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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.

Friends Who Don't Get It
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Hi! I'm new to the forum. It seems odd to come to strangers for such personal problems, but aside from the love and support form my husband, I'm not getting much feed back. So here I am! :)

 

I've been gluten free for about five months now, aside from multiple accidental glutenings. My husband (not gluten free) and I have ironed out the kinks in our own kitchen, and I finally feel safe when I cook and eat in my own home. The problem arises when my dear friends want to cook or bake for me. My one friend is studying to be a nutritionist, so she feels pretty confident in her philosophies about gluten free eating and other food intolerance issues. And my other friend claims to be gluten sensitive herself (hasn't been tested), however she frequently indulges in foods containing gluten. Whenever I try to explain my situation and how severe my sensitivity is, I feel shot down by them because of their pre-existing notions about gluten sensitivity. Even one crumb can send me into a tailspin of symptoms for days on end! 

 

I have been glutened twice by my sweet nutritionist friend who has gone out of her way to prepare gluten free foods for me. Once was because she was eating gluteney brownies with one hand while preparing my food. And another time was because she used uncertified quick oats in cookies. She said she checked the label and wheat wasn't listed, but that doesn't rule out cross contamination. And my body, as we speak, is arguing her point to the contrary!

 

Both friends believe that the terms Celiac and Non-Celiac refer to the severity of symptoms. In their mind, only Celiacs experience such severe symptoms. 

 

I have a degree in English/Lit, so I'm a person who has learned to research extensively (and secretly enjoy it). I've read hundreds of articles and books on the subject of Celiac and Non-Celiac Gluten Sensitivity. How can I explain these issues to them without alienating them or rejecting their offers of kindness? I love my friends so dearly, and as an introvert with only a few close friends, I'd hate to lose them over something so trivial.

 

Because I don't have Celiac disease, I don't have to worry about the increased risk of intestinal damage, cancer, etc. when I accidentally eat gluten, but even still. Is it worth the ten days of misery not to hurt someone's feelings?

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You sound like you might have Celiac disease. And it sounds like you were never tested for celiac, so you could have it. Would explain your severe reactions. Maybe you should just tell them you have Celiac and you have been advised to not eat food prepared by others?

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It's tough, but if you know that they can't prepare safe food, I would stick to providing your own food. Either that, or stand in their kitchen and supervise them while they make it.

 

Just explain to them that you get so sick from small amounts that you just can't take the chance.

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Also, due to the small amount of information that is actually available on NCGS, we don't really know what long term health ramifications there are from NCGS people eating small amounts of gluten. 

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They sound like good friends. I'll bet if they could just read your post above that would get you 90% of the way there.  

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Also, due to the small amount of information that is actually available on NCGS, we don't really know what long term health ramifications there are from NCGS people eating small amounts of gluten. 

 

This is exactly what I was going to point out. No one knows what your increased health risks are if you have NCGS so it is important to treat it as seriously as celiac.

 

I tell my well meaning friends that even though they're well meaning and thoughtful, I simply do not, ever, under any circumstances, no matter what, PERIOD, eat food that someone else has prepared for me in their own kitchen. It sounds like you need to put your foot down with a rule like this. If they don't understand that things like oats aren't a safe food, their baking pans aren't safe, baking gluten-free foods while eating brownies isn't safe then they're endangering your health and frankly if someone who is a nutritionist is doing this they could be endangering the health of many others through their counseling. Put your foot down and stop ever putting food in your mouth from them if you want to be well. Frankly, if that offends them so greatly the refuse to be friends with you any longer then what kinds of friends are/were they?

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Thank you for the great responses!

And yes, they truly are good friends.

Also thank you for pointing out how young the research is on NCGS. I often forget that there is still a lot we don't know about it, which is a hard truth to accept when you don't feel well and are so desperate for answers.

