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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Medic-Alert Bracelet
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53 posts in this topic

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notme!    287

once again, i am considering getting one.  my husband thinks i should, because of all the fad dieters and he is worried someone won't take my health issue seriously.  my son is t1 diabetic and is telling me not to be a hypocrite <because i wanted HIM to have one - lolz - he got a giant tattoo on his chest of the medic-alert symbol)  has anyone gotten one?  i am *constantly* explaining that i am not dieting to 'cleanse' or lose weight :huh:  or any other reason.  maybe it would be easier to just point to the bracelet....?  i dunno.  i'm in this for the long haul, might as well own it.  it would shut up some people (that might be worth it right there)  <_<   what do y'all think?

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cyclinglady    725

I don't have a medical bracelet, but I run/cycle wearing a Road ID.  There's room for a medical statement besides the typical phone numbers. 

 

I'd get the bracelet to support your son! 

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cahill    189

I have a medical alert bracelet for my diabetes.  My cell phone (which I am almost  ashamed to say ) is most always with me has my emergency contact information in it.
I live in a very small town and the local hosp has my information ( celiac, hashimotos ,diabetes ect...) on file ( numerous  ER visits will do that lol) as does my local pharmacy.

I  do like the road ID idea 

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notme!    287

road ID?  do tell!  is it a bracelet or card?  i used to print tiny cards to fit into my kids' shoes with all their contact info, etc. when they were little - something like that?   i'm not much of a runner unless someone is chasing me  ;)

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Adalaide    361

I've considered one but because of my ever changing health issues and the number of problems, I've considered one of those digital ones. I've also considered just getting a med-alert bracelet tattoo because I hate hate hate jewelry. My husband is positively horrified by this idea, even though celiac is, without a doubt, for life. I know they have those med-alert phone apps, but my phone just doesn't have room on it for that. (I may have deleted it to get a coupon app. :ph34r: A girl has to have priorities!)

 

At any rate, I think they are a generally good idea and think I should have one. I just haven't gotten around to deciding on what route to go. At the rate I'm going I'll be 50 before I get one. :lol:

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w8in4dave    75

My problem with a bracelet is it would have to be 14K! Maby white gold :D ,  I am allergic to silver aka nickel cheap jewelry. even hypo allergenic jewelry. but really if you feel you need one. Then by all means get one!!

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StephanieL    74

I think unless your Celiac incapacitates you and you would be unable to offer up medical information, it is overkill. Medic alert isn't a "prove it" metal. It's to alert people to a medical condition.  A T1 diabetic can go into shock and not be able to pass on info. A person with an allergy, same thing.  Those are conditions that warrant people knowing what's up if they are found passed out in the hall/street.

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cyclinglady    725

road ID?  do tell!  is it a bracelet or card?  i used to print tiny cards to fit into my kids' shoes with all their contact info, etc. when they were little - something like that?   i'm not much of a runner unless someone is chasing me   ;)

Check out roadid.com.  I'm not trying to promote this company, but there are lots of nice bracelets, shoe tags, etc. for athletes.  Who wants to run with your wallet or even your cell?  Plus, I had a friend who crashed on his bike.  We were able to contact his wife ASAP while calling 911.  Moms in my MOMS Club wear their Road ID while at the park with the kids.  It's terrific.

 

I even have one for my daughter when she goes camping with the Girl Scouts.

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I think unless your Celiac incapacitates you and you would be unable to offer up medical information, it is overkill. Medic alert isn't a "prove it" metal. It's to alert people to a medical condition.  A T1 diabetic can go into shock and not be able to pass on info. A person with an allergy, same thing.  Those are conditions that warrant people knowing what's up if they are found passed out in the hall/street.

Being unconscious from any of many reasons could bring one to a Hospital without your records.    In my case, Iodine could also set off my DH.     I wouldn't want to come to with a cast or bandaged area itching.    

