Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

Jenniferxgfx

Advanced Members
  • Posts

    293
  • Joined

  • Last visited

3 Followers

  • kennedymoore
  • MerrillC1977

Profile Information

  • Gender
    Male
  • Interests
    veganism, baking, photography, environmentalism, activism, disability advocacy

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

Jenniferxgfx's Achievements

  1. i'm actually very well read on the topic, and i apologize for not finding a more suitable. but i came here looking for razor suggestions, not to defend my diagnoses.

     

    i am well aware that "gluten allergy" is a false term, which is why i didn't use it. perhaps mentioning my allergist made things confusing. it just so happens that my allergist (who i started seeing for asthma) is very knowledgable about celiac disease because he just happened to end up with numerous patients who have allergies (including wheat allergies, obviously) and comorbid celiac.

     

    as for the "gluten molecule" and permeability, gluten is an incredibly bulky protein molecule (thousands of times larger than a small molecule like table salt, or even the average active pharmaceutical ingredient), which is actually a composite of two separate proteins (glutenin and gliadin). The entire gluten molecule need not be present to initiate a reaction, only the portions to which a specific individual is sensitive. (Not that anyone knows which portions those are and to which individuals.)

     

    yes, i've been diagnosed with DH (yes, by actual medical doctors). i do also have allergies (which complicates the razor issue because once i found one with published ingredients, it was gluten-free but not lanolin-free, which is one of my allergens). i was hoping someone had experience with this (just as i've gotten help from others finding other health&beauty products in the past), so i could start with a much shorter list and then eliminate those with my known allergens. it sounds like others don't have experience with this, which is really all i needed to know. thanks.

  2. This is a good list! One thing that I would like to add is that once a restaurant informed me that all their tofu has gluten in it, because it's a soy product. What?? Unless it has flavoring added (usually in the form of soy sauce) tofu is definitely gluten free.

    i've had this happen too! people get so confused about celiac alongside all the different allergens their customers are concerned about. i was surprised how adamant one restaurant was about this, too.

  3. i'm convinced those stupid moisture strips on disposable razors i've tried may not be glutenfree enough for me. i usually react when the razors are new, but once they're old and the strip is worn out, my skin is fine. shaving with a dull worn out razor should NOT be easier on my skin than a fresh new one!

     

    since there's so many options out there, i don't even know where to begin trying to find one. i've emailed companies twice in the last year or so and none emailed me back, so i gave up. and i'm tired of having hairy legs.

     

    does anyone else have problems with disposable razors? do you have one you like?

     

    i like the idea of an electric razor, but i don't have a clue how to find a reliable one for women-identified people, or just one that'll work on legs. my husband uses an electric trimmer rather than a razor, so i can't just steal his to see if it works.

     

    i'm not very good at being a girl when it comes to this sort of stuff. can you help? :)

  4. seconding the posters above. i also take pain medication for chronic pain, and i've called several manufacturers (in the US, the manufacturer, even of generics, should be listed on your bottle, then google the customer service number for that company). You may have to be persistent, and ask for a list of ALL The ingredients in the medication. Then ask again about anything that might be grain-derived. One manufacturer actually took several days to research and get back to me, but usually they can answer right away. I've found it also helps to disclaimer your questions with something like "i understand you don't test your final products for gluten content, so you can't guarantee anything is glutenfree. right now i'm just asking about specific ingredients or potential sources of contamination so my doctor and i can make the most informed decision."

     

    dairy is suspect to me (especially in the early stages of healing), so maybe try taking your meds with a gluten-free and DF snack instead and see how they go down.

     

    for what it's worth, i've actually gone WAY down in my pain medication usage since my intestines are healing up. i am on the much milder hydrocodone, but at one point i was taking 40mg/day, and now i'm usually around 15mg per day. that's even with being a LOT more active than i was at my sickest. (my pain meds are for a spinal cord injury that will only continue to worsen, and won't improve, so i can't say i've healed that up or anything.) i hope you can get some relief, too!

     

    best of luck. this board has been so helpful, i just can't say enough good things about it. you've found a good crowd :)

  5. 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.

  6. 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.

     

  7. I went gluten-free a month before you and I haven't had this situation yet but I've thought about it. I think it must have been so awkward for you to be talking about your private life when you were networking and socializing professionally. :/ I had a friend who'd gotten sick and discovered celiac when I was working and everyone (including me) asked her SO much about it. (it wasn't until I got sicker with what I NOW know is celiac did I realize it's poor form to be so nosy because I didn't want to share so much myself. So ironic that all these years later I've got celiac myself and I continue to think it's impolite to be so nosy lol.)

