It’s Mailbag Time!

questions about celiac disease

What does an envelope say when you lick it?
Nothing. It just shuts up.

Did you hear the one about the letter without any stamps?
You wouldn’t get it.

What starts with a P, ends with an E, and has a million letters in it?
Post Office

Yep…it’s mailbag time.

Hey Gluten Dude, long time fan and thank for your help when I was first diagnosed. Things was going very well until this past spring when my husband and I both lost our jobs. While we’ve gotten some help from my mother-in-law in the past, it does not help in the now. We’ve been living in her house since August and she refuses to not follow minor requests that have made me very ill again. I’m flustered to the point I left the home refusing to continue to be made ill by someone who we found was doing their best to be a problem as she does not believe me nor the doctors. Now I’m with out a home because I can’t deal with her making me sick any further. Any idea how to deal with this nightmare.

Sigh. Makes me so sad that there are still so many non-believers out there. Imagine…we have an autoimmune disease, but because it’s controlled by food, people simply don’t believe in it. No words. I suppose my first question would be “what is your husband doing about it?” It’s his mom. Has he tried talking to her? Is he 100% on your side? My short term advice is make all your own food while you are staying at her house. Do not let her make anything for you. Period. And long term…hopefully things will turn and you can get out of dodge.

I am currently awaiting my blood tests to come back. (they were done on Friday. Alas, no relief as of yet.) Also, on Friday my doctor advised me to go gluten and dairy free. My first thought was… “Ok… No bread. I can do that.” But, then I began worrying when I realized Thanksgiving was weeks away. Thanksgiving is my favorite holiday and I pride myself on my HUGE turkey day dinner. So you can understand that I freaked out when I realized I couldn’t have my famous gravy. Or fresh homemade bread. Oh my gosh! No pie! As I was skimming through your funny and and heart warming words, I saw this – ‘5 STEPS TO ENJOYING THANKSGIVING AS A CELIAC”. I just want to let you know that as a newbie and the uncertainty, grief and frustration of all of this, your words of advice on Thanksgiving are just what I needed to realize that… yeah… I love Thanksgiving, but it is not about bread or the perfect pie crust. It’s about family and friends and enjoying the important things.

Yes. Yes. and YES. Take the focus off the food and put in on the people around you. That’s what the holidays are all about. And especially Thanksgiving. You have shelter? You have food on the table? You are friends and family around you? You are blessed. And here is the post she is referring to.

Are Cheetos gluten-free? I read a bunch of different websites that say YES they are but I have a friend saying they are not. Can you please help?!?

I think a better question would be “are Cheetos food?” but let me see about the gluten. The normal Cheetos have the following ingredients: Enriched Corn Meal, Vegetable Oil, Cheese Seasoning, Canola Oil, Maltodextrin (made from corn), Natural and Artificial Flavors (shocking!) and then some other ingredients that I either can’t pronounce or they make me throw up in my mouth a little. It says: Contains Milk Ingredients. Hmmm…I looked at a bunch of their varieties. Only one actually says Gluten Free on the bag. Does that mean the rest aren’t?

Ok…I found the info. It seems that some of their brands are “gluten-free” and some of them are “not made with gluten”. The difference is the latter ones are made on shared lines. So stay away from them. Here’s the full list. (My personal opinion? Don’t eat them. Our celiac bodies aren’t meant to eat non-food items like this.)

I have just recently been diagnosed as celiac with all three blood tests being positive. I am waiting on my appointment with a GI doc. I have started to go gluten free with replacement pastas and other foods that say they are gluten free. I have noticed that my bathroom habits have changed but I am still having muscle and joint pains and I feel hungry all the time. Do you know if this is normal? I just at this point am sick of getting up in the morning and feeling ok and then as the day goes on starting to feel like crap. It’s been about 3 weeks and I sometimes feel worse then when I was eating gluten. Do you recall if this happened to you?

Let’s tackle a few items here. 1) You should not go gluten-free until AFTER your endoscopy so the results will be as accurate as possible. 2) It took my over a year after my diagnosis to begin to heal; which leads me to 3) Until you heal, stay out of the gluten-free aisle in your store. It is the one piece of advice I’d give any newly diagnosed celiac. Until your body heals, eat real food. A lot of the food in the gfree aisle is ungodly unhealthy. Please read this: Stop Eating Gluten Free Food.

