Cross-Contamination Is A Real Thing and is Slowly Killing Me

[jenford244]

Who else deals with this? Please tell me I'm not alone. I've had to completely eliminate going out to eat PERIOD, having any food or drinks, coffees, teas, snacks, that aren't bought at a store with my own hands, and aren't super processed and ambiguous - which leaves only fruits and vegetables, lean meats, to be safe.
Nothing that can even be remotely related or near wheat (corn, oats) can enter my body. I don't eat red meat or have dairy while my intestines are healing from years of damage. It's gotten pretty bad (blood).

For example, I just had to throw out a protein powder that I loved, that claimed to be free of gluten, and other food items that cause people allergies. (I don't have a gluten allergy, I have celiac disease.) Because said item was processed in a factory with wheat, but nowhere on the container did it state this. Which infuriated me. If you want to know it is the brand OWYN. I would advise avoiding it, and all protein powders for that matter. I wouldn't have even known if it wasn't for a comment through amazon.com, then started paying attention to how it made me feel. Now no protein powders are safe. Have had to go through this all on my own.

Has anyone else had to deal with these difficulties, any of them, and if so, what did you do to help cope with this? What kinds of emotions and thoughts ran through your head? What did you do to help remind yourself? I've had quite a few emotional breakdowns over this. And please don't tell me that it's something else and I need to see a specialist, because I have. 

What foods do you like to eat? What foods do you like to cook, what are some general tips and tricks, things you've learned that you can/wouldn't mind to send my way? 

Now I have to stick to just fruits, vegetables, and lean meats forever now, and this whole process has just made me feel like I'm in a bad dream that I can't wake up from. It doesn't even feel like reality. I turned 26 this year and if it wasn't for 23andMe (last Christmas) I wouldn't even know I had Celiac. But since doing a vast diet change my constipation has stopped, I'm having regular bowel movements, though worrysome still -- my general mental health has felt a lot better and my physical health too. I don't feel sick all the time like I used to and didn't know what was going on. 

Any advice or wisdom, general knowledge any of you may have is seriously appreciated.

Thank you.

[trents]

Lean meat, fresh fruits and veggies are what all of us celiacs would do better with if we were living on it entirely. I'm sure I could lose the 20 lbs I would like to shed if I was eating like you. Your current diet is exactly what we often recommend to those who start the celiac journey with very badly damaged villi. How long have you been eating truly gluten free? After your villi are completely healed you may find you are not so sensitive and can branch out some. But full healing of very damaged villi can take two years or more.

[Scott Adams]

Your approach to stop eating outside your home is a wise one, especially if you are super sensitive. I don't want to encourage you to change your approach, but just want to mention that GliadinX, which is an AN-PEP enzyme (that is a sponsor here) has been shown in multiple studies to break down trace amounts of gluten in the stomach, before it reaches the intestines.  I think everyone in the super sensitive category should consider taking one before each meal, even at home, for precisely the reason you mentioned--not all products marked gluten-free are 100% safe, and some do contain trace amounts of gluten, perhaps in the 0-19ppm range. I still eat out regularly and am careful about how I order, etc., but I now take a couple of them before I eat, and no longer have the issues I used to (I don't take them at home, but have used a Nima Sensor to test many things that I eat regularly).

One interesting and positive side-effect of going through this transformation in your diet is that you may end up eating a lot healthier. This was definitely the case for me, as I began to wonder why I had been eating foods with so many crazy chemical type ingredients that I didn't even understand. The easiest way for me to switch was to just eliminate the weird ingredients, and stick to foods with very simple ingredients.

[knitty kitty]

Welcome to the forum, @jenford244!

I've adopted the AutoImmune Protocol Diet, which is fresh veggies and lean meat, grass fed beef.  Dr. Sarah Ballantyne developed it for her-Celiac-self and her Celiac children.  The AIP diet is scientifically shown to promote intestinal healing.  It has really helped me.  

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

I started having trouble with red meat until I switched to grass fed beef.  No problems with red meat now.

Make sure you take a good B Complex supplement.  Celiac Disease causes malabsorption which means we don't absorb nutrients well.  The eight essential B vitamins must be consumed every day. 

