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Gluten Free Guerrillas
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Confused.

I have been having loose bowel movements mostly in the morning about 3 times per day for about 4 years now. Last 2 years feel nauseous most of the time, quite debilitating. Then about 6 months ago I was getting bad heartburn, sore throat, acid reflux type symtoms. Often have earaches. Doc put me on omerprazole and had an endoscopy but all looked normal. Went back last week and doc wanted blood test to rule out celiac disease. Day after blood test put myself a gf diet- 5days ago. Phoned surgery 3 days ago and they said bloods were normal. Carried on with gf anyway. Yesterday had intense ear ache and felt dizzy and nauseous. Had gf curry last night. Drank loads of water this morning then had about 3 loose bowel movements and had severe stomach cramps all day, took two immodium lunchtime. Just had turkey and egg salad with new potatoes and stomach cramps are really intense right at the bottom of my stomach. Has anyone else had a similar reaction? ? Could it be milk in cups of tea? Just want to feel better. Have had to phone in sick for work tomorrow and feel quite down about it all.

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Oh just want to add, stopped the omeprazole about 2 weeks ago as I still got indigestion on them.

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Hey I have felt nauseous for the last 19months after having the Nero-virus (my symptoms are nausea,tiredness,tummy problems,dizzyness, weird feeling in my ears, and loads more) (I don't eat dairy,wheat or gluten anyway) and have had endoscopy, MRI scan on brain,CT scan on stomach area and endless bloods and so far nothing! It all got much worse in January when the nausea got so bad was struggling to eat and lost 3stone and was in bed for 12weeks as was so weak I have been off work now for 5months (since December my symptoms added with headaches,acid reflux, period pain which leaves me in bed for days in agony and worsened tiredness. Tests are still ongoing my consultant says it could be a post viral infection which can take 2years to go and him and gp thinking I may (not Deffo yet) have got ME. I would try cutting out dairy you don't have anything to loose and loads to gain how old are you?? X

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Oh dear that sounds really awful, so hard when you don't know the cause!! I will be 34 next month. I hope it isn't ME and they can resolve your illness somehow.

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If it is food related, there may be a few of the foods that could be the culprit. I agree definitely start with dairy, I would also cut out gluten & keep a food diary. You may be gluten sensitive as oppossed to coeliac, which in reality is just as bad. Other foods that kick off an immune reaction are eggs, all grains & pseudo grains, all nightshade foods, nuts & seeds. You just have to become your own best detective. It won't be easy but worth it to see if any of those things are making you worse. ME is now considered to be an autoimmune disease. Anyhow, loads of info on the web, try purehealth.co.uk, food matters, paleomom & a great book re the food is Paleo approach by Sarah Ballyntyne, all of the above have helped me hugely. Good luck

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All of my bloods were negative but I have major problems with Gluten, Soya and Milk. I definately would not rule out the milk, just try cutting it out of your tea and coffee at first and if you feel much better then you know it is a possibility and you can eliminate it from all your foods. It's very hard finding out what is causing symptoms sometimes but you just have to do some trials and eventually you can narrow it down. If you try losing the milk for a while and then after a couple of weeks add it back in and see if you symptoms return. I hope you get sorted, good luck :)

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Hi there, my first question is have you been on antibiotics recently as they kill all the bacteria in our guts including the good bacteria and to regain a balance taking probiotics will restore things nicely. I think that probiotics could be beneficial to you anyway and if you don't want to get this through eating live yoghurt cultures you can buy probiotic capsules at a chemists.

The other thing I would try is a simple bland diet to help your gut settle down and consider an elimination diet by keeping a food diary and introducing new foods gradually and monitor any effects, it is very important to have a balanced diet so that you are getting all the vital nutrients that your body need and it might be worth doing this with a nutritionalist. Also worth bearing in mind is stress and too much stress in our lives can and does up set our guts.

You also need to be monitored by your GP to make sure that there is not an underlying illness at the root of your issues and this is very important in my opinion.

Lastly this may interest you: nhs.uk/Conditions/food-alle...

And good luck.