Hi Gluten Dude! 1.5 years celiac here…and I’m strict about things with a great, supportive husband who eats the way I need to to keep me safe in our house. This year we enrolled in a CSA with our local organic farm. So many great things! I’ve been having some symptoms, and wondered if it might be field cross contamination. The farmer says they use Rye as a cover crop but does not let it go to seed. I’m wondering if this is a concern that I should be considering.

Any farmers out there that can answer this question??

Hi! I’ve been a little confused lately with gf labels and gf certified labels on products. Who better to reach out to than the dude! So, long story short I recently got a Nima device and have been testing lots of stuff! My #1 surprise and new arch enemy is McCormick’s and their spices. Hint: they all contained gluten. I recently purchased one of their spice packages (chili seasoning mix) and it had a Cerified gluten free label (from the gluten free certification program- not the GIG certification). Anyway- it tested positive for gluten!! Ugh. Normally, I trust products that are certified by the GIG, the logo with the GF inside the circle. But now I am starting to question this other organization, the gluten free certification program (which is endorsed by the celiac disease foundation?!) Just curious if you have any knowledge or advice on gluten free certified products, be either organization.

Loaded question. Regarding McCormick spices, I’ve never had a problem with them. As a matter of fact, they are very transparent about their practices. Please read this.

Now let’s move on to the Nima Sensor. While I have always been supportive of the people behind the product (good folks), I just get the sense it’s not ready for prime time yet. From my reading and research, there have been a lot of false positives that don’t sync up with other scientific testing of the same product. As the founders of Nima say, it’s a tool and only a tool. Not the end-all-be-all.

I simply don’t believe that all McCormick’s spices contain gluten. And my issue with the Nima is that companies are getting dragged over the coals on results which may or may not be accurate. On top of that, too many celiac bloggers are posting Nima results saying Item X is safe/not-safe based on the Nima. Not cool and potentially very misleading and dangerous. I’m sure the fact they are getting paid by Nima is just a coincidence.

As for certification, a post for another day. A long post.

I face a problem that I hope you can give good advice for. I’ve been gluten free for about 1 1/2 years now; with exceptions of getting glutened by mistake at a restaurant. The problem for me is that I am super paranoid now. To the point of when we go to a restaurant, get seated, and I don’t feel complete confidence in the restaurant staff, I kinda freak out. My anxiety takes over and it pretty much ruins a night out with my wife. I’ve don’t this at least twice recently. I’m at a loss on how to keep my self calm in these situations. It could be anything from the waitress not being really focused on what he/she is doing to noticing that the risk of cross contamination is high. Any advice would be much appreciated. Your blog post Instant A**hole… Just add Gluten was something that hit me hard when I read it. In reality it was like reading a page from my own life. I really appreciate all you do for the community.

Live. Your. Life. Yes, we need to be careful. Yes, we need to be ungodly diligent. Yes, it can take some of the joy of eating out away. But when it reaches the paranoia stage, it’s totally unhealthy. Don’t let it get to that stage. Not fair to you. And certainly not fair to your wife. Here are some tips on eating out. Now go have a nice Friday evening with your Mrs.

Ok…so many more emails but I’m outta time. I’ll try to do these mailbags more often. Until then, it’s Springsteen time. Just because. Let your Ramrod Rock!!

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17 thoughts on “It’s Mailbag Time!”

  1. For the Thanksgiving person. Yes, you need to switch the focus from the food to the gathering of friends and family, however there are ways to make the foods you love (mostly) without losing the flavor. Your favorite gravy? Try substituting potato starch or tapioca starch for the flour as a thickener. Pie? There are a lot of great recipes out there for gluten free pie crust, or for other desserts that don’t have crusts. Try searching Pinterest for “Gluten Free”. I’m fortunate as my cousin’s son cooks for us for Thanksgiving and he’s a chef, who takes pleasure in challenges. The year I was diagnosed and went gluten free, I was really bummed about Thanksgiving, anticipating that I was going to end up with not much to eat. Instead, I got the entire traditional Thanksgiving Dinner, gravy, desserts, bread and all. He just used gluten free ingredients to sub out the things that we had always used, and if it didn’t end up tasting right (he experimented before the holiday itself) he made something else (notably, this Crustless Pumpkin Pie http://healthyrecipesblogs.com/2014/11/17/crustless-pumpkin-pie-recipe/ in place of the traditional one.) I hope you have a fantastic holiday and your family supports your new gluten free lifestyle.

