How Careful Do I Need To Be?

[rdunbar]

Hi, I've been really really strict about my gluten-free diet, and lifestyle for @14 months now. I eat a paleolitic diet, meat and veggies, nothing processed or packaged, no grains at all. I have my own kitchen, i never eat out, i make all my own meals. this is after over 2 years of going 'wheat-free', but being clueless about CC, and trace gluten. I got sicker during this period, lost weight, and my DH got worse.

I use soap from Gluten free Savonerrie, which i order in the mail. I avoid iodine,in seafood, salt, in supplements.

I'm just starting to think that there is more i can be doing to prevent exposure to gluten.

My DH is still pretty bad after over a year of being super strict, and i'm startring to losr my patience, or whats left of it.

I got extremely glutened about 2 weeks ago when i parked my car unknowingly in front of a bagel factory, and got out and the door was open, and i was literally a few feet away from big bags of flour, and big mixers. the air was full of it ( I used to be a baker, and chef, and know how airborne flour can be,)

I got hammered by most symptoms within minutes, but the DH took a few days to flare up.

I had never really gotten 100% rid of it, but I would say that at it's best, it was 80% gone. I've been taking pics w/ my cellphone to track my progress, and i know it certainly was feeling better.

this got me to thinking that i should wear a mask when i go to my local healthfood store. they have a pizza oven in their open kitchen, so it got me thinking that there is airborne flour there always. has anyone ever had to go to such extremes to deal with DH??

I'm so sick of hearing ppl on the forum say "i'm so sensative", but they brag they eat out several times a week.

I went to PF Changs @ 6 months ago, and ordered just chicken, and spinich, with nothing, no sauce, no salt, and i got glutened, and they are supposed to be conscious about gluten-free.

I'm also thinking about wearing gloves when i go out in public. is this crazy, or is it a realistic strategy at this point?? i already avoid touching rails, doorknobs, elevator buttons, and use my shirt, so why just not wear gloves??

have ppl ever had to go to such lengths to get rid of this?? I am so burned out, i am willing to do anything, this is really debilitating. I'm glad that i feel like my gut is healing for the most part, and my mood had gotten much better over the last year, and i have 100% faith that being gluten free is the answer, but do i need to go further to make sure i avoid even a molecule of this gluten crap??

[GlutenFreeManna]

Have you had your DH biopsied recently? I'm curious if maybe it is not really DH but something else--like perhaps you have an allergy to somethign else you use reguarly. I don't know, but I would think two years gluten free should have given you more relief by now. If it makes you feel any better however I can relate about the bakery. I can not enter a Panera Bread without getting glutened. I have not gone so far as using masks or wearing gloves but I do always carry wipes and wipe down my cart handles, wash my hands frequently, and avoid touching my face when I am out in public.

[rdunbar]

thanks. I've actually never had a biopsy, and have no formal diagnosis for celiac either.

I'm still not clear on if a DH biopsy would even be reliable if you're not consuming gluten.?

In any case, you could not offer me a sum of money big enough to get me to consume one iota of gluten if that was nessisary for the test.

I know what happens when i get exposed to gluten, and I have a lot of very extreme symptoms, so i don't see the need for testing, tbh. I have no doubt about it at all.

I've had nothing but bad experiences w/ doctors and dermatologists, and don't see what they can do to help people with this ever.

I'm not sure what a positive biopsy would tell me that i don't know already. i'm commited to a gluten-free life whatever a biopsy says anyways.

I've heard that DH can take 2 years to go away, Dr Peter Green says as much in his book.

also,I met a woman whose 2 year old had DH all over his body, and it took 2 years to go away.

I saw progress before, and was getting psyched that it was going to go away, and then had it flare up numerous times, and this last time makes it as bad as ever almost.

It itches like crazy, has a burning sensation. it's almost impossible not to scratch. there are raised lesions that form in groups, almost in parrelel lines.

its' mostly around the hairline, and back of the head. it's on both sides, right and left.

