Monday Mega Mailbag (Yeah…I Know it’s Tuesday)

celiac mailbag

I started this on Monday, so technically I can call it Monday Mailbag, which has better ring to it then Muesday Mailbag and will become I hope a regular, weekly feature on this site.

Anyway…I get emails. Lots and lots of emails. Happy to be a sounding board. Sad that I don’t have the time to respond to everyone. Happy to help where I can. Sad that doctors can’t be providing the assistance people are looking for. Happy to post my Mailbags. Sad that I don’t have all of the answers.

Let’s get started.

Hi there, I was diagnosed with Coeliac disease in October 2016 and I have followed a strict gluten free diet for nearly 4 months but I am still suffering from intense brain fog. Can you please tell me if this should have cleared by now and if not, how long it will take? Life is a real struggle for me at the moment and I can barely function at times.

Learn from my mistakes and it’s the same mistake many new celiacs make.

Mistake #1: Eating crappy gluten-free “replacement” foods. Stay out of the gluten-free aisle until your body heals. Eat real food. Please read this: Stop Eating Gluten-Free Food

Mistake #2: Not being patient. Depending on the damage done to your insides, it can take a long time to heal. Stay the course.

Mistake #3: Not giving up dairy. Best thing I’ve done for my body. You should consider it.

Mistake #4: Not standing up to my “friend” Mike Perry when he constantly bullied me as a kid. Oh…if I could just go back in time.

I’ve been gluten free for almost two years now. I was first diagnosed when I was 15, and like you, my numbers were of the charts. So I started on a gluten free diet straight away, which was alright, because my dad has celiac disease too so I had some knowledge about it. I’ve been taking new blood tests every six months since then, but my numbers won’t decrease. Well, they’ve gone down a bit, but they’re still way too high. The doctors think my diet still contains gluten, but I know it doesn’t. I really know I don’t get any gluten in me. But I feel like they don’t believe me, they’re talking about how it’s easy to be peer pressured into eating things, like I’m that stupid. I know they’re just making sure I follow “the rules”, but I’m just so tired of all of this. I’m so exhausted; how am I going to live like this for the rest of my life? I get emotional even just talking about it, because I feel like everyone just focuses on eating gluten free, not the other parts of it, like handling the mental aspects, all the ups and downs, how absolute shitty you feel for weeks when you’ve been glutened. I have no idea what I’m trying to say here, but I’m just so over this whole thing. How many years do I have to wait for this to get better? And why do I want to cry whenever I think about it?

What you are going through is not abnormal. And I think I can speak for many of us in the community when I say “been there, done that!” If you know you are not eating gluten, don’t let anyone make you feel like shit about it. You don’t deserve it. I don’t know much about the “numbers” (perhaps others can chime in here.)

I was two years in and really felt no relief whatsoever. But I promise you…it does get better & it does get easier. There is a light…sometimes it just takes awhile to find it. Hang in there.

I have found that CD seems to get in the way of my social events and organizations. I recently went to an American Legion meeting, to see if I wanted to join. Most of of the events were wrapped around shared meals. The same is true at my church. If I go to the events, I either risk gluten contamination, or have to have embarrassing to me and annoying to others conversations with the food preparers, or bring bring my own food, which doesn’t seem to fit. So, I have been staying away, and losing out on the fellowship.

Do not, do not, DO NOT let food get in the way of ANYTHING you want to do. No need to be embarrassed. You’ve got an autoimmune disease. That is nothing to apologize for. You need to either 1) eat ahead of time; 2) bring your own food; or 3) call ahead and see if the place you are going to can accommodate you.

Are oats safe for people with celiac disease??

Rule number one: Listen to your body. If you eat oats and react, that’s all you need to know. That being said…are they safe? Here is what I’d say. If they are grown in a field that ONLY produces oats and they are handled in facilities and gluten does not enter…then possibly. I know many celiac cannot tolerate them. But I don’t think this is a one size fits all topic of discussion.

So, it has been almost a year since I was diagnosed with Celiac. As someone who loved beer (I think we can relate, as I have now read most of your blog) and occasionally enjoy a night out, I have a couple questions. 1) Have you ever tried home brewing/do you have recommendations if you have? 2) On your page about safe alcohols, you do not have anything about cordials (more specifically to my question: Southern Comfort) as someone who seems to know a lot of people in the community, do you know if I should be worried about cordials (besides the coloring aspect, which I know can come from barley or wheat)? Also, just want to thank you, your articles about kinda facing the music helped pull me out of my denial and “I can still eat what I want” phase.

Yeah…beer snob here. Such great ones on the market now. Not available nationwide yet, but hopefully all in due time. I have not tried home-brewing, though I think it would be very cool. Not sure about SoCo. The interweb seems to say it’s safe. And cordials? I would just say be careful. I can have a bit of triple sec with no issues. Haven’t delved outside of that in the cordial world. Cheers my friend!