  2. Food from any major manufacturer could vary in gluten free status based off where it’s being manufactured. My plant in Illinois might not follow the same practices as the plant in New Jersey, so no matter if I read something is gluten free online, I read the label.

    That said, Cheetos are one of my last remaining goodies that are available just about anywhere. If I do something stupid and run out of food with me, they’re generally a safe bet to grab. Likely safer than trusting the local diner to be up to date on gluten free practices.

    1. Connie makes a very valid point. My former employment includes 14 years in the food manufacturing industry. As a result of that I read “into” labels – as in, I read between the lines of what they don’t tell us. Here is a very simple practice I have taught myself to adhere to when shopping:

      Craving snack food – like right now.

      Go to the snack food section of grocery store and find something that looks good (and should be free of gluten). Pick it off the rack and read the label. Gluten free? Certified gluten free? Produced on a line that also produces? Produced in a certified gluten free facility? The label may tick all those boxes in a positive way…BUT!

      Now I place the item back on the rack and literally take a step back. I now am looking to see what other items this manufacturer has on the rack in the same type (size/shape) of packaging. If I see anything that obviously contains gluten I sigh (literally and usually rather loudly) and walk my way to the fresh fruits and veggies (where I should have been to start with).

      Okay, so that is a little vague maybe. Lets try it this way. In the snack aisle I see bagged raw nuts. I think, “I can do raw or even roasted nuts.” I read the label and there is nothing there indicating that gluten contamination would be a concern. Then I step back and see this same manufacturer also produces several varieties of trail mix (that contain wheat) and the packaging is the same as the raw nuts. That screams to me – POTENTIAL CROSS CONTAMINATION.

      Thanks, but I’ll take a pass and head for the produce aisle.
      Stay safe out there Celiacs.

  3. For the recently diagnosed, eating gluten free replacements and remaining symptomatic…” I have started to go gluten free with replacement pastas and other foods that say they are gluten free. I have noticed that my bathroom habits have changed but I am still having muscle and joint pains and I feel hungry all the time. Do you know if this is normal?”

    Yes. The short answer is simply, yes. When you begin your gluten free journey with replacement foods that “say they are gluten free” there is no doubt you will still be getting glutened and/or will still be eating foods that your system can’t process properly. To the second point, it is extremely common for celiacs to have sensitivity to other foods such as milk, soy, high fructose corn syrup…

    Yes. The long answer is, yes. The long answer is that you are normal (in celiac terms) and that the gluten free diet is a journey, not an instant fix all. Read the dude’s book. LISTEN to your body. Keep a food diary, especially in the beginning, to help you HEAR what your body is telling you. Go Whole30, elimination diet, eat real food, whatever you want to call it.

    ~sigh~

    K.I.S.C. (Keep It Simply Celiac). For at least two weeks but preferably 30 days eat nothing except fresh fruits, vegetables, and meats that you have prepared yourself (forget eating out during this phase). This allows you to think clearly without the gluten and/or other food triggers messing with your head (brain fog). This allows your gi tract to clear and begin the healing process (and I stress the word BEGIN). Assuming success of not getting glutened during this time it will give you hope through understanding you CAN feel better, function better, and experience less anxiety and pain. That hope will help you embrace the journey of healing and understand that this takes time…a lifetime.

    Is it worth the effort? Yes.
    Can it be overwhelming in the beginning? I won’t lie, Yes.
    Does it get easier as new habits form? Yes.
    Will there be unexpected setbacks? Yes, so expect them.