I've had great results with my gluten free lifestyle/diet with a ton of symptoms;my gut, diahrrea ,tingling and numbness in my arm, achiness and pain in my hip, loss of balance, lightheadedness, irritability, brain fog, depression, they are not always 100% better, but a huge huge improvement from not being totally gluten free.

the DH just seems like the toughest one. I've also heard that severe cases take longer to resolve,

I think i'm on the right track, but just wonder if i should even be more careful about being in public if the slightest amount can keep the reaction going?

[GlutenFreeManna]

The skin biospy for DH does not require you to eat gluten. It only requires that you have active legions. A proper biopsy will take samples from the skin next to the blisters/rash (NOT the blisters themselves) to test for antibodies. If you go to a Deratologist and you do have DH then you have a clear celiac diagnosis. I can understand why that may not matter to you at this point however...

[rdunbar]

I really only eat a limited amount of ingredients for over a years now.

meat, (beef,lamb, chicken) ; greens like kale, mustard greens, squash, carrots, sweet potatoes, lettuce, avacado, lemon, olive oil, cocunut oil.

no nightshades, no broccoli, asparagus, no high fructose fruit like stonefruit, bananas ( and i love bananas)

i don't make any exceptions or cheat even on nightshades or excess fruit.

if i have an apple or pear, it's in a salad, not on an empty stomach.

i just dont know what i can even cut out, at this point.

does anyone think that sweet potatoes have too much fructose for me?

it's my real staple, and i have at least one almost every day. it's the only thing i can even think of, but ive never heard of anyone having problems with them?

thanks

[GlutenFreeManna]

It doesn't sound like it's anything in your diet (someone else might suggest something however--I don't know what reactions nightshades give). Have you checked all of your personal care products? Lotions, laundry detergent, deodorant, dish soap, hair spray, shampoo, conditioner, even nail polish. Also do you live near construction or do work that takes you into an environment with drywall dust or pastes or glues or anything like that? Or does your signifacant other use any products that could have gluten? If he/she is touching gluten all day (even if they do not eat it) and then come home and run their hands theorugh your hair...well there you go.

[Takala]

I think there's a chance you're getting cross contaminated from something else.

You don't have pets, do you ? Unless they are on gluten free food, they can be a real vector.

BBQ briquettes ? Mouthwash ? Rolling papers ?

I hear you on the super sensitives saying they can eat out a lot with no problems, or eat stuff from shared lines. I do not consider myself in that category, yet I am often surprised by manufactured foods. When I was first changing my diet years ago, I ate grainless and dairy- less, then added other stuff back in slowly. This Easter I ate two small pieces of candy from a package marked gluten free. It was not a complex candy, it was mostly sugar. I have eaten this before with no problem, indeed, earlier in the week I ate 5 pieces out of a different package, same brand, same store source, different color, no reaction. Two hours later on Easter, my gut is seriously kicking me a few times in warning. Now, previously that day, I had eaten a piece of fruit, some washed and self toasted nuts, and some instant coffee with coconut milk and a hard boiled egg. That's it. Big whooping challenge, right ? I thought, okay, now my Monday is possibly going to suck anyway, so I will wait a few hours and see if it calms down and then go ahead and eat dinner out because it doesn't matter. In for a dime, in for a dollar....

Well, after several more warning kicks, it calmed down, sort of, and we went out and ate off the gluten free menu at the restaurant. (because it is Easter, there are not many people at a Chinese restaurant, heh !) And, after eating a good sized meal, with dessert, prepared by their careful staff, served by 2 careful waiters, I was absolutely fine Monday morning. Go figure. I assigned my spouse the task of finishing the candy off, if he wants it.

But I will be the first to tell you, restaurants are hit- and - miss, eat at your own risk types of places. I go to little podunk local pizza place, with the teenagers cooking, get the gluten free crust, no problems. Again and again. Teenaged cooks get it. I've gone to Famous Name Restaurant, gotten a standard meat/potato/salad meal, off the gluten free menu, $$$, after the usual Inquisition/ Interrogation, and..... you know what happens. How in the Name of **** can this be ? Rule #1, don't eat out the evening before a big Holiday. The next year, go to Whole Paycheck, shop, stayed home and ate gluten free marked on the package, special corn chips, with club soda to drink, with a piece of lime off our own tree, got sick as a dog. I feel at least 120 years old the next day. Wow, some party. Research, research, surprise, they have oat flour. Not marked on package. Am I now an oat reactor ? Do I want to find this out this way ? Rule #2. Just don't eat commercial chips marked gluten free. Rule #3. Next year, plain water. I give up. No, wait, I should just get the gluten-free pizza from the little local place, but I don't want to jinx it. ssshhhhhhhh.

