Kind Of An Update... Super Sensitive Celiac/dh, And A Really Funny (In Hindsight) Story Of How Terrible Some People Can Be

[Jenniferxgfx]

hi everyone. i haven't been around here for a couple years i think, but i still search the forums for info and i sent new or questioning celiacs here... you guys are the best. i admit i feel some guilt that i haven't been around to pay it forward. you guys are, quite literally, life savers. i thought i'd post a little update in case it's helpful to anyone.

 

i've found i am SUPER sensitive to gluten, not just ingestion, but any contact as well. depending on what i touch and where, contact with anything gluteny can result in itchy blisters from hell within a few minutes up to 48 hours. it's always worse at night, so sometimes i don't realize i touched something i shouldn't have until the evening. it can take months to heal up again, even when i'm being militant about cc and what i'm eating.

 

the fact that this happens through contact is something i think is relevant to other folks with DH or super sensitive celiac, because i know a lot of literature out there says its impossible for DH to form through contact alone. my allergist agrees that this is DH due to contact, because the skin can be "leaky" just like the gut can be. this information might be useful for you to know, as well.

 

my skin reactions are a little wild and unpredictable: they're often tiny water-filled blisters, but sometimes they're larger and red, sometimes it looks like acne, hives, or contact dermatitis. once i got an enormous plantars wart that started out as an even more enormous blister. i believe the trauma of the wart forming is what caused that blister. i'm very sensitive to the koebner effect. i once burned myself cooking, and the burn itself healed quickly (within about 3 days?), and the day after it was just a red mark (2cmx1cm), the red mark became covered in tiny water blisters.

 

some things that have caused dh blisters or other gluten rashes include BP cuffs at the doctor's office, communal pens (like sign-in sheets), the conveyor belt at the grocery store, luggage stored in the closet from my "pre-Gluten-Free" days, pieces of popcorn ceiling that fall down when the cats bump it or messy contractors work in my apartment building, "cat grass" (it's wheat grass, usually!), thrift store clothes, unwashed new clothes, my keychain after taking my car to the mechanic, and, worst of all, my husband's job. he has a new job now where i'm not getting glutened like i used to, but his last job was awful. he had to get right in the shower when he got home from work, and i had to be so careful washing his clothes, because of the gluten. he worked at a municipal recycling facility and it was a dirty job-- a lot of that dirt was gluteny, i guess.

 

it's definitely cumulative: if i get a hand blister from touching something, the next tiny exposure will make existing blisters worse/redder/bigger/itchier. after a few tiny exposures, i start having intestinal symptoms and fibromyalgia pain again. the more tiny exposures, the longer it takes to recover.

 

i had found a few safe restaurants (or so i thought), but i'm finding that any place that isn't strictly glutenfree is very unlikely to be safe enough for me unless the chef or owner is incredibly knowledgable about celiac. my allergist says that people with DH usually have to be more careful than non-DH celiacs, and that was something i'd learned here before he ever said that anyway.

 

we used to have someone living with us who i considered family. she saw my dramatic improvement on a gluten-free diet, and was understanding when my husband and i made the entire house glutenfree. (having a mixed house was still making me sick.) interestingly, her chronic pain also improved a bit with the glutenfree house. things improved exponentially within about 6 months. my skin was clearer than it'd been in my whole life. i felt amazing inside and out. and then it was like i hit a plateau. my skin started flaring up, i started having less energy, i was moody, my iron levels dropped... i couldn't figure out what was going on. i started being even more militant: nothing with grains that could be remotely cc'd, no eating out, i'd often just not eat because i was afraid of being cc'd. i was afraid of going out to the supermarket or the pharmacy (the only two places i ever really went) because i knew i'd end up reacting.

 

fast forward about a year and some change, and i discover a tupperware containing a LIQUEFIED TURKEY SANDWICH. it was so old, it was decomposing. i could tell there was still recognizable tomato, and meat, and bread. and it most certainly was NOT glutenfree. i look a little harder, and the backpack (HER backpack) containing this horrifying mess also contained some gluten-containing snack food and candy. suddenly, things start to make sense. i showed it to my husband, and we pieced together that she'd been sneaking food into the house for a very long time. she would sneak bites of stuff when i stepped out of the room. we found empty cake containers and more snack packages tucked into weird spots where she spent her time in our house.

 

this also explains why i was slowly losing silverware and tupperware: she would use it and throw it away. i also couldn't explain why i was running out of plastic baggies so often when i never used them. (the kitchen is my domain: i do/did all the cooking, and packed my husband's lunches, too.) she would purchase large quantities of food, pack it up into little servings, and hide them. she would eat the food in the bathroom, where she would stay for 45 minutes to an hour each time. she claimed it was her crohn's disease acting up. (i do not believe she had crohn's disease in hindsight, either. i was also her healthcare power of attorney, and went to all her doctors appointments. the tests for crohn's came up negative.) after she left, i found an empty dessert container (and my silverware!) from a fast food restaurant under the bathroom sink.

 

i also found receipts from the same fast food restaurant: about $30 in fast food each time! she would walk (half a mile each way) to this place when she knew she'd be alone for a long enough time. she used to claim she was too sick to leave the house so i would run her errands (get her bizarre food cravings like specific-colored gatorade and specific brands/types of potato chips, plus the pharmacy for her legit meds and the painkillers she was abusing-- which we figured out about the same time as the gluten she was poisoning me with). she would claim she was too sick to do anything at all, really. and we fell for it. it turns out she was using her illness as an excuse to take advantage of us, and make me very VERY sick.

