Category: Dude Mailbag

The biggest lie in the world of celiac disease is that you’ll feel better immediately once you begin your gluten-free diet. It sure as hell didn’t happen to me and my guess is you also did not have those results. And it did not happen to this 19 year old woman, whose parents are frustrated. Here’s the email:

“Hi Gluten Dude. My daughter is nineteen and was diagnosed with Celiac Disease five months ago. She was having severe stomach pain and after landing in the hospital, a biopsy came back as celiac. She has gone completely gluten free and the severe stomach pains are gone but she just feels crappy almost every time she eats. They told us it may take up to a year for her to feel completely better because her celiac was on the severe side. I am looking for confirmation this is normal and that there is still hope she will feel better. She is down right now with all the things she can’t eat. It is devastating to she your child feel so left out I just wish she would turn that corner. Any advice would be terrific! Thank you!”

My advice? Stop eating gluten-free food. Let me explain.

When I went to the doctor first and I showed him my diary and he says, Have you ever heard of Celiac disease? And I said, no. He goes, well, we’re going to test you for celiac disease. I said, well, okay. So I took a blood test and then I went home and I looked up Celiac disease.

And of course, the first thing I saw was, you have to be on a gluten free diet for life. And I said, okay, what’s gluten? So I looked at what gluten was, and then I cried in my closet for like, 3 hours.

No, I’m just kidding. So I did a bunch of research and every website I found said that once you go on a gluten free diet, you’ll feel better almost right away.

And I mean, I must have checked 100 websites and 98 of them said the same thing. ‘It’s a miracle diet’. ‘It makes your celiac not obviously go away, but you’ll feel better right away.‘

Those are my expectations going in.

So when I got the results in, he says, my God, yeah, you’ve got really bad Celiac, I said, okay, and I went home and went to Wegmans and got some gluten free food and just expected to feel better within a couple of days. And a day went by and a week went by and a month went by and a year went by. And I’m not exaggerating. I had some good days in there, but I felt like crap most of the time, and my frustration level was absolutely through the roof.

I eventually gave up dairy after a large, rare argument with my lovely wife, Debbie, A-K-A. Mrs. Dude, and that helped a lot, but it wasn’t enough. So I knew I had to make a serious change. So this is almost two years into my diagnosis. I heard about a diet called the Whole 30. It’s 30 days of eating just whole foods so you can have fish, you can have meat, you can have veggies, you can have fruit, you can have water. What you can’t have is alcohol, grains, sauces, coffee. Although I cheated on the coffee eventually. Dairy, obviously gluten. The idea is that you’re cleansing your body for 30 days, allowing it to heal and then maybe reintroducing some normal foods after 30 days and I will tell you this; it was insane how much it helped me.

So let me go over what I was eating in a normal day pre whole 30 and post Celiac diagnosis. I’d wake up and I’d have coffee with a splendid and some kind of gluten free bar, usually a Kind bar, anything that was gluten free and probably not very healthy. For breakfast, I’d have a bowl of honey chex with almond milk. For lunch, I’d have Brown rice, fish and veggies with a gluten free sauce. For snack, I’d have some other unhealthy gluten free bar, and then for dinner, I’d have gluten free pasta with chicken, et cetera.

Now to me, I thought that was a pretty healthy day, but then why did I always feel like crap? And why couldn’t I lose any of the weight I put on post diagnosis. Not that I was looking to lose weight, but I wasn’t feeling good about myself. I knew I had to shed some pounds, so I looked at the ingredients of honey nut chex and let me go over the first six ingredients: whole grain corn, cornmeal, sugar, honey, salt, molasses, Brown sugar syrup. And you’re wondering why I wasn’t feeling well.

Now, after the whole 30, this became my average eating day. Early morning black coffee, no sugar. I dropped the sugar in a splendid for my coffee breakfast. Three eggs with sausage asparagus onion and mushroom lunch, fish and veggies, but with olive oil and spices instead of the rice and the sauces. Snack was almonds or a piece of fruit, and dinner was a piece of chicken or steak with veggies, et cetera. Now, a couple of notes here you note, I’m not exactly starving myself with this new diet. Secondly, I’m not eating gluten free anymore. I’m eating just regular foods, and that was the key to my health in this situation.

For the nineteen year old woman who is not healing and you out there, if you’re not healing, let me ask you a question. When you were first diagnosed with celiac disease, what’s one of the first things that you did? Now, if you’re like me, you went to the store and cleaned the shelves of all the gluten free items you could find. Your mindset is, well, I can’t give up pizza. Oh, I can have gluten free pizza. Well, I can’t give up pasta. Oh, yes, I can have gluten free pasta. I can’t give up cookies. Yes, they have gluten free cookies. You get the point. The problem is, a large majority of the gluten free food out there is garbage. But many of the gluten free food manufacturers are more than happy to feed us this crap because they know the emotional attachment people have with eating, and they know the intense fear Celiacs have of losing their lifestyle as they know it. And they also know the enormous profit they can make off of us.

