Does Anyone Know How To Kill Or "inactivate" Gluten?

[manasota]

Karen P,

My story is very similar to yours.  Diagnosed 5 1/2 years ago and not much better.  Went down to 93 lbs & now back up to 108 lbs.  I read this website for 5 years before I posted anything.  Tried everything.  I now eat only meat, some veggies, some fruit, almond flour (to bake "muffins"), olive oil (for cooking), walnut butter, and spices (turmeric, cinnamon, ginger, basil, oregano, salt, pepper), and water (sometimes with lemon).  Even with this limited diet, I have tried eliminating all these items in rotation.  Same results.  Lot of healing of stuff that's not really important (hair, nails, skin rashes).  Luckily, I don't have DH.  I am so very sorry that you do.  My major problems are pain and overwhelming fatigue.  

Following suggestions on this site, I AGAIN eliminated ALL dairy & nightshades.  My pain has subsided!!!  Hopefully, with time, the pain will go away.

But this fatigue is having a devastating effect on my quality of life.  Again, taking the suggestions made on this site, I have scheduled an appointment this week (YEA!) with a new gastroenterologist for (hopefully) follow-up testing to verify that I am not being somehow glutened.  

I write this post to show you that you are not alone in your continued suffering.  Also, I want to encourage you to listen, ask question, and then FOLLOW the advice given here.  A lot of these people really know what they are talking about and are effortless in their attempts to help you.  They have helped me.  Try your best to listen to the help they offer and then make use of it.  ;-)

[Karen P]

I've been waiting to get into a GI guy for almost 7 months now and still no sign of getting in to see this guy.  Fortunately he's new to me.  The one that diagnosed me was nuts or something.  He didn't give me near enough sedation when he scoped me (top and bottom) and was so very rough.  This new guy is supposed to be up to date on all of the newest issues so here's hoping.  I'm glad to hear other people suffer horrible fatigue which is something I didn't mention before.  I've had family members tell me everything from I'm lazy to I'm exaggerating my symptoms to I'm just being picky, whatever that means.  Yes, a lot of this comes from my mother who doesn't understand a Celiac can't cheat on their diet.  Speaking of diet, I've made life easy for myself.  I eat meat, potatoes (or rice), veggies and pasta using a pasta sauce I make myself.  I play it safe now and only get screwed up when family members come for a visit or I'm forced to visit them.  I hate to say this and I know it comes from a selfish place but it sure would make life a lot easier if other family members had Celiac disease. 

[bartfull]

Odds are they DO. Celiac runs in families and it is recommended that all first degree relatives (parents, children and siblings) of celiacs be tested every two years.

You can't control what friends and family do in their houses but you must insist that NO gluten ever be brought into your house. If MY sister had brought it into my house the way yours did I would tell her in as nice a way as possible that she either must remove the gluten right away, or else I couldn't have her there. Sounds harsh but that's the way it must be.

[manasota]

Luckily, my diagnosing GI was very kind and very good.  Again, luckily, I only had to wait about 6 weeks for the appointment I'm having this week with the new GI.  No idea how I got that lucky.

My husband is extremely supportive and even went gluten free with me!  Actually, the diet has shown more improvements for his health than for mine.  I think, for him, it's not really the gluten but eliminating all the junk, preservatives, dyes, sugar, etc.

As for my blood family...They simply do NOT want to hear about it.  They want absolutely nothing to do with it.  Sadly, therefore, I have little to do with them.  They refuse to even hear about my food requirements let alone honor them.  Only one brother was tested for Celiac.  He does not have it.  I think several of my other relatives do have Celiac; but I have talked to them till I'm blue in the face (do they still say that?) and they absolutely refuse to hear it.  They look at me like I'm nuts.

I have decided that no gluten will ever enter my house again.  I agree it would be easier if family members were also Celiac--not that I really want them to be sick.  It would be nice to feel understood and loved.  I'll just have to get that from my husband and from myself.

