Overwhelmed ;(

[DawnRams]

My husband was just diagnosed with Celiac by biopsy. I understand no wheat, barley, rye--I can do that, but I'm just so worried my vanilla or baking soda or my toaster is going to be the source of hidden gluten and sabotage everything else I'm doing. I'm doing the research and I can read labels-I'm just afraid of making a mistake.  Is eliminating obvious gluten good enough to start or is it all or nothing? How will we ever go to a friend's house for dinner? I'd appreciate any words of wisdom, cautionary tales, or a swift kick in the pants if needed   Thanks!

[trents]

Hi Dawn. Yes, it seems overwhelming at first and you will make some mistakes in the process of learning where gluten is found in processed foods. There is a significant learning curve. We have all been there. Some questions:

1. Are there other family members living in your house besides you and your husband? If not, the best way to ensure his safety is for you to also commit to eating gluten-free. Throw out all flour and all processed foods. Thoroughly clean the toaster oven. If it is a popup style toaster, throw it away and get a new one.

2. Baking soda and vanilla are by nature gluten-free. However, gluten is found in many processed foods that you would never suspect. Nearly all canned soups use wheat flour as a thickener. Wheat is in most soy sauces. Many processed foods that are not wheat/barely/rye based will have been cross-contaminated with gluten containing grains in the growing, transport, storage and or processing. Even if gluten is not an intentional ingredient in the item it may have picked up some gluten along the way. If the ingredient label says, "produced on equipment that is also used to process wheat . . ." it will likely have some degree of cross contamination. "May contain wheat" is also a flag.

3. The best approach is to avoid using processed foods altogether. Eat only fresh fruit, veggies and meat and that which you cook for yourself. Focus on buying what processed foods you must use that are labeled "gluten free" or better yet, "certified gluten free."

4. Avoid eating out where you have no control over ingredients that go into things or over cross contamination where non gluten foods are cooked on the same equipment as gluten containing foods. When you must eat out, look for restaurants that have a gluten free menu section. When that isn't available, be assertive and ask for simple things like a baked potato and steamed broccoli or greened beans and aske that those things be cooked in clean pots and pans by themselves. 

5. For family gatherings, offer to be the host where you can ensure that there will be gluten-free offerings for your hubby or take your own food if you aren't the host. Be proactive in educating family and friends about your husband's Celiac Disease and the critical need he has to avoid gluten. Send them email with information about Celiac Disease. Before family gatherings, communicate with those doing the cooking to find out what they will be serving and what will go into the foods they are preparing. 

7. Check for gluten in meds and supplements your husband uses. Spices can also contain wheat as a texturing agent.

It's much better than it was years ago since there is much more awareness about gluten-related medical conditions. Most people have a family member or friends who must eat gluten-free. But steel yourself up. Some people just won't buy into it and are convinced its all in your head. Persevere, however. It's not your problem, it's theirs'. 

And be kind to yourself. You will make mistakes but see them as learning experiences.

Edited November 21, 2020 by trents

[Scott Adams]

This article might be helpful:

 

[DawnRams]

8 hours ago, trents said:

Hi Dawn. Yes, it seems overwhelming at first and you will make some mistakes in the process of learning where gluten is found in processed foods. There is a significant learning curve. We have all been there. Some questions:

1. Are there other family members living in your house besides you and your husband? If not, the best way to ensure his safety is for you to also commit to eating gluten-free. Throw out all flour and all processed foods. Thoroughly clean the toaster oven. If it is a popup style toaster, throw it away and get a new one.

2. Baking soda and vanilla are by nature gluten-free. However, gluten is found in many processed foods that you would never suspect. Nearly all canned soups use wheat flour as a thickener. Wheat is in most soy sauces. Many processed foods that are not wheat/barely/rye based will have been cross-contaminated with gluten containing grains in the growing, transport, storage and or processing. Even if gluten is not an intentional ingredient in the item it may have picked up some gluten along the way. If the ingredient label says, "produced on equipment that is also used to process wheat . . ." it will likely have some degree of cross contamination. "May contain wheat" is also a flag.

3. The best approach is to avoid using processed foods altogether. Eat only fresh fruit, veggies and meat and that which you cook for yourself. Focus on buying what processed foods you must use that are labeled "gluten free" or better yet, "certified gluten free."