For the most part, let’s face it, big companies don’t give a shit about our health. They give a shit about their profit. I have been to a few Celiac awareness functions over the years, but you know what it is? It’s not so much about celiac awareness, but it’s a gluten free food orgy. It’s table after table of foods that Celiacs should not be putting into their bodies, but because it’s gluten free, hey, it must be good for us, right? Who cares if it’s twice as fattening, three times as expensive?

And look, I’m not saying you should not be eating treats, and I’m not saying you should never process food again. What I am saying is that if you are not healing, stay away from the gluten free foods, at least for a while. Just give your body rest, even for 30 days. Give your body a rest and see if it makes a difference.

And if you’re like me, you will not go back to the way you used to eat. There is no reason at all any of us should be walking around in pain and simply accepting that, hey, that’s the life of the celiac.

So bottom line, if you’re struggling, if you’re not healing, if you’re frustrated, do not accept that that’s just the way it is. Make a change. It could be the whole 30. It could be something else. But do not keep doing what you’re doing if you’re not getting the results. We all deserve to feel good inside.

Hi Gluten Dude…looking for advice.

My son has celiac, which we found out about 4 yrs ago. Now he is 18 and is eating gluten (hiding it). He doesn’t look healthy and doesn’t complain about it.

He says he’d rather die young eating good food than live a long life eating crappy food.

He will eat gluten free when I cook for him it but between dinners, he eats gluten.

He is way under weight and so pale he looks grey. I’ve tried really hard teaching him what the consequences are and how important it is to not eat it but all he does is hide it and lie to me about it.

Wow…this is just a tough one. What 18 year old doesn’t think he’s invincible? When my kids were that age, lord knows I would get the eye rolls when I talk about eating healthy…and pretty much anything else I say 😉

I’m not sure of the kind of relationship you have…though by reaching out for advice, it’s obvious you’re a pretty rocking mom. I just don’t know what kind of sway your words will have.

Have you tried leaving educational materials around the house that he could read? Perhaps send him a link once in awhile that talks about the high risk of cancer, etc. The key is to getting your message across so it’s accepted as love and concern (and not parental nagging).

He’s got to get out of the mindset that eating gluten-free is eating “crappy”. It just doesn’t need to be that way.

But again, I’m not 18.

Boy did I eat like crap when I was young. My mom changed things up (to my horror) and I cleaned up my diet. Yet when I was diagnosed with celiac disease, for some reason I just had to have gluten-free cookies, cakes, brownies, pizza, etc. I paid the price. Now a mom with a 15 year old who is newly diagnosed with celiac disease is asking how to wean her off the junk food that she has been so used to. Here’s her email:

“My 15 year old daughter was just diagnosed and is pissed as all hell and rightfully so. I read your book in two days and loved your voice…I am passing it on to her to read. My question is I know you advise to steer clear of gluten free products and I agree but how can I help my pissed off teen who is not a lover of veggies and has allergies to most fruit? My one side of my pantry is currently a gluten free junk heaven!”

Yes, I do advise not getting caught up in the Gluten free junk food. No, I don’t advise eliminating it 100%, but I do advise eliminating it for the first few months until the body has a chance to heal and then introduce it slowly and then just keep it to a minimum.

When my kids were young, I did not have celiac disease, so we always struggled with the balance of ‘letting kids be kids’ while also educating them about the importance of the food going into your body, and I think we struck a good balance.

One of my favorite parenting quotes is that ‘kids don’t do what parents say. Kids do what parents do.’ I’d like to think we led by example.

I remember when I was 15 years old. I have three older brothers and we ate like crap, and my parents let us eat like crap. Sort of everyone else pretty much in that generation. It’s not like my parents doing something unusual or something dangerous or whatever, but we ate garbage.

How bad did we eat? Well, let’s go over the list. We got Fig Newtons, Chips Ahoy, Nilla Wafers and Oreos. And don’t forget about those prepared meals like TV dinners and Sloppy Joes.

And for breakfast, how about some Count Chocolate, Apple Jacks, Fruit Loops and Frosted Flakes.

Throw in some Suzie Cues, Devil Dogs, Dingdongs and Hostess Cakes. Anything with sugar would do.

Just going over this list is honestly making me sick.

Now my mom was an interesting character. And when I say interesting, I mean really, really challenging. Where instead of talking to us about how she wants us to start eating healthier and the reasons we should be doing it, she would yell at us that we are all unhealthy and then one day, she just stopped buying junk food. Not a bad move, but not well received.

My mom’s heart and mind were in the right place, but her approach was maddening. Of course, that was her approach to a lot of things in life. God rest her soul.

So here’s what I would do. I would talk to your daughter and I would say, “hey, I want to start introducing healthier foods into your diet and here are the reasons why”.

Let her know that her body will not heal unless she eliminates these junk foods, at least for three months. And then reintroduce them slowly.