A gluten free diet can be lacking in B vitamins.  Where gluten containing products are required by law to be enriched with vitamins, gluten free facsimile foods are not.  So when we go gluten free, we need to source those vitamins from our safe foods and from supplements while healing.  

Yes, it is a bit of a mind adjustment when it comes to realising food manufacturers are in it to make a profit.  

Count yourself as very fortunate to have discovered your Celiac Disease so young in life.  Some of us old Celiacs have struggled with misdiagnosis and the resulting collateral damage.  

Stay strong.  Keep us posted on your progress!

[jenford244]

4 hours ago, Scott Adams said:

Your approach to stop eating outside your home is a wise one, especially if you are super sensitive. I don't want to encourage you to change your approach, but just want to mention that GliadinX, which is an AN-PEP enzyme (that is a sponsor here) has been shown in multiple studies to break down trace amounts of gluten in the stomach, before it reaches the intestines.  I think everyone in the super sensitive category should consider taking one before each meal, even at home, for precisely the reason you mentioned--not all products marked gluten-free are 100% safe, and some do contain trace amounts of gluten, perhaps in the 0-19ppm range. I still eat out regularly and am careful about how I order, etc., but I now take a couple of them before I eat, and no longer have the issues I used to (I don't take them at home, but have used a Nima Sensor to test many things that I eat regularly).

One interesting and positive side-effect of going through this transformation in your diet is that you may end up eating a lot healthier. This was definitely the case for me, as I began to wonder why I had been eating foods with so many crazy chemical type ingredients that I didn't even understand. The easiest way for me to switch was to just eliminate the weird ingredients, and stick to foods with very simple ingredients.

Thank you so much for telling me this, I had no idea. I just ordered some GliadinX and I am so grateful I might burst into tears. I will do my best to take it before every meal, and still continue the gluten-free diet. For a while I will probably just stay safe eating at home, and then eventually branch out in a few months. Again, thank you so much, and thank you for the advice. I know what you mean with the crazy ingredients! Or at least I am starting to learn haha. This will definitely help my journey be smoother. It is still a crazy one, but I am very glad I posted in this forum.

[jenford244]

18 minutes ago, knitty kitty said:

Welcome to the forum, @jenford244!

I've adopted the AutoImmune Protocol Diet, which is fresh veggies and lean meat, grass fed beef.  Dr. Sarah Ballantyne developed it for her-Celiac-self and her Celiac children.  The AIP diet is scientifically shown to promote intestinal healing.  It has really helped me.  

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

I started having trouble with red meat until I switched to grass fed beef.  No problems with red meat now.

Make sure you take a good B Complex supplement.  Celiac Disease causes malabsorption which means we don't absorb nutrients well.  The eight essential B vitamins must be consumed every day. 

A gluten free diet can be lacking in B vitamins.  Where gluten containing products are required by law to be enriched with vitamins, gluten free facsimile foods are not.  So when we go gluten free, we need to source those vitamins from our safe foods and from supplements while healing.  

Yes, it is a bit of a mind adjustment when it comes to realising food manufacturers are in it to make a profit.  

Count yourself as very fortunate to have discovered your Celiac Disease so young in life.  Some of us old Celiacs have struggled with misdiagnosis and the resulting collateral damage.  

Stay strong.  Keep us posted on your progress!

Do you recommend any specific brands for B Vitamins, just to make sure I get something safe, or at least something that you feel that works for you? And yes it has been difficult to realize about the profit thing haha... But I guess that is the world we live in.... I am fortunate to know that Celiac is what has been causing so many of my issues, and I am thankful for all of you to share your wisdom as well! I will continue doing some research in the meantime and keep you all updated! 

[jenford244]

13 hours ago, trents said:

Lean meat, fresh fruits and veggies are what all of us celiacs would do better with if we were living on it entirely. I'm sure I could lose the 20 lbs I would like to shed if I was eating like you. Your current diet is exactly what we often recommend to those who start the celiac journey with very badly damaged villi. How long have you been eating truly gluten free? After your villi are completely healed you may find you are not so sensitive and can branch out some. But full healing of very damaged villi can take two years or more.

