gluten gluten everywhere

dear the people who either gave me this gene or share the same genes as me,
 
hi! i’ve been meaning to get around to doing something along these lines and when dad sent me a link to an online auction for grooming van, (i don’t know why) i felt the time had finally arrived (i don’t know why).

i will refresh your memories. i have genes. very annoying genes. i have a double copy of the “Serologic equivalent: HLA-DQ   1,1  (Subtype 6,6).” the stars have aligned and given me an exact match of this gene. making me some sort of gluten related super hero. it’s all very exciting. one each from my mother and father (thanks!) which means my siblings have a good chance of having one or both as well.
 
this gene is not a currently recognized “celiac gene” in america. this gene is linked to problems with gluten. what are the “problems” you might ask? i might tell you they are these:
 
a) the classic “intestinal issues,” meaning diarrhea, 6-12 hours after ingesting gluten. i find, now that i’m do not ingest gluten, i do experience the time lag. when i wasn’t on this diet i would immediately experience issues.
 
b) within hours i become very tired. if i stay up, i will develop the first part of a migraine for several hours. during this time i can take advil to lessen the oncoming migraine. about 10 minutes before the most painful part of the migraine i am very nauseous. the DQ1 part of the gene is well know for causing “neurological symptoms.” (migraine, ataxia, fibromyalgia, epilepsy, dementia, skitzophrenia)
 
c) skin rash. my skin is also not a fan of gluten. after ingesting gluten, i get a rash on my torso under my armpits along both sides. it’s super fun and, bonus, attractive.
 
d) the other affect this gene can have after consuming gluten is called gluten ataxia. ataxia means, basically, unsteady gate. if i try to stand still i sway in place and i also bump into things.
 
d) lesions on the brain. i am planning on asking mary’s neurologist if she thinks this could in any way be related to the start of mary’s tumor. the fact is that any “abnormality” on the body, a cut, sun exposure, etc has to be repaired. the replication of cells for repair increases the opportunity for an abnormal cancer cell to replicate. if mary has a copy of this gene she might have had lesions formed on her brain and allowed for an abnormal cancer cell to replicate and cause a tumor. mom has said that she already asked about the risk factors for the tumor, genetic, environmental, etc. mabes i can get an email address?

e)this gene is also usually associated with other allergies. i have been tested for milk allergy=negative (woo!). i’m allergic to figs, latex, bees, seasonal, possibly corn.
 
f) mouth sores! they can be caused by exposure to wheat (among other things) and are also aggravated by stress. fun fact= if you get mouth sores (cold sores/ulcers) inside your mouth, a lysine supplement will dramatically reduce your getting the sores and if you already have one, it will reduce the length of the life of the sore. fun fact two= if you *do* have regular occurances of ulcers, switching to a sulfate-free toothpaste will help prevent their occurance and will make teeth brushing much less painful while you have them. (i use kiss my face toothpaste).
 
g) leg/foot cramping. this starts probably 24 hours after ingesting. i think the loss of potassium because of the poor absorption causes this particular aspect. i distinctly remember having horrible cramps in my feet while swimming in our pool a lot.
 
h) bone/joint pain. i’ve always had what i refer to as “growing pains” in my bones. deep pains that are very annoying. i know that bones grow for a long time and just wrote it off (i guess recently i’ve had to admit my bones probably stopped growing long time ago). well, they’ve stopped and they come back if i ingest gluten. my hand/wrist joints also ache after consuming gluten.