I had gotten nailed repeatedly about 2 weeks ago from something while I was just getting over a cold, and I was starting to get super annoyed, because I'd hadn't been OUT for two weeks, so it was an inside job. It was our fault, we must have a hull breach in the pantry, battle stations. I've narrowed it down to a probable manufactured food item that we've eaten for years, that was normally safe- but it now tastes differently. If I have a cold my Early Warning Device, aka Sense of Taste, is Out of Order. My spouse, alas, can't taste it. But it's there. My reactions are relatively mild, and I tend to recover faster than a lot of people, but still, just because I'm not puking or blowing up in rashes, doesn't mean it's not real to wake up such in a state of arthritic flare that it is going to take several hours to loosen up, plus the brain fog, eyes not tracking together well, and overall tiredness. The time I reacted before that, using a certain gluten free flour from name brand company, who had recently changed their packaging design and was starting to mark this kind of grain flour "gluten free," when it was not, before. I use other of their products, marked gluten free, with no reaction. This new package, marked gluten free, within 2 hours I can feel it, and I'm shocked. Next morning, wretched. Normally, I mix flours, but I went with a single one this time, so the culprit is obvious. Was it the plain meat, the salad, or the biscuit ? has to be the biscuit .... and d***mit, I now have to really scrub and reseason the pan. death rays Again, I do a bunch of research, and find out that this is either likely made on shared lines or is being made off site and just repackaged with their brand label. Now I'm torqued. I know I can eat this grain. It's this package from this maker.

I would really like to go more than a week between reactions here. And if I'm not a super sensitive, then what is it like for the rest?

[rdunbar]

thanks,

i checked the website for the laundry soap i use, ecos, and they claim gluten/casien free.

i only use soap from gluten-free savonnirie, which i love, and toms from maine toothpaste as body care products.

thats why i'm racking my brains, because i feel like i'm going way way further than most ppl, and the DH keeps flaring up.

eating out anywhere at this point seems insanely reckless to me. the reward isnt even remotely close to outweighing the risk,

i'm seriously skecthed out just venturing out in public at all lately.

[GlutenFreeManna]

Do you have a significant other or do you live alone? What is your employment? If you don't want to share these things online that's fine but they may give us ideas of other things to suggest....

I had a problem a couple months ago where I kept getting glutened and I could not figure it out. My husband had gone gluten free for me except for eating oatmeal and when we went out to eat he would get gluten food then. We always were super careful and he brushed his teeth prior to kissing me if we had been out to eat or he had been someplace and eaten gluten. Well my husband was eating oatmeal everyday to help his high cholesterol. It was the ONLY non-gluten-free item I allowed in the house. I figured it was not as big of a risk as long as I was not eating it (I knew oatmeal was questionable for some people). Well when I started to get glutening symptoms again and could not figure it out I suspected the oatmeal in the hosue was getting me somehow. My husband leaves very early in the morning for work. He was always eating his oatmeal and kissing me goodbye while I was still asleep. He admitted to me didn't always brush his teeth becaus ehe didn't think oatmeal was a big risk for glutening me. We also thought maybe just putting the oatmeal bowls through the dish washer was contaminating everything. So my husband got strict about brushing his teeth, we got him his own bowls that will ONLY be used for his oatmeal AND he now handwashes his bowl when he is done and puts the dish rag directly into the laundry. Just doing those things I got better and my mystery glutenings stopped. It's amazing how such a small amount of cc (and from oatmeal which many celaics can tolerate) made me so sick and fatigued. I hope you can figure out what is still getitng you if it is gluten.

[rdunbar]

Do you have a significant other or do you live alone? What is your employment? If you don't want to share these things online that's fine but they may give us ideas of other things to suggest....

