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Need A Little Direction

katfshh

By katfshh
in Coping with Celiac Disease

Recommended Posts

katfshh Newbie
katfshh
Posted

Hi,

I am new here, but I have been gluten free for about 2 years. Although, I was never offically diagnosed. I did self diagnose and am 99.9 % sure I have Celiac. I am an RN and have had many patients with the disease. I have had issues my entire life, which was always diagnosed as IBS. I remember being a child and my mom taking me to the doctor and going through all sorts of tests, including upper and lower GI's. I have had chronic constipation my entire life, gas, bloating, depression, mood swings, bouts of diarrhea at times for no real reason. I get canker sores in my mouth all of the time, but as soon as I went gluten free, I didn't get one. When I accidentally eat gluten, the canker sores, gas, and bloating show up within hours. We eat out a lot, and some places are helpful, but most are not. There are times when I just say, "who cares" and eat something that "might" have gluten. Sometimes I don't get symptoms, but a few days later I am miserable or severely constipated. My problem is mostly when I am at work. I go to the cafeteria and it seems no matter what I get there, I get symptoms, even if I eat a salad from the salad bar and choose carefully and only put oil and balsamic vinager. I can't figure out why am hardly ever completly free of these symptoms. I wake up in the mornings feeling good, but each and every day as the day goes on I feel like I have poisioned myself.

Does anyone have any ideas on what I should do to start from scratch and really figure out why I am almost never completely free of these symptoms?

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kareng Grand Master
kareng
Posted

Hi,

I am new here, but I have been gluten free for about 2 years. Although, I was never offically diagnosed. I did self diagnose and am 99.9 % sure I have Celiac. I am an RN and have had many patients with the disease. I have had issues my entire life, which was always diagnosed as IBS. I remember being a child and my mom taking me to the doctor and going through all sorts of tests, including upper and lower GI's. I have had chronic constipation my entire life, gas, bloating, depression, mood swings, bouts of diarrhea at times for no real reason. I get canker sores in my mouth all of the time, but as soon as I went gluten free, I didn't get one. When I accidentally eat gluten, the canker sores, gas, and bloating show up within hours. We eat out a lot, and some places are helpful, but most are not. There are times when I just say, "who cares" and eat something that "might" have gluten. Sometimes I don't get symptoms, but a few days later I am miserable or severely constipated. My problem is mostly when I am at work. I go to the cafeteria and it seems no matter what I get there, I get symptoms, even if I eat a salad from the salad bar and choose carefully and only put oil and balsamic vinager. I can't figure out why am hardly ever completly free of these symptoms. I wake up in the mornings feeling good, but each and every day as the day goes on I

Does anyone have any ideas on what I should do to start from scratch and really figure out why I am almost never completely free of these symptoms?

Until you choose to go gluten free and do it, you won't know if you will feel better. If you get sores, gas & bloating eating gluten, and that is not a feeling you like, stop cheating and eating gluten!

After you have been really gluten-free for a few months, then you can tell if you need to eliminate something else.

katfshh Newbie
katfshh
Posted
  • Author

Until you choose to go gluten free and do it, you won't know if you will feel better. If you get sores, gas & bloating eating gluten, and that is not a feeling you like, stop cheating and eating gluten!

After you have been really gluten-free for a few months, then you can tell if you need to eliminate something else.

I try to order items that are gluten free. But, often the server is clueless. If they have no clue, I read the menu and pick something that most likely is gluten free, but you never really know. So, I am sure I get exposed from time to time without knowing. I realized recently that there is flour on the shredded cheese at the salad bar. I also realized the omelets I order at the grill are sometimes made right after they make the person in front of me pancakes. I just am frustrated and I have 4 kids fianc

Roda Rising Star
Roda
Posted

You really need to go back to basics and eat a clean diet of fresh fruits, veggies, meats, etc. In order to get rid of cross contamination issues it probably will be necessary to not eat out and not eat at the hospital cafeteria. Unless you specify your needs about CC they won't have a clue. And even then they may still not get it fully. I wouldn't trust our cafeteria to cook me a gluten free meal at all. I also get questions from the nursing floors about what their occasional celiac patient can eat(I seem to be the one everyone comes to for questions etc.) So a lot of my coworkers don't understand all what gluten free entails.

