Newbie question- glutened by crumbs in RV

[ffyrebird]

 Hi! I am a newbie diagnosed with Celiac about six months ago.  I have been doing pretty good at avoiding gluten and feel much better since being diagnosed.

That is until the last week and a half.  I have been traveling across country with my family and mother in law on our new RV's maiden voyage.  My family has switched to gluten-free for me and that is all the food we packed.  I have been very careful to research places we eat out at and fast if they seem confused by gluten-free requests.  I'd rather not eat than get sick.  Despite my best precautions I am sicker than I have ever been and for longer.  Normally, if I get glutenned I have a bad day or two.  Not this time.  i have been sick since the second day of our trip and it just keeps getting worse!!!!

I couldn't figure out what was going on.  Then I saw my Mother in law sitting on the couch eating her morning non-gluten-free English muffin, crumbs scattered  down her blouse.  I looked around at my kiddos at the dinette eating non-gluten-free oatmeal she had made for them.  Later that day at the same dinette where I play cards and games with the family she was eating non-gluten-free crackers out of a wrapper on the table top and just brushed the crumbs off to the  floor when she finished.

Could all these little gluten crumbs in a tiny RV living space be the reason I keep getting sicker and sicker despite eating practically nothing now(only gluten-free certified straight out of the container for the past few days.)???

I don't want to say anything to my mother in law if I don't have to.  She basically quit doing anything with a friend of hers when she was DXed as celiac because it was too hard for her to deal with her friends diet and restaurant restrictions.

This was a family trip and I don't want to cause any more trouble by being "special" than I already have.  Any suggestions??

Thanks,

Sonya

 

 

 

 

[cyclinglady]

Yikes!  You could very well getting glutened by your MIL!  An RV is a tiny place!  Even if you have been glutened at a restaurant, how can you relax on your vacation?  

 We have an RV and and it is gluten free (my house too).  All of our family and friends respect us and our decision not to let Gluten in the house or RV.  If your MIL can not comply, too bad.  She can Skype you from the comfort of her gluten-filled  home.  She can treat your kids to meals at her place or take them out.  

I am sorry to report that while I was just anemic when I was diagnosed, a gluten exposure (twice I had no clue as to what glutened me) lasts for three months -- six to regain lost weight.    The consequences continued to build long after my exposure.    Four weeks after my exposure and my antibodies were off the charts!  

Was it Gluten or not?  Who knows?  Maybe your GI will run a celiac antibodies test.  If elevated, perhaps this will help your MIL understand that you are sick.

I wish you well.  Gee, at least you have a toilet with you.  What a fun trip.  An RV experience should be perfect for celiacs!  

[Ennis-TX]

Yep willing to bet that is it. My mother used to love cream of wheat, would poison the hell out of me trying to cook in that old house...there is one funny story about me confronting her but that goes extreme and funny feel free to ask later. Anyway I learned to lay out freezer paper when cooking and fixing meals outside my safe kitchen to make sure I am safe.

Also you could provide the food for the RV next time, Van's makes some good gluten-free muffins, and Enjoy Life has a bunch of soft and hard cookie options and baked goods. I keep these in stock for when I have friends stay over who are used to eating processed junk foods. Just keep gluten-free alternatives for her and make sure she understands your health issues. IT IS YOUR LIFE AND YOUR HEALTH, I tend to be a bit of a extremist with this but my I thought I was dying years ago before diagnoses. My reactions with my brain and nerve damage traumatized me quite bad. But you still need to put your foot down and offer compromises with gluten-free alternatives.

[ffyrebird]

Cyclinglady and Ennis_TX, thank you for your replies!!

I was afraid the gluten crumbfest was the main reason I kept getting sicker, bummer.  I have to figure out a way to explain it to the MIL.  It's not going to be easy.  Most folks don't seem to understand why I could eat wheat a year ago and now suddenly can't.  I keep telling myself the ones that matter will eventually understand and the ones that refuse to understand don't matter.  Oh well, I'll be home tomorrow and I think I'll fast to let my insides heal a bit.  I'll also wash this rig down from top to bottom and stem to stern so hopefully I won't get reglutened by my 'safe space'. 

