Does Anyone Else Feel This Way?

[Amyleigh0007]

I feel like since I am self diagnosed with gluten intolerance that I have no right to tell others they must change their ways to accommodate me. If I had an "official" diagnosis I would have been upfront with my dentist and told him I need gluten free materials. I have not eaten out since I started eating gluten free for fear of sounding "nutty" or "difficult" when I order food. I feel like I need some sort of proof on paper that I have gluten intolerance and then I will gain the confidence I need to keep myself healthy outside my home. Is a positive response to eating gluten free proof enough? Does anyone else with self diagnosed gluten intolerance/Celiac feel this way or am I just weird.

[ShayFL]

I am the best doctor I have. I have no problem discussing my issue with others. I know it affects me. The diet is proof enough for me. If you have a cold, do you feel weird telling others you are sick? Do you need a doctor to dx the cold? No? You know your body better than anyone else.

[Ursa Major]

Amy, I am self-diagnosed. I know gluten makes me ill. I have NO intentions of getting terrible D, having anger problems, gas, bloating and painful joints because of being afraid to tell people I can't have gluten!

If you would get a terrible, life threatening reaction to a food (even if your doctor wouldn't agree), would you risk it, just so you wouldn't offend people?

You have every right to tell people (including people in restaurants) that you are gluten intolerant, and that gluten makes you ill. If they don't believe you it is their problem.

I told my dentist I am gluten intolerant. I also request unflavoured toothpolish when I have my cleaning, because I am intolerant to salicylates (also self-diagnosed). They are happy to accommodate me, because they don't want to be responsible for me getting sick.

You need to be saying it in a confident tone of voice. Are you sure you get sick from gluten? If you are, sound sure and confident when stating that you are gluten intolerant when needed, and stick with it.

So what if people will think you are nutty or difficult! That is their problem. But you will find that most people will believe you, and will do their utmost to keep you safe. And the few who won't will then have to do without your company until they change their arrogant stance.

[Beth in NC]

Amy,

If it makes you feel any better, some people think we're nutty even WITH a diagnosis! I don't say that to discourage you but to just let you know that many times it is pure ignorance that you are dealing with.

I know people with allergies to chocolate or other things and they KNOW they are allergic without having a blood test to verify it. You know your body. No one in their right mind would put themselves on a gluten-free diet for the fun of it, ya know?

[Nancym]

You don't have to explain your diagnosis to anyone. Just say what you need and get on with it. The people around you will be grateful most likely, not to have to listen to the diagnostic process. I have dining cards that say, "I am a celiac" which can be handed to the waiter, who takes it to the chef, to help them cook for me. The circumstances of my diagnosis are no one's business but my own.

You will run into skepticism regardless of whether you have an "official diagnosis" or not. Besides, it isn't like your doctor hands you a diploma or license plate or something you can carry around and display your status. You're still going to have to communicate your issue with gluten in exactly the same way as if you were self-diagnosed.

[Phyllis28]

I have never had anyone ask for documentation to support my gluten free diet. I simply state that Wheat, Oats, Rye and Barely will make me very ill. I was diagnosed by a doctor based on my symptoms and an upper GI 30 years ago, so IMO dietary response is proof enough.

[GlutenGalAZ]

I am self-diagnosed. After sooo many years of feeling sick and always wondering if I go somewhere were the closest bathroom would be and what can I eat and then leave without it bothering me. I always knew something was up with stuff I ate but never knew what it was so I just caught on to things that I didn't feel sick eating. Dr's never figured out what the problem was either.

Anyways back to the point... People close to me know what I have been through over the years with how I feel etc so they are very supportive with my gluten free eating. My in laws have seen how things have changed I don't think they like that I don't like eating out anymore (I don't miss it) but I tell them that my husband can still go if he wants. No one has ever asked me if a dr diagnosed me. I would never eat gluten again in order to test for it.

Over time I think you will feel more comfortable with not having a paper stating you are gluten intolerant.

You can always call the restaurant you are wanting to go to and talk to a manager on the phone. I did this with a Chilis in town and the manager was very nice - haven't gone yet but that is at least a step for me. I too have never eaten out since going gluten free b/c I am nervouse about getting glutened and not asking stuff right.

Good Luck with everything...

