Newly Diagnosed and Advice Needed!

[WADEIn]

Hello, I am newly diagnosed with a titers of 100. Like the mom, I am learning as well. When I first found out, I emptied my fridge and pantries as directed. I removed all cooking instruments and am in the process of replacing with metal or glass. I didn't know I was supposed to clean the shelves, drawers, fridge, etc. Do I have to throw out every cloth hand towel, napkin, dish cloth, and newly purchased foods because I placed them on shelves that haven't been cleaned? I washed new kitchen towels with old and now I wonder if I'm supposed to toss them all and start over? I was told to use bleach spray and now I understand that was ineffective. I need to know where and how to start. Please advise. 

[GFinDC]

Hi Wade,

Welcome to the forum!

I can tell you have done something right already, you are taking the possibility of cross-contamination seriously.  ?

You are also right about bleach not being effective to destroy gluten.  Gluten is not a germ even though our immune systems treat it like one.  So disinfectants don't help.

You should have to throw out your food though, or towels etc.  Just rinse the bottom of the food containers off with plain water.  Towels just wash them, no problem.  We do generally suggest replacing scratched non-stick pans or plastic containers that had gluten in them, and colanders.  The reason is it is very hard to effectively clean out those little scratches and such.

Wooden spoons or bowls have the same issue.  Although you can sand those down to a new clean surface.

I keep some of my gluten-free food items in a separate dorm style refrig that others don't use.  I also keep some silverware in a separate container and keep pots and pans in a separate place.  I have my own toaster also.

I rinse plates and bowls etc before using them because I live with gluten eaters.  That just takes few seconds to do.

I also often wash my hands before eating because there could be gluten traces on handles etc.

It's helpful to put gluten-free foods on the top shelves of the refrig or cabinets.  That way gluten crumbs don't fall down on it.

It gets easier doing these things in time.

[WADEIn]

14 hours ago, GFinDC said:

Hi Wade,

Welcome to the forum!

I can tell you have done something right already, you are taking the possibility of cross-contamination seriously.  ?

You are also right about bleach not being effective to destroy gluten.  Gluten is not a germ even though our immune systems treat it like one.  So disinfectants don't help.

You should have to throw out your food though, or towels etc.  Just rinse the bottom of the food containers off with plain water.  Towels just wash them, no problem.  We do generally suggest replacing scratched non-stick pans or plastic containers that had gluten in them, and colanders.  The reason is it is very hard to effectively clean out those little scratches and such.

Wooden spoons or bowls have the same issue.  Although you can sand those down to a new clean surface.

I keep some of my gluten-free food items in a separate dorm style refrig that others don't use.  I also keep some silverware in a separate container and keep pots and pans in a separate place.  I have my own toaster also.

I rinse plates and bowls etc before using them because I live with gluten eaters.  That just takes few seconds to do.

I also often wash my hands before eating because there could be gluten traces on handles etc.

It's helpful to put gluten-free foods on the top shelves of the refrig or cabinets.  That way gluten crumbs don't fall down on it.

It gets easier doing these things in time.

Thank you so much for the intel and advice. It is most helpful. My whole house will be a safe, gluten free home. I am too overwhelmed at present to consider traveling or visiting friends/family. I travel a lot for my job disaster responder) but right now blue skies equate to having time at home and time to learn about this disease. I appreciate your input and I'm sure I will have plenty more questions moving forward. Happy Valentine's Day to All!

[Ennis-TX]

1 hour ago, WADEIn said:

Thank you so much for the intel and advice. It is most helpful. My whole house will be a safe, gluten free home. I am too overwhelmed at present to consider traveling or visiting friends/family. I travel a lot for my job disaster responder) but right now blue skies equate to having time at home and time to learn about this disease. I appreciate your input and I'm sure I will have plenty more questions moving forward. Happy Valentine's Day to All!

I have compiled many list, tricks, and tips for traveling gluten-free, taking mess kit with me, and back up bars, and safe foods. As a disaster responder you might look at stuff from the emergency section of my quarterly food list, MRE, and freeze dried foods to take with you. I also tend to keep meal bars like Julian Bakery, dried kale chips like rythem foods, and recently added Epic Jerky and Pork rinds to my car stock of rations when I leave the house (along with my meds). Take shelf stable can good like delmonte spinach, tuna, salmon, sun butter (or other gluten-free labled nut butters), safe chips, etc.

IF you have microwaves available look up Nordicware microwave cookware. They have omelette cookers, grill plates (get the matching splatter covers saves you), bacon grill plates, steamers, rice cookers etc. Small mess kit with these and your set to cook in most hotels, just lay out some butcher paper for prep area (STUFF is a lifesaver for save prep and super quick clean up).

