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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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NotMollyRingwald

Tips On Helping Family/friends Understand Cc

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'Morning,

 

Apologies if this is a duplicate post...I've looked around a bit and didn't really find what I was looking for...but that could be operator errror (I'm capt of the space cadet squad today).

 

I was wondering if you gluten free veterans have some words of wisdom or maybe have favorite websites/resources for helping family and friends understand cross contamination.  At this moment, I'm the only one in my family gluten free, and most of my family has never had to worry about something as small as a random bread crumb.  Especially my husband.  I'm going to be an absolute nazi about "safe" cookware, kitchen space, etc...but I can't seem to find the right away to explain how careful Celiacs/NCGSs need to be and am a little worried about him accidentally using my gluten-free butter/jam/etc and not realizing what he's done.

 

Any advice/experience/resource information is appreciated!

 

Thanks!

 

Amy

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'Morning,

 

Apologies if this is a duplicate post...I've looked around a bit and didn't really find what I was looking for...but that could be operator errror (I'm capt of the space cadet squad today).

 

I was wondering if you gluten free veterans have some words of wisdom or maybe have favorite websites/resources for helping family and friends understand cross contamination.  At this moment, I'm the only one in my family gluten free, and most of my family has never had to worry about something as small as a random bread crumb.  Especially my husband.  I'm going to be an absolute nazi about "safe" cookware, kitchen space, etc...but I can't seem to find the right away to explain how careful Celiacs/NCGSs need to be and am a little worried about him accidentally using my gluten-free butter/jam/etc and not realizing what he's done.

 

Any advice/experience/resource information is appreciated!

 

Thanks!

 

Amy

Amy, excellent post!  I have the same concerns.  We're going to visit my family for a month and I really need to get them on board!  

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In your home, there will be a big re-learning of habits.  So make everything as easy as possible.  2 pb jars -the gluten-free one with a big piece of red tape on the top.  Stuff like that. 

 

If your husband or family doesn't understand how serious it is, show them some info from a "real" medical Celiac center like this:

 

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

 

If that doesn't work - well, I don't have a lot of patience for that type of selfish or mean behavior.  I would not be around people like that - related or not.

 

When I go to someone else's house, I don't expect them to learn the habits it has taken months for my family to learn.  Keep your food and cooking utensils separate and well labelled.  If they still use your pb or drain gluten pasta in your colander, it may be time to move on.  Go back home or get a hotel with a microwave and fridge for the rest of the visit. 

 

I have posted a lot about travelling and how I set up my kitchen if that is the stuff you are looking for?

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Honestly, at my house, I just went gluten-free except for bottled beer and an occasional piece of candy or single serving bag of snacks for my son. Anything crumbly - no way. You sit in the patio and eat it - I don't care if its 110. Why? I knew that with my family it wouldn't work. Tried it a little, it was a disaster.

As far as communicating cc in the kitchen, when visiting my parents....I explain it like salmonella that can't be cooked away. You can't see salmonella, smell it....it must be washed off with soap and hot water. They get that.

I take my own cutting board and colander when I visit, and wooden spoons. I wipe down the counters with soap, and suspiciously eyeball every piece of flatware, etc. They let me serve myself first at meals....they are bad about touching food after touching gluten, but that's normal.

I do not let my parents bring gluten in the house while visiting. My Dad eats bread on the patio, if he wants bread.

It's one thing to watch a video or read about it. It's another to learn it. Don't be afraid to toss the gluten out. They'll live over it.

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I made the house gluten-free too. I'm a celiac and 2 out of 3 of my kids have a gluten intolerance of some sort. It just seemed easier, and more fair to all my kids, if we went entirely gluten-free.

 

I did start off with some seperate and labelled foods like butter and jam and then over 3-5 months I switched everything to gluten-free. I don't think my husband took it all seriously though until I became sick from a supposedly gluten-free beer (Daura (sp?) which is gluten-free to 3ppm but I didn't realize it was made with barley). I had been getting better and my stomach flattened out and then that beer had my gut poofed out within hours with a migraine that lasted for a few days... It was easier to see after I had been well for a while.

 

Good luck.  :)

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One comparison that sometimes gets made round here is to ask if they mind if you just put a little rat poison in their food?

I am in a mixed house, and we have segregated counter space, shelves, sections in fridge and freezer, dishclothes etc. We have doubles of jars. I have a whole set of utensils in purple. Toaster, breadbin, purple. I use kitchen roll to clean up, wipe the table etc, and foil when grilling, roasting.

When I started, I got cc 5 times in 6 weeks. I gave an ultimatum that if everyone didn't get it sorted, the whole house would have to go gluten-free. No problems since.

You can do it!!!

I have had so many improvements in a few months. I am so excited to see how you get on :)

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My husband made stickers with our kids pics on saying gluten free they get stuck on anything the kids use, it works well.

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One comparison that sometimes gets made round here is to ask if they mind if you just put a little rat poison in their food?

I am in a mixed house, and we have segregated counter space, shelves, sections in fridge and freezer, dishclothes etc. We have doubles of jars. I have a whole set of utensils in purple. Toaster, breadbin, purple. I use kitchen roll to clean up, wipe the table etc, and foil when grilling, roasting.

When I started, I got cc 5 times in 6 weeks. I gave an ultimatum that if everyone didn't get it sorted, the whole house would have to go gluten-free. No problems since.

You can do it!!!

I have had so many improvements in a few months. I am so excited to see how you get on :)

Love the idea of having different colored utensils! I think that will help keep hubby mindful of what he's doing...bright pink oughta do the trick. :) Hopefully it won't come to it, but I'll keep the ultimatum idea in mind, too. ;)

I saw some dishwasher, microwave, & oven safe labels online (cant remember the brand...); anyone used these? Are they worth the money?

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My husband made stickers with our kids pics on saying gluten free they get stuck on anything the kids use, it works well.

Cute idea! That might help my son (only 3) learn what he can touch and what he needs to keep his fingers off/out of.

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Mabels labels are dishwasher safe ( don't tell me off moderators but if you go to their website and go to cpc preschool fundraiser my daughters preschool - who have been awesome in relation to keeping her safe from gluten exposure - get a share!)

I know the mabels labels last my nephew has them for daycare, and they have held up, I know people that get the to label everything, they are even so sturdy you can stick them on clothes, and wash and dry them.

My husband saw the same kind of thing at staples. We are going to get some for things like cereal containers, glass spice jars etc.

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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