20 Emails in 4 Days: Part II

questions about celiac disease

Dude note: Five emails per day for four days. Here’s part 2.

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Dude…I am freaking out. I was diagnosed with celiac 3 years ago. My 14 yr old daughter is traveling to Atlanta from Washington state for a school competition. I am going to support her but so worried about finding safe food. Any suggestions? I am tempted to not go. You’re the best.

Go. Go. Go. Go. Just had a flashback to my teen years:

Ok…I’m back. Where was I? Oh yeah…GO. Never, and I mean never, stop celiac from doing what you want to do or where you want to go (within reason of course). When there is a will, there is indeed a way. And here are 33 Atlanta GF options for you. Best of luck to your daughter!!

Hey GD…Much appreciation for the work that you continue to do for the celiac community. You featured me on Faces of Celiac awhile back (Ben, diagnosed in 2012…my then-girlfriend, now-wife major support…ya da ya da).

Anyways, I have been a major consumer of RX Bars since they came out. Always loved that they were NOT processed with wheat – just dairy, soy, whatever. Now, however, since Walmart bought them, RX Bars are processed in a facility with wheat – and yet, they still read “Gluten Free” on the giant label on back of the package. This development is extremely disappointing as this is one my few go-to snacks that is good, portable, and not full of added sugar. I DM’d the company on Twitter, haven’t heard back yet.

RXBar was bought by Kellogg in November of 2017. I cannot speak directly to this situation, but I do know what when a small company that makes safe gluten-free products gets taken over by a large conglomerate, it does not bode will for the celiac community. Example A: Udi’s.

Being processed in a facility with wheat does not necessarily mean they are not safe anymore. And that label is voluntary. That being said, I do not eat items that have that label (the whole risk-reward thing). And if they indeed went from a completely safe environment to one that is not…that sucks. But when you sell your company for $600 million…(I’ll just leave it at that.)

Dear Gluten Dude…I’d like the perspective of you and your readers on this one. It concerns the issue of flour in the house.

I have been gluten free for most of my life as have my mom and two younger sisters. We were unwell all of the time the few years before going gluten free. Needless to say, avoiding gluten foods worked for all four of us and we get sick every time we are exposed.

Recently, I got married and my husband’s father has celiac disease (diagnosed ~30 years ago). His father obviously never wanted his food problem to be burdensome for the rest of his family of five (including his wife, sons and daughters) so over the years he and his wife cooked with wheat flour, baked regular cakes and glutenous desserts and cooked regular pasta for the rest of them that he can’t have. For me, aside from finding this idea hard to handle, psychologically, it seems dangerous.

People said that I was very lucky since my husband would be aware of what being gluten free involved because his father had to avoid it.

My husband eats gluten every day and loves cooking. He complains that some gluten free cakes we’ve made just don’t turn out and is upset that I will not allow him to keep regular flour or non-gf cake mixes in our home. I don’t want to breathe in airborne flour particles and then wonder why I am sick all the time much less worry about cross-contamination of the cake pans. My mom never kept normal flour or pasta in the house and my father never had a problem with this. Besides, why go to all that effort to bake something your wife can’t eat? He said he’d keep a GF cake mix on hand before baking his own non-GF version for himself, family and friends. I told him that I am ok with having store bought non-gf foods (bread, biscuits, crackers) in the house. He can treat himself to freshly baked breads and cakes any time he’s out. But as far as flour goes, you have got to be kidding me!

A couple of questions:

Is there a way I could better handle this? I’ve never been in a situation like this before. I really don’t want to over burden him with my condition but I think my health comes first. Am I over-reacting? And also how do you celiacs handle the flour situation?

No…I think you handled it perfectly. No…you are not over-reacting. Flour in the house? No way.

We allow gluten in the Dude Ranch. I have my own safe space and it’s never been an issue. But regular flour in the air. Uh-uh. Draw. The. Line.

I need some guidance. I’m in Calgary, Canada and part of a closed FB group called Calgary Celiac. Someone asked if anyone ever ate something that had a “May Contain Wheat” warning on it. Appallingly, a few people said yes. Unfortunately for me, I read this post just before bed – needless to say, my teeth were a’gnashing much of the night. I waited almost 24 hours to write my response: “Those of you eating food with a may contain statement – have you lost your minds? You wouldn’t eat at a restaurant if the wait staff said, “Your entree may contain wheat.”. Or would you? Like it or not, if you are celiac you are an ambassador for this disease. You have to be vigilant and able to educate those without celiac. To keep yourself and others safe. Rant over – for now.” Now people are angry with me, saying they have no need to educate and it is their business if they food with a warning. While I agree with the second part, how do I convince people that we are educators and have to be in this together? I don’t really expect an answer, I’m mostly venting. Ugh, the struggle is real. Thanks Dude, keep up the good fight.