[Karen P]

I was stunned my daughter brought all of this gluten to my house.  She's never done it before and is usually very supportive but this last visit in March....it's like she was a completely different person.  There was only one room in my house that ended up safe for me and that was my own bedroom.  By the time she left here with her kids and hubby in tow, I was so godawful sick that I had to leave my home and go stay at my aunts house who chose to be 99% gluten free.  When I finally felt somewhat well enough to return to my house, I walked in and got a shot of reality.  Now I had to de-gluten my home.  It was one of the lowest points in my life in a very long time.  My daughter had left earlier than planned because, and these are her words "we may as well go home being as you're sick".  She pulled out of the driveway and I haven't heard from her since.  She made me sick!!!!  Yes, I'm still a bit bitter about this.  If I could've sent her packing when she first showed up, I would've but she lives 10 hours away so that really wasn't an option.  Anyways, I managed to get my house cleaned up with the exception of the room they stayed in.  Last night I remembered Meghann gave her girls these pita chips or crackers.....something along the line of and sent them to bed (they all slept in one room) unsupervised.  These kids know no boundaries and had no qualms about checking everything out.  They all ate breakfast in this room.  After each meal or snack, Meghann used baby wipes for everyone's hands.  I don't think baby wipes get hands clean enough, do they?  Anyways, months later and I'm still reacting to this room despite multiple cleanings.  I don't know what else to do.  I will try anything (short of a torch) to get this room useable.  This is my happy room and with winter coming on and no dog to love up anymore, I desperately need this space. 

[squirmingitch]

Gosh Karen, I'm so sorry this is happening to you. It sounds like you read in the dh section. I'm going to repeat some things so please have patience. Just trying to get to the bottom of things for you. 

Have you checked?

Shampoo, lotions, any topical product that can get on your hands & in your mouth or lesions or mucus membranes.

How about cutting the gluten-free pasta? Maybe you're just that sensitive. it sounds like that's the only thing you eat that is not personally made by yourself. 

 

As to the sewing room. Soap & water. That's all I can say, wash everything with soap & water. Wash the upholstery with soap & water. 

 

 

[Karen P]

Yes, it's me one more time tonight..  I'm sure by now everyone is getting tired of reading my posts but I think I've had an epiphany with the help of a friend. Her and I were chatting and I told her the rest of my house while work intensive, was easy to de-gluten so why am I having such issues with this one room.  What's different about it?  It's the furniture!  There's a computer desk and a sewing table my father built and the only thing I have from when he passed.  It means a lot to me.  It also happens to be made of wood that's extremely rough in places and porous.  I would bet anything this is the source of my problem.  I'd love to know what others think, if I'm grasping at straws, whatever and if anyone had any ideas on how to fix this potential problem.

[MsMarginalized]

{{{{{{Karen}}}}}} (those are hugs). I am so sorry that what should be a joy turns your life into such a tragedy! One other (possibly drastic) suggestion? What if you go visit the grandkids instead from now on? You know what you need to do for your health. Even now (3 years after my own diagnosis) my husband slips and tries to kiss me after work (and after his 2 sandwich lunch). He just wants some sugar and in NO WAY wants to get me sick. He just forgot.

[Karen P]

Good morning Msmarginalized. First of all, thank you so much for the hugs.  My attempt at cleaning this room a couple of days ago has yielded nothing but a rash and tummy troubles. I'm afraid if I go visit them, I'd have even less control over the gluten issue plus it's a 10 hour drive and my hip replacement has decided to crap out yet again so I'm waiting around for more surgery. It's funny you should mention your husband kissing you after his 2 sandwich lunch.  I have recently had a man come into my life and like your husband, he has forgotten himself and kissed me.  His diet has not changed since we met. How do you managemeals and such at home if your husband eats normal and you're forced to eat gluten-free?

[MsMarginalized]

We have a mixed kitchen. I've color coded the gluten-free items RED. Mostly my husband eats gluten-free at home but he gets "real" sandwiches for lunch (sometimes). He did try the gluten-free bread (God bless him!) The only real "gluten eaters" in the house (besides husbands sometimes lunches) are my daughter & her hubby. But she does that cooking & clean up herself.