 

I gave thought to the Tattoo, but I can't get a clear answer if the ink is Gluten & Iodine Free.     

 

On another note,  I was doing some construction at a Jewish Nursing Home and my Tool Buddy was told to cover his Tattoos or leave.      Just seemed so wrong to me, since they were of a harmless nature to any group.

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Gemini    785

Being unconscious from any of many reasons could bring one to a Hospital without your records.    In my case, Iodine could also set off my DH.     I wouldn't want to come to with a cast or bandaged area itching.    

 

I gave thought to the Tattoo, but I can't get a clear answer if the ink is Gluten & Iodine Free.     

 

On another note,  I was doing some construction at a Jewish Nursing Home and my Tool Buddy was told to cover his Tattoos or leave.      Just seemed so wrong to me, since they were of a harmless nature to any group.

About the tattoo thing.....this is something I will never understand with people.  I would NEVER get a tattoo but have no issue if someone does. Everyone has the right to do what they want with their body but I must tell you, tattoo's are not professional at all.  If you have a great job and want to look professional and have a tattoo that might show, I would agree to cover it up. You don't see judges or doctors or engineers sporting a tattoo on the job and this might just be that this mindset seems anal retentive to the tattoo crowd, but it isn't.  You are not going to be taken seriously in many jobs if you walk around with a tattoo hanging out.  Some employers will not mind but many would.  People have gotten this attitude lately that they can do whatever they want with no consequences but real life is not like that and once you do something like this, there's no turning back.  My nephew has a good job, I love him dearly but he is a walking tattoo on his chest and arms.  I think it looks horrible but he covers them up for his job....he gets it. I have never told him I hate tattoo's because I love him too much.

 

The other issue is that, and this is delicate, is that it was a Jewish Nursing Home.  Jews were tattooed during the war by the Nazi scum and they may take offense at seeing them on someone who does this by choice.  People in nursing homes today might be old enough to have lived through the war.  That is huge. I have many Jewish friends and they would never, ever think of getting a tattoo.  They feel it defiles the body.  That thought may not be prevalent amoung all Jews but for many, it is.

 

I agree with Stephanie regarding an ID bracelet. Being unconscious, as a Celiac, would not cause a problem.  Remember, the government, if you in the US, has now gone and forced doctors to do medical records electronically.  Anyone in the medical field, giving treatment to a patient, has access to your medical records.   As long as your problem with iodine is in there, they will know.  If you are unconscious, they will not be giving you anything by mouth to cause a reaction and an IV poses no threat.

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notme!    287

I think unless your Celiac incapacitates you and you would be unable to offer up medical information, it is overkill. Medic alert isn't a "prove it" metal. It's to alert people to a medical condition.  A T1 diabetic can go into shock and not be able to pass on info. A person with an allergy, same thing.  Those are conditions that warrant people knowing what's up if they are found passed out in the hall/street.

right - and that was my point of view, too - if i'm passed out, probably the least of my worries is someone trying to feed me cake.  husband and son (ok my daughters too) was that everybody's on the gluten-free diet, many not for medical reasons.  i have been more adventurous lately with trying to eat out safely but it seems people offering gluten-free options on the menu are still unconcerned with cc UNLESS i stress (sometimes over and over) that i can't have ANY gluten.  not even touching it, blah blah blah.  plus, nobody remembers i can't eat (whatever - and these are people i have known for years) so maybe a visual reminder would save me some hours of repeating myself.  repeating myself.  repeating myself.  i can just point to the bracelet........... 

