It’s Mailbag Time!

celiac mailbag

Everybody sing along….Here’s the mail, it never fails, it makes me want to wag my tail, when it comes I want to wail…MMMMAAAIIILLL!

Way too long between mailbags, so let’s just jump right into it.

Holes in my gluten free Udi’s bread so many times. Not getting my monies worth as it is so expensive. I’d say you owe me some bread. What do you think?

udi's holes

‘Nuff said.

Gluten Dude, I’m recently divorced and looking to get back into the dating world. What are some safe places to take someone out to where we could both enjoy eating or adult liquors/beer I could have when we go out if my date isn’t gluten free? Like you, I have celiac disease and bad. She most likely doesn’t.

Pick a restaurant that is safe for you and don’t make a big deal out of it. Yeah…I’m sure it will come up in conversation after your ten-minute discussion with the waiter regarding your needs, but it is what it is. Hopefully, your date will be so riveted by your company, she won’t even notice you didn’t eat the bread. And here are some tips on dining out safely. Good luck to you.

Is JOHNNY WALKER RED GLUTEN FREE.
WHAT SCOTCHES ARE GLUTEN FREE?

Why are you screaming at me? Yes…scotches are gluten-free. The distillation process removes all gluten. See here.

I cannot tell you how many times my random google searches on the darker side of celiac disease have brought me to your site. I really appreciate that you cover all bases here and don’t just make the gluten free life all roses like so many of the other blogs out there. I’m throwing around the idea of writing a memoir on my own personal transition to a gluten free lifestyle, as I haven’t seen that much information out there for us silent celiacs. It’s a whole different mind-f*ck I tell you.

Go for it. We need some more books on the reality of celiac disease and not “go gluten-free and your life will be wonderful” books. Speaking of the dark side:

Hi, I have Celiac disease, Gluten Ataxia and other autoimmune diseases and problems related. I was wondering if u can send me pics of what celiac rash looks like.

Google is your friend. A doctor may be even a better friend. I know the rash sucks. Hope you feel better.

Only a year ago I was able to eat whatever I want and worked out all the time. Slowly, I started getting tired and sick and found out that I have celiac disease. I didn’t immediately cut gluten out and my symptoms started getting worse and worse. I started getting these electric shock feelings through my body, feeling out of it, having trouble breathing and swallowing, and having a rapid heart rate. I have now fully cut out gluten, but I am STILL getting these symptoms. Some days are worse than others. I have seen many different types of doctors and none of them know how to help me. I feel like I need to eat constantly or I will start to feel like I’m passing out and if I exercise it makes me feel weirder. Lately, my vision has been getting blurry too. I have never had a seizure before, but the feelings I get is what I imagine people feel before they have one… that could just be my fears, though. I’m gaining weight like crazy and am starting to get really depressed. I am afraid to drive and function, and I’m tired of it. I am only 17 and a half and I don’t want to live like this forever! Any advice? Ideas of what it could be? ANYTHING!!!

Breathe. And then keep breathing. It can take awhile for your symptoms to alleviate. It took me years to begin to heal. Giving up dairy helped me tremendously. I can’t offer any medical advice but don’t let your docs ignore you. And hopefully you have supportive parents. Being 17 is tough enough without the health issues. Hang in there.

I have a proven method to increase traffic and sales for http://www.glutendude.com.

Get a life you spammer. Contribute to society. Honestly…it’s a win-win.

I saw in a post that you mentioned you live in a household that is both gluten free and gluten. I was just diagnosed with celiac disease and have a 2.5 yr old and a 4 month old the gi doc told me my kids should stay on gluten so my question to you is how do you manage to be gluten free and not get cc when there are gluten eaters in your house?

Good question. Please read this.

I found you when I did a web search for Gluten Free Beers and I’ve been stuck on your site and blog since, laughing much of the time by your hilarious comments (because I can relate to all of them). Thank you!!! You are doing something different here and I SO appreciate it! I needed to find you. Reading your experience, your path, your feelings you went through during your lifestyle change helps dramatically and probably because you are someone my husband and I would be friends with.

Consider us friends. It’s an awesome community here. Cheers!

I recently found out that there are two cures for celiac, I was excited. One is helminthic therapy. You get hookworms, and they prevent the immune reaction against gluten. I’m confident in your ability to research this yourself, but check your facts, there’s a lot of misinformation out there, stay scholarly. The second cure is a shot that prevents the DLA-HQ2 gene celiacs from having a reaction. They call it a ‘vaccine’, but it seems more like ‘cure’ to me as it doesn’t have to be administered pre-celiac. I’d like your thoughts: if you could take one of these and not have to live GF anymore, would you?

