9 Months Gluten Free...still Having Issues

[JennQ]

I've been dedicated to my gluten-free diet with only a handful of accidental glutenings. My bloodwork looked great 3 months ago. Levels almost back to normal.

I STILL have D. What gives? I also had an episode with severe upper stomach pain last week (I wanted to die or pass out). The doctor scheduled me for an ultrasound on my gallbladder, but that is not for another 2 weeks.

I'm so frustrated. The first few months were great because I did see improvements, but now I feel like I'm trekking backward.

[ravenwoodglass]

How much soy and dairy do you consume? Those can cause issues for many of us. What is your diet typically like? As time goes by some of us are more sensitive to cross contamination present in many processed foods or CC in our households from gluten eaters that live with us. Non food items can also be an issue, have you eliminated gluten ingredients from your toiletries and any art and craft supplies?

[JennQ]

That's funny you mention all of the above. I just told my husband last night that I need to reevaluate all my cosmetics again ( I thought I had that under control) and I'm going to start eliminating items from my diet..starting with dairy. My doctors don't seem to be very educated about celiac disease...at least not as much as they should be, so I'm kind of on my own.

[ravenwoodglass]

That's funny you mention all of the above. I just told my husband last night that I need to reevaluate all my cosmetics again ( I thought I had that under control) and I'm going to start eliminating items from my diet..starting with dairy. My doctors don't seem to be very educated about celiac disease...at least not as much as they should be, so I'm kind of on my own.

It is not uncommon for doctors to be clueless when it comes to gluten issues. Your not alone in your struggles though, you have us.

[dilettantesteph]

I got better at first by just eliminating cheerios and bread. Then I started having symptoms again. I kept eliminating things, getting better, then getting sick again. I learned about a lot of things here. I learned about cross contamination from shared facilities. I learned about cross contamination from shared households. I learned about the problems with kissing gluten eaters. I learned about contamination of gluten free grains. I still get glutened sometimes now after 3 years, but things are much better. I eat mainly whole foods and I wash almost everything. I don't eat in restaurants. I hope that you find the source of your problems.

[JennQ]

I got better at first by just eliminating cheerios and bread. Then I started having symptoms again. I kept eliminating things, getting better, then getting sick again. I learned about a lot of things here. I learned about cross contamination from shared facilities. I learned about cross contamination from shared households. I learned about the problems with kissing gluten eaters. I learned about contamination of gluten free grains. I still get glutened sometimes now after 3 years, but things are much better. I eat mainly whole foods and I wash almost everything. I don't eat in restaurants. I hope that you find the source of your problems.

I've been lurking on here since I found out I had celiac disease. It's been a huge help. I am very careful, along with my family. We have strict rules to prevent cross contamination and mostly the whole family eats gluten free.

Probably the most frustrating thing is thinking that all of it was solved when I was diagnosed . I thought that would be THE fix. I guess not. At least I'm on the right track.

[christine89]

I've been lurking on here since I found out I had celiac disease. It's been a huge help. I am very careful, along with my family. We have strict rules to prevent cross contamination and mostly the whole family eats gluten free.

Probably the most frustrating thing is thinking that all of it was solved when I was diagnosed . I thought that would be THE fix. I guess not. At least I'm on the right track.

I was just diagnosed with celiac disease this week. I have been doing a lot of research and everything is so overwhelming! What things do you do to prevent cross contamination? I understand about not eating in a restaurant or using the same knife or cutting board that gluten products have touched, but what about cosmetics or kissing people who have eaten gluten? How effective has it been to eliminate these things and how far should I really go?

[lucia]

I was just diagnosed with celiac disease this week. I have been doing a lot of research and everything is so overwhelming! What things do you do to prevent cross contamination? I understand about not eating in a restaurant or using the same knife or cutting board that gluten products have touched, but what about cosmetics or kissing people who have eaten gluten? How effective has it been to eliminate these things and how far should I really go?

Hi Christine,

Don't worry, it's a learning process for all of us. People talk about a "learning curve" for learning to do without gluten. You can begin a topic on the board and ask your questions there, but I also recommend finding a book that pulls all the info together ("Gluten-free for Dummies" is supposed to be good).

Best, lucia