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Nutrifocus

By Nutrifocus
in Coping with Celiac Disease

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Nutrifocus Newbie
Nutrifocus
Posted

Hello!

I am a dietitian and am updating a book I wrote on gluten free diets. I would like to include tips from people who have celiac disease into the book so that those tips can help others with the same medical condition. These can be any type of tip that helps you get through your day easier as someone on a gluten free diet. It can be cooking, favorite food products, eating out, etc... Anything that makes your life easier that you would like to share with others so that they might make their life easier as well. I will add your name to your tip in the book!

THanks so much!

Kim Tessmer, RD LD

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purple Community Regular
purple
Posted

Simple thing to do. Cook extra and freeze it in plastic bags then plastic containers. Label them with food item and the date. Take out of the freezer, cut the bag open and plop it into a glass dish to microwave. No mess and fast. Rephrase it however you need to.

mamaesq Rookie
mamaesq
Posted

I've only been gluten-free for 9 days, but I've noticed such an amazing difference in how I feel that whenever I want something like real pasta or a non gluten-free beer, or just one bite of the grilled cheese sandwich I made for my 2 year old, I just remind myself of how far I've come already and how big of a setback that one bite or sip would be. So far, that has kept me completely on track.

Not really a food related tip, per se, but a coping tip, I guess!

Stacy

mushroom Proficient
mushroom
Posted

Likewise, not really a helpful tip, but I have convinced myself (and it actually is for me) that everything that contains gluten is a poison. My husband and I joke, look at that plate of cyanide or (arsenic). It has reached the point for me that I do not crave all the goodies I used to love, I find them revolting.

zero Newbie
zero
Posted
Likewise, not really a helpful tip, but I have convinced myself (and it actually is for me) that everything that contains gluten is a poison. My husband and I joke, look at that plate of cyanide or (arsenic). It has reached the point for me that I do not crave all the goodies I used to love, I find them revolting.

I was in the check out of whole foods and the person behind me had a clear plastic bag of a dozen bagels. I was actually disgusted by the sight which amazed me as I loved bread before my diagnosis. I wonder how many gluten-free people have cravings now vs. those that are repulsed by the forbidden foods.

Treen Bean Apprentice
Treen Bean
Posted

Even thought there are gluten free noodles, etc... readily available. There are naturally gluten free products that can easily be substituted. ie: Use a roll of prepared polenta in place of lasagna noodles. Simply cut it in 1/4 inch slices and layer like noodles.

Good gluten free brands include: Tinkyada Pasta Joy; Kinnikinnick; Pamela's baking mixes; Chebe bread mixes; Laura's Gluten Free Rolled Oats

Triumph Dining Cards are invaluable when it comes to eating out. These laminated cards clearly list foods containing gluten, questionable foods, and safe foods. Better yet, these cards are cuisine specific and multilingual. All cards are written in both English and the native language of the specific cuisine.

Restaurants with gluten free menus include: Outback Steakhouse, Maggiano's, PF Chang's; Carabba's; Legal Seafood... to name a few

Experimentation is the key to finding products that fit your specific needs and tastes. Trial and error and learning to laugh at your mistakes are essential.

zero Newbie
zero
Posted

Forgot to add my tip that for a celiac who doesn't like to cook, having a rice cooker with a timer has been a life saver. I load it up in the morning and it is ready when I get home.

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RoseTapper Newbie
RoseTapper
Posted

It used to be a problem when co-workers would invite me to lunch because they would invariably choose to go to a Japanese restaurant = bad news for a celiac when you're also allergic to seafood. I now keep wheat-free Tamari sauce in the fridge at work and bring it along to use on the salad and meats. The restaurants never protest. Likewise, when my family wants to eat Mexican food, I bring my own corn tortillas and gluten-free beer.

henny Explorer
henny
Posted

I am finding that often my savior is fruit.

If I'm stuck on the road or end up in a cafe, I can usually score a banana or apple. It seems like every gas station, Starbucks, and convenience store in my area has a few pieces of fruit for sale. It's something that I know is safe to eat, and it's good for me too :)

frec Contributor
frec
Posted

In restaurants I usually order some sort of meat without the sauce or pasta or whatever. Restaurants are noisy and waiters are often young and in a hurry. The best way to really make it clear to them is to ask for BARE NAKED chicken, or BARE NAKED pork. Usually they are embarrassed or they giggle but they do get the idea. Tell them to cook it in a separate pan and specify what oil they can use, if any. And give good tips, so they are nice to the next allergic/celiac person who comes in.

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      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

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    • catnapt
      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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