Nope. Nope. Nope. My body is very clear in its instructions to me. DON’T EAT GLUTEN. I will listen to it until the day I die.

Just last week we got back from Ireland. When you go out to eat and tell them that you have Celiac disease, they are not only happy to serve you, they are educated on what Celiac disease is and the precautions that are necessary to take when preparing food. Then we came back home. Sigh. How can it be that in the “greatest country” we can’t have similar allergen laws where restaurant personnel are informed and educated on how to prepare food in ways that allow individuals with allergies and diseases to continue to live their lives as normally as possible?

I can give you a laundry list of reasons why we may not be the “greatest country” anymore. And our cynicism about celiac and eating gluten-free is certainly on the list. And the fact that Trump and Clinton are the best we can come up with? Don’t get me started.

Rapscallion Restaurant in Hamilton Ontario, they efing use the word “glutarded” on their menu, and apparently it’s not offensive because their owner, Erin, has Celiac Disease. Since when did having CD magically give me the ability to be an insensitive asshat to people with developmental disabilities, and to use the suffix “tard” like it’s some hilarious marketing?

I heard from a lot of people about this. I decided not to comment on it cause I didn’t want to give them any publicity. But I did contact them privately. They eventually removed the word from their website. But I will say this. That word is NEVER funny. Like EVER. I shouldn’t have to explain why.

Do I need to be careful about gluten being in my cleaning products? I seem to always get glutened after we have company over, what can I do?

Unless you have DH (skin reaction from gluten), no I’d say you don’t need to worry about cleaning products.

I need information about how to travel for work with Celiac disease. My question is that many jobs travel using a per diem amount to cover food, lodging, car per day. I can’t eat at the hotel free breakfast, so that’s $6 min. Then lunch isn’t fast food, so that’s an easy $15. Now add dinner and there’s no way the cost of safe meals fit into a corporate travel per diem structure. Any ideas where to get info on how other handle this scenario?

I’m beyond blessed to work for myself and work from home. Double score! Anybody out there offer some guidance??

My 2 year old daughter was diagnosed with celiac last week. I’m going through so many emotions at the moment. I’m so confused. This is so scary to me and my husband. What kind of a life will my child have? Will she always be different from her peers? How can I as her mom be her best advocate? Will a second opinion matter or should I believe in her first doctor?

Let me answer your questions one by one:

What kind of a life will my child have? A normal one, with a few adjustments. Since she is so young, her celiac will be her norm.

Will she always be different from her peers? That’s up to you. Do not let celiac define her. Or her celiac define you. It’s a disease, like any other disease and the treatment just happens to be food.

How can I as her mom be her best advocate? Being a great mom means you will be a great advocate. It goes hand in hand.

Will a second opinion matter or should I believe in her first doctor? If she was confirmed via a blood test AND an endoscopy, she’s got celiac. Now educate yourself on the disease and focus on the treatment. You will all be fine…promise.

About 4 months ago, I suddenly started having GI problems. My doctor recommended tranquilizers. I ignored her but stopped eating gluten as a test and my problems are gone. Visited a dietitian today who said I could probably have a little bit of gluten in my diet as long as it’s not causing GI symptoms. But if I am celiac, then all gluten (in however small amounts) is bad, right? Should I try to convince my doctor to let me get tested?

Tranquilizers?? Unreal. Get tested…please. But you must be eating gluten for the test to be accurate. Good luck.

I have Celiac disease. When I was first diagnosed in 2008 I was angry. Really, really angry. I didn’t think I’d ever eat again and life as I knew it was over. There were many tears and gnashing of teeth. I was sure I’d die of starvation. Drama ensued. Drama drama drama! Fast forward to today, 2016, eight years later. I never think about the fact that I have Celiac disease because it’s just an everyday part of life and it’s how I do life. There is a very definite learning curve and the difference between being bitterly disappointed on a daily basis and being successful at staying healthy in this life is knowledge and attitude. Life does not end at the gluten free aisle.

^^This. A thousand times this.

I’m outta here. Stay thirsty (and gluten-free) my friends.

(Because no mailbag is complete without a little Bruce Juice. This is Prove It All Night from 1978. Absolutely epic.)

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11 thoughts on “It’s Mailbag Time!”