4. Avoid eating out where you have no control over ingredients that go into things or over cross contamination where non gluten foods are cooked on the same equipment as gluten containing foods. When you must eat out, look for restaurants that have a gluten free menu section. When that isn't available, be assertive and ask for simple things like a baked potato and steamed broccoli or greened beans and aske that those things be cooked in clean pots and pans by themselves. 

5. For family gatherings, offer to be the host where you can ensure that there will be gluten-free offerings for your hubby or take your own food if you aren't the host. Be proactive in educating family and friends about your husband's Celiac Disease and the critical need he has to avoid gluten. Send them email with information about Celiac Disease. Before family gatherings, communicate with those doing the cooking to find out what they will be serving and what will go into the foods they are preparing. 

7. Check for gluten in meds and supplements your husband uses. Spices can also contain wheat as a texturing agent.

It's much better than it was years ago since there is much more awareness about gluten-related medical conditions. Most people have a family member or friends who must eat gluten-free. But steel yourself up. Some people just won't buy into it and are convinced its all in your head. Persevere, however. It's not your problem, it's theirs'. 

And be kind to yourself. You will make mistakes but see them as learning experiences.

Thanks, Trent. It is just my husband and I at home, so that should help. I have been going through my cupboards and have a preliminary shopping list made up. I go back and forth between thinking I can do this and having panic attacks. Hoping the former predominates over the latter

[trents]

Just as an aside, many people who don't have Celiac Disease but have chosen to eat gluten-free in support of a spouse or significant other amazingly find that they actually are healthier and feel better for having done so. bobsredmill.com is a good resource for gluten-free fours and food products. 

Always read labels, even for food items you would never expect to contain gluten. For instance, did you know that most soy sauces have wheat in them and almost all canned soups do? After a year or two you and your husband will develop an kind of sixth sense about what might contain gluten.

[DawnRams]

5 hours ago, Scott Adams said:

This article might be helpful:

 

Thanks, Scott! I appreciate your help!

 

[RMJ]

You can do it!  It is great that you are clearly supportive of your husband. Feel free to come back here as often as needed and ask lots of questions, and don’t beat yourself up if you make a mistake.  

Dinner with friends can be a real problem because so many people don’t understand where gluten can hide, and they won’t have done all of the research that you are doing.  If I eat at family member’s houses they check with me first about whether or not I can eat certain things, then I am in their kitchen looking at the ingredients and watching them cook.  Luckily they put up with that! For one friend who has a party each year, I don’t eat at her house but tell her I am there for her company, not the food.  

[DJFL77I]

vanilla doesn't have gluten..

don't buy packaged foods...  if you must.. only buy "certified gluten free"...

but best is to cook everything from scratch...   fresh meats, wild caught salmon,  and vegetables and fruit..

he needs his own pots and pans and dishes and utensils..  away from yours...

buy gluten free soap and tooth paste. 

 

 

 

 

 

 

actually best just to get a divorce.

[Ouchybelly27]

8 hours ago, DawnRams said:

Thanks, Trent. It is just my husband and I at home, so that should help. I have been going through my cupboards and have a preliminary shopping list made up. I go back and forth between thinking I can do this and having panic attacks. Hoping the former predominates over the latter

Also watch out for some vinegars or any products that contain vinegar. Some vinegars are gluten-free but some are not. 
It’s almost impossible to stay true to the gluten-free diet unless you only eat at home. 
For seasonings I use the brand Morton and bassets from Whole Foods because they are one of the only seasoning brands that actually labels their products gluten-free. 
The gluten-free diet can be expensive but do not get discouraged, it gets better once you figure it all out. I recommend sticking to the foods that are naturally gluten-free and not the processed ones that are labeled gluten-free. When in doubt rice, chicken, fish, or any protein, and a veggie will be the way to go. After some time on the diet you may begin to enjoy simpler meals. 
 

P.s excuse my grammar as I am scatterbrained. 

[Pat Jackson]

On 11/21/2020 at 9:22 AM, DawnRams said:

My husband was just diagnosed with Celiac by biopsy. I understand no wheat, barley, rye--I can do that, but I'm just so worried my vanilla or baking soda or my toaster is going to be the source of hidden gluten and sabotage everything else I'm doing. I'm doing the research and I can read labels-I'm just afraid of making a mistake.  Is eliminating obvious gluten good enough to start or is it all or nothing? How will we ever go to a friend's house for dinner? I'd appreciate any words of wisdom, cautionary tales, or a swift kick in the pants if needed   Thanks!