I love how your taking the initiate like that, I initially tried living in a shared house and was not that cautious with it and learned all the CC things the hard way....made me super paranoid for years and forced me to move into a safe gluten free home. the places a gluten eater will managed to CC are retarded (batter residue on fridge handles, cream of wheat on sink handles or spilled on the counter, crumbs ground into carpets, and arm chairs) LOL it made me wash my hands like crazy, quite a good habit now I am in the food industry.
 

[WADEIn]

On 2/14/2019 at 12:50 PM, Ennis_TX said:

I have compiled many list, tricks, and tips for traveling gluten-free, taking mess kit with me, and back up bars, and safe foods. As a disaster responder you might look at stuff from the emergency section of my quarterly food list, MRE, and freeze dried foods to take with you. I also tend to keep meal bars like Julian Bakery, dried kale chips like rythem foods, and recently added Epic Jerky and Pork rinds to my car stock of rations when I leave the house (along with my meds). Take shelf stable can good like delmonte spinach, tuna, salmon, sun butter (or other gluten-free labled nut butters), safe chips, etc.

IF you have microwaves available look up Nordicware microwave cookware. They have omelette cookers, grill plates (get the matching splatter covers saves you), bacon grill plates, steamers, rice cookers etc. Small mess kit with these and your set to cook in most hotels, just lay out some butcher paper for prep area (STUFF is a lifesaver for save prep and super quick clean up).

I love how your taking the initiate like that, I initially tried living in a shared house and was not that cautious with it and learned all the CC things the hard way....made me super paranoid for years and forced me to move into a safe gluten free home. the places a gluten eater will managed to CC are retarded (batter residue on fridge handles, cream of wheat on sink handles or spilled on the counter, crumbs ground into carpets, and arm chairs) LOL it made me wash my hands like crazy, quite a good habit now I am in the food industry.
 

Thank you so much for that great advice. I bought a spatter cover yesterday in fact and I'm taking you list with me today when I shop. Y'all are awesome!

[WADEIn]

On 2/13/2019 at 8:20 PM, GFinDC said:

Hi Wade,

Welcome to the forum!

I can tell you have done something right already, you are taking the possibility of cross-contamination seriously.  ?

You are also right about bleach not being effective to destroy gluten.  Gluten is not a germ even though our immune systems treat it like one.  So disinfectants don't help.

You should have to throw out your food though, or towels etc.  Just rinse the bottom of the food containers off with plain water.  Towels just wash them, no problem.  We do generally suggest replacing scratched non-stick pans or plastic containers that had gluten in them, and colanders.  The reason is it is very hard to effectively clean out those little scratches and such.

Wooden spoons or bowls have the same issue.  Although you can sand those down to a new clean surface.

I keep some of my gluten-free food items in a separate dorm style refrig that others don't use.  I also keep some silverware in a separate container and keep pots and pans in a separate place.  I have my own toaster also.

I rinse plates and bowls etc before using them because I live with gluten eaters.  That just takes few seconds to do.

I also often wash my hands before eating because there could be gluten traces on handles etc.

It's helpful to put gluten-free foods on the top shelves of the refrig or cabinets.  That way gluten crumbs don't fall down on it.

It gets easier doing these things in time.

I'm going to find a toaster oven today since my stove is not self cleaning. Wood, plastic, teflon, tea strainers, colanders, stoneware; gone.

Love the idea of "top shelf" fridge items and will use when traveling. What does one do re: fridge space in work eating areas? Is it just better to bring in my own little cooler lunch bag every day?

[cyclinglady]

I use a little hard-sided cooler.  The bags are just good for a few hours and can be discreetly brought in to a restaurant.    My hubby often goes to lunch and just buys a drink.  Since he brings in so many people, his favorite restaurant let’s him eat his gluten free lunch at the table.  If it is really hot, I pack a small cooler within a larger cooler, if I have to leave my lunch in the trunk.  I use old milk jugs to make ice blocks of various sizes.  They can be refrozen.  I use blue ice blocks in my smaller coolers.  

Our frig  at work was pretty clean.  The janitor cleaned it out every Friday no matter what.    Then there was the person who opened lunches and took food out of the bags/soft coolers.    I recall an ex-lax brownie took care of that problem.  At least that was the rumor......

My hard cooler doubled as a foot rest under my desk.    I use it at the school football stadium as a foot rest too.  