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I take udo probiotics and they really help.

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Thanks for replies! No not been on antibiotics recently. Feeling so tired and frustrated. Got docs appointment thurs, I'll see what they say.

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Hi there I know what you are going thru and sympathise with you! have you had your gallbladder removed?

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Just wanted to agree with the suggestions of cutting out milk, i had been totally GF for almost 3 years and if anything felt worse than before diagnosis. | cut out milk in my tea replacing it with almond or KoKo milk and I feel 100% better, I have more energy and although I am not as strict as i am with gluten it has made a huge difference. Hope you feel better soon

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Thank you. Will try it.:)

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Hi, no I haven't had my gallbladder removed. When I had really bad acid reflux last month and recently had bad indigestion type pain between my shoulder blades, someone I work with suggested it could be my gall bladder. Been gluten free for nearly 1 week and i haven't noticed the sholder blade pain the last 3 days just tired and a little dizzy, and stomach cramps. Is this me just adjusting to gf I wonder.

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Perhaps you are dairy intolerant. I get similar symptoms.

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GER and LPR diseases: If you have been put on PPI's for acid the you seriously need to address the acid problem. I have reflux too so would never consider a curry (you know it's high on the DON'T list, as are tomatoes etc). Egg does me - I'll have that bad egg reflux despite how fresh they are. So a seemingly innocent salad is sometimes so painful. If you are not coeliac then I wouldn't do a gf diet, some of the foods you are allowed are soothing, but not for me. I am a coeliac and being on a gf diet has not done anything to control the acid, I have to do other things.

Get some food lists from the internet and get it under control while you are young enough not to do any permanent damage.

PS There are other PPIs beside omniprazole.

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hey sunrise. here is my advise. FUCK ALL DOCTORS! THEY DONT CARE ABOUT YOU THEY JUST WANT YOUR $! its a sad but true fact nowadays (my friend is a physicians assis. and cant figure out how to cook a microwave meal! so just cause they say they are docs does mean ANYTHING) for me it took 3 colonoscopy & 3 endoscopes from numerous different gastros to tell me "it must be in your head" Believe me when I tell you the only thing in my head is that 99% of "doctors" are flat out quacks! after being told im medically fine here is what I dealt with for 15 years: horrible diahrea for 10 years then switching to constipation. I would go close to 30 days without going! I SHIT U NOT(-PARDON THE PUN) HORRIBLE HEART AND STOMACH BURN , MURDERUOS PERIOD CRAMPS, JOINT PAIN FIBROMYALGIA, NAUSEA, DERMATITIS SO BAD ON MY FACE I DIDNT LEAVE THE HOUSE FOR ALMOST A YEAR, OB SESSIVE COMPULSIVE DISORDER. CANKER SORES THE LIST GOES ON AND ON! what you need to remember is when you go gluten free YOU WILL GO THRU A DETOX THATS GONNA MAKE YOU FEEL HORRIBLE AND CAN LAST WEEKS TO MONTHS. and yes dairy adds to the problem. it makes me feel like im crippled! like walk with a cane crippled! ive been out of college for 15 years. when I graduated naturally I should've gotten a job, but I was so sick I could not work. the worst part was everyone telling me its just the stress of real life. well my arms are fully sleeved with tattoos and my back is all tattooed. I have had over 30 piercings ( 8 in my privates below the belt and pierced my own nips 3x WITH SAFETY PINS! i slept thru the tatoos and laughed when i got pierced. there was NO COMPARISON OF PAIN COMPARED WHAT I DEALT WITH ON A DAY TO DAY BASIS WITH MY CELIACS DIDEASE . here is another fact for you:GLUTEN IS POISON TO EVERYONE, NOT JUST CELIACS. IT DOES DAMAGE TO THE INTESTINES OF HEALTHY PEOPLE AND ANIMALS TOO. NO LIVING BEING IS GOING TO BENEFIT FROM EATING GLUTEN. SO IF YOU ARE A CELIAC YOU ARE REALLY FUCKED WHEN YOU EAT IT ( I EVEN GET SICK IF I USE THE WRONG MAKE UP, SHAMPOO SOAP, ETC. SO PLEASE DONT LISTEN TO THE DOCTORS. IVE NEVER MET ANYONE AS SICK AS I AM AND IVE NEVER HAD A POSITIVE CELIAC DIAGNOSIS!

