Feeling overwhelmed and down. My life is not gluten free, I am failing.

[Lynne Marie]

I stopped eating gluten late last June and enjoyed the most wonderful, symptom free summer and my body felt so so good. Six months later, I started feeling like I was messing up somewhere and had some accidental glutening. I got stricter about labels (I moved to only eat processed food certified gluten free instead of things that were usually gluten free like rice cakes and oatmeal, no more assuming, only eating certified gluten-free )

But the symptoms of low level gluten contamination continued. Its now almost every day at this point.  I feel my stomach go a little nuts every day now, I see in my "bathroom time" that things are not 100% okay. 

I am still LOADS better than before when I ate gluten but I should be totally free of symptoms at this point. 
I use toaster bags for the toaster (still considering buying my own) I have stopped using the communal convection oven (considering getting a designated air fryer) I keep all the counters and the table wiped down. I haven't bought new pots, pans and everything yet, because it just seemed ab bit insane to have complete separate kitchen stuff (and also: money) Is that where this is going!?!?

My gluten eating family LIVES HERE. There is gluten here. I can't change this. I am totally stressed out about where it's coming from. Constantly checking everything. 

I was out for the day yesterday and I didn't prepare any food in my home for me to eat, and also didn't feed or take care of my two dogs (so they didn't get training treats or food from me) I  ate gluten-free food /snacks straight from the original packaging (cheese, fresh veggies, gluten-free rice cakes etc) Guess what happened? Nothing. I had no symptoms that day. Just a tiny bit of the gurgles somewhere in the evening (mind you, after being back home)

Today I was keeping an eye out for contamination. Feels like gluten is everywhere. I noticed that when I fed the dogs 20 minutes later, my stomach is protesting. I literally only opened the food bin, scooped the food into the bowls and then washed my hands.
I have long been suspicious that dog food and dog treats could be an issue ( I train the dogs a lot, because one is also a puppy and my jacket is full of kibble and snacks. The food is on everything, including my gloves and all my gear) 

I am so bummed. I feel like I will never things under control. I just want to cry. Cutting out gluten from my diet is doable and fine. But cutting it out of my life seems impossible. I can't even believe such small amounts of gluten could even do this (how!?!?) 

I would appreciate any words of encouragement, commiseration or tips. I am at my breaking point. 

[Darren]

Hi Lynne, I urge you to get your own toaster, never use a glutened toaster it's too risky since just 1 crumb can cause big problems. Yes get separate kitchenware BUT if its stainless steel and washed properly it's ok. Frying pans get your own since scratches can house gluten. No wooden spoons, no silicone cooking utensils, cutlery is fine if steel. Now think about cleaning, never wash gluten and non gluten pots and pans together unless you start with the gluten free first. Definitely use a separate scrubber or sponge for everything that has gluten on it, or your cleaning scrub is contaminated.  My wife and son use a dedicated corner of the kitchen counter to prep stuff like sandwiches just to help keep risk of cross contamination down.  Try these things and hang in there. You and your family will adjust to what needs to be done. It's not that big a deal once you adjust. Stay vigilant and be positive, just remember it's better to have a disease that you can treat vs one that you cant. So could be much worse. Hang in there!

Darren

 

[Lynne Marie]

40 minutes ago, Darren said:

Hi Lynne, I urge you to get your own toaster, never use a glutened toaster it's too risky since just 1 crumb can cause big problems. Yes get separate kitchenware BUT if its stainless steel and washed properly it's ok. Frying pans get your own since scratches can house gluten. No wooden spoons, no silicone cooking utensils, cutlery is fine if steel. Now think about cleaning, never wash gluten and non gluten pots and pans together unless you start with the gluten free first. Definitely use a separate scrubber or sponge for everything that has gluten on it, or your cleaning scrub is contaminated.  My wife and son use a dedicated corner of the kitchen counter to prep stuff like sandwiches just to help keep risk of cross contamination down.  Try these things and hang in there. You and your family will adjust to what needs to be done. It's not that big a deal once you adjust. Stay vigilant and be positive, just remember it's better to have a disease that you can treat vs one that you cant. So could be much worse. Hang in there!