    Okay, so what can long term results look like? In my early 20s I quit trying to run/jog. I quit because 5k was the longest distance I could manage but that took a lot of ibuprofen to get there. My knees, I thought, were destroyed. Yes, this was long before celiac diagnosis but obviously after onset of the disease. At 50, I now can run a painless 5k and haven’t taken any type of painkiller/anti-inflammatory for well over a year. And that is just one example of former joint pain. The other improvements would take a blog the size of this one to elaborate upon.

    Wishing you the best,
    Matthew

  4. For the restaurant anxiety guy, trust your gut — pun intended. If you feel uneasy about the restaurant or server, very nicely explain your concerns and tell them that you’ve changed your mind and will not be dining with them after all. Leave a tip if they’ve already brought water and stuff because they’ll have to reset the table. My 24 year old son was diagnosed at 13 years of age. I cannot tell you how many restaurants we left because he felt they couldn’t deal with making him a safe meal. But it was his call and we always supported him. The key is to be nice (not snarky) and not make a scene. Bonus advantage: My son quickly learned to read people and whether or not they were willing or able to advocate for him!!

  5. Thanks for doing the mailbags. Seems like it could be really helpful for people to know there’s someone reading and listening. Thanks for your hard work for our community. I am always glad to see a post from you.

  6. The newbie with muscle and joint pains should probably be being monitored for other nutrient deficiencies, since those can develop with untreated celiac and take a while to recover, and feel awful in the meantime.

    When I was first diagnosed I had MANY deficiencies. Some, like potassium and vitamin k, came back up on their own, but my iron and b12 need supplementation indefinitely.

  7. To the person asking about the CSA…I am a farmer and I have a degree in Agriculture Science. I am also a member of a CSA, I’m a horse and donkey owner and I have celiac. The answer to your question is, sadly, a qualified yes. The produce grown in that soil will be gluten free in itself, but it may pick up gluten residue. For example, a tomato will always be gluten free (until we manage to create some GMO monstrosity), however it may have small amounts of gluten on the outside.

    I suggest that you wash everything very thoroughly and limit handling until the produce is clean. Talk with the farmer as well so that he is aware of the issue. There are other kinds of cover crops that may do what he needs without the gluten issue, such as field peas, clover, alfalfa, etc. Using cover crops is an excellent farming practice that the world needs more of, but is is one more thing for us celiacs to have to watch out for.

    As a horse owner, I have also had problems dealing with rye grass in the hay I feed. Donkeys are also tough because they need a super low calorie, high fiber diet – barley straw is the perfect feed for them. Feeding them without killing me is a challenge of absurd proportions.

    1. Kelly Sara Shorrocks

      This is very helpful! Thank you! I’ll ensure I wash all my veggies super well now…I always did, but feel I’ll put a little more care into it.

  8. As a side note for the gluten community, be aware of big, industrial dishwashers like you will find in hospitals, cafeterias, etc. and smaller water-recycling dishwashers. These use the same water to wash dishes all day and then sterilize the dishes with steam. That water will have dissolved food particles in it from whatever was served that day. The dishes and utensils will come out the other end clean and sterile, but may have an invisible coating of gluten on them. If you eat in a hospital cafeteria, beware even of the gluten-free choices and always ask for disposable dishware.

    1. Agreed. Diagnosed a little over a year ago at 58 years old I am on B1, B12, D3, folic acid, iron and potassium. I also bruise easily and will be asking my GP about adding vitamin K. I’ve been GF for a little over a year and recent tests showed none of these levels returning to normal yet. 58 years misdiagnosed seems to have taken a toll on my intestines that will take a while to repair. Recently have started feeling less foggy, but still battling depression, migraines, muscle cramps and lots of arthritis (recently diagnosed with spinal stenosis). CD-the disease that just keeps on giving, even though you don’t want it!

  9. Yo Dude, loved your article in Simply Gluten Free. Diagnosed around 2007. My wife had a serious panic attach the week before Thanksgiving – changing everything.

    Heard it all – “there is no wheat in the gravy, perfectly good to eat – just has flour!” to “Gluten Free, we don’t have anything here that is free”

    Everyday there is a new and different surprise.

    Glad you are out there working with us.

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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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