I’ll quote from Jennifer Esposito here: “People need to understand this is a serious disease. And when you ask for gluten-free in a restaurant and you are not gluten-free; the more we have people not being able to decipher if this is an allergy, a fad or a disease, our community is getting sicker and sicker and sicker. I ask you to be responsible about this disease. I am asking that people be responsible and respectful for the people that suffer with this disease. It is not fun. It is not easy. And it is not a fad.”

People can risk it all they want. But seriously…just keep it to yourself. We all have a responsibility to the community.

I started reading your book. Several times you mention that you eat sushi. You even say it’s the “Dude’s favorite”. I am surprised that there isn’t a word of caution with these statements. Some sushi is prepared with malt vinegar – not good right? Why aren’t you recommending sashimi instead (without rice). Just wondering. Thanks!

Mmmmm…sushi. Here’s the deal (and I understand your point.) I cannot be the food police for everyone. Yes…on the very rare occasion, sushi rice is mixed with malt vinegar. I’ve come across it once in all of my glorious sushi days so I did not eat there. And there is a lot of sushi you can’t have: anything with crab meat, anything tempura, anything with eel sauce. I just keep it real simple and order salmon or tuna avocado. That’s it. But it’s not on me to explain everything that is and isn’t safe out there. It’s up to all of us to be our own best advocate and know the right questions to ask.

Ok…Day 2 is in the books!

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11 thoughts on “20 Emails in 4 Days: Part II”

  1. Two additional comments that I hope are helpful??!!

    1) I think I read that 7 out of 10 diagnoses celiacs eat gluten? Like you said, they should keep it to themselves, but I think it’s common. If they want to spend their lives in the bathroom or end up with cancer, totally their choice. I mean, a lot of people still smoke and kids are eating tidepods, so….

    2) The RXBar guy could talk to Trish at Gluten Free Watchdog about getting a bar tested? She’s wonderful and everyone should subscribe to her service.

    Thanks as always GD!

  2. I honestly can’t figure out why people would knowingly eat gluten. I guess their reaction is less severe than mine (I just expanded on what “flu like” is really like for me and it’s far beyond that bland description). If you’re not going to walk up to a gang of thugs and smack them with a white glove, and then take your beating, then why would you do the same thing just to have a bagel? Just like gluten, the worst pain of that will not occur until the next morning. By contrast, a smoker waits decades to get COPD or Emphysema.

  3. FYI to the husband who wants to bake his gluten treats–flour “hangs” in the air for 3 days. I would assume that it then settles indiscriminately on any surface. Talk about risk for the Celiac! What does he love more- wife or gluten? In my family the answer is clear!

    For those that do not understand why some Celiac sufferers eat gluten: Sadly, many celiac sufferers do not choose to educate themselves or do not have educated physicians, etc. to help them learn what Celiac Disease really means. They don’t learn that having one auto-immune disease can lead to a collection of them (especially if you are not taking care of yourself by being vigilant with the GF diet). Ultimately, the lack of vigilance can lead to being very sick and maybe even getting cancer. Others just don’t believe that any of the above can happen to them. The blinders they wear not only blind them to the their own consequences, but the consequences that their ignorance can create for others.

    Gluten Dude, thanks so much for being a catalyst for sharing everyone’s questions, concerns, and rants. The answers you and others put out there educate so many. You are such a positive influence. Thank you!

  4. We were in Atlanta last summer and had no problems finding places to eat. (Family of 4, oldest daughter is Celiac.) Mediterranea Restaurant & Bakery in Atlanta is awesome, though a little off the beaten-path. We ate there twice plus bought pastries for breakfast. https://www.eggharborcafe.com/buckhead had awesome GF pancakes and other options. I don’t remember any places we ate downtown though. Good luck. (And no gluten flour in the house, we have a pretty-much GF house, just beer which she can’t drink anyways, and the verrrry occasional takeout that gets brought home.)

  5. When traveling I do one of 2 things: Rent a room with cooking facilities and/or shop for prepared fruit & vegetable platters at the local grocery store. Why? It is because of the cross-reactors of gluten: YEAST – EGG – DAIRY.
    If I eat at restaurants the end result is: diarrhea.
    If I eat or cook in a kitchen containing gluten crumbs the end result is: diarrhea.
    If I eat any products with the words; made in a factory that also processes wheat, the end result is: diarrhea.
    I detest eating and do so only for survival purposes. Having celiac “sucks” and has literally destroyed my social life.
    First came severe malnutrition f/by HPT & near death as it affected the kidneys & brain. Then f/by major surgery. Celiac disease “sucks”.