 

and, also right - any yahoo can purchase one to have it say anything i suppose.  maybe i will get it to say 'homocidal maniac' as well as 'celiac' just to see if anybody notices lolz (as she wakes up in the mental ward..................... ok.  maybe not. )   :huh:  

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notme!    287

gem - i am tatt-free as well - i tell the tatters:  i'm a rebel ;)  who *doesn't* get a tatt?  this girl, that's who.  my two oldest daughters are lousy with them - i was so pissed :(  but it's not worth it.  they do what they do.  i just hope st. peter recognizes them  :blink:

 

the oldest is a crew chief on an f-22 in the usaf, and she has to have hers done where her uniform will cover them..........  so, no tatts on her face LOLZ  just kidding!  :D

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cyclinglady    725

About the tattoo thing.....this is something I will never understand with people.  I would NEVER get a tattoo but have no issue if someone does. Everyone has the right to do what they want with their body but I must tell you, tattoo's are not professional at all.  If you have a great job and want to look professional and have a tattoo that might show, I would agree to cover it up. You don't see judges or doctors or engineers sporting a tattoo on the job and this might just be that this mindset seems anal retentive to the tattoo crowd, but it isn't.  You are not going to be taken seriously in many jobs if you walk around with a tattoo hanging out.  Some employers will not mind but many would.  People have gotten this attitude lately that they can do whatever they want with no consequences but real life is not like that and once you do something like this, there's no turning back.  My nephew has a good job, I love him dearly but he is a walking tattoo on his chest and arms.  I think it looks horrible but he covers them up for his job....he gets it. I have never told him I hate tattoo's because I love him too much.

 

The other issue is that, and this is delicate, is that it was a Jewish Nursing Home.  Jews were tattooed during the war by the Nazi scum and they may take offense at seeing them on someone who does this by choice.  People in nursing homes today might be old enough to have lived through the war.  That is huge. I have many Jewish friends and they would never, ever think of getting a tattoo.  They feel it defiles the body.  That thought may not be prevalent amoung all Jews but for many, it is.

 

I agree with Stephanie regarding an ID bracelet. Being unconscious, as a Celiac, would not cause a problem.  Remember, the government, if you in the US, has now gone and forced doctors to do medical records electronically.  Anyone in the medical field, giving treatment to a patient, has access to your medical records.   As long as your problem with iodine is in there, they will know.  If you are unconscious, they will not be giving you anything by mouth to cause a reaction and an IV poses no threat.

I'd have to disagree about the electronic records.  I was just hospitalized and even though my doctors are affiliated with the hospital and are right across the street, the hospital did not have access to my medical records.   I've also been hospitalized outside of my state and they didn't have access to my records.  Plus, when I did tell them my allergies, they proceeded to give me the things that could kill me!  Luckily, I was able to question them and stop them!  Nurses and doctors make mistakes on charts all the time. 

 

Don't go into the hospital without a cell phone, laptop/smart phone, etc!  Question every procedure and weight out the risks and benefits of the drugs/procedures they give you.

 

Granted, a medical bracelet is not necessary for celiac disease, but I think NotMe was also just trying to support her son who has type 1 Diabetes.  If it makes you feel better (even if it's just a placebo), go for it! 

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StephanieL    74

nobody remembers i can't eat (whatever - and these are people i have known for years) so maybe a visual reminder would save me some hours of repeating myself.  repeating myself.  repeating myself.  i can just point to the bracelet........... 

 

 

I think you would be better off getting Diners cards made up for that. Pointing to a bracelet at a restaurant isn't going to explain anything  to them. Telling them over and over and stressing the x-con thing is required.   

 

My child does have a medic alert. NO ONE at a restaurant has ever taken notice of it. Never asked about it. Never said a word.  It is ME telling them over and over what the issue is that makes him safe. 

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notme!    287

 

Granted, a medical bracelet is not necessary for celiac disease, but I think NotMe was also just trying to support her son who has type 1 Diabetes.  If it makes you feel better (even if it's just a placebo), go for it! 

i sure think it would make everybody shut up lolz  :D  "oh, *I* have to get a medic-alert but *you* don't, hmmmmm?  mother?"   <_<

 

 

 

My child does have a medic alert. NO ONE at a restaurant has ever taken notice of it. Never asked about it. Never said a word.  It is ME telling them over and over what the issue is that makes him safe. 

that is disappointing :(  especially with a kid, you would expect people to pay extra attention.