p.s im not much of a reader but my mom gave me this awesome book called "JENNIFER'S WAY". and it was awesome. its written by Jennifer Esposito the actress from Summer of Sam' and "Crash"( she played Don Cheadle's girlfriend in the movie) She suffered a great deal also. (and remember not all gluten intolerant people get gastro symptoms. some only get brain issues like Autism & Schizophrenia and alztheimers). and you can be gluten intolerant without actually being celiac. all it takes is 1/8 teaspoon to cause a horrid reaction in a celiac! so when the doc tells u he cant find anything and u must simply have "irritable bowel syndrome" #1 get a new doctor #2 don't worry about what they say anyway, get off the gluten and dairy and i promise you will feel better soon. the faster you get off it the faster you will feel better, the detox will be the first sign you are doing the right thing. when i explain to people why they got sick in their 20 or 30's but were eating gluten all their life this is how i explain it: think of yourself as a dry sponge. if slow drips of water are added to the sponge it will slowly absorb the water without spilling. eventually there will come a point where the sponge can no longer hold any more water without spilling over. u are the sponge and your body is at the point where it will no longer accept the gluten without making you sick. and i know for a fact if you are feeling sick now and you don't immediately stop putting the gluten into your system you will get sicker and sicker than you could ever imagine! all body systems will fail and gluten will slowly and painfully break you down until your body gives up! please don't listen to the docs telling you they couldn't find anything. you are exhibiting the classic symptoms of gluten poisoning and you must must must stop eating it. REMEMBER WHAT I SAID BEFORE: GLUTEN HURTS ALL THINGS PEOPLE AND ANIMALS EVEN IF THEY ARE NOT CELIAC OR GLUTEN INTOLERENT! i could go on for months with facts about this so ill stop before i begin to ramble and overload you with too much. write me if you want more info. and if you get the skin rash associated with celiacs called dermatitis herpetiforis (DH) and/or suffer from bad adult acne ill give you the iodine information. but one step at a time so you don't make yourself crazy! (JUST IN CASE YOU DO SUFFER FROM DERMATITIS HERPETIFORIS WHICH IS AN ITCHY BURNY RASH THAT LOOKS LIKE PERSISTENT BUMPS OR CIRCLES ANYWHERE ON UR BODY YOU CAN GET A CELIAC DIAGNOSIS THAT WAY. IF THEY BIOPSY THE RASH AND IT COMES BACK POSITIVE FOR DERMATITIS HERPETIFORIS(DH) YOU AUTOMATICALLY HAVE A CELIAC DIAGNOSIS. NOT ALL CELIACS GET DH BUT ANYONE WITH DH AUTOMATICALLY HAS CELIACS! GOT IT? GOOD LUCK SUNRISE AND FOR THE LOVE OF GOD DONT LET THE DOCS TALK YOU INTO TAKING UR GALLBLADDER! I CANT TELL U HOW MANY CELIACS I KNOW THAT TRIED THAT FIRST, THE ANSWER TO GOOD HEALTH IS NOT REMOVING ORGANS, ITS THERE FOR A REASON. AND TAKING IT OUT WILL JUST MAKE THE PROBLEM MOVE TO A DIFFERENT ORGAN!

