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Tehana

Dealing With Not Feeling Accepted

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First time poster here, not really sure where to start. I guess I'm looking for some support and to feel like I actually belong in the gluten-free community. I don't have any gluten-free friends, my family isn't terribly understanding (They think its a fad diet) but I do have a very supportive significant other. I've been reading these forums ever since going gluten-free in August of 2009.

I think I mostly feel like I don't belong because I haven't had a positive diagnosis. Here's a bit of my story:

I've always been extremely thin. I didn't reach 100lbs until I was 19 or so. In 2007 I began having severe joint pain in my knees, I had to start wearing knee braces and nothing helped. In early 2008 I began having pain in my lower left flank, it was a dull ache that was there consistently and was doing nothing but getting worse. I went to dozens of doctors and many of them felt it was reproductive related, even scheduling me for surgery to remove "growths" that may be there (no positive test result for that either). Right before that surgery I went to an amazing doctor in Boston who felt my pain was coming from my colon. Nearly 18 months after all of this I went, scared and distraught to my primary care physician. She sent me for a CT scan and dozens of blood tests, including ABS Celiac, everything came back negative, she told me to take some fiber and that she could do nothing more for me (Nice, eh?). A few months later I was talking with a friend who advised of their gluten problems and challenged me to just try it. Well, I did and I haven't eaten a bit of gluten (Intentionally) since then.

I can't explain how amazing I feel. Problems I didn't know were problems are gone, Migraines I've had since I was 5 are gone, my joint pain? Gone completely. I have more energy than I've had in years. My mind is clear, my depression? Gone. I've also put on about 15 lbs (Although I don't really like that so much ;) ). But my problem is still that I feel like no one believes me because I don't have a piece of paper. My body speaks for itself, and I truly believe that, without a doubt, I have Celiac's disease, but is anyone else out there feeling like I am?

I also seem to be finding myself with quite a bit of animosity towards those that can eat gluten. My life is changed completely, and social situations are so difficult. I have so much anxiety around those that are eating gluten. I've found that I seem to be extremely sensitive to gluten. I've had a salad brought to me with a piece of bread on it, the waiter took the salad back, removed the bread and I still got ill from it. (even after asking them to remake it).

Sorry this is long and rambly. I guess I'm just hoping I'm not alone out there, or crazy.

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You are not alone or crazy. Once you accept yourself others will start to accept you. You can do this.

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You may be gluten intolerant and not necessarily have celiac; hopefully it is the former and not the latter. I know what you mean about others not being "understanding", as I've encountered this as well. However, I have also realized that it is more lack of knowledge on friends' and family's parts, not lack of support or understanding. It is up to you to educate them, in a non-lecturing and non-confrontational way, on why it is important for you to be gluten-free. Consider giving your friends and family publicly-available printed information (from reputable and respected websites) on the gluten-free diet and on the symptoms one has if they eat gluten when they shouldn't. Perhaps if they see that the information is coming from actual organizations and not just from you (no offense), they may regard it more seriously (I say this because this is what I had to do for some people I know). I don't know if I'm allowed to say this type of thing on this site (!), but I'll try: Shelley Case has a website that has good and basic information including fact-sheets on gluten-free eating and Celiac.

Another point: ask for an endoscopy, as this procedure is considered highly diagnostic for determining if one has celiac or not. As I say, hopefully you turn out to have gluten intolerance and not celiac.

Good luck!

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Tehana, are you still in the Boston area? If so check out the Celiac Center at Beth Israel Hospital. Their doctors also see patients in Lexington which can be a bit more convenient than going into the city depending on where you are. I can't even tell you how amazing it is to be validated by a medical professional after all these years of trying to figure out what's wrong. Now I can say 'I have been diagnosed' instead of 'I know myself it's gluten/celiac'. Sure, we shouldn't care what others think but even I began to doubt myself... was it all in my head? was I a hypochondriac? so many docs have told me everything's fine and I don't believe them, am I crazy? Whenever I have these moments of doubt I can assure myself, and anyone else who gives me grief, that yes I was diagnosed by a GI doc.

Beth Israel Celiac Center

Also meant to say... our stories are very similar. I was severely underweight most of my life and I have RA so I can sympathize with the joint pain and fatigue. Right around the time my symptoms really seemed to kick into high gear is when I gained weight quickly. I went from underweight to very chubby and teetering on overweight in less than 3 years. I think gluten and soy are the culprits. More so the soy than the gluten. I have an appt coming up to check my thyroid since soy can wreak havoc on the thyroid.