 

[Ennis-TX]

I did like cycling lady, I got a meal prep lunch box with cooling block. I can keep 2-3 meals in the small one. They make a large one that can keep 5 meals in them for traveling. Just move the reusable containers to fridge on arrival (buy extras and do a weeks worth at a time). Like her I bring my own meals to restaurant meet ups (PS never use the glasses from restaurants/bars, ask for a togo cup for your beverage and buy that)
Example of the cheapest I could find that even looks like the one I got, browse around see what works.
https://www.amazon.com/BloominGoods-Leakproof-Portion-Container-Reusable/dp/B073DVHZCB/
 

[Randi Swindler]

I’m curious about the comment to never use the glassware from restaurants and bars. I thought if they use a dishwasher the items would be safe. If this is not the case, then wouldn’t silverware also be an issue?

Thank you for your help on this.

[kareng]

48 minutes ago, Randi Swindler said:

" I’m curious about the comment to never use the glassware from restaurants and bars. I thought if they use a dishwasher the items would be safe. If this is not the case, then wouldn’t silverware also be an issue?

Thank you for your help on this.

I have found it would depend on the "quality " of the bar.  Certain sketchy bars,  I will only drink bottled cider (from the bottle).  ?

[Ennis-TX]

51 minutes ago, Randi Swindler said:

I’m curious about the comment to never use the glassware from restaurants and bars. I thought if they use a dishwasher the items would be safe. If this is not the case, then wouldn’t silverware also be an issue?

Thank you for your help on this.

 

When in a hurry they just rinse them, so your glass could have been used with beer, and WAS probably drank out of by a guy eating gluten pasta or sandwich.  Glasses can have nicks/scratches and retain gluten also....I supposed this would effect silverware also, but I normally bring my own (normally eat with chopsticks anyway).

OH and another reference, I own a commercial dishwasher.....they are great at killing germs with either a chemical disinfectant or high temp rinse (still not hot enough to destroy gluten proteins). Depending on model a full wash cycle is between 10-120sec...they do not really give that constant over and over power washing. Oh and I got a used one...I had to run over 30 cycles before the water tested gluten free on a test kit...thing had trash in the internal basket and pump. Hate to sound paranoid and crazy but that shits too out there to even be made up, I was in disbelief.

[Randi Swindler]

1 hour ago, Ennis_TX said:

 

When in a hurry they just rinse them, so your glass could have been used with beer, and WAS probably drank out of by a guy eating gluten pasta or sandwich.  Glasses can have nicks/scratches and retain gluten also....I supposed this would effect silverware also, but I normally bring my own (normally eat with chopsticks anyway).

OH and another reference, I own a commercial dishwasher.....they are great at killing germs with either a chemical disinfectant or high temp rinse (still not hot enough to destroy gluten proteins). Depending on model a full wash cycle is between 10-120sec...they do not really give that constant over and over power washing. Oh and I got a used one...I had to run over 30 cycles before the water tested gluten free on a test kit...thing had trash in the internal basket and pump. Hate to sound paranoid and crazy but that shits too out there to even be made up, I was in disbelief.

Thanks! Just one more of so many things to be concerned about. Oi!

[WADEIn]

Thank you all for that insight. Oh! My! Lanta! There is SO much to consider! I really don't know what I would do without y'all!

[GFinDC]

16 hours ago, WADEIn said:

Thank you all for that insight. Oh! My! Lanta! There is SO much to consider! I really don't know what I would do without y'all!

Hi Wade,

You are right, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.

[WADEIn]

30 minutes ago, GFinDC said:

Hi Wade,

You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.

Thank you GFinDC. Question. When you say, "quick rinse", can you define what is safe for us to use when washing our fruits and veggies? I know that might sound like something I should know but I am seriously taking no chances (at least not on purpose). I've been buying organic produce because I was told I needed to. Do you find that to be true or do I need to find a new nutritionist? ?

[Ennis-TX]

4 hours ago, WADEIn said:

Thank you GFinDC. Question. When you say, "quick rinse", can you define what is safe for us to use when washing our fruits and veggies? I know that might sound like something I should know but I am seriously taking no chances (at least not on purpose). I've been buying organic produce because I was told I needed to. Do you find that to be true or do I need to find a new nutritionist? ?

Rinsing it off under running water real good, this is to get any CC off. Examples, if there is a open air bakery some flour might have settled on your produce at the grocery store. OR if they are giving out samples some person might have been handling a dounut and touched your produce. Rinsing it off under running water works to remove any trace amounts normally.

Organic. some people in general react to stuff used in growing produce, IE glyphostphate, or like me I have a issue with the wax they coat them with to keep the fresh. Going organic or farmers market fresh helps some with these. I think your nutritionist is covering all the bases.

[GFinDC]

Hi Wade,

I use plain water to rinse foods.  I suppose it might be better to use a little Dawn dish soap or some such on fruit like apples that is waxed.  But I don't usually do that.