Darren

 

Hi darren, thank you for your tips. I think I am going to have to bite the bullet: I haven't been using separate frying pans (teflon) and have even been using the same wooden spoons and cutting boards (I know! I know! I just thought if they are scrubbed it should be okay. ) I also never even thought about the the scrubbers and sponges until someone mentioned it im my last post, I think. Notes are being taken here!! 
I have decided to create a little station in the kitchen (like a trolly but with counter space) and put all of the gluten free pots and pans and toaster and utensils that I will be also buying on there and get things separate. I will just use that to prepare all my food and also keep my cooking stuff separate. So yeah, thanks for the encouragement in that area.
I am still worried about the dog food (seems to be a larger issue than I though) We just bought two huge bags of it and it most certainly has gluten in it. I think I will ask my husband to do the dog food stuff and I will have to go out and get dried meat for treats. I have no idea what to do about my jacket, it has a ton of pockets and kibble crumbs are in all of them. I am not sure rigorous cleaning is gonna do it. *sigh* 

Does anyone know if I can share an air fryer? The baskets get cleaned completely... but thinking the fan might distribute any gluteney residue from a previous cooking session. Thoughts?? 

[Darren]

Dont share the fryer. I would ask your husband about a slightly different approach. What we do in my family is stay mostly gluten free overall, but when my wife and son want gluten THEY are the ones who use a designated area and pots etc.  Its far safer that they accommodate you vs you accommodating their gluten diet. They can eat what they want but they have to he careful in order for you to stay healthy. It's a small sacrifice when they arent the ones at risk. Give that a try and hopefully your husband will be understanding and supportive. People have no idea how hard it is emotionally and psychologically...their support means a lot, let him know that.  Best of luck and please feel free to ask more questions. You arent alone, you got this!

[Lynne Marie]

4 minutes ago, Darren said:

Dont share the fryer. I would ask your husband about a slightly different approach. What we do in my family is stay mostly gluten free overall, but when my wife and son want gluten THEY are the ones who use a designated area and pots etc.  Its far safer that they accommodate you vs you accommodating their gluten diet. They can eat what they want but they have to he careful in order for you to stay healthy. It's a small sacrifice when they arent the ones at risk. Give that a try and hopefully your husband will be understanding and supportive. People have no idea how hard it is emotionally and psychologically...their support means a lot, let him know that.  Best of luck and please feel free to ask more questions. You arent alone, you got this!

Sadly, my family is not willing to give up gluten. 😔 They try to support me in other ways, but that isn't one of them. 

I think for the last week I have just been throwing myself a pity party. I have previously been diagnosed with an  auto-immune disorder (about 25 years ago) and I can kind of remember going through a mourning phase at some point. I think I am going through that again. I am just really sad and bummed lately.

[Raptorsgal]

Wow I never even though of some of the things you are saying about toaster pans . I just had my blood test done a less then a week ago  it’s very likely I have Celiac. What does certified gluten mean compared to just gluten free.

[Darren]

Your family doesnt have to give up gluten, what I meant was that rather than you have dedicated gluten-free zone in the kitchen, they have a designated gluten zone which makes the odds tilted more in your favour. That way most of the kitchen is safe. If you happen to be the chef of the family, you tell them what the rules are...the chef rules the kitchen https://www.celiac.com/uploads/emoticons/default_smile.png

Also, does your husband realize the very real long term effects of gluten exposure? Maybe he needs to read more about it to learn and understand.

Certified gluten-free means it's as safe as it gets. The company has met a high standard to prove they are gluten-free and have been tested and verified by a 3rd party. gluten-free just means the company says they meet the criteria of being gluten free. No verification. I find that certified never cause me issues. Sometimes things labelled gluten-free do. So when that happens I just take note not to buy that brand. I've had that happen with gluten-free potato chips before. Luckily Targets brand are certified, cheap and good! 

[Raptorsgal]

How about in Canada do they have that certified thanks 

[Darren]

Do you mean the chips? Target isnt in Canada anymore, but there are other brands that are. I think lays might be, doritos are... I'm Canadian but live in the US now. Certification works the same way in both countries. Is that what you were asking?