I had a problem a couple months ago where I kept getting glutened and I could not figure it out. My husband had gone gluten free for me except for eating oatmeal and when we went out to eat he would get gluten food then. We always were super careful and he brushed his teeth prior to kissing me if we had been out to eat or he had been someplace and eaten gluten. Well my husband was eating oatmeal everyday to help his high cholesterol. It was the ONLY non-gluten-free item I allowed in the house. I figured it was not as big of a risk as long as I was not eating it (I knew oatmeal was questionable for some people). Well when I started to get glutening symptoms again and could not figure it out I suspected the oatmeal in the hosue was getting me somehow. My husband leaves very early in the morning for work. He was always eating his oatmeal and kissing me goodbye while I was still asleep. He admitted to me didn't always brush his teeth becaus ehe didn't think oatmeal was a big risk for glutening me. We also thought maybe just putting the oatmeal bowls through the dish washer was contaminating everything. So my husband got strict about brushing his teeth, we got him his own bowls that will ONLY be used for his oatmeal AND he now handwashes his bowl when he is done and puts the dish rag directly into the laundry. Just doing those things I got better and my mystery glutenings stopped. It's amazing how such a small amount of cc (and from oatmeal which many celaics can tolerate) made me so sick and fatigued. I hope you can figure out what is still getitng you if it is gluten.

no, i don't have a significant other, or relationship ; i have my own apartment, and kitchen. theres no pet food.

i used to do catering, but i quit over a year ago, when i realized what was happening,

[chrissygirl0668]

I am so confused. I was recently diagnosed with this by a dermatologist because I had this burning blistery rash on my forearms, that traveled to my head and face (I have to say I am 41 yrs old and can honestly say other than this I never had a problem with acne).

My Derm sent me to a Gastro and had the biopsies done within two days. Ash Wed found out what I had. STillllll do not understand all this, buying gluten-free Products, which are supposed to gluten-free right, well still getting sick. Checked all products this week and they all have soy. So here I am thinking and spending all this money and for what I am still sick to the point I get blisters on my left foot on bottom of toes (very painful and getting worse). Derm put me on Dapsone and I got all the reactions. Go for blood work every week. Derm stopped me on Dapsone for a week and then lowered prescription last week as I was still getting bad side affects. Dapsone now stopped and seeing a well-seasoned specialist on May 20th. Can't wait.

So many questions for everyone, however, I saw a nutritionist who specializing in Celiac and Herm/Derm and she told me I didn't have to change soap and/or toiletries (you know the list goes on and on ) as it is not digested. So I am so confused and I hate this bigtime. I know that all lipsticks and lipliners have wheat. Went on line went to stores that say they are gluten-free and and after reading the ingredients (which i had to buy a magnifying glass for my wallet so I can read the small print when I am shopping) and get dirty looks because of the time spend etc, they look at me like I am shoplifting. So frustrated, need help. lost big time.

the blisters are absolutely the worst thing ever, the bloating is the worst feeling ever. HELP

[rdunbar]

I am so confused. I was recently diagnosed with this by a dermatologist because I had this burning blistery rash on my forearms, that traveled to my head and face (I have to say I am 41 yrs old and can honestly say other than this I never had a problem with acne).

My Derm sent me to a Gastro and had the biopsies done within two days. Ash Wed found out what I had. STillllll do not understand all this, buying gluten-free Products, which are supposed to gluten-free right, well still getting sick. Checked all products this week and they all have soy. So here I am thinking and spending all this money and for what I am still sick to the point I get blisters on my left foot on bottom of toes (very painful and getting worse). Derm put me on Dapsone and I got all the reactions. Go for blood work every week. Derm stopped me on Dapsone for a week and then lowered prescription last week as I was still getting bad side affects. Dapsone now stopped and seeing a well-seasoned specialist on May 20th. Can't wait.