[LuvMoosic4life]

I know people with allergies to chocolate or other things and they KNOW they are allergic without having a blood test to verify it. You know your body. No one in their right mind would put themselves on a gluten-free diet for the fun of it, ya know?

this is a very good point!

BTW I feel exactly the way you do since I'm self diagnosed. I only ate out once since going gluten-free and was afraid to even mention "no croutons" on my salad....now I'm realizing just being up front will make people more believing. Don't look at it as a burden or something to be ashamed or afraid to talk about, it's who you are, it's a lifestyle. WHen the gluten topic is brought up in everyday life I dont make a big deal about it, I just casually say I'm allergic to wheat and people for the most part are understanding, minus the few that rub it in and say "what? that sucks! " and then ask detailed questions about it and criticize me like I'm some sort of freak... they make me a bit angry sometimes, but I know what is best for me. generally most people are understanding, even if they dont understand what exactly gluten is....

[home-based-mom]

Open Original Shared Link is a thread I started that discusses my apprehensions about spending about 2 days at the mercy of total strangers who knew literally nothing about gluten intolerance. At no time did anyone ever bring up the topic of diagnosis. I just told people what I could eat and what I couldn't, and how what I could eat needed to be prepared. Period.

You are not weird at all but you will do much better when you get over being self conscious.

[Fiddle-Faddle]

If I were allergic to peanuts, I would have no hesitation about requesting anyone, particularly a health professional or food professional, to accomodate me, especially as I have to pay them!

So why should I have any hesitation if gluten affects me as severely as peanuts affect someone else?

I'm not rude or pushy about it, but I have no hesitation about protecting my health. I have 3 children who depend on having their mommy healthy.

[Live2BWell]

I completely relate! I am not officially diagnosed with gluten intolerance, but I do have other food sensitivities and I have an autoimmune disorder that often goes hand in hand with Celiac/Gluten Sensitivity. Even being diagnosed with an autoimmune disorder, my diagnosis (medical) is not well supported, and is kind of poo-poo'd.

I have not yet gone gluten free, and I totally understand the insecurity you talk about on this thread. For me, personally, I have a very big issue stemming from my past with being referred to as "dramatic," or somehow invalidated - especially by my parents - so the idea of feeling secure with self-diagnosing is, quite anxiety provoking

You are definitely not alone in your worries, and while I agree with what everyone else has said and have no real advice per se, to offer you, I can offer you my empathy and support.

[TammyK]

I feel like since I am self diagnosed with gluten intolerance that I have no right to tell others they must change their ways to accommodate me. If I had an "official" diagnosis I would have been upfront with my dentist and told him I need gluten free materials. I have not eaten out since I started eating gluten free for fear of sounding "nutty" or "difficult" when I order food. I feel like I need some sort of proof on paper that I have gluten intolerance and then I will gain the confidence I need to keep myself healthy outside my home. Is a positive response to eating gluten free proof enough? Does anyone else with self diagnosed gluten intolerance/Celiac feel this way or am I just weird.

I do relate to you. For about 10 seconds when I am ordering or talking to kitchen staff, relatives or strangers, I feel awkward and fear their opinions. I quickly recognize my silliness and buck it up in my mind. This is my self-talk to get me through it; "you know gluten makes you sick, quit worrying about what these people think, they are likely clueless about this subject, who are they anyway (strangers)?, you know your own body better than anyone, take care of yourself for peat-sakes, you could provide some education to these people, what business of this is theirs anyway?, are they actually going to talk me out of it? (no), tell them the truth right now and tell them confidentely and get it over with!" All that is a matter of seconds! With practice, I am getting better and better at it.

With myself, my social issues a lack of confidence in me and an over-dependence on the medical profession. It is what we are trained to think all of our lives: doctors are Gods that know everything and the only people that can diagnose. In this situation, you are your best doctor. Doctors don't know everything and make many mistakes. I have stories to prove that.

Dxing yourself with gluten intolerance shouldn't be such a big deal. Afterall, all it means is that gluten effects your body negatively, creating health problems and that you shouldn't be eating it. That's quiet simple really. And, most important of all, I truly believe that the elimination diet is by far the best way to determine gluten intolerance since we are dealing with food. I have full confidence in elimination diets.