    Anyhow. I guess it's nice they're so concerned and that you were able to get a special salad (those folks were a little impolite to be all over you about it), and we're supposed to smile gracefully and joke about being "high maintenance." That was kinda my plan. It's not a bad thing-- it is what it is.

    Definitely bring snacks. Lots of snacks, and a selection of things in case you have a craving or end up being extra hungry (or a planned-ahead gluten-free option doesn't work out). I LOVE Justin's nutbutter packets, Lara bars, cashews, and dried cranberries. Also I found these delicious oskri chocolate covered coconut bars that make the BEST desserts.

    Btw, Don't transfer your food to another plate. You won't know if the new plate is cc'd.

    This is a HUGE life change. I don't feel bad passing up food I can't eat because I love feeling better too, but food is such a huge part of our culture, there's a lot more meaning behind it than nourishment. (in your case it's tied to your relationships with your colleagues!) it's okay to be sad for this change, and accepting it is more than just changing our diet. It's about navigating all of life differently, really. It's okay to feel bad about it sometimes.

  8. This post is timely for me! We're takin our first trip since going gluten-free next month, driving to Arizona from CA. we decided to rent an RV because of all our health problems and concerns about privacy.... And it should be fun! I'm really not sure what to pack that I/we won't get sick of after a couple days. We'll be gone for 7 and spending 2 with my folks, who don't really understand my gluten freedom totally.

    I LOVE Justin's chocolate nut butter packets. They're delicious and healthy and also really cheer me up when I'm out and about and bummed about bringing my own food and the loss of convenience-- chocolate and peanut butter in my pocket? Yes please! The peanut butter is the cheapest but the hazelnut and almond are delicious too.

    I'm thinking of bringing canned hummus and crunch master crackers (my favorite morning snack), lots of Lara bars, and hopefully I can figure out how to make rice pasta and sauce (favorite dinner) on the road.

    Do you bring your own pots and pans or trust what they provide?

    I think I may need an extra two suitcases to travel as a celiac...

  9. My celiac symptoms worsened and became severe when I live in SE mich. the Livonia Family Practice and the hospital they use (Beaumont I think? It's been awhile) treated me horribly and flat out said more than once I couldn't possibly have celiac. They tagged me with the fibromyalgia dx, blamed all symptoms on that, and put me on dangerous Reglan, while blaming me for causing my own illness with my fatness. I can't tell you where to go (I believe I was nearly on death's door when I left that state), but don't go to LFP or Beaumont hosp GI or rheumatologists.

    Good luck.

  10. Ugh. The only person who can pull that label-reading joke is my husband. I just don't find it funny at all but I know he's not doing it to be mean, and he doesn't do it when I'm upset or overly hungry. He has good timing.

    But it's not funny at all when anyone else does it.

    Good luck! Anemia is way more likely than leukemia btw, but I had the same worries.

  11. I have a latex allergy that's gotten worse over time. I carried my own box of nitrile gloves in college for labs because it was easier than getting the school to provide them. One box lasted a few semesters and I had a lot of labs. Buying your own means you can get the best (textured fingers!) in colors you like and for a few bucks. You'll be the envy of your lab mates ;)

    But seriously, take this seriously. What started out as a little rash from gloves now is bordering on anaphylaxis. I never avoided latex fruits before but this week I realized I have NO business eating bananas because I have esophagitis symptoms and a little trouble breathing. I never noticed before because my gluten reactions had me so miserable that the banana reaction was a drop in the bucket. If you can minimize your exposure to latexes, you may have an easier time with accidental exposures later on, especially if you work in a lab someday.

    I hope they stop using latex gloves everywhere someday because most folks I know with the allergy have worsened over time, and nitrile is a better barrier in many cases anyway.

    Also: some prophylactic Benadryl has helped me in labs on the past. Good luck!

  12. I also suggest super sensitive celiac. Your millet cereal may have some cc, even. Any grains may be processed on equipment not cleaned well enough for your sensitivity. I've never found rice to be an issue, although some other people do. Maybe give up the millet for a bit?