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Gemini    785

I'd have to disagree about the electronic records.  I was just hospitalized and even though my doctors are affiliated with the hospital and are right across the street, the hospital did not have access to my medical records.   I've also been hospitalized outside of my state and they didn't have access to my records.  Plus, when I did tell them my allergies, they proceeded to give me the things that could kill me!  Luckily, I was able to question them and stop them!  Nurses and doctors make mistakes on charts all the time. 

 

The electronic medical records will be accessable to all medical personel in hospitals and offices very soon.  That was one of the major points of Obamacare.  I don't agree with it but that is what will be implemented very soon. The fact that you just had that experience doesn't mean much as it hasn't been put into action 100% but trust me, it will.  This is why you have to be very careful what you tell a doctor these days.  If you don't want others to see it besides the person you are confiding in, then you might be better off keeping quiet or requesting that it not be put on an electronic record.  I was asked some very personal questions recently by a medical person and was told by the office that it was required information due to the new medical law.  I refused to answer the questions as I don't care what the government thinks they need to have. My sister works in a large Boston hospital and she agreed that the new way of doing things was true.  Your records won't be as private as you think.

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Adalaide    361

With the tat thing, I do think that there are several relevant points about that. One is where you live, and that seems to matter a lot. Where I grew up in PA it seems everyone has one and no one cares no matter the type of job you are doing, professional or not. Where I live in Utah now, a fair number of people have them but they are not so commonly accepted which I believe is probably for two reasons. There is a strong Mormon population here and there is also a focus on professional work rather than the manufacturing that is where I grew up. Here I would be expected to cover a tat up, and I know that and accept it. I think the reason my husband is also resistant to it is because we are Mormon, although he grew up that way and I didn't which is why my attitude is more meh... it isn't a big deal, it is for a real medical reason and whatever dude. And his attitude is zomg you'd be defiling your body! :rolleyes: I think the point about it the worker and the Jewish nursing home was also a good one. Everything is about context.

 

As a general rule, we like to think our medical records are all digitized now. And sure, I can walk into the records office of any of the affiliated hospitals around here and get all of my records from every hospital and doctor's office but... Hah, you knew there was a but right? I still have to explain to every person every time I get to the hospital, a new doctor's office, ER, even if it is the same ER I've been to a few dozen times, what my allergies are. These include penicillin and latex so you would think that they are glaringly obvious and all over my digital chart in some sort of way that can't be missed right? Nope. Going for a blood draw? The first words out of my mouth have to be that I have a latex allergy. They don't check, and they don't ask. Our digital medical records are useless to us as protection when it comes to our allergies or even celiac. Mine also state with my celiac, because I made them put it in the allergy section that I absolutely can not be given oral medication under any circumstances. I doubt they'll pay attention to that when they decide they want to try to force something on me.

 

If you think your son will feel better if you have a bracelet, go for it. Especially if he hounds you about it.

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We have medic alert bracelets for our kds, my eldest is allergic to 2 types of antibiotic so we have added severely gluten intolerant on it too. . Our issue is that gluten exposure even a trace amount cause horrific diahrrea leading o dehydration and impacted bowels very quickly. They have become much more sensitive. We live in an earthquake prone area, our min concern s being separated from them and someone giving them gluten. A kd having diahrrea is not going to be of immediate concern in a disaster, but unfortunately for my kids rations from red cross food parcels could make them horrifically ill. We actually ave a large supply of gluten free dry goods at home in case of an earthquake as anything Ivan out by the authorities will nt ve gluten free.