I’m so glad I found you. I was diagnosed with Celiac Disease three days ago. As with anyone that has been diagnosed with this, I have been all over the internet. My most recent find states that even oats (processed in a gluten free environment) and brown rice contain enough gluten to affect a true celiac. What are your thoughts on that?

As soon as I was diagnosed with CD, I took all gluten out of my diet. The results were felt within 24 hours. Although I didn’t feel 100% better, I felt awesome compared to how I did feel. I found out I had to be on gluten for the biopsy so the day before I went on a gluten binge. It’s been about 36 hours since I’ve had gluten and I’m still not feeling right. My stomach feels distended, if that makes sense. But the foggy brain is MUCH better. I’m wondering if it’s because I have been eating brown rice.

Ah…the internet. I know I just gave advice above to search the internet, but that comes with a warning. A lot of what you find online is simply…wrong. Lots of bad info and fear-mongering out there. Brown rice does not contain gluten. Though I do find white rice easier to digest. And 36 hours and not feeling better? Give it time. Your body has to heal.

You say that liquor made with wheat is ok to consume by people with gluten allergies. But IT IS NOT! I am allergic to gluten and the reactions I get are itchy, red welts. They happen for 2-3 weeks after I consume the offending food. The same thing happens to me when I drink liquor made with wheat, rye, barley, etc. And the reaction happens quicker than with food. Please avail yourself of the facts before handing out poor advice. You may end up getting sued and rightfully so.

Ouch! From the Celiac Disease Center in Chicago:

“For pure spirits, (vodka, gin, scotch), the distillation process makes these beverages safe because the protein is removed. However, flavored spirits may contain malt, and should be avoided.”

Have a reaction? By all means, don’t consume it. Blame me? Please.

When I was 20 years old (I’m 26 now) I diagnosed myself with celiac disease because I could not get my doctor to test me (he thought I was depressed). I was exhausted all the time, losing weight even though I was eating an insane amount of food, was suffering from several different infections, and had constant stomach cramps. I had read about Celiac and thought I’d give it up and see what happened. It was like night and day! I felt amazing, my infections went away, and no more stomach pain! Now if I eat gluten at all, I have loose stools for days and I break out in a skin rash. However, I am usually OK with cross contamination. Does this mean I don’t have true Celiacs Disease? I’m asking because some people have told me that it’s not true Celiacs Disease if cross contamination does not bother you?

I’m just tired of hearing that this is all in my head (because last I checked diarrhea is not a mental issue).

Without a diagnosis, you’ll honestly never know if it’s celiac or not. But if gluten pains you, say no more. Stay away and ignore the haters.

What do you eat for breakfast??? I’ve always eaten oatmeal or cereal but oatmeal (even the ridiculously expensive, GF oatmeal) gives me an awful reaction and I’m cutting out processed foods while my gut heals (3 weeks post-diagnosis 🙁 ), if not forever! Eggs? Sausage? Grits? What else is out there for breakfast options?

If not coffee, I’ll boil some water with ginger, then pour it over honey, cayenne pepper and lemon. Makes a great tea that works wonders on the digestive system. I never have a heavy breakfast. And I haven’t had a bowl of cereal in 5 years. I’ll slice up a banana, add some raisins and cacoa chips, then drizzle some honey over it. That or I’ll make a smoothie.

I want to thank you and the GD community, you’ve all been the support I so desperately needed after being DX last summer. After the worst year of my life I’m looking forward to a gluten free 2017 and my symptoms getting better. I’ve read on this website and others that Bob’s Red Mill oatmeal can no longer be trusted as some Celiacs react to it now and I have had a hard time finding a GF oatmeal that isn’t either in overpriced little packets, loaded with sugar or takes 30 minutes to cook. I was excited to find a new brand in my local store (how boring is my life if that excites me?) called Almost Love that said Gluten Free on the front and the main ingredient was GF oats, but when I got home I saw the ubiquitous “made in a facility that also processes wheat….” I sent an e-mail to the company and they responded within 24 hours (small companies seem to be more responsive) and they said the facility cleans it’s equipment when switching products and has a testing program. Is this porridge safe? Can little miss muffet eat this porridge without that nasty gluten spider scaring her away?

Shared equipment? Hell no. Read this.

What effect does having Celiac have on lifespan? I’ve read varying articles stating if it were diagnosed later in life the life-span is shortened, other that state even if it’s a later diagnosis with proper care and diet there is no effect…can I please get some clarification?

Honest suggestion? Don’t worry about it. Just take care of you and let the rest take care of itself. If you spend your life worrying about your death…we’ll that’s not much of a life to speak of.