 
 
why am i telling you this?
why didn’t i know about it before?
why don’t you have any effects while simultaneously knowing you have the gene?
if i were you, would i, knowing the pain-in-the-assness of being on a gluten free diet, go on a gluten free diet?
 
 
internetty facts about the actual estimated population of people who should be on a gluten free diet and/or be helped by a gluten free diet:  
there are 3 million people who are diagnosed as celiacs.
 
there are 8 million people who have celiac but do not have the classic GI symptoms. these people are the bare bones of the population that have issues with gluten.
 
gluten sensitivity is very hard to diagnose even in people who are celiac. the blood tests that are geared towards diagnosing celiac are super unreliable. even the “golden standard” of biopsying the intestines, contains the high possibility of false negatives. genetic testing is really the only way to go.
 
therefore, the estimated number of people in the united states that need to be on a gluten free diet is 60 million people. this includes “normal people” who could benefit from the diet as well.
 
as far as why i’ve had this for a long time and not done anything about it, triggering (explained below) is probably part of the explanation. the other part is the “normal” state of our bodies that we get used to over time. “oh, my bones just hurt, that’s always the case,” etc, etc. our bodies and minds search for normal and become accustomed to a great many things over time. it’s all about survival. i know i have this reputation for “not liking doctors” (which is a whole ‘nother story) evidenced by the fact that my sister got a cat scan after migraines and i’ve been having them since puberty. please do not feel as if i’m trying to garner sympathy or guilt, i’m just stating what happened. (coughcough) BUT, however and so forth, this disease is super hard to diagnose, people go through years of testing and being told nothing is wrong with them except stomach issues. i’ve researched the hell outta this and, backed up by my genetic testing, i’ve found the answer.

the other thing i wanted to mention is that the symptoms can be triggered. if you’re not experiencing any issues and all the sudden, after a stressful event, you start seeing issues, it might have been triggered. there are so many symptoms i’ve experienced for such a long time associated with gluten issues, it’s amazing. i am so happy to have finally pinpointed the trouble, it almost makes the diet a non-issue.
 
the best way to get tested is through Dr Fine in Dallas. he does patient sent in testing, you can submit it to your insurance as well. i would suggest the genetic testing only. here’s his website. check it out.
 
anywho, i am a veritable encyclopedia on the subject at this point. i would love to talk/email to anyone/everyone about this information. let me know any questions/concerns/offers of various gift cards/etc.
 
***free hugs if you’ve made it this far. ***

this is an all about gluten email i’ve sent to several friends. yes, i am very sensitive to gluten and yes, do all of this stuff every day.

ok, gluten. i love this: Gluten-Free Newsletter from TriumphDining.com i definitely use the restaurant cards and i would like to get the grocery store app on my phone. all their info is very helpful! there are a lot of gf blogs that are helpful. oo! gluten free faces!

biggest problem is getting the gluten out of the house. it’s a problem because it’s sticky and it’s a problem if other people in the house would still like to eat it. gluten is on the wooden cutting board, the wooden spoons, the plastic cutting board and spoons, it’s on everything porous (especially teflon!) you’ve ever used in a gluten household because it’s on the sponge and in the sink and in the dishwasher. it’s also on any sieves in the house. make sure your dishwashing soap is gluten free- most are but … there’s always a few that aren’t gf. dish soap too (dawn is safe as is mrs. meyer’s).
 
i bought a NEW pack of stainless steal mixing spoons and a glass cutting board. i’ve since switched to wood again because, really, glass cutting boards are just annoying. i wash it with my gf dish soap and my gf scrub brush which i keep under the sink. i have my own cabinet that is gluten free and my own counter space that is gluten free because chuck does have *some* gluten in the house. however, we tried recently to have sort of a gluten explosion (which means gluten in the house everyday including bread and pretzels and all sorts of things) and i was sick for two weeks. the week during and the week after. i cleaned the kitchen from top to bottom every night and i washed my hands a zillion times.
 
what has worked in our house has been things that are sort of gluteny. some examples: there’s a brand of tortilla that i know aren’t floury at all, things like soups/sauces with gluten in them.
 
things you might not know: if you bake with flour, it will stay in the air for 24 hours. i do not cook with wheat flour in the house any more. clean out your silverware drawers because they usually have crumbs in them. use a specific pair of scissors for opening gf foods. use a specific can opener for gf foods. even pots and pan that are stainless steal will probably have some residue on them, especially cookie sheets/other baking dishes. i *have* used all the glass/ceramic dishes i already had with great success. i do use the same cookie sheet as before but i cover it with heavy duty foil, would probably be easier getting a new one. i have a gf hand towel in both the kitchen and the bathroom.
 
