Hi All, I searched the forum earlier and realized there was a celiac discussion that went on here about a year back.
I’ve just got some questions not answered by the previous thread.
Has anyone out there got dermititis herpetiformis, the skin variant of CD? (i.e. no GI symptoms but just the rash that appears?) If so, how do you deal with it?
How do you guys handle going out to eat? Travelling for races? Staying in hotels with others on the other side of the world? Social situations and events ?
I’ve yet to be diagnosed (appt next week), but my rash is responsive to diet (i.e is clearing with no gluten) and my physician and dietitian friends think I’m bang on with my suspicions.
I’m almost a dietitian (1 more yr), so I know the ins and outs of what is and isn’t allowed, but textbook/clinical knowledge is nothing without experience. So I leave that to you…
Many thanks!
I rarely get it now, but used to before avoiding gluten like the black plague it is. Then again, I have other symptoms when poisoned with that stuff too, so…
Anyway, I don’t know any way to deal with it other than just try not to scratch it.
As for travel, if I’ve my head on straight I pack some food for myself in case of emergencies. I try to travel with people that are aware that I have dietary restrictions and are willing to accommodate them by choosing places to eat that also have safe menu items (when in doubt, salad with no dressing or dressing with a prayer, or meat and veggies). I’ve yet to go overseas and try to keep from gluten poisoning.
The hardest thing for me is the morning of races away from home. There never seems enough time to stop somewhere for my “normal” grits and eggs breakfast, so I have to bring gluten-free cereal and soy milk and pray there’s a refrigerator.
I’ll have to look for that old thread…as I just took the blood test for it, and I suspect it will be positive as my symptoms have cleared dramatically and quickly on a no gluten diet. I must admit though I love my bagels, or used to, it hasnt been that hard to resist as I feel SO much better that just looking at bread, well I know its like a poison for me so I do not feel tempted at all as I feel so much better. The GI and rash has cleared totally. I really am not into the gluten free baked goods, etc as I think its just another form of processed junk, and way more $$$ so I have been focusing on what I like to eat anyway that happens to be gluten free…the exception is I buy Bobs Red Mill gluten free oatmeal as I love my oatmeal!
For energy Ive been eating lara bars during rides and runs…lots of sweet potatoes (roasted), breakfast is peanut butter and bananas, yogurt, oatmeal…also I really do not like rice very much but I like rice noodles (brown ones)…lots of vegetables, fruit, chicken, salmon and eggs and cheese. I am new to this and so I am NOT sure what I am doing so any help is also appreciated!
Tofu scramble is good stuff and should match up with some of your favorite foods. Experiment. Watch out for the unexpected places gluten crops up. Soy sauce, for instance. Unless you get the stuff actually made from soy. Most of it is made from wheat. You’re going at it right though. Focus on what you like to eat that isn’t full of poison. From there you can experiment with new recipes to expand the fun. I’ve discovered some great new ways to cook old favorites (like cranberry sauce and venison together in a croc pot till it’s falling apart… a tad of catalina dressing finishes the flavoring) and those tofu scrambles. I’ve gotten into a lot of oriental foods too.
I’ve found that the gluten free baked goods are ok for occasional treats (cookies and brownies anyway) but I don’t care for them much either.
what is tofu scramble exactly? how do you make it? another thing I have found out is that a lot of eating (this might apply to a weight loss thing also) is out of habit. Habits are made and can be broken.
I really thought I could not go on without bread, whole grain healthy bread at lunch, my post big workout bagel, my pita and hummus, etc. all snacks and meals that were the ‘go to’ ones that were always yummy and I looked forward to them. I found out a lot of my eating was more of a habit, and then when I started to replace them with other things that made me feel SO good, I didnt miss it anymore. Actually its been great I think for my diet overall, I really had to kinda shake things up and get out of my food rut, and this time the motivation was that I finally found out what made me sick. Being sick like that is a great motivator, when you consider that the only thing to avoid it is to avoid certain foods, so in that way I do not consider this a hardship at all, as it is relatively easy to treat.
Extra firm tofu scrambled with various veggies and spices cooked like scrambled eggs. I started with this recipe, but I don’t usually get fennel so I started experimenting with the basic garam masala and tofu base with maybe green onions and leeks or kale and baby vidalia onions. Mostly I jut play with the concept and what I have on hand. I think this last one I tossed dandilion leaves in with baby vidalia onions and a handful of cranberries and chopped bell pepper.
I’m finding the same. A lot of my eating has clearly been out of habit, because when there’s nothing there (I live/love to bake so there are always fresh muffins/cookies/teabiscuits) around, I just am not eating the same way. And I mean, the GF cookies I bought are really nothing to write home about!
Soy Sauce? Oh no… I didn’t know that one was on the off list ( I really haven’t investigated the list that closely. I had teeth removed the other day and have been on soft foods since GF so I haven’t gone far past rice pudding/yogurt/milkshakes, etc).
One of my best friends is gluten-intolerant and she makes some pretty yummy baked goods (other than the hardtack she made for an 11-day canoe trip we did, but to be fair, it was good for hardtack, being gluten-free was kind of besides the point), so after reading that you didn’t like the store-bought ones I asked her where she gets her recipes.
She said in her opinion the best place to start would be any cookbook by Bette Hagman - that they have tons of great recipes (the Gluten-Free Gourmet series). Also to check out the internet for recipes but that a lot of those recipes are unnecessarily complicated.
And she sent me this:
As a bonus, here’s the easiest peanut-butter cookie recipe in the world. It’s both gluten-free and one that anyone would like.