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Hi Spider! Thanks for your chatty and very human post. Very good read and you've actually cheered me up as I am having a bad day today! It'll be two weeks on tuesday that I have been gluten free and I don't feel better so was contemplating knocking it on the head. I woke up early hours of the morning with painful legs, my arms and legs often get a little numb at night and I just seem to ignore it. I got up this morning, had a walk about and drank 3 glasses of water to try and relieve it. Googled ibs and achy joints and shoulders and fibromyalgia came up!! I instantly felt depressed. Crash is a grear film, I'll look up her book. How long did it take for you to feel better? How are you now? How old are you? I definitely feel too young to be feeling like this, missed out on going out today as I felt too nauseous and achy. I take rhe contraceptive pill but mainly because it eases period pains. I do have a slighty spotty face which seems odd for a 33 year old. I went back to doc last week and she said your bloods are normal as was the endoscopy so you must have ibs and then gave me the website for MIND to seek councilling if I needed??? Left feeling more depressed and dis couraged. Thanks again for your reply!!! :-)

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i don't even bother with the medical field anymore. and ibs is not a disease! its a cop out gastros use to excuse their lack of knowledge and caring. Im not lying sunrise, i had 3 scopes and they found nothing. and im more fucked up than any celiac ive ever heard of. the sheer sound of the word "colyte" (that gallon of semen tasting shit thet tell u to drink the night before) makes me gag to this day! when I went to the Specialty celiac "doctor in NYC years ago I was so insulted at their lack of compassion. I even asked the doctor when I was in the room if she actually had these problems in her life. when she answered "no" I got off the table and left. and if I am "crazy' by socieety's standard its because of all the medical assholes that claim to help people! Hippocratic oath? more like hippocrit oath! and to answer your question im 35(turning 36 this summer). i had a roommate back in the day with chrons disease AND A COLOStOMY BAG. he was only 25 too and my illness put his to shame! we had a tally who would use the bathroom more for shitting and i won every week. and he head a fucking colostomy bag... I consider myself a celiac snot because im so allergic to things even all celiacs can eat that I only eat chicken eggs rice and orange juice.( i probably should not eat eggs but that's like the last resort) and i drink coffee with almond milk. i cant even eat fruits and veggies cause the fiber does the opposite and stops me from pooping! 80% of the time I feel good but I sleep all the time still. I didn't want to write this in my last post but all thru my 20's I was a go go dancer cause I could not hold a regular job cause of my health.i basically threw away a college education because of this disease! I had to make as much money as possible in as little time as possible. but then I was struck with this dermatitis shit -and of all places on my face. im not a religious person but I really feel I was being punished for all the very very very bad things I was doing. to make a long story short because of all my problems I eventually could not even get out of bed or leave the house.my periods were so bad I had to schedule a 'a babysitter' every month . (I can only describe it like the scene from "resovior dogs ' when tim roth gets shot in the stomach and is dying in the back seat of the car) as I desciibed in my last entry :I know pain. and these periods were like nothing anyone had ever seen. I've screamed so much my neighbors in 2 different houses called the cops in fear of me being beaten! that's when I started using heroin cause the pills the docs were giving me were destroying my stomach. (I did not know I had celiacs yet so this just made the health issues magnified by 1000x. oh god the migraines! i forgot to put in the migraines i would suffer fro., i cant count how many days i've lost to debilitating migraines! by this time I was a full on heroin addict cause that was the only thing that stopped my pain and constant shitting. I was under 100 lbs very sick and my parents had disowned me for being a piece of shit and of course 'making up all my health problems' and "taking the easy way out" . I could not even stomach an aspirin, I was allergic to everthing that went thru my stomach. death was looking pretty good to me. after years of running around the streets of Newark and doin drugs instead of eating I finally decided to go on methadone. so other that the chicken and oj -methadone is the only other thing I ingest( I have no choice at this point) ive been clean for 7 years and concentrate on my health all day. I work one day a week cleaning someones house because my health is still so unpredictable I cant hold a job. the funny thing is that compared to the past this IS actually under control according to my standards. I even have my own sterile kitchen and