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I just started reading Gluten Freedom, a book by Alessio Fasang, MD.  The book has been available since the end of April, 2014.  It has excellent information about celiac and NCGS.  Might be a good resource for you, and to share with your friends.  Perhaps if they understand the science behind the illnesses they might understand your needs better.

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I'm newly diagnosed, also.

 

What I've told friends is this:  For right now, until I have everything under control and feel comfortable, I'm just going to have to stick to eating only foods I prepare for myself.  I'd love to come to their house and have dinner, and my husband would be happy to eat what they prepare .... rather than have them go to a big fuss and worry about me getting sick, I will just bring my own food .... and we can have the joy of spending time together while not worrying.

 

Good friends have said "Sounds like a great idea!"

Not-so-good friends have said "You're being ridiculous."

My response to the not-so-good friends is along the lines of "I'd rather be ridiculous than be in and ambulance, again, and in the cardiac unit of the hospital for three days. So, I'll just be ridiculous, and we'll pass on the dinner invite for now."

 

At my age, I can appear ridiculous and don't really care what they think.  I want to be alive and enjoy all these grandkids !!!

 

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Thanks, Cathy!

I think I'm going to have to start saying that to people too.

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I'm newly diagnosed, also.

 

What I've told friends is this:  For right now, until I have everything under control and feel comfortable, I'm just going to have to stick to eating only foods I prepare for myself.  I'd love to come to their house and have dinner, and my husband would be happy to eat what they prepare .... rather than have them go to a big fuss and worry about me getting sick, I will just bring my own food .... and we can have the joy of spending time together while not worrying.

 

Good friends have said "Sounds like a great idea!"

Not-so-good friends have said "You're being ridiculous."

My response to the not-so-good friends is along the lines of "I'd rather be ridiculous than be in and ambulance, again, and in the cardiac unit of the hospital for three days. So, I'll just be ridiculous, and we'll pass on the dinner invite for now."

 

At my age, I can appear ridiculous and don't really care what they think.  I want to be alive and enjoy all these grandkids !!!

 

I love it Kathy! Great job sticking up for yourself!

 

I'm not quite as spunky as you, but I'm making progress.

 

A friend is hosting a bridal shower for her daughter and I mentioned that I would be coming. She said, "We'll have wheat free stuff there." I said, "Thanks, but I'll provide my own food, don't worry about me!" My friend said, "Oh it's safer to bring your own, isn't it? I can understand that you'd rather not risk it."  :) 

So I called her later and found out what the menu was so that I could bring something similar. 

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I totally agree with the comment about not knowing what damage NCGI does to the body. They really don't know ... yet. But it sounds as if you take your avoidance of gluten seriously so no need to harp on that.

I feel your pain when it comes to the friends. I have a close friend who also can't eat gluten, but it has actually caused some conflict in our friendship rather than creating an additional bond. He is willing to take a lot more risks when it comes to getting glutened than I am, so when we are out, he expects to be able to go to a restaurant and judges me for not wanting to, while I think he's crazy for not taking it all more seriously. He also gets peeved when I tell him why foods he is still eating are not actually gluten free. 

For the friends, I would explain parts per million, how even a wooden cutting board or a plastic spatula can be a source of cross contamination, or flour dust in the air. I don't think you have to teach them everything, just enough to get them to stop trying so hard and to realize that it really is outside of their control, even with the right ingredients, unless they were willing to replace half of their kitchen utensils and appliances.

But it sounds as if they really do want to try to make your life easier. How about inviting them over to your house once a month to do some gluten-free cooking in a safe kitchen - making it something you can do together? If you also do the grocery shopping beforehand together, you'll have some additional opportunities to talk about hidden sources of gluten. 

If you are going to eat at their houses, can you bring along utensils that are gluten free, like a cutting board, and offer to help prepare something so that you can be certain of what went into it, or set aside a portion for yourself that you know is safe before any gluten ingredients are added?

Also, tell them about how the reaction to gluten can actually become more pronounced and more painful after going gluten-free so that they understand why you aren't willing to take even a calculated risk.

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
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