[Raptorsgal]

Yes thanks 

[LCAnacortes]

Your dog food very likely has wheat in it.  I read the label on our dry cat food and it had wheat and other gluten ingredients.  Once I stopped handling that - my DH cleared up, a lot.  My husband eats gluten. I do not.  We split our kitchen so to the left of the sink is dedicated gluten-free and to the right of the sink is where the regular bread and other stuff goes.  Everything goes in the dishwasher and that has worked out OK.  Make sure you have your own mayonnaise, butter, jam and other condiments. If a knife has touched bread and then touched the product then it is contaminated.  And have your family pour potato chips out of the bag. They are naturally gluten free - but if hands touch it with gluten on them - the product is now contaminated.  Once we figured all of this out - things are much better. I have been gluten free since early May. I have also had to give up dairy (lactose). I have found good alternatives for most products, I just have to be more careful. I had horrible diarrhea, pain, cramps, and bloating - often diarrhea was explosive and uncontrolled, yellow & stinky before I gave up gluten. Now it only happens when I get accidently glutened.  It is even worse now when it happens and I don't feel well for several days but it isn't pain & bloating and D every day multiple times a day.  I am finally getting my life back. There is hope 😃   

[Lynne Marie]

8 hours ago, Darren said:

Your family doesnt have to give up gluten, what I meant was that rather than you have dedicated gluten-free zone in the kitchen, they have a designated gluten zone which makes the odds tilted more in your favour. That way most of the kitchen is safe. If you happen to be the chef of the family, you tell them what the rules are...the chef rules the kitchen https://www.celiac.com/uploads/emoticons/default_smile.png

Also, does your husband realize the very real long term effects of gluten exposure? Maybe he needs to read more about it to learn and understand.

Certified gluten-free means it's as safe as it gets. The company has met a high standard to prove they are gluten-free and have been tested and verified by a 3rd party. gluten-free just means the company says they meet the criteria of being gluten free. No verification. I find that certified never cause me issues. Sometimes things labelled gluten-free do. So when that happens I just take note not to buy that brand. I've had that happen with gluten-free potato chips before. Luckily Targets brand are certified, cheap and good! 

"Also, does your husband realize the very real long term effects of gluten exposure? Maybe he needs to read more about it to learn and understand."

Darren, it would seem, that the conversations I had with him at the beginnings of giving up gluten had been forgotten. 😔 He is just now waking up to the realisation of what this all means. I have shown him this thread and he seems to be having some a-ha moments. I haven't been tested yet (I am struggling about doing the gluten challenge, but I am DQ2 positive and I have also reacted well, at least initially, to going gluten-free for my symptoms.) Hubby is "holding onto hope" that it is something else, less damaging. (<-- I think this is his silver bullet to not have to go so extreme in our household. It would be a relief if he was right, even though I don't feel like it's the most likely. But it's all only sure after testing and ruling out other things. So there's that.) 

So moving forward, plans are :
1) creating a gluten-free mini Island in my kitchen and try to get it under control that way. I want to start eating my snacks /the meals I don't eat with my family there as well (our kitchen is a a gluten hellscape 😂. I never knew people could eat so much bread! I am an american living abroad and bread is serious business here. Everything is always covered in something bread-y / pasta-y/ flour-y etc. Sometimes I swear it's in the air. Big household, lots of kids and somebody somewhere is always toasting something or making a big gluten mess on the counters.
2) I am going to get my own gluten-free placemat for when I set the table, so my table set doesn't touch anything. Getting separate sponges, pots and pans, toaster and airfryer and all the other utensils I need and keep everything in my Kitchen Island. 
3) only gluten-free dog food and snacks. (it will take a little bit to get that sorted, as we just bought a huge bag of normal dog food, and we can't offload it, as it's been opened.) 

This plan is gonna take some time and money to sort out, so I will have to take it step by step. 

[Lynne Marie]

5 hours ago, LCAnacortes said:

Your dog food very likely has wheat in it.  I read the label on our dry cat food and it had wheat and other gluten ingredients.  Once I stopped handling that - my DH cleared up, a lot.  My husband eats gluten. I do not.  We split our kitchen so to the left of the sink is dedicated gluten-free and to the right of the sink is where the regular bread and other stuff goes.  Everything goes in the dishwasher and that has worked out OK.  Make sure you have your own mayonnaise, butter, jam and other condiments. If a knife has touched bread and then touched the product then it is contaminated.  And have your family pour potato chips out of the bag. They are naturally gluten free - but if hands touch it with gluten on them - the product is now contaminated.  Once we figured all of this out - things are much better. I have been gluten free since early May. I have also had to give up dairy (lactose). I have found good alternatives for most products, I just have to be more careful. I had horrible diarrhea, pain, cramps, and bloating - often diarrhea was explosive and uncontrolled, yellow & stinky before I gave up gluten. Now it only happens when I get accidently glutened.  It is even worse now when it happens and I don't feel well for several days but it isn't pain & bloating and D every day multiple times a day.  I am finally getting my life back. There is hope 😃   

