Early Learnings and Advice for New Celiac Patients

[CeliacDave]

Hello All,

I am diagnosed Celiac and have been following the gluten free diet for 15 months. It can be a real rough go early on and I wanted to share some tips that I hope others will find useful. A little background for context. I am mid 20's, Male, in Canada, I was 100% asymptomatic prior to beginning the gluten free diet but was tested because Celiac Disease runs strong in my family. Like many people with Celiac Disease I had difficulty adjusting early on (I'd say for the first 8 months). Specifically, after starting the diet I developed immediate GI responses to gluten in the form of diarrhea and constant feeling of urgency to poop (trying to be specific because I think it is important to create a positive atmosphere here).

I don't think it is an exaggeration or inaccurate to say when you start the diet your stomach is in a state of shock. I became sensitive to stress and basically all food early on. You constantly try to solve your declining gut health by excluding certain foods for a day or two with no luck because it is often more than one thing causing the problem and typically the food needs to be excluded for weeks at a time to see results.

Without further ado, here are my tips:

- Learn to cook. Make ALL of your meals early on and avoid eating out at all if possible.

- Start simple with whole foods (rice, potatoes, veggies) to avoid cross contamination. Build an arsenal of go to meals and keep building on them.

- Get cooking utensils (spatulas, serving spoons, etc.) and pans that are only for gluten-free cooking.

- Go through your pantry and toss anything that you can't confirm is gluten free. It's not worth feeling like poop for a few days to save a couple bucks.

- Get a separate dish washing brush for only gluten-free dishes. This one is key!!! I was getting sick from cross-contamination all the time until I switched.

- Make sure those you live with know the seriousness of cross-contamination. For me at least even a crumb will throw me off.

- Ask for help or support when needed from your healthcare system and loved ones. They can only help if they know things are causing problems.

- Just accept that you are gluten-free for life right away. I went back and forth for months because it was hard but the bottom line is its not the end of the world and there are real consequences to not.

- Use celiac.com when you have questions, it has helped me get through many hard nights.

Hope this helped someone and good luck everyone!

 

 

 

[kareng]

1 hour ago, CeliacDave said:

Hello All,

I am diagnosed Celiac and have been following the gluten free diet for 15 months. It can be a real rough go early on and I wanted to share some tips that I hope others will find useful. A little background for context. I am mid 20's, Male, in Canada, I was 100% asymptomatic prior to beginning the gluten free diet but was tested because Celiac Disease runs strong in my family. Like many people with Celiac Disease I had difficulty adjusting early on (I'd say for the first 8 months). Specifically, after starting the diet I developed immediate GI responses to gluten in the form of diarrhea and constant feeling of urgency to poop (trying to be specific because I think it is important to create a positive atmosphere here).

I don't think it is an exaggeration or inaccurate to say when you start the diet your stomach is in a state of shock. I became sensitive to stress and basically all food early on. You constantly try to solve your declining gut health by excluding certain foods for a day or two with no luck because it is often more than one thing causing the problem and typically the food needs to be excluded for weeks at a time to see results.

Without further ado, here are my tips:

- Learn to cook. Make ALL of your meals early on and avoid eating out at all if possible.

- Start simple with whole foods (rice, potatoes, veggies) to avoid cross contamination. Build an arsenal of go to meals and keep building on them.

- Get cooking utensils (spatulas, serving spoons, etc.) and pans that are only for gluten-free cooking.

- Go through your pantry and toss anything that you can't confirm is gluten free. It's not worth feeling like poop for a few days to save a couple bucks.

- Get a separate dish washing brush for only gluten-free dishes. This one is key!!! I was getting sick from cross-contamination all the time until I switched.

- Make sure those you live with know the seriousness of cross-contamination. For me at least even a crumb will throw me off.

- Ask for help or support when needed from your healthcare system and loved ones. They can only help if they know things are causing problems.

- Just accept that you are gluten-free for life right away. I went back and forth for months because it was hard but the bottom line is its not the end of the world and there are real consequences to not.

- Use celiac.com when you have questions, it has helped me get through many hard nights.

Hope this helped someone and good luck everyone!

 

 

 

That was a good post!  Thank you.

[zigybean]

Do they do any further and/or monitoring  blood testing to track your antibody levels to help you understand when you are getting it right?  I have just recently gotten my diagnosis,  but not been back to see the GI guy yet. 

 

And emotionally I am as raw as can be.  This whole thing still feels like a major kick to the head.  I am in the midst of a bad emotional shell shock.

[CeliacDave]

I only had the blood test and the biopsy done. I felt the same way, I was totally fine before I started and I felt significantly worse after. But, it was night and day after I started making those changes in the kitchen. The good sign is that obviously there was something wrong and you are starting to correct it. It's just a matter of figuring it out (which can take time).  Are you living with others who are still eating gluten? 

Stay strong and know that things do get better! You just need to be strict and be really careful and don't compromise by having a cheat day or using dishes that aren't 100% clean.