My 20 y/old son also has Celiac. I got the diagnosis to help him out. Once I was diagnosed, we got him into the Doc's & sure enough *BAM* he has it, too :(

[Karen P]

I think my daughter has Celiac disease as well but she refuses to get tested.  It's good to know Celiacs and non can live together in harmony.  I'm still looking for any helpful hints regarding cleaning my computer desk and sewing table, all made primarily of wood.  I'll try anything.  One idea I had was to use hot soap and water mixed with vinegar, scrub, scrub, scrub, rinse well and then maybe put a coat of.....something on it to seal.  Does anyone have any thoughts on this idea? 

[Karen P]

I would like to take a minute to thank everyone for their support, encouragement and suggestions.  It's so nice being able to share my experiences with people who know exactly how horrible Celiac disease can make you feel.  Also, a very special THANK YOU to BARTFULL.  You got me started, showed me how to use the site and gave me some awesome helpful hints.  Talking to all of you helped me to feel so less alone and that was the biggest gift of all.

[bartfull]

Karen, when I first came here there were some awesome people who helped me. I truly believe they saved my life, and I know they saved my sanity. I stuck around because I am still learning, and because I wanted to pass it forward.

I hope you too stick around. It won't be long before you will be helping newbies and passing out hugs to folks who feel as lost and confused as you do now. We're all in this together, and together we will rise above it.

[mommida]

Did you happen to use any spray starch in the sewing room?  Haven't used spray starch in years to even check if wheat starch is in the ingredients.

What about getting a glass top for the coarse wood table?  (If it is a special order size piece of glass, don't forget to get the edges polished.

You are fully adopted part of the family here now.  You have Celiac experience.  You can write your own advice to others having child guests to the house.  "House rules :  If you are little and eating gluten you eat in this spot, and this spot only"

 

[Karen P]

Im not sure if I've used spray starch in the room and never even thought to check if it contains anything gluten. I'm normally so diligent in everything I buy and yet this product is something I've used for years and years and never once thought about what it's made of.  Silly me.

I've learned a valuable lesson.....never again will gluten enter my home.  I have a very small place with a small kitchen.  If my daughter and the kidlets come back, they're going to have to come during the summer so the can eat their Miniwheats and bagels on the patio facing the lake.  That shouldn't be too much of a hardship, right?

 As for my desk, I'll certainly look into a glass top. That would be perfect. Can failry porous wood be cleaned though? I found bit of bagels and their snacks all over the desk including in the drawersand I've already washed some of the bagels and cream cheese off of the drawers. That's what I've been able to see. I wonder if it's what I'm not able to see that's making me sick.. Or am I being paranoid?

My tip for stopping the horrible itch of DH. I often scratch with a cool cloth just enough to make the skin a bit "open"and then apply rubbing alcohol to the area. Yes it burns a bit but it immediately and almost always relieves the itching. It also seems to dry the rash up. This sounds extreme but I swear by it. Have a good night everyone!

[gilligan]

Has the doctor seen this rash?  I used to get psoriasis on my arms after sitting at wooden picnic tables.  I was given a concentrated cortisone cream that took care of it.

[Karen P]

Yes, I had this rash checked out once a very long time ago.  I was in my early 20's and walked out of his office humiliated beyond belief.  He told me and tested me for the STD Herpes.  I was so horrified.  I spent 2 weeks sobbing and too humiliated to even go out before the result came back as negative.  I've never had it checked since.  My rash is faithfully on my hind end and presents as more like a welt.  Earlier this year when I was staying with my aunt for a couple of days, I came in contact with rye bread crumbs.  My aunt eats 99% gluten free.  The only time she doesn't is when she has a craving for a toasted BLT.  I had been out when she made this sandwich so when I got home, I cleaned up the kitchen for her not realizing what I was cleaning.  By the afternoon, I was supporting a welt.  Because the rash is always on my butt, I was never able to get a good look so I had my aunt check it out.  Her description was that it looked like multiple small, slightly infected bee stings all in one welt.  Before I had her check out my butt (gotta love an aunt that's willing to check out your posterior without leaving you embarrassed), I asked her if she had cooked anything with gluten.  She then told me about the sandwich she had made and forgotten to tell me about before I cleaned the kitchen.