Just wanted to bitch about a recent experience at a restaurant. I went to Big Bowl (it’s a Lettuce Entertain You restaurant) specifically because they have a gluten free menu. I tell them I have a gluten allergy (easier to explain than autoimmune disease) and they go get me a separate menu. Five minutes into my dinner, the server comes over and informs me they gave me the wrong dish. A manager comes over comps the meal and is full of apologies. I email corporate to suggest they somehow make allergy food more noticeable like a colored toothpick or something. I am sick for two days and miss my family’s New Year’s Eve celebration. I get a phone call from the GM a few days later. He is mortified and tells me that my food should have been on a plate with a red ring and handled by a manager. He tells me that he understands if I never want to eat there again but will send me gift cards for “my few visits” if I choose to trust Lettuce Entertain You again. A few days later I received a gift card for $10 in the mail. Yes, $10.

Reason number 43 I only go to specific restaurants I trust and gave up on PF Changs years ago. $10?? I have no words. Except these: I’m outta here.

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15 thoughts on “Monday Mega Mailbag (Yeah…I Know it’s Tuesday)”

  1. I’m the person who wrote about social activities (American Legion).

    I do what you suggest. I eat ahead of time, bring food or talk to the servers at the venue. It helps, but… When you are at a dinner, and not eating, it’s makes other people uncomfortable. I’m not ashamed of CD, but I cannot deny how others feel. I can explain, but that only sorta works, and I don’t want others to feel uncomfortable. The same applies if you bring your own food, except you can’t do that at a lot of places. I’m pretty old (Vietnam vet) and maybe this isn’t as much of a problem with younger people at events, and perhaps especially in places where GF is a fad so folks are used to it.

    I would be curious to hear how others respond to this.

    Thanks for all you do for the community.

    1. I generally bring my own food and don’t make a big deal out of it. When someone asks, I just say that I have Celiac disease and eating anything with wheat can make me extremely sick. Some people will still be uncomfortable… but just remember, would they feel uncomfortable if you were a diabetic choosing not to eat sugar? In the end, I’ve found that people eventually lose interest in what I’m eating and it’s not even an issue after a while.

    2. You could always bring your meal with you if it’s uncomfortable. I think, sometimes, even though we don’t think we let it bother us, it does. You just have to be okay with telling people the reason and being okay with them being uncomfortable. It’s not your issue that other people are uncomfortable and you should be able to enjoy yourself!

    3. I either bring my own food or eat ahead of time, too. If the former, I find people asking lots of questions and suddenly it becomes a topic of conversation. If the latter, people feel sorry and keep wanting to feed me, and then I have to turn them down. “Are you sure? I feel so bad you have nothing to eat” they say multiple times. Sometimes they surprise me with “gluten free” food that really isn’t, and then I feel rude.

      I also have a lot of gluten-free-but-not-really friends who are very vocal about it. They’ll take the bun off the burger and then others tend to expect the same from me and when I explain I feel neurotic.

      I’m trying so hard to not be awkward, and to use it as a learning experience, but I am sorta shy and I worry about seeming neurotic or offending people. Still trying to get the hang of it.

      It’s not the worst thing in the world though. People want to include me and that’s nice. It’s the thought that counts.

  2. Thanks GD, I gave Little Miss Muffet’s Almost Love Oats away to my daughter along with the Bob’s. I’ve been fighting your advice to go GF free for a couple months now, thinking if I give it enough time I’ll get better without having to retrain myself and completely change my diet. It’s only been 4 1/2 months and I thought I was doing so well. Ah, what kind of fool am I?

    I live alone in a GF house, have researched my meds, vitamins, supplements, even my toothpaste and shampoo. I was so thorough, yet 2 weeks ago I started to feel terrible. Migraines, muscle aches, rashes, gut pain and bloating, etc. I’m a technician at a fabrication plant where I work a compressed work week which means I work 12 hour days and I was struggling to have the energy to make it through a shift. On my forth consecutive day (my Friday) I was struggling with brain fog really bad, as well as depression and anxiety when a tool went down and in the course of trying to recover product I made a mental error and destroyed tens of thousands of dollars worth of product. I managed to finish recovering the tool and product before having to go to my car and have a small melt down. I had a brief meeting with my supervisor who was very understanding, but then I gave him little choice because I was kind of freaking out, fighting to keep my composure, choking back tears. I have made other less costly, but serious errors in the last year and a half due to brain fog. After 21 years, becoming the lead tech and a mentor in the area I fear for my job. I went to see my GP the next day and he immediately put me on a medical leave for 1 month (I think he feels guilty for treating me like a hypochondriac for years until the GI finally DX my CD). 2 days later I’m shopping and realize the brand of GF frozen waffles I bought the week before have 1 flavor that’s not GF. Yes, I had eaten gluten waffles 3 times during the last week. Although nice to know why, the knowledge that it was self induced didn’t help with the depression.