Truly gluten-free? Well I started changing my diet about 4 months ago, but was shocked with the amounts of food that still had wheat in them, or wheat-related ingredients, so I couldn't say for sure, but I found out at the beginning of the year, and have been trying to make the process work all this time haha. I hope my poor intestines heal soon! I read that it can take between 3-6 months for them to heal the epithelial lining...and I am not sure just how damaged they really are, but I can do my best to make sure I keep gluten away!

[knitty kitty]

5 minutes ago, jenford244 said:

Do you recommend any specific brands for B Vitamins, just to make sure I get something safe, or at least something that you feel that works for you? And yes it has been difficult to realize about the profit thing haha... But I guess that is the world we live in.... I am fortunate to know that Celiac is what has been causing so many of my issues, and I am thankful for all of you to share your wisdom as well! I will continue doing some research in the meantime and keep you all updated! 

I get Life Extension and Ecological Formulas from Amazon.  I take a B Complex and Allithiamine and Benfotiamine, magnesium citrate glycinate.  

Benfotiamine promotes gastrointestinal healing.  I take Benfotiamine with every meal.  Theanine, an amino acid supplement, and Tryptophan are beneficial for healing as well.

Keep us posted on your progress!   We're glad you've found us!

 

[LCAnacortes]

Yes, welcome! You are not crazy and you are definitely not alone. You have found your family here.  Many wise people that help us all on our journey.

And @knitty kitty holy smokes - I didn't even consider that animals that consume grain may lead to issues for us. Thank you for mentioning that.  Wow!

[knitty kitty]

@LCAnacortes,

You're very welcome.  

There's been other threads about chickens being fed wheat versus non wheat feed.  Same for cows.

😸

[Scott Adams]

This article may be helpful:

 

[trents]

3 hours ago, LCAnacortes said:

Yes, welcome! You are not crazy and you are definitely not alone. You have found your family here.  Many wise people that help us all on our journey.

And @knitty kitty holy smokes - I didn't even consider that animals that consume grain may lead to issues for us. Thank you for mentioning that.  Wow!

In my research of this issue I have found no scientific evidence to support the idea.

[LauraBee]

Yes! - You are not alone! I was diagnosed with Celiac about 18 years ago and I have never felt good, even after going gluten-free. And very long story short- I've been going to all these different naturopaths for years trying to figure out what is wrong with me and my new naturopath, just last week gave me test results that show I've still been consistently eating gluten!! So I got the Nima sensor and discovered (so far) that my "gluten free certified" Tigernut Flour was contaminated as well as a coconut powder I've been using. I've been doing AIP for 2 years and also not eating out or eating anything not cooked by myself - and it turns out I was feeding it to myself!! Ugh. So this week I took every packaged food out of my cupboard and I'm just starting from scratch. It would be too expensive to Nima test it all - so I am making a list of packaged foods I would like to be able to keep (coconut flour, tigernut flour, arrowroot flour, etc.) - just some basics - and then I have been researching the various certification companies (looks like they aren't all the same - I didn't know this!) and then I am contacting each company of the product I am interested in to try and do a double check of their manufacturing process. Then when I get the product I'm going to check it also with my Nima sensor. The whole thing is overwhelming and I've cried a bunch over the whole situation (including my lost years of being sick and maybe had I understood the manufacturing process and about gluten contamination I could have gotten well a LONG time ago). So I'm going to be eating mainly fresh veggies and fruits and meat and then hopefully can add a FEW rigorously researched products. I totally feel for you and applaud you for working hard to figure out your health. Stay strong!! 

[trents]

11 minutes ago, LauraBee said:

