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And I Was Feeling So Good!

mamabear272

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mamabear272 Explorer
mamabear272
Posted

I was out of town this weekend. Hubby had to work and we tagged along and visited some family and did some sightseeing. I don't know what it was but something made me sick. I explained to everyone that my food need to be prepped in clean pans with clean utensils. I think though, that despite my best effort, something happened. I am beside myself! I don't feel well, I've been in the bathroom most of the day, I'm emotional, anxious and crabby.

Am I going to have to go the rest of my life not going anywhere?!? I did all I could to not get "glutenated." I explained my condition and what they needed to do. People don't understand the condition, nor do they care to learn. I am so upset!

I saw my GI doc today and she said if I don't start feeling better in a week or so, that she's going to run some tests. I expect that now that I'm back home, I'll be ok though. She also ordered a dexa scan (bone density scan) and bloodwork.

I also checked to make sure and when I was in the hospital and she did the endoscopy that she did biopsies of my small intestine and she confirmed that she did and at that also showed the celiac. Really, I wasn't too surprised. I figure that if it showed in the blood test and I started feeling better after I stopped eating gluten, that was good enough for me. For now I'm just waiting to feel better again!

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Diane-in-FL Explorer
Diane-in-FL
Posted

There are lots of ways you could have been glutened unfortunately. Crumbs on a cutting board, your food coming in contact with theirs. You really can't trust anyone to prepare your food if they don't care to learn about your condition. If you go there again, can you cook for yourself without rocking the boat too much? I haven't gone to anyone else's house to eat in months. Cross contamination is just too risky. It is discouraging, isn't it? I hope you feel better soon.

ravenwoodglass Mentor
ravenwoodglass
Posted

I hope you are feeling better really soon. It can be hard when your away from home but you just need to be prepared. If your going to another city try putting the city and gluten free dining in a search. I was really shocked how much came up when I did that for my own home town recently. That way you will know what places have the best chance of feeding you safely before you go.

A jar of nut butter, a couple cans of Dinty Moore beef stew, some bread and pretzels and fresh fruit will make sure you are not hungry even if the meals are a bit boring for a couple days.

We can travel safely but we do need to bring stuff with us most times.

mamabear272 Explorer
mamabear272
Posted
  • Author

There are lots of ways you could have been glutened unfortunately. Crumbs on a cutting board, your food coming in contact with theirs. You really can't trust anyone to prepare your food if they don't care to learn about your condition. If you go there again, can you cook for yourself without rocking the boat too much? I haven't gone to anyone else's house to eat in months. Cross contamination is just too risky. It is discouraging, isn't it? I hope you feel better soon.

I was staying at a hotel, not with my cousin. I trust that she would have been very accommodating to me and my disease. I am feeling better than earlier but still not great like I was.

Normally when we vacation, we stay in a condo with our timeshare and have a full kitchen so that won't normally be a problem.

I will remember next time, too, to check for gluten-free places before we go.

ravenwoodglass Mentor
ravenwoodglass
Posted

I was staying at a hotel, not with my cousin. I trust that she would have been very accommodating to me and my disease. I am feeling better than earlier but still not great like I was.

Normally when we vacation, we stay in a condo with our timeshare and have a full kitchen so that won't normally be a problem.

I will remember next time, too, to check for gluten-free places before we go.

Did you bring your own toaster and cooking stuff with you? I usually stay in a hotel room with a kitchenette but bring a couple of my own pots and pans and toaster along with disposable silverware and a couple of my own spoons etc for stirring stuff. I never touch the stuff that is already there for me.

mamabear272 Explorer
mamabear272
Posted
  • Author

Our hotel didn't have a kitchenette.

I really feel awful. How long till I get back to where I was and even better? This is terrible! I don't miss feeling like this!

ravenwoodglass Mentor
ravenwoodglass
Posted

Our hotel didn't have a kitchenette.

I really feel awful. How long till I get back to where I was and even better? This is terrible! I don't miss feeling like this!

Hopefully you will be feeling better soon. For now eat soothing stuff like Cream of Buckwheat or toast and keep things on the bland side. If your schedule allows sleep as much as you can and hang in there. It will pass but how long it takes to pass can be different for different people.

When I go somewhere without a kitchenette I usually will bring a hot plate, my toaster and an ice chest. Some rooms will have a small fridge but even if they don't they always have an ice machine so at least a small container of milk and other stuff can be kept cold. The sink in the kitchenette is handy but I found I didn't really use any of the stuff there other than the fridge.

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mamabear272 Explorer
mamabear272
Posted
  • Author

Thanks for the advice! I definitely do that next time I have to stay at a hotel.

sandsurfgirl Collaborator
sandsurfgirl
Posted

It sounds like your GI did thorough testing but she isn't knowledgable about what happens after you go gluten free. It can take months for the symptoms to go away. You are a baby celiac, so new to the diet. Just a few weeks. It took me six full months to have ONE symptom free day. That's pretty common. At least 2 or 3 months, especially if you are an adult at diagnosis.

Search on this board for gluten withdrawals. They are real, scientifically documented and can be very hard. Your body can go through very weird phases. I had a couple weeks where I was pooping like 12 times per day. I had weird pains, brain fog, shaky and dizzy spells. There were a couple weeks about a month into it that I could not digest anything. Then it just went away.

New celiacs usually have other food sensitivities until the gut heals. I couldn't eat dairy, nightshades, soy, or tapioca. Now I can eat all of them, although soy in moderation.

So your doctor is totally overreacting. You definitely have celiac and it is taking time to heal. It's rare or even nonexistent that an adult gets diagnosed and gets cured immediately after going gluten free.

Are you on a simple healing diet? Have you checked all your shampoos, soaps, conditioners etc for wheat ingredients? (They generally never contain barley or rye. Wheat is listed on there as wheat germ oil, wheat extract, etc.)

Is it possible it was another ingredient that made you sick or that the food you ate was just too much on your healing gut?

It does get better but it takes time!! Eat very simply for awhile. Fruits, vegetables, plain rice, simple soup that you make homemade, lean meats, etc.

hang in there!

mamabear272 Explorer
mamabear272
Posted
  • Author

My doc is very good about things. She definitely said I have celiac. She said to go low residue for a bit and work through it. I would much rather have her overreact than umderreact like I've heard many docs do!

The cramping right now is crazy! I'm in bed with a heating pad. I took a vicodin and an Ativan.

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