    I’m dreading going back to work. How do you explain? I’m embarrassed by my emotional behavior and feel foolish for my mistake.

    What kind of fool am I? OK, I get it now, the problem with GF foods…. Painful lesson.

    1. You don’t have to explain and under ADA you cannot be fired from your job because of your disease. We are a protected class! I would just go about your day and just say you are feeling better!

  3. Re the question “Are oats safe for people with celiac disease??”: there is a fairly complete discussion of this issue in various articles in the Gluten Free Watchdog (GFW) web site in the News section (www.glutenfreewatchdog.org/news/). (GFW is a subscription service, but some articles are available to non-subscribers.) A recent article (January 25, 2017) “Gluten Free Watchdog Updated Position Statement on Oats”, has links to earlier items and is a good place to start. You’ll see the term “purity protocol oats”; the exact meaning of this depends on the supplier, but there’s a link to an earlier article on suppliers given in the Jan 25 article.

    I seem to be among the fortunate group of celiacs who can tolerate oats, and I’ve been eating products from Montana Gluten Free (their “purity protocol” seems to be about the most stringent) without problems for over two years, but this is definitely a case of “your mileage may vary”.

  4. Michelle Chapman

    I too have missed breakfast. I found this recipe recently and am loving it. Kind of like eggs, kind of like oatmeal. Very filling. I’ve made it several times and I find that the microwave is the simplest way. One bowl, stir every 30 seconds until cooked. Very filling too.

    http://init4thelongrun.com/2015/01/31/grain-free-paleo-oatmeal/

    Ingredients
    2 eggs
    1 ripe banana
    3 tbsp of unsweetened almond milk
    1 tbsp of ground flax meal
    1 tsp of cinnamon
    1 tbsp of coconut oil
    Optional Toppings:
    Nut butter
    Sunflower Seeds
    Slivered Almonds
    Fresh Berries

    Instructions
    Peel banana, cut in chunks and heat in the microwave for 30 seconds
    Mash banana and add 2 eggs, whisk together until well combined
    Add almond milk, flax and cinnamon and mix together
    Put in microwave, stir every 30 seconds until cooked. Enjoy!

    Good luck!

  5. For the newly diagnosed rule #1 is the most important. Not long after my self-diagnosis and diet change I started eating glutino bread and ended up as sick as before. For homebrewing check out glutenfreehomebrewing.org. The cheapest and easiest good brew is partial mash with millet, buckwheat and sorghum syrup. You can follow their recipe kit the first time and then substitute different millet malts for variation. Drinking makes me alot more tired than it used to though.

  6. I want to speak up in favor of manufactured gluten free foods. Some is not as nutritious as the best GF food, but it is very handy, and some of us don’t want to focus our lives around preparing the best every time. It is our choice, just like it is anyone’s choice to do otherwise.

    Certainly it may cause problems for people, but be careful attributing problems to it – with our guts messed up with CD, all sorts of things cause problems. I have had to be very careful, keeping diaries, to find what bothers me other than gluten (and also, and why I started, to identify when I got gluten when not expecting it).

    I’m not saying that in your case, Glutino didn’t cause the problem – I just want to counter the idea that all of this stuff should always be avoided.

  7. I work in health care, in a dept where patients bring us glutinous treats all the time, and pharmaceutical reps provide lunches next door. John has a definite point about being able to eat manufactured goodies, as does the dude with the moderation (if at all) message. Breakfast for me needs to be high protein, and possibly containing a treat type food that can be consumed mid-morning. Once your body has healed, if you can tolerate dairy, yogurt & a gf muffin can be a tasty way to start the day. Or a gf bagel with hummus or eggs & cheese, or even leftovers from last night’s dinner. While you heal, how about starting the day with a bowl of soup or stew?

      1. Yes and no. If you are diabetic, it can be a big issue. For other people, it may or may not. Everyone is different. I can eat a a lot of something that is loaded with sugar and not crash. In general, eating a lot of sugar isn’t something you want to do all the time, but for most people it doesn’t hurt at times when you need a convenient snack, which is a good thing since it is hard to find packaged food that is both gluten free and not full of sugar or sugar alcohol.

        I’m a storm chaser, which means I spend a bunch of time in the spring in the rural midwest. There is no way I can prepare food, because there is not time. There is a limit to how many bananas and apples I can eat. And, gluten free pretty much doesn’t exist there, at least as a “gluten free food.” So when all I can do is eat whatever is in a convenience store, the choices aren’t good. The good news: I tend to lose weight that I need to lose on those trips. The bad news: the food is really not very nutritious, but it works.

        1. Treat type foods don’t have to be cupcakes. I’m partial to muffins myself & never crash, but everyone likes different things. Sounds like smoothies would be a treat for some of the others here.

          John, storm chasing? Wow! Can’t begin to imagine what that is like. Were you in New Orleans during their recent intense weather?

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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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