Help! What Am I Doing Wrong?

[Ranne10]

I've been on the diet for 5.5 weeks now. I saw results almost immediately - not perfect but I could tell it was working. I actually started to believ that I could feel good again. But tonight I am sitting here feeling like crying my heart out.

This week I went out for lunch a couple of times. I've been trying to avoid it but work was demanding and we needed to get out of the office. One day I went to PF Chang's. Wow! I felt normal. The food was great and I didn't feel ill at all. But yesterday we went to the Macaroni Grill. I ate the gluten free pasta and a salad. All was on the gluten free list.

Within an hour a severe migraine hit. Then the stomach... I still feel terrible and my joints are hurting. I feel like I did six weeks ago.

What did I do? I'm so careful. I read lables and I only eat off the gluten free menu. I couldn't be more disheartend than I feel right now. Is this normal? Did I get gluten even though it said 'gluten free'.

Any words of advise would be most appreciated.

If it says gluten free and I still get ill is it something else?

[MitziG]

Well, no way to know for sure, but the likelihood is you got cross contaminated at Macaroni Grill. The "gluten free" menu at restaurants is helpful, but unless you speak specifically to the chef and server regarding how to handle/ prepare your dish, chances are good that you will get sick.

For instance, they may handle bread and then prepare your salad. Or crumbs may get transferred. Or your chicken may be cooked on the same grill that they just grilled a steak on- only that steak was maybe seasoned with a gluten containing seasoning first...

Kitchens are busy places, and even the most well intentioned chef can easily cross contaminate you. You have been gluten-free long enough now that your immune system is sensitive to even the tiniest bit of gluten.

Sadly, it isn't enough to just eat "gluten free" food. You really have to take the extra step to ensure gluten free preparation as well. It is a pain, and it is embarrassing- but the consequences of NOT doing it often mean ending up sick, as you have just found out.

[LeahBanicki]

It takes time for your body to heal and cross contamination is a VERY big deal I have learned.

Your intestines are trying so hard to heal and even the smallest crumb will trigger a reaction.

I avoided Dairy for a long time to help the healing process too. Dairy if hard for your damaged villi to digest, especially if your guts are very damaged.

You are probably detoxing from the wheat too.

You are early in the process and packing a lunch is a good thing to do. Restaurants are dangerous places for us Celiacs and they don't understand how militant we have to be to keep it away.

I have found strong peppermint tea to be helpful. Peppermint oil pills from the healthfood store can help with some of the 'hot belly' I would get.

Keep your diet simple for a while and keep track of what bothers you and what doesn't. You may discover a certain thing that triggers that makes no sense.

I cannot have any citrus fruits at all. NOT ONE SIP! or 5/6 days of terrible gut pain.

It's tricky trying to heal something you use every day. You can't tell your intestines to go on best rest, it is a useful part of your body that has to heal and work at the same time.

hang in there... We have all gone through this too.

[dilettantesteph]

Our different levels of sensitivity vary. Some of us have no problems eating in restaurants, and some of us get bothered by the tiniest amount of cc. Even if you are one who can't eat in restaurants, you can still go along with friends and coworkers and bring your own. Or, you can eat first and just socialize.

[Cara in Boston]

My husband keeps nagging me to go out to eat. We tried it a few times in the beginning but didn't have good luck.

I just accept the fact that no matter how careful I am about what I eat, I can't expect the random cook, server, table cleaner, etc. in a restaurant to have the same standards. Even if they have a gluten-free menu, it does not mean everyone who has contact with your food is trained or even paying attention. One small mistake means my son or I am sick for about a week. It is just not worth it to us.

There is ALWAYS an alternative (bring your own meal, eat first, just enjoy drinks, etc.) to eating out. At first I felt awkward, now it is really no big deal. We just went to a wedding as a family and after one or two questions, no one barely noticed that we had brought our own food and we were able to sit and enjoy a meal with everyone. I'm so glad I stuck to my guns and didn't let the kitchen "try" to make us a gluten-free meal.

Cara

[MichelleD]

Have you looked up "gluten withdrawal". About the same time frame you were, I was depressed, crying, totally not myself. I felt worse than when I started. It did pass. Now, when I get "glutened" my reactions are physical so I know when it happened and the emotional piece a day or two later makes sense. Be kind to yourself, this is a huge change to your lifestyle and body, it will take time to settle in again.