Thank you again for your replies.  It helped to know I wasn't imagining things or going nuts.     Showing them to my hubby and kiddos helped too. That way they understood why I grouchily spent the day hibernating in the bedroom (when I wasn't camped in the restroom).  If you have to get glutened on a trip, being in an RV is certainly the best option, LOL!!!

Thank you again,

Sonya 

[Ennis-TX]

I think I have the perfect rant where I quoted a few lines from other posters and reworded it into a rant to explain stuff to someone online.

"My issue Celiac Disease, people tend to think that it is a diet related issue and just gives us a stomach ache, well its not, A LITTLE IS NOT ALRIGHT! Celiac disease is an autoimmune condition and that means the bodies own immune system attacks itself. So anytime we eat even a tiny amount of gluten, the same immune system that defends us from germs and pathogens springs into action to protect us from the gluten. But the attack on the gluten is misdirected to our own body tissues instead (In my case my nervous system, brain, and intestines). The immune system doesn't give up fighting invaders quickly, it will continue making new antibodies and killing them there gluten critters until the last vestige of the horse they rode in on is gone. And then it may keep producing attacking antibodies for a few weeks or months later just in case. When the immune system can find and destroy germs that are too small to be seen with the naked eye, you know it can react to a tiny crumb of gluten. We could feel the effects within hours or we could feel them weeks to MONTHS after a cross contamination exposure (dipping a wooden spoon from a pot of whole wheat pasta water into a gluten-free pasta pot). We can develop other AI issues and those that occur most often are Hashimoto's Thyroiditis and Type 1 Diabetes and could even develop cancer.

Gluten as we mean it in relation to celiac disease is a protein molecule in wheat, rye and barley, and products derived from these such as Malt, Maltodextrin, Vinegar, Food Starches, the list goes on as to what all it can be found in by other names."

Left off the scarier bit about those of us who are hyper sensitive,

On a side note Celiac is genetic, might want to get your kids tested, if they show up positive, it might help set it home when the grand kids have it.

[kareng]

5 hours ago, ffyrebird said:

Cyclinglady and Ennis_TX, thank you for your replies!!

I was afraid the gluten crumbfest was the main reason I kept getting sicker, bummer.  I have to figure out a way to explain it to the MIL.  It's not going to be easy.  Most folks don't seem to understand why I could eat wheat a year ago and now suddenly can't.  I keep telling myself the ones that matter will eventually understand and the ones that refuse to understand don't matter.  Oh well, I'll be home tomorrow and I think I'll fast to let my insides heal a bit.  I'll also wash this rig down from top to bottom and stem to stern so hopefully I won't get reglutened by my 'safe space'. 

Thank you again for your replies.  It helped to know I wasn't imagining things or going nuts.     Showing them to my hubby and kiddos helped too. That way they understood why I grouchily spent the day hibernating in the bedroom (when I wasn't camped in the restroom).  If you have to get glutened on a trip, being in an RV is certainly the best option, LOL!!!

Thank you again,

Sonya 

It's your husband's mother - he should be talking to her!  Sounds like he doesn't really understand.  Sorry.  

[cyclinglady]

5 hours ago, kareng said:

It's your husband's mother - he should be talking to her!  Sounds like he doesn't really understand.  Sorry.  

Karen is wise.  Yep, it should be your husband talking to her (or at least with you.)    I have been married for over 25 years, so I can approach my in-laws now with any issue.  I am part of the clan.   I have earned it!  I do recall them having a fit about the lack of buns for a cookout.  I offered lettuce wraps instead.  They moaned and groaned (the old people).  Admitted that it was one of the best burgers they have ever eaten.  I can say that I am the best cook on my husband's side of the family (even Gluten free).  So, they have learned to go with it.  They now even ask for seconds on all baked gluten-free desserts!  

My RV is parked here at home.  Taking a cue from my own Mom, I sneak in with a cup of coffee and wrap gifts (really I am just chilling and reading!) I even invite my girlfriends over for a glass of wine and gluten-free snacks so that we can talk freely (gripe about anything).   I love our gluten-free RV!  