  1. On the work travel question–make sure your boss or whoever approves your travel receipts knows you have special requirements (and yes, celiac is considered a disability). I travel with a soft-sided cooler and gallon ziplock bags (for ice) in my luggage and an array of foods such as Kind bars, gluten-free instant oatmeal, single serving peanut butter, etc. My boss knows that on my first day out of town, there will be a large charge at the grocery store. This is me stocking up on my food, which I then keep in the cooler if I do not have access to a refrigerator (although I try to always stay at a hotel with an in-room refrigerator and microwave). I may end up eating a lot of yogurt and salads with turkey, but I’m safe. I travel mostly to larger cities, and I am usually pleasantly surprised by the gluten free options (Dallas has two all-gluten-free restaurants! Chicago has gluten-free donuts!). It does take a bit more effort, but it can be done.

  2. Great post! I have had a question rolling around in my head for a while: What if this is as good as it gets? I’m so frustrated because things seem to get worse rather than better, 2.5 years after diagnosis and being completely gluten-free. I keep hoping things will get better, but what if it doesn’t?

    1. I’m with you on that one, Beth. It’s been about the same amount of time for me since dx (January 2014), and I kept having symptoms. I went to a GI doctor at Mayo Clinic (thankfully I live in MN, so it was a $25 bus/shuttle ride down there). He ran tests including an endoscopy. The endoscopy showed that my villi were quite happy (one of the best he’s ever seen, apparently), so there was something else going on.

      I’m silent Celiac, but I noticed I was REALLY REALLY bloated all the time. Also, gassy… I’m on a modified diet based on the FODMAP diet now. I started with 1 food (peanut butter toast) for a couple days, then added only ONE food item every 2-3 days. If I got bloated/gassy then I cut out the food(s).

      I now have a long list of things I can’t have (won’t burden you with reading it all here unless you want to), but I’m not bloated or gassy all the time. If I try a new food that makes me bloat, I seriously look pregnant! I could go in the maternity clothes section and no one would bat an eye. Those days are hard to dress for work, as pants are tight, but dresses show the “bloat bump” more.

      I’ve got a better handle on it now, after doing this new diet for 9 months, but I’m still introducing new foods here and there. Baking has gotten interesting between gluten free, dairy-free, and only 1 DF milk I can handle, but it’s been fun to make up my own recipes for things.

      I guess I would suggest you see your GI doctor (or maybe another one who can look at your symptoms in a different light) and see if there are tests he/she can do or a new diet they could suggest. I would not suggest trying a new diet on your own, though, as you don’t want to do more harm to your body. Maybe even ask for another endoscopy to make sure that it’s not the Celiac that is rearing its ugly head? Sometimes we gluten ourselves without knowing it, so it’s good to rule it out if possible and move on to other solutions.

      Good luck! I hope you get it figured out.

      Let me know if you have questions about my “special” diet – I’m MORE than happy to share 🙂

      1. We must be sisters… that sounds like me exactly! I can look very pregnant often because of the bloating. I’ve been on low FODMAPs since I was diagnosed with celiac, and had IgG food sensitivity testing which showed lots of things. I’m also being treated for candida overgrowth, and that has helped some with cutting out all sugar and fruit, but hasn’t removed all symptoms. I’ve worked with a dietitian, nurse practitioner and my doctor, and everyone is out of ideas. I was already treated for SIBO.
        With the low FODMAPs, no/low sugar, celiac, and plant-based diet (I will not eat animals), I have few things left I can eat other than fresh vegetables, homemade nut butter, low-sugar berries and some nuts and seeds. I think I need a small intestine transplant!

  3. This post actually sparked some questions I have – I was diagnosed with celiac in 2012, shortly after having my daughter. I read that it can be genetic, and since I show very few symptoms when I do get glutened, I am concerned that she could develop it without my knowing.
    Every time they draw her blood I ask them to run the celiac panel and we have always gotten normal results (she is almost 4) but if the blood test ever comes back positive, should I immediately assume she also has it and spare her the endoscopy? Or should I still get the endoscopy done?

  4. Loved the shoutout to On the Dark Side! Dude, glad to hear that it took you some time to heal, as it’s been two years since my diagnosis and I am finally starting to feel human. Recent blood work showed a “critical” vitamin D deficiency, and I am now taking 50,000 units a week. A month later, starting to feel much better. I never, ever, eat out, and kitchen is completely gluten free, so there is light at the end of the tunnel. Just bought a travel trailer so we can still travel and prepare our own food. Celiac is an inconvenience, but with a supportive spouse, life is good.