One thing to consider is if ou are incapacitated enought hat someone needs to read your medic alert bracelet, I dont think there is much Vance of them feeding you gluten! If even a trace exposure causes immediate and possibly severe medical complications I'd get one for example if it cause bleeding etc

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Adalaide    361

The electronic medical records will be accessable to all medical personel in hospitals and offices very soon.  That was one of the major points of Obamacare.  I don't agree with it but that is what will be implemented very soon. The fact that you just had that experience doesn't mean much as it hasn't been put into action 100% but trust me, it will.  This is why you have to be very careful what you tell a doctor these days.  If you don't want others to see it besides the person you are confiding in, then you might be better off keeping quiet or requesting that it not be put on an electronic record.  I was asked some very personal questions recently by a medical person and was told by the office that it was required information due to the new medical law.  I refused to answer the questions as I don't care what the government thinks they need to have. My sister works in a large Boston hospital and she agreed that the new way of doing things was true.  Your records won't be as private as you think.

 

As I was pointing out with the digital records, there is a huge difference between them existing, and them being used. My records exist digitally throughout our large HMO type hospital system here, and yet no one ever seems to know about my latex allergy. When I mention it they're like "oh yeah, there it is... I see it now on your chart." WHAT THE HELL?!?! Shouldn't things like that pop the hell up glaringly obvious?

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I lived in the middle east where we have digital records, done properly they work, but if anything changes unless you make sure they change it there can be glaring holes.

Even here in Vancouver, I went to the hospital they hd the qigong doctor as my family doctor, the hospitals and family practices keep seperate records as the health care system is split up into 3 departments neither deal with each other except through managers. The health system was one system a few years ago no things were better, but health records are one health authority now, and admissions and doctors are another. My husband works in admissions, and in his area there is the switch board for the whole hospital, if the phone operator is in the washroom for example he isn't allowed to answer the phone as it is working for another department without permission even if that call could be about a disaster that has just happened.

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bartfull    565

I have told all of my friends that if I get into an accident or have a heart attack or anything, just let me lie there and die. :lol:

 

Actually, I am only half joking. The "hospital" in this town is more of a clearing house. They "stablize" you and then send you to Rapid City. The hospital in Rapid City was just rated one of the very WORST hospitals in the country. I'd rather bleed to death here than go up there and have them torture me before they kill me. I figure if I stay here and lie very still, maybe I'll have a chance to recover. If I go up there it's all over.

 

Oh yeah, did I mention I love it here? There truly is nothing good to eat here, and the so-called medical care is downright dangerous, but the scenery is breathtaking, the people are wonderful, the micro-climate gives us some of the best weather in the country, the music scene is hopping, cost of living is low, and I never want to leave. Priorities you know.

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notme!    287

I have told all of my friends that if I get into an accident or have a heart attack or anything, just let me lie there and die. :lol:

 

Actually, I am only half joking. The "hospital" in this town is more of a clearing house. They "stablize" you and then send you to Rapid City. The hospital in Rapid City was just rated one of the very WORST hospitals in the country. I'd rather bleed to death here than go up there and have them torture me before they kill me. I figure if I stay here and lie very still, maybe I'll have a chance to recover. If I go up there it's all over.

 

Oh yeah, did I mention I love it here? There truly is nothing good to eat here, and the so-called medical care is downright dangerous, but the scenery is breathtaking, the people are wonderful, the micro-climate gives us some of the best weather in the country, the music scene is hopping, cost of living is low, and I never want to leave. Priorities you know.

:D  LOLZ!!  sounds like 'here' - they just moved from the old hospital in town (i mean OLD) where we live is 2 blocks from it and we used to hear the med-evac helicopter coming in and yell at it 'lie down!!  you're dead!!'  :P

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Gemini    785

As I was pointing out with the digital records, there is a huge difference between them existing, and them being used. My records exist digitally throughout our large HMO type hospital system here, and yet no one ever seems to know about my latex allergy. When I mention it they're like "oh yeah, there it is... I see it now on your chart." WHAT THE HELL?!?! Shouldn't things like that pop the hell up glaringly obvious?