[kareng]

15 minutes ago, cyclinglady said:

Karen is wise.  Yep, it should be your husband talking to her (or at least with you.)    I have been married for over 25 years, so I can approach my in-laws now with any issue.  I am part of the clan.   I have earned it!  I do recall them having a fit about the lack of buns for a cookout.  I offered lettuce wraps instead.  They moaned and groaned (the old people).  Admitted that it was one of the best burgers they have ever eaten.  I can say that I am the best cook on my husband's side of the family (even Gluten free).  So, they have learned to go with it.  They now even ask for seconds on all baked gluten-free desserts!  

My RV is parked here at home.  Taking a cue from my own Mom, I sneak in with a cup of coffee and wrap gifts (really I am just chilling and reading!) I even invite my girlfriends over for a glass of wine and gluten-free snacks so that we can talk freely (gripe about anything).   I love our gluten-free RV!  

To take my thought a bit further - would your husband stand by and let his mother or anyone else  hurt you?   I doubt it but this poor poster's husband did just that.   I am afraid she has more problems than just a self- centered MIL.

[notme]

mleh, my mil brings gluten filled stuff to every holiday.  i make her a quarrantine area where she must keep her poison and a designated area where she is to eat it (not near my food!!)  i didn't make dinner rolls for the 5 course dinner i prepared for them (oh what a sin) so she makes a big deal about bringing her own rolls.  pisses my husband OFF !!  to the point that he doesn't visit her very often and when she said she wasn't coming for Christmas, he didn't put up much of a fight.   yes, you can get sick from crumb(s) and she should have more respect for you and your brand new possession and ALSO she should not be undermining you and your husband's rules for your children!  your kids need to respect your need to eat safely and take this disease as seriously as you can make them understand.  

that being said:  when my inlaws got a new motor home (brand spankin' new with the plastic still on everything, you know the drill lolz)  we went on the 'maiden voyage' with them.  (i wasn't diagnosed celiac until years later, so nothing to do with gluten)  but i was sooooooo sick.  there was a little warning sticker (you wouldn't hardly notice it but i spent a whole lot of time in the bathroom) on the bathroom wall that said 'new materials may make chemically sensitive people ill'  <not exact wording)  after the trip, i was fine almost immediately, so i attributed it to that.  fast forward after they had gone on numerous trips and i guess aired it out pretty good, we borrowed it to go to disney with the kids and i was fine.  was it the chemicals/new materials?  i don't know but i thought i would present it to you as a possibility.  maybe air it out really good (and vacuum all those nasty crumbs!!  grr!!)  maybe get a sign that says 'gluten free home away from home' or something ('NO GLUTEN ALLOWED!!!!'  if you really want to get straight to the point lolz)

good luck and i hope you feel better!!  

[Beverage]

I have also found that explaining that it's like a peanut allergy ... even the tiniest amount sets off the reaction. The reaction may not be anaphalactic  (spelling?) like it is with a peanut allergy, but with gluten, the reaction is on your insides.  People have heard so much about peanut allergies, they can somehow relate to celiac's being more serious like that.

[ffyrebird]

Thank you all for your replies on this topic!!

notme!- Most of the reactions to new RV's, mobile homes, etc is due to formaldehyde and solvents off-gassing.  Fortunately (unfortunately??), I was a biochemist and exposed to these before and know how I react.  I get asthma symptoms, a raging headache and finally feel almost drunk as my exposure levels climb.  Luckily our vehicle, while new, was on the lot for a bit and had a chance to bake off some of the chemicals before our trip.

Regarding hubby and my MIL-  You are definitely correct that I have bigger issues there than gluten.  Nearly every major conflict in my marriage has had something to do with MIL.  Thankfully, I am very independent and self-sufficient and have learned to take care of myself.

Bless you and thank you all!

 

[cap6]

Our rv is gluten free.  period.  It was two years pre-owned when we purchased it and  I scrubbed top to bottom, vac'ed out the drawers, lined the drawers with fresh paper, lined the shelves, new sink strainers (those are impossible to scrub!) , and a total scrub of the the oven.  All those nasty spots!   Vac'ed all the cloth chairs.  All of that done and I feel quite safe in it now.  Gluten free it is and gluten free it stays. 

[ffyrebird]

2 hours ago, cap6 said:

Our rv is gluten free.  period.   Gluten free it is and gluten free it stays. 

I wish I'd done this from the beginning.  It would have saved me a lot of grief and cleaning.  P.S. Love the cavaliers in your avatar!!!