I still to this day get unexplained 'poisinings' I don't mean to ramble but I get over excited trying to get my point across. to sum it up : being celiac is a lifelong trial. you will feel like shit often and after you get things under control you will mess up. im married (my 2nd hubby) and I cant kiss his without him SCRUBBING his mouth. and he has to use the same soap when we do it cause ill get sick. recently the powder I use was diccontinued, I did my research aand bought the next best thing that I thought was ok. within a few days all my symptoms came back. skin rash. zits, shoulder PAIN, cancker sores, migraines and constipation . im not fucking eating it! im putting it on my face and i get that sick! I even start feeling brain things like checking door knobs and stoves repeatedly! I swear, its fucking insane how I can recognize a "poisoning" now, ive been gluten free since like 26 or 27 and I still fuck up. but the good thing is it gets better in a few days (after realizing the culprit). if you are just beginning there really is no handbook im still learning shit like serotonin is made in the gut so when you have celiac you will suffer from sleep disorders and depression. (of course who would be depressed about not being able to function like a normal human) i have 2 pugs and a maine coon cat. 1 pug had early stages of kidney failure ant the other had bladder stones. 1 pug and my cat had arthritis and cataracts. well after switching them to all gluten free dog/cat food ALL OF THOSE ISSUES HAVE CLEARED UP AND GONE INTO FULL REMISSION! gluten kills. in the body when it breaks down the protein makes an alcocol -like by product and how does alcohol get u drunk? it poisons ur blood. think of how you felt after a night of hard drinking. That's how we feel every day, but much worse. if you look back at your family members as you learn more about this disease and how it affects the brain, skin, thyroid, hormones, bones, ets.. you will see how there have been signs all along. i swear every lady in my family has had a gall bladder removal, a hysterectomy, or thyroid problem ( you ever hear a big lady say "i have a sluggish thyroid, i cant lose weight". yeah that's my family. overweight bloated barren and blaming the thyroid imbalance!) im now between 125 and 1301bs and look awesome. back in the day i looked like bones with droopy boobs! i cant even believe i made money dancing. i look great now ( when i don't screw up and get a rash on my face) . but please don't give up. remember that EVERYONE IS CURSED WITH SOMETHING! you are actually lucky because if you follow the rules u WILL bypass the problems that would have been awaiting you later in life if you continued to eat gluten. if i never diagnosed myself ( I HAVE NEVER HAD A POSITIVE DIAGNOSIS AND IM THE FUCKING POSTER CHI;D FOR THE DISEASE) I would be ugly covered with spots like a lepper, crippled and dying! if you don't stop eating gluten your future will consist of rhumhatiod arthritis, a poop bag, walking with a cane, infertility, and probably thyroid cancer. so consider it a blessing and a clue as to how to live your life. when you are feeling unlucky remember that going gf will allow you to bypass most (if not all) the chronic health problems that await you in the future...hang in there cause it can take up to a YEAR! yes that's right a year for you to feel 100%. i mean you will get better and better but there will be setbacks and it takes time. my whole life changed trying to figure this thing out. i was a raging partying "club kid" going to the city every Thursday Friday and Saturday. staying up partying with beautiful people all the time to being a crippled hermit that didn't recognize myself in the mirror. this disease if left untreated will steal your life. every celiac is different whats good for me may be bad for you but the 3 main things to stay away from are gluten dairy and to a lesser extent, soy. you should read that book. i never thought anyone suffered as bad as me with this. but this girl did. oh she lots lots of her hair and some of her teeth fell out too. they just fell out on set with no warning! i forgot to mention that befrore: celiacs disease can cause allopecia and tooth/bone loss too! fun fun fun! everyone is affected in different but similar ways but we all suffer. . . . . i hope i didn't scare you. im just trying to tie together all the symptoms to make you see how your life may mimic mine or other celiacs. i wish i had someone to point out all the things i was going thru were related, .and to tell me they were all stemming from the same problem---GLUTEN. in between dancing gigs in my 20's fresh into my diagnosis i worked in this awesome health food store.(part time of course cause i was always sick! ) i met a ton of digestionally challenged people and also the head of the celiacs association Deanne something, i learned a lot and realized how many people would be better off without gluten. like more than half the world. im not even kidding. ok no more rambling for me. my brain hurts, good luck to you sunrise. hang in there. and that saying is true : what don't kill us makes us stronger!

