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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.

People Not Taking You Seriously
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53 posts in this topic

I just went gluten-free for 2 weeks now and I've been doing really good since. My dad seems to be more supportive than my mom and more than your aunt for sure lol. I showed them how my hair doesn't fall out anymore since I went gluten-free and they seemed to be impressed with the results so they support me a lot. We're going to get some gluten-free stuffs for the first time tomorrow, gotta go grabs those Larabars everybody's been talking about haha

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How do you deal with family members and friends who don't take you seriously?

I discovered I have celiac disease and went gluten free 6 months ago. The problem is I've been living abroad for several years so my family has not witnessed my symptoms. All these years I hid from them that I suffered from fibromyalgia and chronic fatigue as well as constant GI symptoms and mental health issues, etc...

And so I'm visiting them this summer and they seem to think going gluten free has only been a diet choice, nothing dangerous. I tried telling them about the symptoms I was getting. Also, my mother has suffered the same symptoms all her life and suffers from cerebellar ataxia and has had difficulty walking for a few years as a result of gluten. I tried explaining this to them and that if I carried on eating gluten, I'd end up like this too. But it's like their face goes blank and they stop listening at this point.

So I feel like I constantly have to defend myself. They especially don't understand why I'm being careful with cross contamination and get annoyed each time I say I can't eat something.

For example, I was making gluten free pasta at my aunt's house the other day and she wanted me to use her colander. I said I'd rather not as they use it for wheat pasta all the time. But she was arguing that it's fine and that it's washed very well. I still said no, but she wouldn't let go.

Or another example of annoying conversations we have is:

Aunt: "can you eat doughnuts?"

Me: "No, unless they are gluten free"

Aunt: "I have some doughnuts in the fridge, can you eat those?"

Me: "Most likely not as doughnuts are generally made from wheat flour unless you took them in the gluten free section, but no one buys baked goods in the gluten free section unless they're looking for gluten free specifically"

Aunt: "You never know, maybe I grabbed gluten free doughnuts without realising, let's have a look"

- So Aunt gets up, walks to the fridge and brings me the doughnuts -

Me: "No seriously, they will be made of wheat. You don't go to gluten free bakeries or shop in the gluten free section unless you are gluten free. It's not something you just stumble on accidently. There are not enough gluten free products on the market for that to happen, unfortunately."

Aunt: "You don't know that. You don't know until you read the ingredients."

- Aunt hands me the doughnuts -

Aunt: "Go on, check the ingredients"

Me: "Fine"

Me: "First ingredient - wheat flour"

Aunt: "ah"

Aunt: "But I have biscuits too, can you eat those?"

Me: "No, biscuits are made of gluten too"

Aunt: "But maybe these are made with gluten free flour"

Me: "No, as I said, baked goods on the market are very rarely gluten free"

Aunt: "Why don't you just look at the ingredients before dismissing them?"

Me: "Because I know they contain gluten! These things are made with wheat flour!"

- Aunt gets up and gets the biscuits and makes me read the ingredients -

Me: "Made with WHEAT FLOUR"

Aunt: "Ah, well what about these other biscuits?"

Me: "As I said, baked goods are generally a no..."

*Sighs*

And so on.... And it gets tiring for me... and them...

And the problem is, they raise the gluten issue in every conversation. And when I respond they always seem tired and bored of me talking about gluten. Well then why don't they just let me eat what I want and stop questing and interfering. :rolleyes:

Is anyone in the same situation? How do you deal with that? :rolleyes:

(rant over)

That is great. And Yes, others do not seem to understand. Loved this, thank you

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Well, it is a relief to know that I am not the only one dealing with this. I think a person really has to walk in our shoes to really realize. I went to a family reunion this past summer and as I watched my family eat their pastas and bread I was thinking 'this stuff is killing them.' I have tried a couple times to explain to people and they just do not get it. We are told all our life that eating bread is healthy so when someone tells you something different you have to be out of your mind, right? You have to do what is best for you and if they don't get it, it is unfortunate for them. I would though, some way some how get your mom in for testing. She could put years of ataxia issues behind her, that's been one of my biggest issues, newly diagnosed and contining to improve!

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      I agree. As an adult its a little easier to withstand the rolling of eyes and exaggerated sighs from people who think you are over reacting and being too fussy.  My youngest has anaphylaxis to fish and seafood and people are incredibly understanding and careful - but it seems celiacs has become a "fad" due to gluten intolerant people removing credibility from true celiacs.  Adults can argue but kids are vulnerable. Socially its really isolating for them.    I totally relate to the waiting on endoscopy. For my very sick 12 year old the 8-9 weeks we waited for sheer hell and I felt I was feeding him rat poison. Now my 17 year old is waiting on his, booked for later this week.  Its a total nightmare waiting knowing you can start the healing if only you could stop feeding them gluten.  But I figure for future reference, having a solid diagnosis via biopsy is important. Good luck to you and your son.
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