  5. I stopped buying Udi’s at least three years ago. Initially they were good even when the slices were tiny. Then when they got really successful, the quality slipped dramatically. The bread was always hard and dry, there were huge holes and it tasted nasty. Same thing with Canyon Bakehouse. I used to buy their bread and buns all the time, but they changed their recipe. The bread was always dry, but toasted it was okay if a bit damp. Their buns used to be wonderful, but now they are like bricks. We still buy their bagels and everyone likes them, but for sandwiches I buy Schar’s bread. Everyone has something they like or don’t like and you have to go through a lot to find one, and then hope they don’t change the formula. I hear a lot of positives about Three Bakers, but I can’t find them in my area, and the prices at Amazon are pure extortion. So no thanks. We don’t buy a lot of bread because we don’t eat many sandwiches. Aldi’s has surprisingly good wraps, and their bread is okay but has to be toasted. They are popular though, and the bread is sold out quickly. It is also about a buck cheaper than other gf breads. They also get promotional gf items throughout the year, so when I see them on ad I buy them. Around Thanksgiving they sell the canned onion rings which were amazing and just as good as Durkee’s. Whatever you do, don’t buy the stuffing mix! It is horrendous and while the bread itself is okay, the dried celery is comparable to gravel. It never softens.

  6. Few additions:
    I check ingredients in cleaning products for anything I use in the kitchen. Most products are gluten-free, but I’m more careful there. I mostly use vinegar, baking soda, and vodka with some liquid soap.

    For the 17 y.o. — when my food issues cropped up, I was first relieved, and then food was a source of anxiety. Any chance that you’re dealing with panic attacks or anxiety? When FOOD becomes unsafe, the entire world is scarier than it was. I had to leave grocery stores sometimes because it was just too much. Whatever is going on, you need more help than you’re getting just now. Ask for it. It gets better.

  7. Re. traveling for work: I work for a non-profit, so our per diem for travel is incredibly low. I always make sure to book well in advance so that I can afford a hotel room with a microwave and fridge. Sometimes, this means a crappy hotel, but so long as I can eat safely, I don’t mind.

    In Australia, we can’t carry fresh fruit or veggies over state lines, but I usually take everything else with me. We had a new expenditure policy recently, and I fought bloody hard to make sure that the per diem can be spent all at once, at the supermarket, the day before travel. My workplace has actually found that I tend to work out cheaper than other people because I take my food with me.

    In my hold luggage (ALWAYS have hold luggage!), I carry:

    – cereal
    – soy milk (the kind you don’t have to refrigerate until opened)
    – packets of soup or curries
    – packets of pasta sauce and pre-cooked rice sachets (pasta sauce and rice is a weird meal but needs must)
    – bread rolls
    – sandwich fillings (usually pesto)
    – margarine
    – snack bars
    – fruit cups
    – chocolate bars
    – juice cartons
    – foil or gladrwap for wrapping sandwiches

    As I only have to travel for a few days at a time, I’ve found this usually works pretty well. Sometimes, I’ll also fo to a supermarket when I arrive to pick up fresh stuff.

  8. For the 17 year old who is still symptomatic-obligatory IANAD, but- the first resource I would suggest is the book from the Celiac Center at Beth Israel Deaconess Hospital. They cover so many aspects of the disease in a very accessible way. For patients who are still symptomatic, they list the next steps to figure out what’s wrong. I think they have that info on their website too.

    I don’t want to seem like I’m diagnosing, but one possible lead would be to see an endocrinologist. Celiac really messed up my endocrine system, and those symptoms listed- difficulty breathing/swallowing, weight gain, fainting, tremors, rapid heart rate, insatiable hunger, blurry vision, weakness etc- they all ring a bell. It sounds like a thorough check up of adrenal and thyroid function and blood sugar would be wise.

    Also a thorough check for vitamin and mineral deficiencies, since those can cause all sorts of symptoms.

    Another possibility is a neurologist, for those who develop neurological complications.

    Hopefully OP has recourse to a specialty celiac center at a hospital or something where they can get coordinated care. I wish they could see my doctor, he treats cases like this!

  9. As far as bread goes, try making Cloud Bread. It has only eggs, cream cheese, salt, sugar (if desired) and cream of tartar. It is very good and DOES NOT FALL APART WITH A SANDWICH OR A HAMBURGER! There are lots of recipes online. I heartily encourage everyone to give this a try. Its not bread, but its not bad.

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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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