Tuesday, July 7, 2015

I Thought Celiac Disease Was a Joke. I'm an Asshole.

I will begin by admitting I'm an ass. I usually eyeroll the whole "I can't eat gluten" nonsense. I am aware some people have the actual disease and can't for stomach reasons but the sheer amount of people that claimed they have this disease bewilders me. Even the New York Times wrote about it here.

 When Amelie had horrible eczema over the winter and people suggested I cut out dairy I laughed hysterically. Call me selfish and ignorant but that's just how I felt. The joke is really on me b/c my friends that have cut out gluten or dairy look WAY better in a bikini than me. I just love food and hate vegetables so I'm pretty narrow minded when it comes to restrictions in diets. Call me a toddler.

Well a few weeks ago Max developed these red bumps all over. We assumed it was Chiggers (did you know nail polish is NOT the remedy?) and covered him in Calamine lotion. 
By Saturday morning it got so bad that he had to go to the urgent care. I got a call from him while I was at the pool with the kids letting me know he had been diagnosed with either SCABIES or SHINGLES. Ummmm Scabies? What? They said he probably got it from the gym and that we had to coat all the kids in this $80 prescription lotion and wash our entire house. Scabies is just like bedbugs...it is a tiny mite that burrows. 

Well 14 loads of laundry and one pissed off mama we were on our way to getting healthy. I made him go to the dermatologist on Monday just to make sure.


The dermatologist laughed his ass off and said that NO, it wasn't Scabies. It was an allergic reaction to something, probably detergent. They took two huge biopsies and sent Max home with the miracle drug prednisone and said to not eat gluten for a week just in case. 

Father's day dinner Max indulged and rewarded himself with a hefty dose of pasta....and three days later this......

The next biopsy showed that Max has Celiac Disease presenting as Dermatitis Herpetiformis . Here is just a snippet of what he is feeling: Intense itching. A burning sensation. Clusters of small blisters that persistently break out on the elbows, knees, buttocks, back, or scalp. These symptoms are the hallmarks of dermatitis herpetiformis (DH), a skin manifestation of celiac disease. DH affects 15 to 25 percent of people with celiac disease, and these people typically have no digestive symptoms of the disease.

Max is a foodie. His father was an Executive Chef and Max learned everything there is to know about cooking from him. He also loves Bourbon...(see Bar)

To say that this diagnosis has wrecked his world is an understatement. I know that sounds overly dramatic to anyone out there battling something more severe, and I apologize, but this is a big adjustment for us.

They now have him on a leprosy medication that makes him feel terrible and the rash still hasn't subsided so he is slowly getting back out in the sun. I have bought a few Gluten free cookbooks from friends and already placed an order for gluten free soy sauce. We are slowly learning!

If anyone has any tips they are gladly appreciated. He also turns the big 40 this Fall and our trip on the Kentucky Bourbon Trail is probably out at this point. Caribbean? Palmetto Bluff? Skiing? 

Nurse K


  1. http://www.glutenfreeregistry.com/gluten-free-state-search.do?state=NC&multipleLoc=Y&inclAccommodates=Y&city=Charlotte

  2. Bourbon is fine - the distillation process destroys the gluten. Beer is not unless specifically marked gluten free.

  3. Don't give up on traveling. Just shift your focus away from eating out and stay in a place where you can cook your own meals. And rather than buying all of that processed GF food which will cost you a fortune, cook from whole foods. It tastes much better and no-one will feel deprived. A big fat rib-eye, grilled or baked potato, grilled corn, veggies… see where I'm going with this? :) It is a tough adjustment but ultimately a good thing. It has definitely opened up our food horizons.

    Some of my fav cookbooks:
    The Gloriously Gluten-Free Cookbook (Italian, Mexican, Asian)
    The Nourished Kitchen
    William's and Sonoma Farmer's Market Cookbook
    Salad Sumarai

    Good luck!

  4. Bourbon is ok, but it's the barrels where the problem lies. Some distilleries will tell you but not all. We went on the Bourbon Trail in May and Woodford told me some coopers spray a wheat paste inside the barrels to make an even char. A few told me they did not do this. Here are the definite safe bourbons - Woodford, Makers Mark, and Buffalo Trace (they actually called the coopers to question). The others either could not tell me or would not tell me.
    I too have HD was diagnosed about 15 years ago however no one told me the celiac connection until six years ago! Good luck and never cheat!
    GF Adventurer gave great advise on traveling. We stayed in Lexington at an airbnb on a horse farm. You meet locals making the trip so much better! Lexington is a terrible place for GF food! Still we had a blast!
    Good luck!

  5. I don't drink, so I can not give any advice on the Bourbon side of things. Travel how ever, is possible. If you want to go to the Caribbean, I would say do a cruise. Most cruise line offer gluten free option and go out of their way to make sure you have the same food as everyone else. I just returned from a cruise to Alaska and I had a great time. They had gluten free pasta, bread, pizza (although their pizza was not good), and desserts.
    Keep up your research and you will learn what you can and can't eat. Once you have that done, life gets a lot easier or as easy as it is going to get.
    I agree with Sandra, Don't Cheat! It is just not worth it.

  6. Tomorrow is my 34th anniversary of living with celiac disease and being gluten-free. Changing your lifestyle at the beginning is the toughest part, but he will get through this and will start to feel better. The whole gluten-free diet gets easier once you get used to looking at labels.

    As for travel, don't let celiac stop you! I have been to 18 countries, 3 continents and almost 30 states all while being completely gluten-free. Check out my website www.glutenfreeglobetrotter.com for travel tips.

    Hang in there and reach out any time. I have a lifetime of experience, literally!