It's a good idea to rinse foods off anyway to reduce germs.  You never know what kid has wiped his nose on an apple in the produce section!   Plus like Ennis said there is the wonderful in store bread bakery trend these days where they can have flour wafting through the air.  My local Kroger seems to have a pretty good ventilation system set up so most of the heat from baking is exhausted and probably most of the flour with it.  But you never know for sure.  People working on making bread may have flour on their uniform sleeves and spread it around.  Also the flour section is often messy with leaking flour bags spilling gluten around.  So the stuff can be present in different areas in a grocery store.  And get spread unintentionally.  The person stocking flour may be stocking candy the next hour.

I don't think buying organic is a bad thing.  But I don't think it helps as far as avoiding gluten.

The issue is cross-contamination of gluten on/in supposedly gluten free foods.  And that cross-contamination can happen to both organic and non-organic foods.

It seemed to me that I was very sensitive to gluten exposure when I first went gluten-free.  Even slight amounts would make me sick.  You may find the same to be true for you.  I think that is because our immune systems are in high gear at first.  So even smelling bread baking or going through the bread isle can bother some people.  After a while on the gluten-free diet the immune system may calm down and not be so quick to react to minor exposures.  That can take some time to happen though, maybe years,

Some other foods to watch out for and avoid at first are dairy and oats.  Many of us are lactose intolerant for several months after going gluten-free.  That may go away though.  And some of us are intolerant to oats like we are to wheat, rye, and barley.  Oats can also be cross-contaminated in the processing or harvesting.

[WADEIn]

On 2/23/2019 at 10:15 AM, GFinDC said:

Hi Wade,

I use plain water to rinse foods.  I suppose it might be better to use a little Dawn dish soap or some such on fruit like apples that is waxed.  But I don't usually do that.

It's a good idea to rinse foods off anyway to reduce germs.  You never know what kid has wiped his nose on an apple in the produce section!   Plus like Ennis said there is the wonderful in store bread bakery trend these days where they can have flour wafting through the air.  My local Kroger seems to have a pretty good ventilation system set up so most of the heat from baking is exhausted and probably most of the flour with it.  But you never know for sure.  People working on making bread may have flour on their uniform sleeves and spread it around.  Also the flour section is often messy with leaking flour bags spilling gluten around.  So the stuff can be present in different areas in a grocery store.  And get spread unintentionally.  The person stocking flour may be stocking candy the next hour.

I don't think buying organic is a bad thing.  But I don't think it helps as far as avoiding gluten.

The issue is cross-contamination of gluten on/in supposedly gluten free foods.  And that cross-contamination can happen to both organic and non-organic foods.

It seemed to me that I was very sensitive to gluten exposure when I first went gluten-free.  Even slight amounts would make me sick.  You may find the same to be true for you.  I think that is because our immune systems are in high gear at first.  So even smelling bread baking or going through the bread isle can bother some people.  After a while on the gluten-free diet the immune system may calm down and not be so quick to react to minor exposures.  That can take some time to happen though, maybe years,

Some other foods to watch out for and avoid at first are dairy and oats.  Many of us are lactose intolerant for several months after going gluten-free.  That may go away though.  And some of us are intolerant to oats like we are to wheat, rye, and barley.  Oats can also be cross-contaminated in the processing or harvesting.

Those unwell people around produce is why I used to use a capful of bleach in my rinse water. I stopped because I didn't know if bleach was gluten free. *Sigh*

Nonetheless, I must be getting something right because my titers is well below 100 as of 20February! Woo-hoo!

My Doc said no oats for a year and I've cut way back on the dairy to include Lactose free milk but another doc said it's not the lactose, it's the casein. I haven't begun to research casein nor do I know if I even spelled it correctly but I now eat hard cheese and goat cheese when I can find a good one. Either way, I'm on the right path. Still watching for other problems since I went undiagnosed for more than 50 years and I have total villous atrophy so I'm sure there will be a long time before total healing begins. I think I have another biopsy in May so we will see. Again, let me thank you and the others who have stepped up to help explain these things to me and allowing me to learn from you.

[WADEIn]

You mentioned easily reacting to gluten after stopping. That has definitely been the case for me. I never reacted to gluten like I do now. Like you said, even the slightest amount of accidental exposure produces a severe reaction. One night, I couldn't keep my head up to drive myself home because I was so nauseated and dizzy! Just insane. I don't want that to happen ever again.

[GFinDC]

Hi Wade,

That's great that your numbers are going down! 