I think the issue would revolve around being in an emergency situation and taken to the hospital.  That's where the need to access your medical records would be used.  Everything is going to be centralized so access would supposedly be quick and they could get the information needed. I am assuming that most people with severe allergies and intolerances would make sure that information is in there and it would be, if you visit a doctor for these issues.  Ditto for any meds you would be taking.  But those with severe anaplylactic problems would need a Medi-Alert bracelet and so do diabetics.

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Gemini    785

gem - i am tatt-free as well - i tell the tatters:  i'm a rebel ;)  who *doesn't* get a tatt?  this girl, that's who.  my two oldest daughters are lousy with them - i was so pissed :(  but it's not worth it.  they do what they do.  i just hope st. peter recognizes them  :blink:

 

the oldest is a crew chief on an f-22 in the usaf, and she has to have hers done where her uniform will cover them..........  so, no tatts on her face LOLZ  just kidding!   :D

Your sense of humor is as intact as ever!   :lol:

 

If your husband really thinks you need one, there must be a nice Medi-Alert bracelet out there with some diamonds for bling.  Now THAT would be worth wearing!   ;)

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We got bracelets from Idonme, they do medic alert and basic I'd, they are waterproof etc, adjustable, and they have paper inside so if details change you don't need a new bracelet.

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    • If she is now at a public school, accommodations can be made for disabilities.  Here is a link that explains a 504 plan and an IEP, but you will have to investigate based on your state.   https://www.foodallergy.org/education-awareness/advocacy-resources/section-504-and-written-management-plans https://www.understood.org/en/school-learning/special-services/504-plan/the-difference-between-ieps-and-504-plans http://kidshealth.org/en/parents/504-plans.html https://www2.ed.gov/about/offices/list/ocr/504faq.html i am not very knowledgeable about this subject, so I encourage you to contact your school district for help.  Your doctor might be a good resource too.   You might consider homeschooling until she has been diagnosed and has received treatment.  The Department of Education can direct you to homeschooling resources.  There are lots of wonderful programs out there and you can get financial support.   I wish you all well!  
    • You make a good point about being neurotic. I'm slowly getting better. I guess time will tell. But thank you for the insight.   As far as roommates go, that's a good idea. I've definitely been thinking about that. But these guys are my best friends and the process of getting a new roommate this late in my schooling might be hard. Although, I will keep my eye out for the opportunity. 
    • Hello I understand what you are going thru. My son almost died from going 27 years without figuring out it was gluten and then corn causing all the illness. I brought him to Drs, none of them figured out gluten intolerance. Oh they told us he had everything else. Then as time went on, he found out he has issues with corn. Corn has identical genetic make-up as gluten.  Corn is sneaky and everywhere. Contact the manufactures, ask them if there is a chance of contamination or corn ingredient in their products. My son gets neurological problems when gluten/cornized. Anxiety, obsessive thoughts, can not think. He had to be taken out of school and homeschooled. He just found out the digestive enzymes he was taking contain an enzyme that is grown on barley. Enzymedic basic.  My suggestions for you are, seriously go find another place to live. You need your mind and health to continue school. If you don't and continue living where you are, school will suffer. In your spare time, find out all you can about gluten and what other foods act like gluten in the body. Like I said, corn has the same genetic make up as gluten, some people can not eat rice either. This is something that is doable, it is just becoming very aware of what goes in the mouth. Please find another place to live. You don't need to deal with those jerks, you have enough going on with school and health. There might be other people in your school that are celiac or gluten sensitive. Find them, post notes up, start a newsletter about gluten free lifestyle. I bet there are many people that would welcome that newsletter.  You don't need to do this alone!   You are the most important person in your life, you deserve to feel good and be respected! Stay away from those that don't respect you. Search out those that will.  Eating out is something that can be done, find those places that will work with you. Ask to have burgers or meat cooked on aluminum foil. Fresh veggies, fruits all gluten free. Again, research restaurants in your area willing to work with you. Even call the manager and talk to them. All the best to you!  Hang in there.   
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