  7. I'm so sorry he has this but so glad you have the correct diagnosis. Last year, I was diagnosed with an autoimmune disorder which causes arthritis in my spine and lumps on my lower legs. About half the people with my condition can control it with diet, and, luckily, I'm one of them. I cannot eat gluten, grains of any kind, or nightshades.

    There are so many great resources these days - websites, cookbooks, and recipes on Pinterest. I won't sugarcoat it - it's a lifestyle loss but you do get accustomed.

    As for travel, the Disney properties are great about accommodating food allergies.

  8. Never stop travelling. I'm lucky as I developed at taste for fine Cuban rum. I am happy to hear that there are choices when it comes to Burbon as I was always afraid to give it a go. I worked 30yrs in a steel mill and when I left I thought sore hands was my parting gift. We stopped eating gluten and 3 months later no more pain, such a blessing. I have learned to love sorghum & millet as moist an flavourful grains and all the lovely breads they make. When we started our journey into a gluten free life I never imagined how many places wheat has been used. Ever wonder why the pepper shaker on the diner counter looks a little grey, some brands use wheat as a flow agent. For reasons like this we have become consumate label readers and much more discerning in our tastes. You to will discover the difference between being overcharged for the words gluten free while many of the other ingredients in the packaged food you buy are the same junk (methyl cellulose0 as in most main streams items


  9. I've found a wonderful flour sub, nameste makes 'perfect flour' it's the closest thing to wheat flour I seen. Store bought GF "bread" is mostly a joke, Franz has one that's pretty ok, and be careful of seasonings, the prepackaged ones, they have hidden gluten. Oh! Some like "Johnny's" a lot of people use it including restaurants and people don't even think about it. I've had DHFOR over 10 years, and been GF for 2 years, I still get it even being "GF" (it's really hard) the DH is just terrible. Good luck to you, it's definitely a struggle, but you can do it!

  10. King Arthur GF chocolate cake is the absolute best cake mix ever. The Americas Test Kitchen Gluten Free cookbook has a recipe for a GF flour mix that can be used in anything, but specifically good in their recipes. Their pie crust is excellent. As with all of their recipes, they are not one step super simple...but awesome to be able to prepare anything you are really missing. Make sure you call ahead to restaurants to check if they can accommodate if they don';t have GF menu (and ask about separate GF friers). The only time I get sick is when I eat out and they don;t have a GF menu or it's a chain sort of place with no clue. Nice restaurants with chefs can usually manage well. Get the Find me GF app and also can use yelp and search for gluten free. FYI A lot of fast food fries (McD) have wheat/gluten seasoning. Carry GF meat sticks (like CHOMPS) and GF granola bars for snacks on the road (Kind bars, Exo, sun butter bars etc)

  11. Hi - I'm 43 and diagnosed with DH 6 months ago - it is awful. Really awful. I totally empathize. I was totally against fad diets and what I perceived to be "picky eaters". Just so you know it can take a long time to get better from DH (I'm on month 7 strictly GF - still itchy here and there - not excruciating as it was, but bothersome - it is also two steps forward one step back. Also I have found that while a lot of the stuff we are dealing with is in common with other "traditional" celiacs, some of it is specific to people with DH. It seems we get a relapse of DH way faster than a regular celiac may get "glutened". The good news is you get better from a flare up faster too as you get further into the GF period of your new life. I suggest he joins this great closed FB group called "Dermatitis Herpetiformis Group - You are not Alone" - I find it comforting to be virtually around others with DH. Good luck and thanks for sharing.

  12. I've been dealing with celiac and eating gluten free for 8 years now. The one piece of advice I always give newcomers is to avoid the replacement foods for a little while. The cookies, bread, etc. The bread will never taste good as long as you remember what bread tastes like. It's once you really miss bread, you'll take whatever you can get, and that Udi's will taste so much better. Also, the breads go moldy a lot more quickly, so you might want to freeze half a loaf as soon as you get it if your husband is the only one eating it.

    Oh, and I drink bourbon, ryes, whiskeys all of the time. No problem.

  13. Check out the app "Find Me GF". It really helps find GF friendly restaurants nation wide. It's like a GF version of yelp. Good luck!

  14. We went to Lousville for Easter weekend this year and I drank bourbon at several places with no problems at all. We are planning to go to Lexington this fall and try other places. I am not very severe so if there is wheat paste in the barrels it did not bother me at all. We also went to Portugal and Spain less than three months my diagnosis with celiac and I did fine. We travel in the states frequently as our families are in other places from where we live and it is just a matter of being careful and paying attention. At least for me. Good luck to you!

  15. I have been eating Paleo/GF for around 5 years, and my advice would be to get back to whole, real, unprocessed foods (fruits, veggies, proteins, nuts, seeds, etc) to reset your body. The GF alternatives could be introduced later, but its still likely not "real" food. I would definitely get a Spiralizer to make things like sweet potato or squash zoodles. My husband and I love food and cooking, too, and there is definitely a way to still have fun and be creative in the kitchen without eating gluten! Think of it as a new way to learn about food and cooking!

  16. The good thing about Coeliac disease is that it isn't a rare disease. There are stacks of gluten-free products in supermarkets, including bread, pasta, biscuits and chips. There are also cake mixes you can buy and only require a couple of eggs and milk or water. You can add fruit to them to make them really special and they're less expensive than buying individual items.

    I have a blog on living gluten-free which you might be interested in. I write about many things but this is one topic I feel quite passionate about!

    Here is the link:


    Good luck with it and so glad he was finally diagnosed. :)

  17. Katherine, You have to call Leslie and Emily. They can really help Max and give you some gluten free Ideas that are actually gourmet. At least it is better that being both gluten and dairy free!