Wow, sounds like everything is sorted really well in your household. I do have my own condiments (butter, jam, honey, etc) and I think this has helped a bit. I have a looong way to go to where you are, though. (organisation wise) 

Bummer about the lactose intolerance. Are you sensitive to even small amounts of lactose (like in processed foods) or do you just have to avoid drinking milk and dairy stuff?? I think I would lose my mind if another thing was added to my list of "no's" It's so stressful! 
I hear you on the bathroom issues! I am so glad you feel better now. 🌻

[Darren]

3 hours ago, Lynne Marie said:

"Also, does your husband realize the very real long term effects of gluten exposure? Maybe he needs to read more about it to learn and understand."

Darren, it would seem, that the conversations I had with him at the beginnings of giving up gluten had been forgotten. 😔 He is just now waking up to the realisation of what this all means. I have shown him this thread and he seems to be having some a-ha moments. I haven't been tested yet (I am struggling about doing the gluten challenge, but I am DQ2 positive and I have also reacted well, at least initially, to going gluten-free for my symptoms.) Hubby is "holding onto hope" that it is something else, less damaging. (<-- I think this is his silver bullet to not have to go so extreme in our household. It would be a relief if he was right, even though I don't feel like it's the most likely. But it's all only sure after testing and ruling out other things. So there's that.) 

So moving forward, plans are :
1) creating a gluten-free mini Island in my kitchen and try to get it under control that way. I want to start eating my snacks /the meals I don't eat with my family there as well (our kitchen is a a gluten hellscape 😂. I never knew people could eat so much bread! I am an american living abroad and bread is serious business here. Everything is always covered in something bread-y / pasta-y/ flour-y etc. Sometimes I swear it's in the air. Big household, lots of kids and somebody somewhere is always toasting something or making a big gluten mess on the counters.
2) I am going to get my own gluten-free placemat for when I set the table, so my table set doesn't touch anything. Getting separate sponges, pots and pans, toaster and airfryer and all the other utensils I need and keep everything in my Kitchen Island. 
3) only gluten-free dog food and snacks. (it will take a little bit to get that sorted, as we just bought a huge bag of normal dog food, and we can't offload it, as it's been opened.) 

This plan is gonna take some time and money to sort out, so I will have to take it step by step. 

Sounds like a good plan, all the best to you!

[LCAnacortes]

Vegan food helps eliminate lactose. I am still figuring out what dairy I can and can't have.  Hard, aged cheese like cheddar, swiss, parmesan are low lactose and seem to be OK.  Oat milk is good and creamy so I'm going with that. Products with skim milk in them seem to be OK.  But - first eliminate the gluten & gluten cross contamination and then see where you are.  I found that dairy gave me urgent diarrhea but it was more normally colored so that's when I suspected diary might be an issue.  It has been an issue with my daughter for years. Good luck as you figure this out.  You have a lot of super smart people here to help you on your journey.  

[Lynne Marie]

1 hour ago, LCAnacortes said:

Vegan food helps eliminate lactose. I am still figuring out what dairy I can and can't have.  Hard, aged cheese like cheddar, swiss, parmesan are low lactose and seem to be OK.  Oat milk is good and creamy so I'm going with that. Products with skim milk in them seem to be OK.  But - first eliminate the gluten & gluten cross contamination and then see where you are.  I found that dairy gave me urgent diarrhea but it was more normally colored so that's when I suspected diary might be an issue.  It has been an issue with my daughter for years. Good luck as you figure this out.  You have a lot of super smart people here to help you on your journey.  

Oh, there was a misunderstanding: I don't think I react to lactose (at least it would seem so at the moment) But as we are talking about it: my daughter doesn't tolerate lactose. She doesn't look at labels and such, but she does just basically do a diet similar to you (hard and aged cheeses, nut and soy milks etc. )

The people in the forum are so knowledgeable and kind. I feels like everything has been through it  all!

[Lynne Marie]

Today I was super cautious: no dog food, no using communal pots and pans (I had a set of brand new camping pans I haven't used yet. I used those!), new special designated sponge and hand towel, special placement for the table. 