which brings me to: gluten in cosmetics and lotions and pretty smelling hand soap. bath and bodyworks has gluten in most of their stuff. i have stopped buying all of their stuff. i now love the mrs meyer’s soap. i’ve found it hard to figure out all the lotion stuff so i switched to pure things like coconut oil for moisturizer. i use a lot of the burt’s bees stuff as well. they’ve just changed their website so that you have to call to verify their new lines (they’ve changed suppliers or something).
 
things i’ve messed up on: drinks- a lot of drinks have gluten in them. starbucks has gluten in their fraps so anything from the blender is out. there are some sodas that have gluten in them. bummer and very surprising. frozen yogurt- be very careful. shakes from ice cream stores are made with the same equipment that makes malts and shakes with cookie bits/etc in them. you can ask the employee to clean the machine but i doubt their method would be sufficient. also, they might get annoyed with you (if you know what i mean) (maybe i’m just that paranoid). other things: chocolate, tomato sauce (sometimes tomato paste has gluten in it but they can just list it as tomato paste), all broths and rice noodle soup- some contain gluten.
 
the most frustrating thing about gluten is that it’s everywhere and all it takes is one wrong move and you’re contaminated. i’ve tried to have gluten in the house but it’s just too impossible. if i don’t wash my hands well enough, if i touch the counter and then touch my face, if chuck touches the dog and then i kiss her, if i hug/kiss him after he’s eaten gluten. we’ve pretty much decided that he’ll just have to eat gluten outside the house.
 
i look everything up online. if i can’t find a reliable source telling me the product is ok, i forgo whatever it was i was contemplating. even if it looks gf, it’s just not worth getting sick. some people are fine with “made in the same facility as wheat” labels but, for me, this has never ended well. whole foods has a gluten free facility as does udi bread which is the BEST gf bread EVERRR!

i have found that calling company’s 1-800s on the package usually results in a good outcome. they usually know what you’re talking about now. in restaurants i’ve found it’s best to ask what would be the easiest or accidentally gluten free meal. even if they say they can make it gf.

the results came in from enterolab! they HAD to send it on the VERY last day that was acceptable. i called them threeish weeks after they received it and the phone answering lady said, “oh, it’s been three weeks. it should be there today!” all cheery and everything. whatevs lady. why does it say TWO to three weeks then? you guys just wait.

anyshoozle, the results came back. FINALLY! i did not have any malabsorption and i did NOT show allergy to milk ( i was sooo terrified!)

it showed i have two identical genes for gluten sensitivity. the HLA-DQ   1,1  (Subtype 6,6). this totally scares the shit out of me because my aunt has a brain tumor and she’s showed allergies to wheat (not that she ever told anyone, uuugh!). did she have lesions on her brain and one of them gave the op to the tumor cell to start? is this why i’m not having migraines anymore? (YES!) is my whole family in danger? can i get them to be tested? and stop the gluten?

so many questions. i asked enterolab for an info sheet on the DQ1. not response yet, i need to call and bug them. i hate calling and bugging.

went to abuelo’s recently. it . was. awesome. super awesome!

they have a special menu that’s all professional and stuff. it’s like a real menu that makes you feel special. and there are 1′s and 2′s denoting the “safeness” of each entree. 1′s they are confident have NO gluten the 2′s have a possibility of cc. within moments of asking for the gf menu the manager came over and explained everything about the menu. it made me feel safe and happy.

my meal came (i got the stuffed peppers, a 1) and it was yummy! and i had no reaction. yippe!

i thought it would be easier to keep an online journal (not so much)

friday:

yogurt

oj

potato chips

2 hebrew national hot dog

jalapeno chips

ketchup

saturday:

gluten free muffiny thing from starbux

white chocolate mocha

coconut rice w/ chicken curry

hebrew national hot dog

custard

shepherd’s pie (meat and potato)

i wonder if i’m not having issues with milk?

i only remember coconut curry chicken and coconut rice mmmm

honey nut chex

water