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i forgot to tell you about METEGENICS. if your heartburn is really bad and you cant live with it look into a product called GLUTAGENICS by the company METAGENICS. it saved my life years ago and calmed my stomach enough for me to eat. it used to be by prescription (even though its a vitamin supplement) but maybe you can just order it now, its a powder combination of glutamine , De glyccerized licorice, and aloe. its a godsend and lifefesaving stomach healer for people like us. i got it prescribed thru a nutritionist but maybe its available thru your doc or simply just order it, i promise it will work for you. i used it 3x a day for like a year and i completely healed. i used to sleep sitting up (if i could sleep at all) cause the acid was so bad. and in the morning i would dry heave this gasoline like smell. sometimes i would even puke up undigested meals from the day befoer that sat churning in my gut for hours and i guess just sat there instead of going thru my intestines. you can also buy (at a health food store) de-glyccerized licorice tablets by themselves. that will also help heartburn. if you are confused about it ill hook you up with the name of the store i worked at. the owner is brilliant and will send shit to your house if you don't know what to get. especially if you're a chick. ha ha. he loves to help the ladies.

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Hi Spider!!! Wow what a life story for someone so young! You should write a book! My problems seem extremely mild compared to yours. Well done for getting off heroin!!! And staying clean!!!!!! It annoys me that I haven't had a diagnoses cos people question why I am on a gluten free diet. I actually live in the uk and I don't believe people are as aware of gluten damage over here.. just hoping I will keep making improvements being gf. There is no shame in doing whatever you have to do to make money and I believe you life experiences give you more substance. I hope you have rebuilt a relationship with your parents. I hope each day continues to be an improvement for you. Thank you for sharing your story ;-)

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Oh and I have ordered thae book you recommend

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I didn't mean to go off on such a personal tangent there! the point I wanted to make was the way gluten (and DAIRY) can ruin your quality of life, no matter how small or severe the discomfort and pain may be. staying on the gf plan will definitely improve your life! it will make you better even in ways you may not have associated with the disease yet. I can bet my life on it. (I actually got sick this week from drinking pure not from concentrate orange juice! but I felt better in like 2 days) so #1 don't worry about the diagnosis cause the proof is in the pudding! and #2 do the best u can with it . it gets much easier to get the hang of it as you get used to the rules and regs! also a good rule of thumb is buying foods on the outer rim of the supermarket(fruits and veggies meats ckicken and fish) dont overload on too much corn and potato and soy cause they are the main substitutes for gluten. rice is the best. nuts are good too especially in paste or liquid. (when you have bad indigestion whole seeds and nuts can be harder to digest and may churn up more stomach acid.) if you have mild heaartburn do urself a favor and skip the nexium/prevacid cause they will constipate you. get chewable DE-GLYCERRIZED LICORICE from a health food store instead. I can guarantee you relief. what doctor ever said that, huh? and the last thing I can say is: because gluten damages the intestines all kinds of things can leak out into your bloodsteam (aka leaky gut syndrome). all this means is that sometimes we eat things that we 'should' be able to tolerate but they bother us anyway. (like this week when the oj hurt me) you will experience these very small setbacks but they are only speedbumps compared to the damage gluten will do. you will not learn your roadmap to this disease overnight. it will take you a long time to figure out what your personal combination of foods are good for your body. celiacs are kinda like snowflakes. no two celiacs will have all of the same symptoms and no two celiacs will have all the same foods in common. the basic underlying rules to be followed of no gluten and no dairy are there but the other stuff may vary! good luck sunrise! if you have any questions or need any help id be happy to assist in any way I can. (and I wanted to tell you-- over a year after my father disowned me we started minimal contact. then he passed away at 56 from a sudden mysterious kidney related complication. his whole body starting with his blood and pancreas shut down on him. the docs related it to" lupus like complications" with no other explanation. to this day we don know what happened to him. then like a year later my rheumatologist diagnosid me with lupus! I don't have lupus but I probably would if I continued to eat gluten. now my mother has digestive and skin problems of her own and was recently diagnosed with graves disease. that is a thyroid disorder that is directly related to celiacs! she is now VERY VERY VERY nice to me and feels REALLY bad for not believing me all those years)

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