[mbrookes]

The thing about gluten and Celiac is that you have to swallow the gluten for it to affect you. The molecule is too large to pass through your skin. Don't lick anything in your sewing room. (Sorry.Joke) As someone said earlier, it can take several days for a gluten reaction to occur. Perhaps you ate something the day before going into your sewing room.

Sounds to me like you need to start looking for a new problem. Perhaps an allergy? Engage your medical provider and insist that he/she pay attention to your problem and help solve it.

[Shrey]

Hi everyone.....just had a quick question.....does toothpaste have any gluten in it......and how do i know if my body is reacting correctly after going gluten free??

[kareng]

2 hours ago, Shrey said:

Hi everyone.....just had a quick question.....does toothpaste have any gluten in it......and how do i know if my body is reacting correctly after going gluten free??

There are many internet stories about a mythical toothpaste that contains gluten.  Never actually seen it. All the major brands do not contain gluten.

[KBarn]

My son was just diagnosed with celiac and our entire house is going gluten free. What is stumping me in this process of making my kitchen deglutened is the dishwasher and all my cookware and plates utensils and the like.

I have read an abundance of info and it sounds like my cast irons and my oven going on self clean mode is good and will take care of those. I'm going to wipe down my shelves and fridge and get rid of all foods with gluten, clearly. Some cookware I'm just getting rid of (wood and silicon or plastic spoons and spatulas, anything non stick or too scratched up even if its metal etc. Colander.) But the dishwasher??? How do I ensure all my dishes and stuff are cleaned properly in the dishwasher which previously also cleaned gluten off of things?! I'm concerned it wont do the trick to get my dishes all cleaned correctly! I have no idea what I'm doing and cant seem to find good info. Lots of people keep saying bleach on stuff but I'm in agreement with others, that does nothing.

[kareng]

34 minutes ago, KBarn said:

My son was just diagnosed with celiac and our entire house is going gluten free. What is stumping me in this process of making my kitchen deglutened is the dishwasher and all my cookware and plates utensils and the like.

I have read an abundance of info and it sounds like my cast irons and my oven going on self clean mode is good and will take care of those. I'm going to wipe down my shelves and fridge and get rid of all foods with gluten, clearly. Some cookware I'm just getting rid of (wood and silicon or plastic spoons and spatulas, anything non stick or too scratched up even if its metal etc. Colander.) But the dishwasher??? How do I ensure all my dishes and stuff are cleaned properly in the dishwasher which previously also cleaned gluten off of things?! I'm concerned it wont do the trick to get my dishes all cleaned correctly! I have no idea what I'm doing and cant seem to find good info. Lots of people keep saying bleach on stuff but I'm in agreement with others, that does nothing.

If you want you could run your dishwasher with nothing in it.  Or use one of those dishwasher cleaners.  But I don’t worry about it.  My hub still has Gluten bread and we put it all in the same dishwasher.  

[Ennis-TX]

It depends on your dishwasher, ones with a disposal in them, a screen mesh, or those new ones that retain water from one wash to prewash the next might need some extra work. Generally a surfactant like a soap can loosen particles from surfaces and remove them. Running multiple cycles with detergent and perhaps a dishwasher cleaner and or another cycle or two with bleach can rinse it all out. I got a used commercial dishwasher (I run a gluten free catering business and bakery) a year or so go and replaced the screens then ran it 20 cycles with various cleaners "Just to be sure" and I would trust it now.

Be sure to clean around the door seals and wipe down the inside well, I find when I clean mine they sometimes have particles on the roof inside and around the seals. Good dish soap then bleach rinse.

[GFinDC]

I cleaned a cast iron pan by filling it with soapy water and boiling it awhile.  Then scrubbing it with steel wool.  No problems.

I live with GE's (gluten eaters) now.  I keep a separate supply of silverware but do rinse it before using since flour is used in the kitchen.  I have my own pots and pans to use and my own small refrigerator.  It works out pretty well actually.

[KBarn]

Thanks all - lots of good tips. Not as freaked out now. I got this