 

it's very difficult for me to say that anyone would use their illness to manipulate or harm people, because i was so unwell for so long, and so many people didn't believe me or thought i was making it up. it really messes with my head to think that someone would really truly do such a terrible thing as to lie about being so sick.

 

anyhow, so when she'd go out and buy a barrel of chicken nuggets and hamburgers, she would always clean the kitchen really well after, almost compulsively. i couldn't figure out why iw as getting glutened every time i did the dishes-- because the SPONGE was cc'd. i was getting new sponges every couple days because i thought she was finding hidden crumbs in corners of the kitchen from pre-Gluten-Free days the way she was going off on these cleaning benders. i am VERY sensitive, and i was about to lose my mind thinking i was even more sensitive than all of the stuff i talked about above. plus since she was sneaking food all the time, lots of things were cc'd again, like remote controls, doorknobs, phones, shared bottles of benadryl, stuff like that.

 

it's been a year now since we kicked her out, and we couldn't be happier. things with my husband are better than ever, and we're having such a good time now that i'm not being poisoned every day. unfortunately, i believe that what she did has ramped up my sensitivity even more (because it was basically like going glutenfree for 6-9 months, and then going back to consuming/using gluten again because of the constant exposures), and that might be why it's so significant as i described in the beginning of my post. i'm still healing up, and my skin is still active with DH because it doesn't take much to bring it back to the forefront. (plus the "safe" restaurants.. and then i discovered i have the exact same reaction to gluten-free oats as i do to gluten, so when i ate cookies with gluten-free oats every day for almost a week, i had a huge flareup a few months ago.) i'm pretty angry at what she did: she put my health and safety in jeopardy, and lied to my face about it. what she did was abusive and inexcuseable.

 

of course i feel stupid for not figuring it out sooner. as they say, love is blind, i guess. but now i know. and i don't miss her one bit.

 

when confronted, she still chose to lie. eventually she was able to confess that she found it "too difficult" to be glutenfree and didn't want to upset me by telling me. instead i guess she'd rather try to kill me.

 

that said, the fact that someone is SO ADDICTED to gluten that they had to go to that extreme, buy so much of it that they forgot about it till someone else found the sandwich liquefied and decomposed....? well, that's kind of hilarious. disgusting and putrid, but still hilarious. i'm glad there isn't a food on this earth that has that kind of control over me.

 

[dilettantesteph]

At least you figured it out and you are doing better now.  I would try to forgive her.  I'm sure that she didn't realize the impact that it was having on you.  It is hard to understand.

[GottaSki]

Glad to hear you are improving!

 

I would also forgive her.  She wasn't trying to kill you...she was weak and probably feeling guilty much of the time and/or didn't really "get" how careful we need to be. Now that you have improved, if she is still in your life, she undoubtedly understands that the minor exposures were impeding your improvement and makes one more GlutenEater out there in the world with real knowledge of Celiac Disease.

 

Hope to hear you continue to improve

[Jenniferxgfx]

no, she will not be forgiven. she was poisoning me for a year, knowing full well what she was doing all along, and lying to my face about it when she would see me reacting. all the while, she was pretending her illness was so debilitating that she needed me to care for her, even while I was feeling glutened and miserable. in addition to poisoning me, she was stealing my pain medication and abusing her own. (I have a spinal cord injury and live with chronic pain.) at least once she even had a script filled in my name and signed for it. (I got proof from the pharmacy for that one, but it may have happened other times i don't know about.)

 

we were romantically involved, and she watched me get sicker and sicker, then improve to a point she'd never seen me in all the years we had known each other, so this wasn't just some dumb dopey roommate being ignorant. she willfully and knowingly put me in harm's way. what she did was abusive.

 

i do not believe she is more aware now. i believe she's a sociopath (there's plenty more to this bizarre story that isn't relevant to this board) and will use people in any way she can in order to benefit somehow. she has not kept in touch, and at this point, i'm thrilled she's out of my life.

[GottaSki]

no, she will not be forgiven. she was poisoning me for a year, knowing full well what she was doing all along, and lying to my face about it when she would see me reacting. all the while, she was pretending her illness was so debilitating that she needed me to care for her, even while I was feeling glutened and miserable. in addition to poisoning me, she was stealing my pain medication and abusing her own. (I have a spinal cord injury and live with chronic pain.) at least once she even had a script filled in my name and signed for it. (I got proof from the pharmacy for that one, but it may have happened other times i don't know about.)

 

we were romantically involved, and she watched me get sicker and sicker, then improve to a point she'd never seen me in all the years we had known each other, so this wasn't just some dumb dopey roommate being ignorant. she willfully and knowingly put me in harm's way. what she did was abusive.

 

i do not believe she is more aware now. i believe she's a sociopath (there's plenty more to this bizarre story that isn't relevant to this board) and will use people in any way she can in order to benefit somehow. she has not kept in touch, and at this point, i'm thrilled she's out of my life.

 

With more detail...I agree -- good riddance

[dilettantesteph]

It sounds terrible and I'm sorry.  I still think that forgiveness is a good thing, not for the other person, but for you.  That is perhaps a discussion for another board.  I wouldn't take her back into your life though.  Having her out of your life sounds mandatory for your health.