So many questions for everyone, however, I saw a nutritionist who specializing in Celiac and Herm/Derm and she told me I didn't have to change soap and/or toiletries (you know the list goes on and on ) as it is not digested. So I am so confused and I hate this bigtime. I know that all lipsticks and lipliners have wheat. Went on line went to stores that say they are gluten-free and and after reading the ingredients (which i had to buy a magnifying glass for my wallet so I can read the small print when I am shopping) and get dirty looks because of the time spend etc, they look at me like I am shoplifting. So frustrated, need help. lost big time.

the blisters are absolutely the worst thing ever, the bloating is the worst feeling ever. HELP

okay, i really really recommend ordering "The Gluten Effect" by Petersens from Amazon, 11$. it will give you a good idea about what is going on, and why what your derms/ docs are telling you is uninformed, misguided gobbleygook. like, No, you DO have to have to use 100% gluten-free body care products. i would go yell at this idiot who told you this lie, and then charged you for it. i went to a derm 5 years ago, and got a skin cancer biopsy, and was told i have 'serborral dermaititis' which i found out means "we don't know what it is", so this is a generic name. it's a diagnosis that is just parroting your complaint. like IBS. the patient says"my gut hurts", the DR. says "my diagnosis is that your gut hurts (you have IBS)). argggggg.

in a study, it was shown that 1/60th of a teaspoon of wheat flour (not gluten, flour has 100s of protiens), is enough to prevent healing. so a miniscule ( much much less than 1/60th of a teaspoon) amount of gluten is too much. pretty much an invisable amount is enough to keep your immune system creating antibodies, which is causing the inflammation, and symtoms, but most impotantly, damage!

if its in your soap, its going to get in your system, thats all there is too it. it gets in your mouth when you wash your face.

a far as 'gluten free' products, if you are in the US, it's meaningless. a lot of these have trace amounts of gluten, and there is no testing of these products to determine what level of gluten is in it. 2-300 parts per million is too much. the problem is that contamination of gluten is always a good possibility, with shared lines, and equipment in the processing, packaging, transport. even the eqipment used to harvest corn, oats, and other grains can be shared with wheat, and you have no way of knowing. ingrediants like xantam gum show up in 'gluten free' products, but it has gluten in it.

i'm not saying that some products are'nt clean, but who knows?? i suffer so badly, that any risk is just unthinkable for me to take. i don'y feel like rolling the dice with my life on the line, no thanks.

i have no desire for gluten free bread, or granola, anyways. i eat a paleoloithic diet, which is really beneficial, even if you don't have celiac.

the reality is that you have to cook for yourself now, and that convienince in eating should become a thing of the past if you want to get better.

it really pisses me off these so called health care 'professionals' are so clueless, and seem to not even want to help anyone. what we need is information to figure out how to get better, because the strategy for getting better (avoiding any and all gluten in even the tiniest amount) requires the use of this information to make all the right lifestyle decisions. they are just trapped in this mindset that everything is a drug or a treatment, and if they can't sell you one of these things, they just don't give a damn.

[Hopeful1950]

rdunbar

Was looking at the list of stuff you eat and I think I see a problem: I see at least one food very rich in iodine, kale. Even after avoiding gluten, the antibodies for DH can remain in your skin for several years and iodine can cause them to erupt. I was having a terrible time until I identified the high iodine foods I was eating. Egg yolks, asparagus, carrageenan,shell fish, dairy etc. I even broke out after having maraschino cherries because of the red dye which is high in iodine. I have not eliminated iodine completely in foods, I just avoid getting big amounts all at once and I have seen a very big improvement in my lesions.

[rdunbar]

rdunbar

Was looking at the list of stuff you eat and I think I see a problem: I see at least one food very rich in iodine, kale. Even after avoiding gluten, the antibodies for DH can remain in your skin for several years and iodine can cause them to erupt. I was having a terrible time until I identified the high iodine foods I was eating. Egg yolks, asparagus, carrageenan,shell fish, dairy etc. I even broke out after having maraschino cherries because of the red dye which is high in iodine. I have not eliminated iodine completely in foods, I just avoid getting big amounts all at once and I have seen a very big improvement in my lesions.

OMG im eating some kale right now as im reading this

w/ chicken, a carrot, a sweet potato, green beans.

i didnt know kale is high in iodine!

I'll try dropping it. thanks so much!