Yes! - You are not alone! I was diagnosed with Celiac about 18 years ago and I have never felt good, even after going gluten-free. And very long story short- I've been going to all these different naturopaths for years trying to figure out what is wrong with me and my new naturopath, just last week gave me test results that show I've still been consistently eating gluten!! So I got the Nima sensor and discovered (so far) that my "gluten free certified" Tigernut Flour was contaminated as well as a coconut powder I've been using. I've been doing AIP for 2 years and also not eating out or eating anything not cooked by myself - and it turns out I was feeding it to myself!! Ugh. So this week I took every packaged food out of my cupboard and I'm just starting from scratch. It would be too expensive to Nima test it all - so I am making a list of packaged foods I would like to be able to keep (coconut flour, tigernut flour, arrowroot flour, etc.) - just some basics - and then I have been researching the various certification companies (looks like they aren't all the same - I didn't know this!) and then I am contacting each company of the product I am interested in to try and do a double check of their manufacturing process. Then when I get the product I'm going to check it also with my Nima sensor. The whole thing is overwhelming and I've cried a bunch over the whole situation (including my lost years of being sick and maybe had I understood the manufacturing process and about gluten contamination I could have gotten well a LONG time ago). So I'm going to be eating mainly fresh veggies and fruits and meat and then hopefully can add a FEW rigorously researched products. I totally feel for you and applaud you for working hard to figure out your health. Stay strong!! 

Look for products in the stores that are labeled "Certified Gluten Free" instead of just "Gluten Free". CGF indicates stricter standards were used.

[LauraBee]

1 minute ago, trents said:

Look for products in the stores that are labeled "Certified Gluten Free" instead of just "Gluten Free". CGF indicates stricter standards were used.

Yes, it was "certified" but it was certified by the GFFP and not the GFCO. Do you have a certification company that you trust over others? It seems like there is a difference in the rigorous oversight between them. From the reading I did, (which was just a little!) the GFCO seems a bit more legit than the GFFP. Do you know much about this?? It is all very overwhelming to me.

[knitty kitty]

@trents,

This article discusses the differences found in grass fed versus grain fed cattle.  

Grass fed cattle have better meat and healthier fat ratios and less stress hormone, cortisol, than grain fed cattle.  

 

Integrated metabolomic and transcriptome analyses reveal finishing forage affects metabolic pathways related to beef quality and animal welfare

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4869019/

 

"In Summary, our results provide evidence that grass-fed animals produce tender beef with lower total fat, higher omega3/omega6 ratio and superior protein content than grain-fed animals, which are beneficial for the health of consumers. Finally, the higher blood cortisol level in the grain-fed group strongly suggests that grass-fed animals experience less stress; mainly from moving freely, exercising their muscles and expressing usual species behavior in a more natural environment."

Edited August 12, 2022 by knitty kitty
Typo correction

[trents]

KK, I was not commenting on whether or not beef from grass fed cows is generally healthier but the idea that eating beef from grain fed cattle poses a gluten-reaction risk for celiacs or NCGS people. Admittedly, I didn't read your post that LCAnacortes reacted to but I made an assumption it was about getting glutened by eating beef from grain fed cows. That hypothesis has shown up on this forum at times. I was guided in my assumption by the title of this thread.

Edited August 12, 2022 by trents

[jenford244]

30 minutes ago, LauraBee said:

Yes! - You are not alone! I was diagnosed with Celiac about 18 years ago and I have never felt good, even after going gluten-free. And very long story short- I've been going to all these different naturopaths for years trying to figure out what is wrong with me and my new naturopath, just last week gave me test results that show I've still been consistently eating gluten!! So I got the Nima sensor and discovered (so far) that my "gluten free certified" Tigernut Flour was contaminated as well as a coconut powder I've been using. I've been doing AIP for 2 years and also not eating out or eating anything not cooked by myself - and it turns out I was feeding it to myself!! Ugh. So this week I took every packaged food out of my cupboard and I'm just starting from scratch. It would be too expensive to Nima test it all - so I am making a list of packaged foods I would like to be able to keep (coconut flour, tigernut flour, arrowroot flour, etc.) - just some basics - and then I have been researching the various certification companies (looks like they aren't all the same - I didn't know this!) and then I am contacting each company of the product I am interested in to try and do a double check of their manufacturing process. Then when I get the product I'm going to check it also with my Nima sensor. The whole thing is overwhelming and I've cried a bunch over the whole situation (including my lost years of being sick and maybe had I understood the manufacturing process and about gluten contamination I could have gotten well a LONG time ago). So I'm going to be eating mainly fresh veggies and fruits and meat and then hopefully can add a FEW rigorously researched products. I totally feel for you and applaud you for working hard to figure out your health. Stay strong!! 

