Questions about Foods which say gluten free but bother me

[Taryn]

I have so many questions. There are multiple foods I eat which say gluten free and I am convinced are not. Spices, gluten free snacks bud light seltzer etc. they all give me severe symptoms including this awful celiac rash. Where can I go to find ingredients that are truly gluten free!!  Please help!

[trents]

Welcome to the forum, Taryn!

One piece of advice I would give you with regard to processed foods is to look for "Certified Gluten Free" labeling instead of just "Gluten Free." It is likely that you are more sensitive to traces of gluten than the average celiac. Certified gluten-free products are produced and tested according to stricter standards than Gluten Free foods. The FDA standard for being able to use the label "Gluten Free" is 20ppm or less. Even that is too much gluten for some celiacs.

Also, avoid prepackaged, processed gluten free products as much as possible. Make more of your own stuff from scratch. In addition, there are plenty of naturally gluten free foods such as fresh fruits and vegetables and meats. Focus on things that are just unlikely to come in contact with gluten containing grains during growing, storage, transportation and processing.

On this forum there are sections devoted to gluten free products with lists that are kept up to date by the input of our forum participants. They aren't fool proof but a good place to start.

[Taryn]

Thank you so much!!  That was so helpful. I think I am going to start a lot more meal prep with things made here at home!!

[trents]

Taryn, how long ago were you diagnosed? Is the gluten free lifestyle a new experience for you?

[Taryn]

About a year ago and I am still struggling. I cook fresh a lot but have a hard time with spices and seasonings and almost everything lol. 

[trents]

I would suggest focusing on fresh, simple and basic foods that you cook for yourself. Yes, seasonings can contain gluten. Wheat is sometimes used as a binding-texturing agent for seasonings and cross contamination in the manufacture of seasonings can also be an issue. Stick with salt and pepper for awhile.

When you say you get an "awful celiac rash" do you mean dermatitis herpetiformis ("DH")?

You may also have developed allergies or intolerance to other non-gluten foods. This is very common with celiac disease. Processed foods typically have many ingredients added in order to produce certain flavors and textures. It is very common for celiacs to be intolerant of dairy for instance. Egg intolerance is also fairly common as is soy intolerance. About 10% of celiacs react to oat protein the way they do gluten.

I would suggest you consider an elimination diet where you start with few simple foods that you know don't cause you problems. Then begin to add in other things one at a time to figure out what you are reacting to. Keeping a food diary can also help pinpoint problem foods because it helps you see patterns. And remember, it may take 24 hrs. or more to react to something that you eat.

What symptoms are you experiencing anyway besides the rash?

[GF-Cate]

Spices were one of the items that were cross contaminating me, so I ended up giving away every bottle in my spice cabinet and starting from scratch. It was expensive, but worth it for me.

Morton & Bassett (CGF - certified gluten free)

https://mortonbassett.com/

Spicely (CGF)

https://www.spicely.com/

I also grow some of my own herbs in large planters to use in summer and then dry them to use throughout the winter (or buy a large bunch at the grocery or farmers market & dry). Woody-stemmed herbs like thyme, rosemary, oregano, mint (for tea), lemon verbena (tea) work well to dry. For leafy herbs like parsley, cilantro, basil, you can chop & freeze in ice cube tray with a little oil & water 

For vanilla I use Nielsen-Massey, which is CGF (not sure if all their products are, but the regular vanilla & vanilla paste are), and have also make my own with gluten-free vodka and vanilla beans - need to let it sit at least 8 weeks in dark cabinet before using.

https://nielsenmassey.com/

 

[Taryn]

On 12/12/2021 at 11:00 PM, trents said:

Welcome to the forum, Taryn!

One piece of advice I would give you with regard to processed foods is to look for "Certified Gluten Free" labeling instead of just "Gluten Free." It is likely that you are more sensitive to traces of gluten than the average celiac. Certified gluten-free products are produced and tested according to stricter standards than Gluten Free foods. The FDA standard for being able to use the label "Gluten Free" is 20ppm or less. Even that is too much gluten for some celiacs.

Also, avoid prepackaged, processed gluten free products as much as possible. Make more of your own stuff from scratch. In addition, there are plenty of naturally gluten free foods such as fresh fruits and vegetables and meats. Focus on things that are just unlikely to come in contact with gluten containing grains during growing, storage, transportation and processing.

On this forum there are sections devoted to gluten free products with lists that are kept up to date by the input of our forum participants. They aren't fool proof but a good place to start.

I have hair thinning, stomach issues, joint pain, exhaustion…I just feel like I’m 40 years older than I actually am. I also can not lose weight no matter what I eat or how often I work out which is is usually 4-5 times weekly. Thank you so much for the info!!

14 hours ago, GF_Cate said:

Spices were one of the items that were cross contaminating me, so I ended up giving away every bottle in my spice cabinet and starting from scratch. It was expensive, but worth it for me.

Morton & Bassett (CGF - certified gluten free)

https://mortonbassett.com/

Spicely (CGF)

https://www.spicely.com/

I also grow some of my own herbs in large planters to use in summer and then dry them to use throughout the winter (or buy a large bunch at the grocery or farmers market & dry). Woody-stemmed herbs like thyme, rosemary, oregano, mint (for tea), lemon verbena (tea) work well to dry. For leafy herbs like parsley, cilantro, basil, you can chop & freeze in ice cube tray with a little oil & water 

For vanilla I use Nielsen-Massey, which is CGF (not sure if all their products are, but the regular vanilla & vanilla paste are), and have also make my own with gluten-free vodka and vanilla beans - need to let it sit at least 8 weeks in dark cabinet before using.

https://nielsenmassey.com/

 

Thank you so much!!  I was wondering which foods were safe or not. I’m almost scared to eat every day!!  I just ordered some new spices!!!