    I suggest not over complicating matters unless absolutely necessary-- since you know gluten is a problem (with casein and soya), and gluten is so sticky and insidious, it's really likely your symptoms that feel like gluten are in fact caused by gluten, just at a level of sensitivity you didn't expect. (totally relate to that!)

  13. I'm 4 months in too! (in a week.) we're like celiac buddies :)

    I had a nice appointment with my allergist yesterday, and I asked him about my numb hand every time I'm exposed to gluten. He said from an allergy perspective he had no ideas, but to make sure it's not something else, and to try not to blame the gluten for everything right off the bat. It's easy to do, and I always do it, but he's right. Gluten is the source of a LOT of my problems but it's not always going to be gluten.

    But also? It's hard not to think about this all the time. I'm really deeply affected emotionally by this situation. The very basis of my culture's diet is the same thing that was literally killing me. That's heavy stuff and hard to wrap my head around it. I think it'll get easier as I accept it for what it is and get on with my gluten-free life. But this is more than an illness. It's an illness that really thumbs its nose at our culture! So there's more to it than just learning to be glutenfree, I think. I feel like I'm learning how to navigate to world all over again.

    I'm sorry if I'm too philosophical for this time of night. :)

  14. I forgot about online shopping! If you have space, when you find a non perishable item you like, you may be able to find it online cheaper. My husband went a little crazy online and got a case of pretzels and cookies we like, and stocked up on Lara bars and peanuts. We saved money and it's a few less items to stress over at the store.

  15. I had reflux for years and not until I realized I probably had celiac (recently!) did I learn the wonders of pepto bismol. It's not perfect but it really takes the edge off for me. I cant stomach liquid meds, but I take the pills with tons of water and find it helps. Also, insufficient stomach acid (usually from lots of heartburn meds) can feel the same as too much acid, and I think that may have been my issue too. I was on prilosec (or something like it) for 15 years.

    Everyone else has great advice too. Dairy, vitamins, and gluten-free dairy-free probiotics. :)

  16. Plan extra time for your shopping trip, and don't go there on an empty stomach. I made that mistake. By week 2 I was famished and in a huge calorie deficit, and needed a lot more than I was eating. I nearly had a meltdown in the store with my husband because so many of my favorite items had hidden gluten. I eat a vegan diet and lots of whole foods, but my favorite condiments and other little things seemed to have gluten! It took SO much longer to look for gluten than it ever took to look for animal products, which blew me away because I've always been shocked at how animal byproducts are hidden in foods. But gluten takes the (gluten-free) cake.

    I've been a huge "from scratch" girl, but learning to bake gluten-free (and dairy and egg free) has been humbling. I've found a few decent mixes that have helped boost my confidence in gluten-free baking. The King Arthur cookie mix is quite good! The Namaste pizza dough mix is pretty good, too.

    But mostly I suggest picking out all those gorgeous fruits and veggies in place of gluten-free convenience foods. BUT, if you like sweets, get yourself a treat for midnight snacks. :) I love kinni-something brand oreos. They helped soften the blow of transitioning to gluten-free, although I rarely have them now. It's been 3 months (Close to 4) for me.

    Good luck! It's still hard and time consuming for me, but it's a LOT easier. The folks here give great advice! You'll be a pro in no time :)

  17. Scientists don't know all the genes associated with celiac (or GI), so there's no way to be sure if someone's got GI or celiac. What matters is if gluten makes you sick, you need to avoid it. The names are just semantics.

    Your reactions to gluten are so serious and intestinal it makes me think you're proof there's more genes involved in celiac than the two biggies!

  18. I've been leery of samples since going gluten-free because I just don't know how clean the prep area and platters and stuff are. Sometimes it seems safe-- using clean Popsicle sticks for samples fresh from a package and no other products (once there was a fava bean dip!) but mostly I skip them. I used to LOVE free samples, so it's a tiny bummer but I don't NEED them.

    But I think mixed samples on the sample tray is just SILLY. I'd let them know casually (a note dropped off, an email, a comment next time you're there) just to feel better about maybe preventing a new less informed celiac from a reaction, but I agree with the looking out for yourself thing. Odds are good I won't starve by passing up any questionable food in this day and age.

  19. My money is on those sulfites. Those are scary buggers and I have a similar reaction. (although the reflux may likely be from the other ingredients, I may have an esophagitis reaction to the sulfites if there's a LOT, like poor quality dried fruit.)

    Which coconut milk is this? I like to know what brand to stay away from!

×
×
  • Create New...