Results: I basically had very little symptoms today. My "bathroom time" is still obviously not alright yet (that will take about two weeks to shake out, in my experience) but I am feeling super positive at the moment. 

Thanks folks for all your support. I feel a whole lot better now. You guys have all been great. 🌻

[Darren]

13 minutes ago, Lynne Marie said:

Today I was super cautious: no dog food, no using communal pots and pans (I had a set of brand new camping pans I haven't used yet. I used those!), new special designated sponge and hand towel, special placement for the table. 

Results: I basically had very little symptoms today. My "bathroom time" is still obviously not alright yet (that will take about two weeks to shake out, in my experience) but I am feeling super positive at the moment. 

Thanks folks for all your support. I feel a whole lot better now. You guys have all been great. 🌻

I just thought of one more watch out. Oats can cause problems with some people even though they are naturally gluten-free. Oats are grown in the same fields as wheat so cc can easily occur. Even certified gluten-free oats can be a problem due to another issue in that there is a protein that is very similar to gluten and can trigger a response. I had to give them up, total bummer, but it helped. I suffer from dh due to celiac and that's how I can identify problems fairly well for me. So be cautious of oats even gluten-free ones if you still have issues including oat milk and snack bars etc with oats. If you like oatmeal and porridge, try buckwheat groats, they are tasty and are gluten-free despite the name. They're healthier too actually. 

Take care.

[LCAnacortes]

You may not experience a lactose problem now - but be on the lookout.  Often folks with celiac will discover they have problems with other things too.  For me I didn't realize that lactose was a problem until I'd been off of gluten for a while.  If your daughter has a problem - you may have a problem later.  

 

[Lynne Marie]

1 minute ago, Darren said:

I just thought of one more watch out. Oats can cause problems with some people even though they are naturally gluten-free. Oats are grown in the same fields as wheat so cc can easily occur. Even certified gluten-free oats can be a problem due to another issue in that there is a protein that is very similar to gluten and can trigger a response. I had to give them up, total bummer, but it helped. I suffer from dh due to celiac and that's how I can identify problems fairly well for me. So be cautious of oats even gluten-free ones if you still have issues including oat milk and snack bars etc with oats. If you like oatmeal and porridge, try buckwheat groats, they are tasty and are gluten-free despite the name. They're healthier too actually. 

Take care.

oooh! Buckwheat sounds interesting! So it's tasty?? I'll have to try. 
I really need my oats everyday (seeing as the gluten-free Müsli is not very nice, I tend to mix up my own and oats are a big part of that) I eat the certified oats and sadly I can't drink my morning "Oatly" brand oat drink in my coffee anymore (not certified) So far, I think its been good... at least I haven't noticed anything I can pin to oats. (I'll keep an eye out) 

[Lynne Marie]

4 minutes ago, LCAnacortes said:

You may not experience a lactose problem now - but be on the lookout.  Often folks with celiac will discover they have problems with other things too.  For me I didn't realize that lactose was a problem until I'd been off of gluten for a while.  If your daughter has a problem - you may have a problem later.  

 

oh no 😭 

I sure hope not.

How long did it take you to realise?

All three of my kids have autoimmune stuff: kid one has lactose stuff and had some histamine thing going on (I had 6 months of chronic Urticaria and she had one episode) , kid two is allergic to everything in the air and environment, and kid three has issues with her thyroid (still sorting that out) . Basically we are cursed. 😂😭

[Darren]

You have enough on your plate, dont worry about dairy unless you actually have issues with it. I've been celiac for 10 years and no dairy issues at all. Just focus on the things you can control today.

If oats cause no problems same thing, dont worry about it. I love oats and it was really disappointing to give them up. However I got over it, you will too with your obstacles. Keep positive!

[RMJ]

Next time you buy dog food you might look for some without wheat or barley.  I also handle dog food and treats a lot and did this just so I wouldn’t have to worry about that source of gluten.  There are a lot of grain free foods out there, and some that only use rice or corn as the carbohydrate.

[Raptorsgal]

How about If you work in a kitchen how do you deal with not seeing gluten. It’s been 3 days I haven’t eaten gluten which is a good start life Changing  for sure 

[Darren]

2 hours ago, Raptorsgal said:

How about If you work in a kitchen how do you deal with not seeing gluten. It’s been 3 days I haven’t eaten gluten which is a good start life Changing  for sure 

Not sure I understand your question...doesnt matter to me if I see it or not.