I am so sorry that you've been consistently eating it!! That's what I feel has been happening with me too, it is so crazy that it's hidden in so many places we didn't expect. Even if it says it's certified gluten free there is no real way we can know or trust it! I have been thinking about the GliadinX and wondering if I should just take it with every meal just in case? or if it would somehow be bad/unhealthy to do that? Of course I would still stay on my gluten-free diet, but having the supplement with me as well. Thank you for what you said and I appreciate that! I will do my best to stay strong! Everyone here has been great and I super appreciate this forum.

[jenford244]

Do any of you recommend any other supplements to help heal the intestines? 

[LauraBee]

Just now, jenford244 said:

I am so sorry that you've been consistently eating it!! That's what I feel has been happening with me too, it is so crazy that it's hidden in so many places we didn't expect. Even if it says it's certified gluten free there is no real way we can know or trust it! I have been thinking about the GliadinX and wondering if I should just take it with every meal just in case? or if it would somehow be bad/unhealthy to do that? Of course I would still stay on my gluten-free diet, but having the supplement with me as well. Thank you for what you said and I appreciate that! I will do my best to stay strong! Everyone here has been great and I super appreciate this forum.

I was thinking the same thing about the GliadinX! It doesn't seem like it would be bad (that is just me thinking out loud - lol!) I had contacted our local Gluten support group with some questions and the two head leaders told me that in order to heal they both went on an only fresh foods diet and cut out EVERY packaged product, including salt and spices. That is hardcore, but worth it if it works! It is definitely crazy making. And I feel hungry. This total fresh diet takes a lot of planning ahead. I do eat canned sardines a lot - which isn't fresh, and I haven't tested it, but it seems like a low risk item  They are actually quite delicious and sustaining. 

[jenford244]

4 minutes ago, LauraBee said:

I was thinking the same thing about the GliadinX! It doesn't seem like it would be bad (that is just me thinking out loud - lol!) I had contacted our local Gluten support group with some questions and the two head leaders told me that in order to heal they both went on an only fresh foods diet and cut out EVERY packaged product, including salt and spices. That is hardcore, but worth it if it works! It is definitely crazy making. And I feel hungry. This total fresh diet takes a lot of planning ahead. I do eat canned sardines a lot - which isn't fresh, and I haven't tested it, but it seems like a low risk item  They are actually quite delicious and sustaining. 

Right! I was thinking about doing something like this too, you're right it is pretty hardcore, but might be necessary for those of us who have a lot of sensitivity to it... It's crazy how it makes us feel like we're the crazy ones! But it's our intestines that we need to look out for. I am just worried about the villi in my small intestines, celiac has actually been the cause for my growth problems and all these years didn't even know! I love sardines too... Cutting out spices has seemed to help me, but I guess it is everyone's choice what they are willing to do for their health haha. I just hope one day people can realize just how prevalent gluten is in our society, and how many more people are celiacs without even knowing it. I think I read somewhere that it's "the most under-diagnosed disease" and that's really such a tragedy! Hoping one day that big companies finally make the change in their factories. It's not just a fad! But I digress haha

[LauraBee]

1 minute ago, jenford244 said:

Do any of you recommend any other supplements to help heal the intestines? 

just an experiential thought: are you seeing a naturopath at all? Part of my issue, that was discovered in the test that revealed I was still eating gluten, was it also showed a huge picture of my gut health - what bacterias were there, mucosal secretion, etc. I have a couple of gut bacterial infections that can now hopefully be treated once I clear my system of gluten. So my naturopath is giving my supplements that will help my gut based off of the stool test. 

On my own, I bought a product called Optimal G.I. by Seeking Health and one called "Daily Gut Detox Cleanse" which is an Immunoglobulin product by a company called Silver Fern. HOWEVER, I haven't verified if they are truly gluten-free as I just discovered my sad contamination issue so recently. My naturopath does recommend an Xymogen brand Immunoglobulin product, but is sourced from eggs and I was concerned to try it because I react to eggs. 

[knitty kitty]

2 hours ago, trents said:

KK, I was not commenting on whether or not beef from grass fed cows is generally healthier but the idea that eating beef from grain fed cattle poses a gluten-reaction risk for celiacs or NCGS people. Admittedly, I didn't read your post that LCAnacortes reacted to but I made an assumption it was about getting glutened by eating beef from grain fed cows. That hypothesis has shown up on this forum at times. I was guided in my assumption by the title of this thread.