Tonight I stood in front of a vendor at my county fair and had to ask what seemed like 50 guestions: Okay then, did you use this grill to fry any buns, anything with wheat, etc... ? Do you have any flour in your booth at all? Can you read the label to me on the bag of rice? What did you season the chicken with? Is that a thickener? I felt self-conscious but I did it. I wondered what others around me were thinking. I followed it up with, "my daughter and I are severly allergic to wheat and I hope I can find something to eat tonight. With practice, it will get easier. The other option was to starve for 3 more hours.

Amy, believe in your own judgment and don't worry about what others think. You are the one who cares and the one responsible for your own health.

Sorry this was so long but I just got rolling....

[TammyK]

I feel like since I am self diagnosed with gluten intolerance that I have no right to tell others they must change their ways to accommodate me. If I had an "official" diagnosis I would have been upfront with my dentist and told him I need gluten free materials. I have not eaten out since I started eating gluten free for fear of sounding "nutty" or "difficult" when I order food. I feel like I need some sort of proof on paper that I have gluten intolerance and then I will gain the confidence I need to keep myself healthy outside my home. Is a positive response to eating gluten free proof enough? Does anyone else with self diagnosed gluten intolerance/Celiac feel this way or am I just weird.

Thought this was good. From one of my topics on another board....

What can Enterolab testing really tell you? I already know we are "sensative" to gluten. My N.D. recommended the full panel after getting neg. blood work. I'm not sure why I should spend the money.

I could not agree more. Why get a full panel with negative blood work? The only test that really matters is your response to gluten or anything else for that matter. If you are sure that you have a problem whenever you consume something then what other proof do you need. On the other hand if you cannot handle family members, friends etc. questioning your lifestyle change based on "your" findings then you might consider another approach. Personally I could care less what anyone else thinks about what I may eat or drink as long as it makes me feel fine. Insurance, school needs for children etc. are factors others consider when facing this decision (further testing). If you are sure that gluten is a factor in your health I would try to find a doctor who might give me a diagnosis based on diet response which would help in being able to request gluten-free for you and your family in the future. I hope this helps.

Tom

[GFinDC]

I kind of felt that way for a while, but came to realize it was not worth spending time feeling that way! I had a blood test that was negative, but a gene test that showed one of the genes for celiac. But, I had gone gluten-free 4 months prior to my doctors appointment for testing/blood work. I had to wait 3 months for my appointment. I went in the first place because I had developed a thyroid nodule. Anyway, 4 months after going gluten-free, my doctor said yes, my symptoms and recovery from symptoms matched celiac. My blood test didn't show the antibodies at that time, but 4 months is a long time. Anyhow, I felt kinf of unsure except that I knew that I felt very different. I just didn't have all the pieces of paper and test results to show anyone.

I think telling people you are allergic to wheat is a good way to handle some situations. People understand allergies much easier than celiac disease. They are familiar with people who have allergies. And it is kind of, sort of, true-ish. Celiac does involve the immune system after all. And allergies involve the immune system too. But it is a quick kind of shorthand way to communicate to people what your concern is. It does't solve the problem in restaraunts though. How many kitchen workers have any idea that HVP could contain gluten? Or that spice blends may contain wheat gluten? Probably not many. So just telling them "no wheat" is not a gaurantee that you will get gluten free food. Anyway, here is a link to the GFRAP site. They certify restaraunts for gluten-free food preparation. I knew there was a point to this dribble...

Open Original Shared Link

Oh, and there was a study on Crohn's genes a while back where they discoverd 22 more genes than the 11 they originally knew about being related to Crohn's Disease. So the gene testing is not nessecarily 100% the whole story right now. What if they do the same thing with celiac? It could be a lot more people have it than are indicated by the currently known gene tests.

Open Original Shared Link

[Amyleigh0007]

Thank you all for your encouraging words. I need to get over my lack of confidence and stick up for myself. I've been a doormat all my life though so that will be hard to change. I have no problem being assertive when it comes to my son's diet and I need to transfer that energy to my own life. I am having allergy testing next month so I hope that helps in my quest for a "real" dx. But, even if it doesn't, I need to grow a backbone. Gluten free obviously helps alleviate my IBS symptoms (something I DO have an official dx for) so that right there should be enough for me to have the confidence to stick up for myself. Again, thank you all. Your comments really helped me shed light on this issue and make me see things from a different perspective.