  6. ChocolateMoose

    To the lady with the husband who wants to use flour, I love that gluten dude say we shouldn’t let coeliac stop us from doing what we want (besides eating gluten) but I think that should also apply to our family within reason. Could you compromise and allow your husband flour/cake mix if he has a seperate cake tin and vacuums the air afterwards and cleans the surfaces in the kitchen or if he covers the bowl with a tea towel or if he does the initial flour/eggs/butter mixture outside if you have a suitable area? Or is there another space he could use? Do you have friends or family who could let him use their kitchen occasionally? It seems a little harsh to just say no without offering some kind of alternative or compromise when it’s something he loves to do.

  7. Is #1 referring to DECA ICDC? I’m a Celiac from Ontario and I am in the same boat. We have called the hotel and asked for there to be a fridge in the hotel room so I can go to a grocery store and buy things like cheese, cold cuts, bread, etc. I’m also planning to bring a lot of KIND bars and snacks to help me get through the week.

    Hopefully your daughter will be able to go!

  8. In response to the individual on the issue of flour in the house, I agree with Gluten Dude. It’s also pretty sad when you can’t eat what you bake, not to mention the potential damage done breathing in flour dust all the time.

    I’ll have to assume ChocolateMousse (above) is joking when s/he mentions vacuuming the air. There is no such thing as vacuuming the air unless you use a stove fan which would I assume would over time deposit flour all over the interior causing flour particles to descend on to the stove top when cooking other items while it isn’t running. Smart idea… 😛

    The husband sounds incredibly naïve about coeliac disease, not to mention insensitive or just plain ignorant. He got this poor example from his parents. His wife needs to continue to be assertive about her needs. Given the husband’s family history, perhaps if she’s feeling game she could ask him if he or the rest of his family have been tested for coeliac disease.

    From The University of Chicago website:

    When an individual is diagnosed with celiac disease, the entire family learns that they must be tested for the condition, for they are now at risk.

    A simple genetic test can determine if further screening is needed or it can completely rule out the possibility of developing the disease. If the genetic test is positive for celiac disease, the individual should have antibody screening regularly to help determine if and when the disease is active, keeping in mind that they may well remain free of celiac disease for life.

    Undiagnosed celiac patients are at greater risk of osteoporosis, anemia, infertility, type 1 diabetes and other serious illnesses, in addition to suffering ongoing health problems that can compromise quality of life.

    Why do I need to be tested more than once?

    Celiac disease can develop in a person at risk at any time. There are three factors that come together to cause celiac disease to occur—an overresponsive immune system, genetic predisposition, and factors in an individual’s environment.
    We know that people are born with the genes for celiac disease, and that gluten is what turns on the autoimmune response. However, there are factors in an individual’s environment that can affect when celiac disease develops. Some people can eat gluten for 50 years and then develop celiac disease, while others eat gluten for only 9 months before they are diagnosed. Many individuals have silent celiac disease, which means that the absence of symptoms does not indicate they are healthy.

    ^ That last sentence is such a hard one to get across to people. The denial is deafening!

    What is known is that the early diagnosis of celiac disease might be able to prevent the development of other autoimmune disorders and additional complications in many people. Regular antibody testing is the key to early diagnosis.

    I ask because I know a large family where the mother has had coeliac for over 40 years but bakes normal treats for her (supposedly) non-coeliac kids. I don’t think they have ever been screened (some of them appear to have coeliac/DH based on their symptoms and one keeps breaking his bones whenever he falls over) because when I asked about it the parents (who are the healthiest ones in the family) zoned out and changed the subject so I never mentioned it again. They have struggled financially for a while and so buy the least expensive breads, cereals and flours. I met a newly diagnosed coeliac last week who was unaware that her first degree relatives had to be screened. It baffles me why parents with coeliac would not have their children tested but I’ve found it happens a lot around me. They need to read some of the stories here at GD.com and elsewhere about things that happened to people that went undiagnosed over the years.

    To me, not using regular flour in the home is almost a no brainer if there’s a coeliac in the household. There are so many great gluten free recipes these days. Friends have always complimented me on my baked goods, some of whom don’t even realise they’re gluten free. But more to the point… it will not only keep the wife safer and happier but also (again, considering the husband’s risk factors) make any potential future transition to a strict and lifelong gluten free diet easier on everyone.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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