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Diagnosed A Few Months Ago


MelissaBe123

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MelissaBe123 Newbie

I've had a painful stomach my whole life. A few months ago, I decided it was time to go to the gastro and see if something was actually wrong with me. After only a few tests, they found out that I had celiac disease.

My whole life has changed.

I have lost weight. Gained energy. Gotten healthier. Changed my whole diet of course, and had to explain my diet to a lot of people.

I was just wondering if there is anything I should do to be more careful in not getting gluten in my diet. I already look at labels and research, but am I missing anything? I just want to make sure I am prepared for whatever celiac disease can throw at me.

  • 1 month later...

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captaincramp Newbie

I've had a painful stomach my whole life. A few months ago, I decided it was time to go to the gastro and see if something was actually wrong with me. After only a few tests, they found out that I had celiac disease.

My whole life has changed.

I have lost weight. Gained energy. Gotten healthier. Changed my whole diet of course, and had to explain my diet to a lot of people.

I was just wondering if there is anything I should do to be more careful in not getting gluten in my diet. I already look at labels and research, but am I missing anything? I just want to make sure I am prepared for whatever celiac disease can throw at me.

Make sure stuff isnt cross contaminated, as someone jusyt told me that Quaker Rice Cakes are often contaminated with wheat from other parts of the factory.

sb2178 Enthusiast

Do you have your own toaster, keep bakery/flours in a separate area of the kitchen? That can help too.

Kitchen equipment that has lots of texture (like colanders/holey items, wood, scratched plastic or nonstick) should not be shared because they are very difficult to clean.

If you are having problems, look at things like shampoo, make-up (you or a significant other), etc. Any contact with other people could be a problem-- are you kissing a kid's cheek after they eat a wheat-based sandwich? Sharing condiments?

If you feel okay, and your first round of bloodwork comes back clean, you must be getting it right!

GFinDC Veteran

...

I just want to make sure I am prepared for whatever celiac disease can throw at me.

Watch out for the furry flying kittens then. Oops, wrong disease! :)

A whole foods diet is a good way to go. Some people are low on some vitamins at first, so you could check with your doctor on blood tests for vitamin levels. Avoiding gluten-free baked goods to start can be helpful, at least until you get used to the diet for a few months. You also should consider otehr possible food intolerances, like dairy, soy etc. The sometime show up after being off gluten a while.

Skylark Collaborator

The more you cook fresh, whole, gluten-free foods for yourself the better. I don't have to read the labels at all when I make my own soup. ;) You eat healthier, more nutritious food, and there is less chance of gluten sneaking in. Minimize eating out, and stick to places you know are gluten-free.

If your life has turned around, it sounds like you're doing it right. B)

lukester Newbie

Nice I see you have been reaping the benefits so far. I to have experienced many of the benefits that you have over the course of one week in to this new lifestyle. Like skylark said the best way is to cook from scratch since you know what you are putting inside.

sannep77 Newbie

One piece of advice would be to not be scared to eat in restaurants! More and more people are hearing about the disease and are making adjustments in there restaurant for us people with special diets...and don't be afraid to ask. I went into TGIFridays one night and wanted to eat with my friends....they dont have a gluten free menu..but they cleaned the grill and made me a steak without seasonings and fresh broccoli without seasonings! I was so excited to get to eat with my friends. So don't let your disease hold you back...I did for the first 6 months of it...I was scared to eat any where...because I didn't trust people! Thats no way to live:) Have fun! But ask lots of questions and be careful. My friends like the special treatment our table gets now that I have to ask so many questions!lol


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  • 2 weeks later...
KevinNiemann Newbie

The ideas of cooking all whole foods are great. It's good to watch out for certain meats, mainly deli meats because they can have MSGs or modified food starch. It's also good to watch out for glutamic acid, hydrolyzed vegetable proteins, and anything with maltodextrin. I know that's a ton of stuff for you to watch out for, but you'll feel a ton better by staying away from that stuff. Hydrolyzed veggie proteins and modified food starch don't always have gluten in them, but if you don't contact the company to find out for sure, then you should skip those products.

Best of luck to you, fellow G-Freak :D

Kevin

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    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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