First things first, hide half the gluten free junk food that’s in your pantry. Don’t throw it away. Just hide it in the basement or something.

Then start leading by example. Cook health AND DELICIOUS meals. Better yet, ask her to prepare meals with you so she can have some input/control.

I like to think and she’ll follow your lead. And then after a few months go by and she’s feeling better, slowly introduce some of her favorite not-so-health foods back into the house.

And then after maybe six months or so, have a talk with her. Ask her how she’s feeling. Not only physically and how her body healing is from celiac disease, but mentally as well.

Does she have more clarity? Is she over the anger of not eating junk food anymore?

If the answer is yes, you’ve done your job.

Just don’t do what my mom did. Guilt and anger don’t work.

Instead, keep the lines of communication very, very open with her and I’ll bet she responds.

Let’s say you have a 13 year old child. And the DAY BEFORE THANKSGIVING, your child gets diagnosed with celiac disease. Let’s say you also have three other children, all under the age of 8. In addition to figuring out this new disease, you also need to worry about cross-contamination. How much should you worry? How do you keep your child safe? That is the topic of today’s blog post.

I received an email yesterday that reads as follows:

Hey there,
My 13 year old daughter was diagnosed with celiac disease the day before Thanksgiving. That was a hell of a crash course for us and heartbreak for her. We’re a family of 6 and I can’t afford to switch the whole family to a gluten free diet. I have a 2,4 and an 8 year old and the biggest concern is cross contamination. I have separate cooking utensils and cleaning utensils but kids are messy. I’m still on information overload. What’s the best way to make sure I’m not !}’#%*~¥ this up? Or maybe I just need to chill the hell out and take it a day at a time? I just want her healthy.

And then a follow up email that said:

See? I’m so jacked up I forgot my damn manners to thank you.
Thank You!

My first piece of advice? Breathe. Breathe. And then breathe again. This is a lifetime journey and you are not going to learn everything in a day. (If you want to try…my book on living with celiac disease is available on Amazon and it’s readable in a day. And yes…this is a shameless plug.)

So…on to the question of cross-contamination. It’s important and it’s a pain. But it is doable. While it certainly would be a lot easier if the whole family went gluten-free, that is a totally personal choice. When I was diagnosed, my kids were young and the Dude Ranch did NOT go gluten free. But we did take a lot of precautions (discussed below).

I will say…it’s pretty easy to keep gluten out of most of the rooms in your house.

The bedroom? Unless you’re into some unusual practices (none of my business), I’d say it’s pretty safe. Bathroom? Should be good. Family room? Iffy if you’ve got kids, but not too bad. Just limit the eating area to the kitchen if at all possible and have the family wash their hands after every meal.

But the kitchen? This is where danger lurks. If cross-contamination is gonna happen, odds are it’s gonna happen here. See that kitchen in the picture up top? That is a celiac nightmare. Clutter is not your friend. The less clutter, the less chance for cross-contamination. Besides the clutter, what other steps should you take? Funny you should ask.

Here is my advice on how to best avoid cross-contamination in the kitchen:

1. Buy separate cooking utensils and cookware to use for ONLY gluten free food. Everything we bought was red to make it easier to differentiate. Things you’ll need include your own toaster, cutting board, colander and pots and pans. Yep…it’s expensive to have celiac. Note that we did not buy separate silverware. Actually, I take that back. We did but realized it was overkill. If the silverware goes thru the dishwasher, it should be fine. If you do not have a dishwasher, get separate silverware.
2. If possible, have one counter in your kitchen completely gluten-free at all times. That becomes a safe-space. I understand this may not be realistic for everyone.
3. Again, if possible, keep gluten-free food separate from food with gluten. In the fridge and freezer, have one shelf for gluten-free good. Try to get one kitchen cabinet for just gluten-free food. It makes it so much easier when things are separated.
4. Get a different colored sponge for your gluten-free dishes. Again, do red to keep it consistent.
5. Put “gluten free” stickers in any location where there is no gluten allowed. This especially helps when you have company.
6. Do not allow any hands in the ice bin. Get a scoop.
7. Watch out for contaminating condiments, butter and the like. If a utensil touches gluten and that same utensil then dips in GF food, it’s no longer safe.
8. Make sure your family is 100% on board and knows the rules of the kitchen. And trust me, getting your teen to stop cutting her bagels on my friggin’ counter is easier than it sounds. Yes…that comes from experience.
9. Don’t be too hard on yourself. Mistakes are going to happen. Learn from them and move on.
10. Be patient and always, always, always err on the side of caution.

In the beginning, this is all overwhelming. Just understand that we have ALL been there and it get’s easier as time goes on. Eventually, it becomes “almost” second nature.

May the gluten-free gods be with you. You got this!!

Oh…and one more piece of advice to the mom who wrote the email. Celiac disease is genetic and if a family member has it, it increases the chance that another one has it. You may want to get everyone tested.