[slmprofesseur]

Amyleigh-

Do stand up for yourself and your children. I didn't and I am lucky I made it. I have always been sick as a child, and everyone has said I need to eat more (I am skinny). During college and into my 20s my problems got worse, asthma, mysterious pains in my side, appendectomy, you name it. My family thought I was faking especially about cross contamination (shellfish) .

My issue was with shellfish, we ( my parents and siblings) went to a seafood restaurant, and of course there are other items on the menu. I didn't want to say anything because it was a birthday... But the c.c. issues scared me. I didn't have an epi-pen or anything. Shortly after eating I felt the itchiness on my lips and throat. I ran into the nearest cvs and drank benadryl right out the bottle. And then went to the nearest er. I risked dying because I didn't want to stand up for myself.

If you don't stand up for yourself then no one else will and in the end only you will suffer. (I remember thinking about that in the ER...I was actually crying...)

[Fiddle-Faddle]

If you have an ALLERGY to wheat, that will show up in allergy testing. But celiac disease won't--it's not an allergy, it's an autoimmune response. Different mechanism, different tests. They need to run the Celiac Panel--test for IgG, IgA, and endomysial antibodies to see if you are producing gluten-specific antibodies, not to see if you are producing histamine.

Most of us on this board are in agreement that IBS is a BS diagnosis. Inflammatory Bowel Syndrome is a SYNDROME, not a disease. A syndrome is a list of symptoms, with no known cause. But if you look at the list of symptoms for celiac disease, they are identical to the list of symptoms for IBS. Gee, what a coincidence.

IBS seems to have been coined as a diagnosis by the pharmaceutical industry, who makes expensive drugs to mask those symptoms without ever addressing the dietary CAUSES of those symptoms. (And why would they? If you change your diet, they don't make a penny from you!) And the pharmaceutical industry funds--and runs--the medical schools in this country, so doctors are trained to write prescriptions, not to change diets.

Welcome aboard, anyway, Amyleigh--and you are here, so you are now no longer a doormat. Ever!

[DeLina]

I hate going anywhere to eat.......food is the enemy.......friends say hey lets get together for dinner......sorry I can't make it is my response.......I'm over the top embarrassed.......If we go out to eat as I scan the menu my husband ask the waiter do you have a gluten free menu.......as I shrink into my chair........I thinking of becoming a shut in just so I never have to announce it.

[Amyleigh0007]

I feel like allergy testing is a last ditch effort to discover what is wrong with me. I realize that Celiac and allergies are two different things. My son has both Celiac and several food allergies so I thought that if he has them I might too. It might be a part of the puzzle that I'm missing. I also think IBS is BS. It's what doctors tell you when they have no clue what is wrong with you. My doctor was shocked that I wanted to be tested for Celiac. Even after I told him my son was recently dx. Even after I reminded him that he told me I had IBS 19 years ago and I thought gluten might be my problem. He said he only tests the elderly for Celiac. I was not surprised when my test came back negative and found out he only ran 2 tests, not the full panel. I will be changing doctors. Anyway, thank you for all the support.

[home-based-mom]

I hate going anywhere to eat.......food is the enemy.......friends say hey lets get together for dinner......sorry I can't make it is my response.......I'm over the top embarrassed.......If we go out to eat as I scan the menu my husband ask the waiter do you have a gluten free menu.......as I shrink into my chair........I thinking of becoming a shut in just so I never have to announce it.

Ya know what? I could *SO* easily slip into that mode. I am not self conscious in front of groups, but one-on-one interactions that I think will draw attention to me or focus on me make me most uncomfortable.

But last weekend I *had* to go to Plano, Texas, for a mini missions conference. I *had* to go because I was making a presentation no one else could make. I *had* to do something about available food or go 54 hours (more or less) without food. Not my idea of a good time.

I took what I could on the plane. I e-mailed the host church asking who I could talk to, and exchanged several e-mails with the ladies in charge of the kitchen. They let me know what they were having at meal times, and I let them know how mine had to be done. The e-mails were forwarded to the host family where I spent the nights.