About dairy issues; lactose is a form of sugar that is present in cow milk.  Casein is one of the proteins in cow milk.  You can form an allergic reaction to a protein but not a sugar.  I am not sure why the doc said casein is the problem.  More often newly gluten-free celiacs have trouble digesting lactose.  That's because the villi lining the small intestine produce an enzyme called lactase that digests lactose sugar.  Often the trouble digesting lactose goes away once the intestinal villi are healed.  If there is a problem with casein though, it is usually not something that goes away.  I have trouble with diary still so I quit eating it years ago.  If you can eat hard cheese without problems then it is unlikely you have an casein reaction.  Most of the lactose is digested by bacteria when making hard cheeses.  So that's actually a pretty easy test.  If milk bothers you but hard cheese doesn't, then you are most likely reacting to lactose, not casein.  Because there isn't much lactose in hard cheeses.

I think quite a few of the long-time female forum members are over 50 too.  I'd give you a list of them but I don't want to get banned/flamed.   I shouldn't talk anyway though since I am over 60 myself.

It seems to me the first 6 months of the gluten-free diet are probably the hardest for many.  Then again the first 6 years are no picnic either. (Kidding!)   Some people seem to feel much better in 6 months although 18 months to 2 years may be a good time frame for many to have healed their guts significantly.  It can take some time for the immune system to calm down after going gluten-free.

 You are very welcome as far help goes.  We like to help people who are going through the same things we did at one point.

On 2/13/2019 at 8:20 PM, GFinDC said:

Hi Wade,

Welcome to the forum!

...You should have to throw out your food though, or towels etc.  ...

I boo-booed on my reply above.  That should have said

"You should NOT have to throw out your food though (if it's gluten-free) or towels etc."

[cyclinglady]

41 minutes ago, GFinDC said:

Hi Wade,

That's great that your numbers are going down! 

About dairy issues; lactose is a form of sugar that is present in cow milk.  Casein is one of the proteins in cow milk.  You can form an allergic reaction to a protein but not a sugar.  I am not sure why the doc said casein is the problem.  More often newly gluten-free celiacs have trouble digesting lactose.  That's because the villi lining the small intestine produce an enzyme called lactase that digests lactose sugar.  Often the trouble digesting lactose goes away once the intestinal villi are healed.  If there is a problem with casein though, it is usually not something that goes away.  I have trouble with diary still so I quit eating it years ago.  If you can eat hard cheese without problems then it is unlikely you have an casein reaction.  Most of the lactose is digested by bacteria when making hard cheeses.  So that's actually a pretty easy test.  If milk bothers you but hard cheese doesn't, then you are most likely reacting to lactose, not casein.  Because there isn't much lactose in hard cheeses.

I think quite a few of the long-time female forum members are over 50 too.  I'd give you a list of them but I don't want to get banned/flamed.   I shouldn't talk anyway though since I am over 60 myself.

It seems to me the first 6 months of the gluten-free diet are probably the hardest for many.  Then again the first 6 years are no picnic either. (Kidding!)   Some people seem to feel much better in 6 months although 18 months to 2 years may be a good time frame for many to have healed their guts significantly.  It can take some time for the immune system to calm down after going gluten-free.

 You are very welcome as far help goes.  We like to help people who are going through the same things we did at one point.

I boo-booed on my reply above.  That should have said

"You should NOT have to throw out your food though (if it's gluten-free) or towels etc."

Ha! Ha!  ? in the beginning, I did toss a few kitchen towels, like the ones I used specifically to roll dough on or roll up a cake (e.g. Yule Log or Pumpkin Roll).  Yes, I washed them (separately) but just imagining traces of gluten.. shutter....piece of mind can be priceless!  

[cyclinglady]

@WADEIn-  

Congratulations on your blood levels coming down!  Talk to your doctor about your upcoming endoscopy in May.  You are newly diagnosed.  While in theory your gut should heal within weeks actually, there is a steep learning curve to the gluten-free diet.  I suppose if you never eat out or consume oats, and primarily consume Whole Foods or just certified gluten-free to be sure), it is possible to have a complete recovery.  But when 60% of celiacs are still experiencing symptoms (remember those can be systemic), odds are you are going to need more time.

If you do the endoscopy, just be prepared for any outcome.  Do not be disappointed.  You might be healed, or you might need more time.

The blood tests were designed to help diagnose celiac disease, but were never intended to be used for dietary compliance.  The blood tests are the “only tool in the toolbox” that is non-evasive, so doctors use them.  

I can tell you that mine were still elevated when I had my repeat endoscopy which revealed a healed small intestine, but autoimmune gastritis.       At least the endoscopy made me realize that it is not always celiac to blame for new health issues.