No, no gluten in beef.  No cross contamination possible there.  

However, grain fed beef contains higher levels of cortisol, which is inflammatory.

Edited August 12, 2022 by knitty kitty
Typo correction

[OWYN]

On 8/11/2022 at 12:39 AM, jenford244 said:

Who else deals with this? Please tell me I'm not alone. I've had to completely eliminate going out to eat PERIOD, having any food or drinks, coffees, teas, snacks, that aren't bought at a store with my own hands, and aren't super processed and ambiguous - which leaves only fruits and vegetables, lean meats, to be safe.
Nothing that can even be remotely related or near wheat (corn, oats) can enter my body. I don't eat red meat or have dairy while my intestines are healing from years of damage. It's gotten pretty bad (blood).

For example, I just had to throw out a protein powder that I loved, that claimed to be free of gluten, and other food items that cause people allergies. (I don't have a gluten allergy, I have celiac disease.) Because said item was processed in a factory with wheat, but nowhere on the container did it state this. Which infuriated me. If you want to know it is the brand OWYN. I would advise avoiding it, and all protein powders for that matter. I wouldn't have even known if it wasn't for a comment through amazon.com, then started paying attention to how it made me feel. Now no protein powders are safe. Have had to go through this all on my own.

Has anyone else had to deal with these difficulties, any of them, and if so, what did you do to help cope with this? What kinds of emotions and thoughts ran through your head? What did you do to help remind yourself? I've had quite a few emotional breakdowns over this. And please don't tell me that it's something else and I need to see a specialist, because I have. 

What foods do you like to eat? What foods do you like to cook, what are some general tips and tricks, things you've learned that you can/wouldn't mind to send my way? 

Now I have to stick to just fruits, vegetables, and lean meats forever now, and this whole process has just made me feel like I'm in a bad dream that I can't wake up from. It doesn't even feel like reality. I turned 26 this year and if it wasn't for 23andMe (last Christmas) I wouldn't even know I had Celiac. But since doing a vast diet change my constipation has stopped, I'm having regular bowel movements, though worrysome still -- my general mental health has felt a lot better and my physical health too. I don't feel sick all the time like I used to and didn't know what was going on. 

Any advice or wisdom, general knowledge any of you may have is seriously appreciated.

Thank you.

Julia here from OWYN. We can assure you that OWYN is not processed in a factory with wheat. Our brand was created because our founders and their family members have life threatening food allergies - this is personal for us. We work with industry leaders to establish the highest standards in 3rd party food testing. We test independent ingredients before production, and we test our finished goods after production. You can check out our website to learn more about our testing results and our PPM requirement for each test: https://liveowyn.com/allergen-tested-protein-shakes/ Please let us know if you have any questions. 

Julia here from OWYN. We can assure you that OWYN is not processed in a factory with wheat. Our brand was created because our founders and their family members have life threatening food allergies - this is personal for us. We work with industry leaders to establish the highest standards in 3rd party food testing. We test independent ingredients before production, and we test our finished goods after production. You can check out our website to learn more about our testing results and our PPM requirement for each test: https://liveowyn.com/allergen-tested-protein-shakes/ Please let us know if you have any questions. 

[Scott Adams]

16 hours ago, jenford244 said:

I am so sorry that you've been consistently eating it!! That's what I feel has been happening with me too, it is so crazy that it's hidden in so many places we didn't expect. Even if it says it's certified gluten free there is no real way we can know or trust it! I have been thinking about the GliadinX and wondering if I should just take it with every meal just in case? or if it would somehow be bad/unhealthy to do that? Of course I would still stay on my gluten-free diet, but having the supplement with me as well. Thank you for what you said and I appreciate that! I will do my best to stay strong! Everyone here has been great and I super appreciate this forum.

I see nothing wrong with this approach, because you would be dealing with the "what ifs" of possible gluten contamination, even when a product is certified gluten-free, as was mentioned earlier in this thread. Of course taking these enzymes should never be done in order to purposefully cheat on your diet, but they may mitigate small amounts of contamination that could otherwise cause harm over time.