I can understand about being busy. I too work full time as a radiologic/ct technologist, have kids and a husband. It is very time consuming and tiring and a lot of the time the last thing you want to do is cook. However, we hardly ever go out to eat and I literally prepare everything at home myself. My house is 90% gluten free. My husband is the only one that has gluten in the form of cereal, bread and crackers. My two kids are gluten free also. Hubby is great and he has not cross contaminated us with his few items. We have rules and everyone follows them well. If I am going somewhere for any lenght of time, I take food/snacks with me. I pack lunches for my two boys and myself almost everyday.

I think when you get serious about being truely gluten free, you will start to see some improvements in your symptoms. Welcome and I hope you get things sorted out.

BabsV Enthusiast
BabsV
Posted

If you don't have a crockpot, get one. Then use this site Open Original Shared Link for tons of great recipes. The blogger's daughter has Celiac so all recipes are gluten-free AND she does not like anything that requires a lot of prep. She's big on dump the stuff in and forget about it! I loved this site (and her cookbooks) before I was even diagnosed with Celiac Disease. Nothing better than spending 5-10 minutes in the morning and having dinner ready when I come home. And there is usually enough for leftovers...which can become your lunch the next day!

sandsurfgirl Collaborator
sandsurfgirl
Posted

Get the gluten out of your bathroom cabinet. Use shampoos and conditioners, lotions and soaps that don't contain wheat ingredients. They almost never have barley or rye. Check your lipsticks too. Shampoo and conditioner run down your face in the shower and get in your mouth. Gluten stays on your hair and skin and gets on your food when you eat or prepare it. I did not start feeling better until I did this.

Check all labels before you buy because you never know if they will decide to put wheat in something on a whim, or maybe just one flavor will have wheat, but here's some of the products I use.

Biolage and Enjoy hair products

Bath and Body Works shower gels and lotions

H2O Plus face products

Suave shower gel for handsoap (I have very dry skin on my hands)

Mac longwear lipstick. Some Mac lipsticks do have gluten so you need to make sure.

Is your kitchen shared with gluten? Are you getting CC at home and then getting symptoms later in the day?

Did you get rid of plastic and wooden utensils for cooking?

Do you have a dedicated strainer for pasta?

Dedicated gluten free toaster?

Never assume something is gluten free when eating out. You'd be surprised at how many Mexican restaurants put soy sauce in their marinades or flour in weird things that shouldn't have flour.

You'll find what's glutening you if you look carefully. If you can have a gluten free home that's best. It's very hard to have a shared kitchen and stay safe. The gluten eaters can just have gluten outside the house. It's just too hard to remember to keep the peanut butter knife clean, etc.

GFinDC Veteran
GFinDC
Posted

Hi Katfshh,

First off, welcome to the site! It's good to have you here. :)

It seems you have a pretty good idea of where the problems are already. The cafeteria is risky. Do they understand gluten-free food prep? Are they making cakes and breads and other foods with flour in the same kitchen as your salad? Flour is a fine dust and can stay airborne for a while. It could settle on your salad bowl or the utensils in the kitchen. You had it right with the grill too. Most cooks aren't going to cook your food in a separate clean frying pan with clean utensils unless you ask them. So pancakes and then omelets on the same surface with the same utensils is a pretty sure contamination bet.

Can you bring your lunch to work? A simple lunch could be a banana and fried chicken breast. Or an apple and Lara bars. There are simple meals that don't take a lot of prep. You can cook a lot of food at one time and freeze portions also.

If you only eat food you cook yourself from scratch you will know what is causing the reactions. It will be something you cooked, so you can identify the item.

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