille and those that I can see them grilling the burger.  Takes longer to heat up the back grille, but it's worth it.  Fries?  Remember there are kids working there and after hours they made try to make some weird concoction and thoughtlessly put a bun in the fryer oil.  

 

I would recommend NOT eating out for many more months!  It just sets you back getting glutened and that's so discouraging!

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veryami1    2

Thanks everyone! I'm sure it was the Flame Broiler!  However, I realized the new potpouri we bought for the house was making my nose run like crazy, so that was to blame for the nose reaction.   Is anyone else like me, crazy sensitive to EVERYTHING? It's a wonder I'm alive at all!

 

I guess no more Flame Broiler. I thought I was being smart and altering the menu item, but that's not smart at all :mellow:  I think it's better for me to eat at home more for the first few months.

 

What do you guys do when you are going to be out for a long time? For instance, today I work until 12:30pm and then I have to dash to the doctor at 1:30.  Easier to pack a lunch and eat on the road? I am not sure what "safe" restaurants there are between work and the doctor and I can't make it home. I think I need "lunch on the road" ideas - stuff that will last awhile in my purse before I devour it ;)

 

~Ami

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cyclinglady    723

Go Picnic boxes can be found at Target. Toss in a tangerine, apple or banana. I drag a mini cooler around in my car. Am on the hunt for a "pretty and fashionable" cooler to take into places (i.e restaurants with friends). Lara bars are kept in the glovebox. My husband keeps both the Lara bars and Go Picnics in his car and in his luggage when traveling. His fast food is a grocery store for veggies, fruit and bags of chips.

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Harpgirl    10

Thanks everyone! I'm sure it was the Flame Broiler!  However, I realized the new potpouri we bought for the house was making my nose run like crazy, so that was to blame for the nose reaction.   Is anyone else like me, crazy sensitive to EVERYTHING? It's a wonder I'm alive at all!

 

I guess no more Flame Broiler. I thought I was being smart and altering the menu item, but that's not smart at all :mellow:  I think it's better for me to eat at home more for the first few months.

 

What do you guys do when you are going to be out for a long time? For instance, today I work until 12:30pm and then I have to dash to the doctor at 1:30.  Easier to pack a lunch and eat on the road? I am not sure what "safe" restaurants there are between work and the doctor and I can't make it home. I think I need "lunch on the road" ideas - stuff that will last awhile in my purse before I devour it ;)

 

~Ami

 

I make sure I have plenty of gluten free bars with me. Also, having a variety of bars helps because eating the same bars all the time gets old very quickly. Kind bars, Oskiri (sp?), Enjoy Life, and several others. If I'm going to be out for long enough to miss a meal at home and I'm not sure about the restaurants, I'll bring a can of soup with me. There are several varieties of Progresso that are gluten-free and Dinty Moore stew is also gluten-free. Sometimes, depending on the circumstances, I just go ahead and eat the soup cold.

 

Lately, I've been having good luck with Wendy's chili. But I still talk to the manager before I order it, just to make sure they've been careful about cross contamination. :)

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veryami1    2

I had another issue this week, thought I was eating gluten-free 100% and again, diarrhea hit.  How am I to know if I got CC, or if it's just healing? When am I going to stop having the weekly bouts of the D?

 

Does anyone understand the actual biology of being glutened? Is it just the antibodies coming on full storm once the gluten hits your intestines? What causes the diarrhea, if I accidentally ate the wrong thing, if I've already started healing?

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I am extremely sensitive to gluten. I have had to just except that i may not ever be able to eat out again, which being a 20 year old guy who was addicted to fast food, and loved eating at resturaunts. this is very hard, i started the paleo diet about a month ago, so i have been eating all of my meat completely plain, and on monday i went to eat with my parents, and i got glutened because of the cutting board they used when cutting my meat. Not saying that you have to, but i have given up all processed foods, and a never get glutened from food i cook by myself in my gluten-free kitchen area. Just realize that cross-contamination is very hard to avoid for the sensitive celiacs, and cooks at restuaraunts, will most likely not take extreme percautions to avoid this. I get glutened sometimes when im sure that i havent eaten anything that wasnt natural, but then i realize that it was probably from cross contamination. Like one time, i was with a group of friends who were drinking beer, and one of them took a drink out of my personal drink (which was gluten free), and i ended up getting glutened from that. Im sorry to hear your story, because i dont like seeing my fellow celiacs have to live through hell.

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Does anyone understand the actual biology of being glutened? Is it just the antibodies coming on full storm once the gluten hits your intestines? What causes the diarrhea, if I accidentally ate the wrong thing, if I've already started healing?

 

I don't think that it is just antibodies.  NCGI folks have reactions too - and they don't make antibodies.  I think it's more complicated than that.  It is the entire immune system reacting and basically freaking out because it sees the gluten as a foreign invader.  And the digestive tract is one of the ways the body has for getting rid of foreign invaders.  Diarrhea makes the elimination process go even faster.  I don't think that it's all that different of a reaction to when you get hit by a flu bug.  The body wants it out.  So it gets it out the fastest way it knows how.

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CaliSparrow    21

Is anyone else like me, crazy sensitive to EVERYTHING? It's a wonder I'm alive at all!

YES! In another post, I mentioned that I stopped eating out. I've learned how to pack easy food items. For the first time this week, I was driving and thought, "Now this is true emancipation. I don't have to think of stopping to eat; don't have to change my schedule to go eat. I have more spending money not eating out. Have food, will travel! Completely independent!" It took a while to get there(!) and just to be clear, reserve my right to complain in the future ;)

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