Its great that you are so worried about getting it right.  He has a much better chance of success with you on his side!  I was diagnosed in early March, and immediately went totally gluten free.  At least, that was what I thought I was doing.  It took a lot of time to figure it out, and I have to say that at 9 months in, I'm still learning.  

For me, the first few weeks were a gradual improvement on the misery I had been living with for years.  Then, something set me back for weeks.  Long story, but it turns out I also have a lot of gastritis, and that was what was happening.  I didn't know for a long time if my problems were from possible accidental gluten ingestion or if the gastritis was the culprit.  It has taken some time, but now I am much better at telling the difference, and also better at handling the gastritis, which tends to pop up unpredictably and make my life complicated for several days before it settles down.  Once I figured out the difference, it became clear that the major symptom of gluten for me is extreme bloating. 

It is easy to forget the little things and get accidentally glutened at first (and still).  Just last week, I got the extreme bloating (feeling like I was about to explode), and we figured out it had to be from the toaster.  I eat very little bread, so rarely use the toaster, but had bought some certified gluten-free bread and really enjoyed my toast.  Until about an hour and a half later!

The whole family here eats mostly whole foods now.  Very little processed food and nothing that isn't labelled gluten-free.  At the grocery store, I start at one end with the vegetables and skip almost everything in the middle and then go to the other end with the frozen food and meat and dairy.  It all tastes a lot better.

Your journey may have ups and downs, but just having the right diagnosis is a huge step forward.  Best of luck to you.

 

 

[DawnRams]

On 11/22/2020 at 4:00 AM, DJFL77I said:

vanilla doesn't have gluten..

don't buy packaged foods...  if you must.. only buy "certified gluten free"...

but best is to cook everything from scratch...   fresh meats, wild caught salmon,  and vegetables and fruit..

he needs his own pots and pans and dishes and utensils..  away from yours...

buy gluten free soap and tooth paste. 

 

 

 

 

 

 

actually best just to get a divorce.

I dare say I've given thought to trading him in for a new (celiac free) model

[DawnRams]

On 11/22/2020 at 4:13 AM, Ouchybelly27 said:

Also watch out for some vinegars or any products that contain vinegar. Some vinegars are gluten-free but some are not. 
It’s almost impossible to stay true to the gluten-free diet unless you only eat at home. 
For seasonings I use the brand Morton and bassets from Whole Foods because they are one of the only seasoning brands that actually labels their products gluten-free. 
The gluten-free diet can be expensive but do not get discouraged, it gets better once you figure it all out. I recommend sticking to the foods that are naturally gluten-free and not the processed ones that are labeled gluten-free. When in doubt rice, chicken, fish, or any protein, and a veggie will be the way to go. After some time on the diet you may begin to enjoy simpler meals. 
 

P.s excuse my grammar as I am scatterbrained. 

Thanks for the tips. No worries about grammar or scatterbrained-ness, I just appreciate the help!

[DawnRams]

On 11/22/2020 at 12:35 PM, Pat Jackson said:

Its great that you are so worried about getting it right.  He has a much better chance of success with you on his side!  I was diagnosed in early March, and immediately went totally gluten free.  At least, that was what I thought I was doing.  It took a lot of time to figure it out, and I have to say that at 9 months in, I'm still learning.  

For me, the first few weeks were a gradual improvement on the misery I had been living with for years.  Then, something set me back for weeks.  Long story, but it turns out I also have a lot of gastritis, and that was what was happening.  I didn't know for a long time if my problems were from possible accidental gluten ingestion or if the gastritis was the culprit.  It has taken some time, but now I am much better at telling the difference, and also better at handling the gastritis, which tends to pop up unpredictably and make my life complicated for several days before it settles down.  Once I figured out the difference, it became clear that the major symptom of gluten for me is extreme bloating. 

It is easy to forget the little things and get accidentally glutened at first (and still).  Just last week, I got the extreme bloating (feeling like I was about to explode), and we figured out it had to be from the toaster.  I eat very little bread, so rarely use the toaster, but had bought some certified gluten-free bread and really enjoyed my toast.  Until about an hour and a half later!

The whole family here eats mostly whole foods now.  Very little processed food and nothing that isn't labelled gluten-free.  At the grocery store, I start at one end with the vegetables and skip almost everything in the middle and then go to the other end with the frozen food and meat and dairy.  It all tastes a lot better.