2 cups peanut-butter
2 cups sugar
2 eggs
Combine. Roll into balls, place on cookie sheet and flatten with a fork. Bake 350F for 8-10 mins. Let cool on the sheet for a few minutes before removing to a rack.
Tada!
thanks! I am going to look for those books…funny you posted that recipe…I made those just the other night (1 of everything) and we ate almost the whole batch…while watching The Biggest Loser ( I always want to snack during that show) I also add cinammon. So yummy and strange how they work out, but they do!
As far as training, fueling, recovery, and adaptation…I could write a book. Except that I’m a sucky writer.
Adaptation to anything new takes time. Adaptation to a diet so vastly different from the mainstream …PLUS adding your unique training/caloric needs (double whammy) …can not be rushed. It may take a few years. Do not get upset with yourself if it doesn’t happen instantly. Most of the books and blogs you’ll read about adapting to GF living, are written by inactive people who live for food to the exclusion of other interests. Forge your own path.
Slowly, one day at a time, build a repertoire of foods that work for you. Amy’s GF mac and cheese, Rice Chex, whatever it takes. eat a damn tree full of bananas on race day if that’s what it takes to stay safe. You’ll figure out how to make it more palatable over time – for now you just want to keep on training and racing. PM me and I can send you or post a list of what’s helped us a lot.
I have traveled to races, even overseas. My family also has a life threatening food allergy in the mix. I would advise to start with a local trip, pack a cooler and bring your own microwave. What you bring in that cooler will depend on you. If you are training for IM you may want to consider the local food resources in that decision. A large city might be better than a charming town like LP or CdA.
Besides Lara Bars, Hammer Bars are also GF. There are a few others. Luckily, most in-race fuel such as Hammer and Infinit , are GF. Remember, training and racing are a privelege, and some of us have to work a little harder to be in the game at all. I am one of those people too.
Social situations are a little trickier. I am still working on this one. I am leaning towards the philosophy of eating before the event, and downgrading expectations of others, as they can never know what a food allergy/intolerance is like without having one personally.
thanks WeRide great post.
In a way I am really happy and relieved that there is an ‘answer’ for me that is simple, on paper at least. Just dont eat gluten. No meds, no therapies, etc. But I am finding that my energy levels while training for a marathon are not the same. Now Ive done several IMs and 50 milers, and so have my nutrition down. Well I used to. No more pretzels from the aid table, etc. I havent done a long race yet like this and dont know what to expect, but it seems my new eating is not giving me the same energy response during long runs. So this will take time. Yes its a privilge and so interesting what you said about all the blogs,etc out there being from people who are inactive in comparison to what we do. I find a lot try to replicate the gluten filled stuff, and when you think about it, that is really not optimum food to eat in the first place,and adding extra sugar, extra processed rice flours, xanthan gum, etc to me sounds worse than the orginal version!
But I still love those peanut butter cookies! made another batch tonight! yes its great with a hint of cinammon, not enough to make you go …hmmm there is cinammon in these cookies!
I’ll pm you for the links …thank you!
You may also want to send Jonnyo a PM. He keeps a blog on and off and has Chrohn’s disease so he deals with the gluten free diet issues as well. I’m sure he’ll be happy to pass along any info or advice he has.
I accepted a while back that I would have to carry my own nutrition on any event or race. There is no guarantee that the aid stations will have anything you can have as celiacs, and if you’re particularly brittle even the things that might be ok can have cross contamination from the reaching hands. Someone eats a sandwich, gets crumbs on their hands, grabs and handful of chips, you go for those potato chips and… you get the crumbs too.
I may look funny with my extra nutrition all over, but I usually will have enough to make it through whatever distance I’m doing.
That said, if you’re used to grabbing a handful of pretzels, you could look into grabbing something like a soyjoy (though I realize the taste isn’t ideal for everyone). It’s at least more carb based and might make you feel closer to those pretzels. It’ll take some experimenting though.
I get the rash.
I’ve got an “industrial moisturiser” which helps control it considerably It’s pretty much diluted parrifin wax. No naked flames please.
On rare occasions my skin will open and i’ll seep plasma. I’ve got a steroid cream for that. No drugs tests please.
How do you guys handle going out to eat?
Steak ‘n’ chips.
A good chef should make sauces with corn flour, so that’s usually ok. You do have to ask though. Same goes for enchiladas etc, that are supposed to be corn, but are often made using flour as it’s cheaper.
Travelling for races?
Trickier, as often when traveling, people stop for sandwiches and snacks. I generally make do with potato chips, or find somewhere I can have a proper sit down baked potato, salad, or some such.
Staying in hotels with others on the other side of the world?
As above, though the restrictions on traveling with liquids makes going anywhere without checking luggage a bit difficult. Not a problem if travelling with the bike, as I just stuff my misturiser into the bike box.
Social situations and events ?
No beer, whiskey, or cakes please.
Neil - Sorry about the rash. That is one bullet my family seems to have dodged with the celiac. :-X
If you love your potato chips and actually *enjoy them after a race, then rock on. If you would be interested in a couple of portable suggestions , with a little more nutritional value maybe , that you can toss in your gear bag, I’d be happy to post them. I’ve been packing three GF lunches a day for several years now.
Best of luck and health to everyone. It’s challenging.
Social situations and events ?
No beer, whiskey, or cakes please.
wine is still good right? hope so as that is my big vice and the cheese that goes with.
If I may say so also potato chips not the way to go. what about some nuts and dried fruit? you can find that at most any store.
If you would post suggestions, that would be fabulous! I’m new to this and am not doing too badly (MSc in Nutrition is being put to good use) but am astonished at the things that aggravate the rash. I was doing so well until a couple of tbsp of chocolate chips the other night…