[rdunbar]

rdunbar

Was looking at the list of stuff you eat and I think I see a problem: I see at least one food very rich in iodine, kale. Even after avoiding gluten, the antibodies for DH can remain in your skin for several years and iodine can cause them to erupt. I was having a terrible time until I identified the high iodine foods I was eating. Egg yolks, asparagus, carrageenan,shell fish, dairy etc. I even broke out after having maraschino cherries because of the red dye which is high in iodine. I have not eliminated iodine completely in foods, I just avoid getting big amounts all at once and I have seen a very big improvement in my lesions.

i googled it, and kale has 1,3 micrograms of iodine per 100g, and cod has 99 microgrmas for a 3oz serving, which is @ 100grams.

green beans, (another one of the few ingrediants i even eat) has 3 micrograms. looks like spinich has even more, and i eat that.

i'm going crazy, do i have to stop eating vegetables now???

i am so mad right now. i have no idea what to do.

and seriously, has anyone worn a mask out in public, or heard of anyone doing it??

i was a baker for years; maybe thats why i'm so sensative to severe glutenings from airborne flour in the air.??

[rdunbar]

seriously, has anyone w/ DH ever had to resort to wearing gloves or a mask in public?

I'm thinking about wearing a mask when i go to the grocery store. theres an open kitchen there, and they have a pizza oven.

maybe i'm getting airborne gluten everytime i go in there??

sorry to keep harping on this, but it's getting so frustrating that my lifestyle is so extremely centered around avoiding gluten now for almost a year and a half, and i'm making so many sacrifices. which i really have no choice about, and I've gotten pretty much no lasting results for the DH. it got better for a short time, but never went completely went away, then, it came back with a vengence.

I guess i should'nt be complaining, since i've seen major improvements in the plethora of other 'symptoms', including my mood, and emotional problems on the whole. it's actually really amazing.

If this doesn't get better i want to find a country to live in that doesn't have gluten. Borneo, maybe??

thanks.

[mushroom]

and seriously, has anyone worn a mask out in public, or heard of anyone doing it??

Yes :D

My sister is terribly sensitive to pesticide sprays and weed sprays, and we gave her a real gas mask so she could walk down her long driveway to get the newspaper and her maill

She once got "sprayed" just by winding down her car window during a routine (breath testing) traffic stop.

[txplowgirl]

Hi Rdunbar, I don't know anyone that sensitive who has to wear a mask in public but if you're curious why don't you give it a trial run and see what happens? I, myself have to wear gloves when I made my sweetie his sandwiches or my hands would turn red and itch like crazy and I would get the D within 24 hours if i didn't, so I don't see the harm in trying it out. Who knows, you might actually start feeling better. Good luck.

[rosetapper23]

Yes, it's disheartening that so many vegetables are high in iodine. There is a reason for that, but it would take me a while to explain it.

Earlier you asked an interesting question: Would eating sweet potatoes cause a problem? You raise an important point, since I recently read that a study has shown that Vitamin A is inflammatory to people with celiac. I believe sweet potatoes are high in Vitamin A. I had always wondered why I couldn't tolerate taking Vitamin A or rubbing Retin A on my face (acted like gasoline--burned the heck out of my skin, scarring it for years). I'm wondering if perhaps you are eating Vitamin A too regularly and should cut down. If there's ongoing inflammation in your system, it could be causing a problem with the healing of your DH. This is pure conjecture, though, based on that one study. You might try eliminating the sweet potatoes for a week and then adding them in slowly to see if Vitamin A is causing you trouble.

[shadowicewolf]

Oh hun, did you know over in japan they wear masks if they are sick or have severe allergies? No, it isn't unuasual to wear them plus you have a medical reason to do so as well.

[rdunbar]

Yes, it's disheartening that so many vegetables are high in iodine. There is a reason for that, but it would take me a while to explain it.

Earlier you asked an interesting question: Would eating sweet potatoes cause a problem? You raise an important point, since I recently read that a study has shown that Vitamin A is inflammatory to people with celiac. I believe sweet potatoes are high in Vitamin A. I had always wondered why I couldn't tolerate taking Vitamin A or rubbing Retin A on my face (acted like gasoline--burned the heck out of my skin, scarring it for years). I'm wondering if perhaps you are eating Vitamin A too regularly and should cut down. If there's ongoing inflammation in your system, it could be causing a problem with the healing of your DH. This is pure conjecture, though, based on that one study. You might try eliminating the sweet potatoes for a week and then adding them in slowly to see if Vitamin A is causing you trouble.

thanks, rosetapper!!