Your journey may have ups and downs, but just having the right diagnosis is a huge step forward.  Best of luck to you.

 

 

Thnak you, Pat! I appreciate  your help.

[ch88]

You can also post a list of the things that you commonly eat or have a questions about. The people in the forum have lots of experience shopping and researching which things have gluten which are gluten free and which are likely to be cross contaminated. We can tell off hand if something contains gluten. 

Just make sure you read the labels really closely and avoid oats (unless they are certified gluten free and he can tolerate them fine) to start out with. This site also has a search feature at the top of the page. 

Heating food too hot, turns it to charcoal which is pure carbon and gluten free. That is one way to clean an oven. 

[DawnRams]

On 11/25/2020 at 8:58 PM, ch88 said:

You can also post a list of the things that you commonly eat or have a questions about. The people in the forum have lots of experience shopping and researching which things have gluten which are gluten free and which are likely to be cross contaminated. We can tell off hand if something contains gluten. 

Just make sure you read the labels really closely and avoid oats (unless they are certified gluten free and he can tolerate them fine) to start out with. This site also has a search feature at the top of the page. 

Heating food too hot, turns it to charcoal which is pure carbon and gluten free. That is one way to clean an oven. 

Thanks for the gluten-free oven cleaning tip  I got a book--Gluten-Free Grocery Shopping Guide which has been helpful, but I shop primarily at Aldi and it doesn't include many of their items. I purchased several of their Live Free Gluten Free products and so far my husband has been pretty pleased with them. I'll be sure to holler when I need help.

[DawnRams]

On 11/21/2020 at 8:13 PM, trents said:

Just as an aside, many people who don't have Celiac Disease but have chosen to eat gluten-free in support of a spouse or significant other amazingly find that they actually are healthier and feel better for having done so. bobsredmill.com is a good resource for gluten-free fours and food products. 

Always read labels, even for food items you would never expect to contain gluten. For instance, did you know that most soy sauces have wheat in them and almost all canned soups do? After a year or two you and your husband will develop an kind of sixth sense about what might contain gluten.

I'm ready for that 6th sense to develop sooner rather than later  We are pretty good at eating whole foods. limiting processed products, and eating at home. While I aim to be supportive, the cost of the gluten-free items is significantly higher than the mainstream alternative, making it difficult for me to adhere as strictly as him. 

[GFinDC]

Hi Dawn,

Aldi has gluten-free wraps that work ok for me.   They are cheaper than buying the gluten-free bread I think.  Most of the extra cost of gluten-free items is for non-essentials.  Basic meats, veggies, fish, nuts, eggs and fruit are the same price for all people and are gluten-free.  You can try using Mission brand corn tortillas for some bread type things also.  Rice cakes and corn cakes are ok with peanut butter for snacks.  Dairy is often a problem for people at first but that may resolve in a few months on the gluten-free diet.

Silk cashew and almond milk is a good alternative to dairy.  There are dairy free ice cream subs also.

[GodsGal]

Hi Dawn! 

First of all, I want to say, "You can do it!"  I was diagnosed with celiac disease (celiac disease) last February. It is a rough transition. You are taking the right steps and asking the right questions. 

My doctor also said that I should avoid oats for at least a year due to the potential for cross pollination in the fields and cross contamination during production.

One thing that has really helped me is connecting with other people who also have celiac disease. Do you know anyone locally? Are there any support groups in your area?

Social gatherings can be awkward. When I am invited to a gathering, I always let the person extending the invitation know about my dietary needs upfront. I will ask if I can bring my own food. Also, being upfront about my dietary needs opens the door to politely ask about the ingredients in any dishes I may be offered.

My celiac disease was caught before I had a major crisis. So it was not obvious to other people. The fact that it was not obvious made it more difficult for the people around me to accept.

I honestly benefitted from having less social gatherings this spring. It gave me time to figure out how to go gluten free without having the additional stress of educating others while educating myself.

When choosing restaurants I always call ahead and ask about gluten and potential cross contamination (i.e. are the nuggets and fries fried in the same oil?) 

I have honestly had to grieve gluten. Some days I feel like I can do this. And there are times when it is really hard. What you are feeling is 100% normal. I have found that I need to be gracious with myself and with others. 

I hope this helps! You can do it!