They let me know that dinner on Saturday was in a restaurant I was not familiar with. I came in here and asked questions. I went on line and checked out the menu. Finally I called the manager Saturday afternoon during a break. As others have said in here over and over, most restaurant managers are used to special needs any more. The server also knew the routine.

Nobody at our tables paid the slightest attention to what I was doing because they were too busy talking and shoveling chips and salsa to care what I did.

I survived and you can, too!

There really is no reason to be embarrassed and shrink into your chair. This is not a moral issue and is nothing to be ashamed of. You do NOT have to wear a Scarlet "C" for Celiac!

[GFinDC]

I feel like allergy testing is a last ditch effort to discover what is wrong with me. I realize that Celiac and allergies are two different things. My son has both Celiac and several food allergies so I thought that if he has them I might too. It might be a part of the puzzle that I'm missing. I also think IBS is BS. It's what doctors tell you when they have no clue what is wrong with you. My doctor was shocked that I wanted to be tested for Celiac. Even after I told him my son was recently dx. Even after I reminded him that he told me I had IBS 19 years ago and I thought gluten might be my problem. He said he only tests the elderly for Celiac. I was not surprised when my test came back negative and found out he only ran 2 tests, not the full panel. I will be changing doctors. Anyway, thank you for all the support.

Amazing. If your son has a genetic disease, where did the doc think it came from? Cracker jacks? Kissing too soon on a first date? Did he even suggest testing for your husband or other family members? Well, it pays to think for yourself, as you obviously are doing. Doctors schmockters, that's just ridiculous!

[Amyleigh0007]

That doctor is a joke. My mom begged me not to go to him. She can't stand him. Actually, I am learning that most doctors are jokes. My son's GI actually told my husband that he didn't need to get tested since he didn't have any symptoms. I thought that was crazy too.

[raen]

I have not eaten out since I started eating gluten free for fear of sounding "nutty" or "difficult" when I order food.

d

im not officially diagnosed, but im not so stupid that i dont notice i only get gut-wrenching pains when i have wheat barley or rye. if you are, you are, saying "your not allergic because your not diagnosed" is like saying "that guy who robbed a bank isnt a bankrobber because he wasnt convicted."

the first place i "ate out" after finding out i was celiac was a cafe - i had to ask "is it possible for there to be bread crumbs in any of the coffee stuff?" and quickly added "i know that must sound weird, but i have a gluten allergy so its kind of important" and she said, without even giving me the judgmental oh-shes-a-healthnut-hypochondric look i expected, "the bread and coffee are kept totally separate so i really dont think crumbs could get in" and i left with a tasty coffee. for all that stress, it wasnt such a big deal after all, just a 10 second conversation. i DO feel like i may be annoying when i ask all these questions, but ive never once had a waiter get annoyed with me, and i get a little more confident each time.

the thing about allergies.. is that people rarely question them. its not like your saying "i have some rare disease" even if it feels that way - you have an allergy. your immune system attacks when you eat gluten, plain and simple. im also allergic to milk - try asking, would you feel weird saying "is there any dairy in this dish?", i certainly never felt weird asking something so simple. people with peanut and shellfish allergy have to be just a careful, too.

[Beth in NC]

I went to the Starbucks in my Harris Teeter today...grocery store for those of you not familiar, and told the gal I could no long have dairy or gluten. I knew the gluten wasn't really an issue there but I asked if there was anything...like the lemonade, that could be made into a slushie or something. She was awesome! Let me read the boxes of lemonade and strawberry puree and make me a small mix of the two. Then she assured me that they could use SOY for my coffee! Duh! I've only been dairy free for a week, so hadn't even thought of it. I was impressed that she was so willing to work with me.

I hope other establishments are as nice to me in the future.

[Amyleigh0007]

Progress! I went out to lunch yesterday and I am still alive today! We went to Longhorn Steakhouse. When the server came over I gave her an allergy alert card and told her it was for both my son and myself. She went to the manager and he printed from the website a gluten free menu for us. I had a cheeseburger (no bun) and a sweet potato and my son had a hot dog (no bun) and mashed potatos. It was good. I had a stomach ache that night but nothing extreme. I probably had the stomach ache because I was worried that I was going to get sick! My son feels fine too. That wasn't so hard!!