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Tehana:

If you have a lack of support, then I sugget joining a support group in your area. You will meet all kinds of new people who have similar stories as you do. Years of problems, dismissing doctors, and finally getting rid of one big thing that seems to help a great deal, diagnosis of celiac or not.

Where are you in the world?

There is a link on the celiac.com page that lists support groups and I would suggest contacting one of those.

It will be an uplifting experience for you!!

I know it :)

~Allison

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Above all, congrats to you on all your research. And on feeling better! I've started trying to find non-food related activites to do with my friends. The fact that they see me now, as opposed to not at all before, shows them that I am better. Avoiding food helps me!

Best of luck to you, keep in touch here, let us know how you are doing. And yes, If gluten makes you feel miserable, you belong here! We know how you feel--Avoid it at all costs!

-Daisy

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Tehana- I myself am a self-diagnosed Celiac. I was unable to afford the testing required for an official diagnosis. But honestly, it's never come up in conversation whether I was officially diagnosed or not. I just don't bring it up, I behave as though it's a foregone conclusion that people will accept my food issues, and they do. I happen to not care whether they do or not, so maybe that has something to do with it. I'm not going to cheat just because I don't have a diagnosis, I'm not going to do anything differently because I'm lacking a piece of paper. I hope that you're able to shed your worries about other people taking you seriously. We do! We don't care if you're diagnosed. And your very supportive significant other does, so you're definitely ahead of the curve, right?

Side question: Does your boyfriend appreciate the new, extra padding? Mine sure did!

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How about telling others that you have Celiac. If they ask you if you tested positive for it, just tell a fib and say you did. That may be the only way you get through to some people.

I personally haven't done that but I most of my friends and family seem to understand.

Good luck!

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It's kind of rough to tell someone to join a support group. There is not a support group (thit I have been able to find) in my whole state! Like it or not, buddies, YOU are my support group, and I can't say how much you have helped me.

Tehana, stick around here. This is a super group of people with untold combined knowledge as well as wisdom.

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Tehana- I myself am a self-diagnosed Celiac. I was unable to afford the testing required for an official diagnosis. But honestly, it's never come up in conversation whether I was officially diagnosed or not. I just don't bring it up, I behave as though it's a foregone conclusion that people will accept my food issues, and they do. I happen to not care whether they do or not, so maybe that has something to do with it. I'm not going to cheat just because I don't have a diagnosis, I'm not going to do anything differently because I'm lacking a piece of paper.

Same here! Although it was my dr. (a Naturopath) who insisted I do the challenge diet for a month, she didn't put me through the testing because I'm uninsured and she knows money is a problem. And at that same app't. almost 4 weeks ago now, she had already written out a draw sheet for me to take to the local lab, for thyroid re-testing ($225); plus she wanted me to re-test to see if the oral chelation therapy I've already done had eliminated the heavy metals ($80); then there was her fee ($90); plus as soon as financially possible, I need to have my hormones re-checked ($350). So I guess she figured she'd already hit my pocketbook hard enough, without adding insult to injury by making me pay for horrendously expensive celiac testing! I have my next app't. this Thursday, where I'll report on how the diet challenge went....but since I didn't have the $$ to do the heavy metal re-testing, I may re-schedule. After all, although I'm far from well after only 3 1/2 weeks of being g.f., there have been enough positive changes that I know now that my dr. was right in what she said last month: that gluten is at the root of most (if not all) my health problems.

And I, too, don't give a rat's rear end what other people think. I'm sorry if that sounds rude but hey, this is my body, health, and life, not theirs. And I'm certainly not harming anyone by not eating gluten, nor am I asking anyone to cook special for me (except in restaurants, if they're willing--but then, I'm paying them to cook for me!). If I go to a potluck, I'll bring my own food. If someone invites me to dinner, I'll bring a dish that everyone, including myself, can eat. If people don't like that then, oh well, it's not my problem, it's theirs. Now in all fairness to the people in my life, they've been pretty understanding. I don't think everyone agrees with my dr. and I, but they haven't come right out and said it. The most negative thing I've heard thus far are comments like, "Nothing with gluten?" Eyes get a little big at this point and then they kind of shake their heads and add, "Well. I wish you luck." Almost with the tone that means, "yeah, right, good luck with that, sucker---ain't gonna' happen!" :huh: Or they'll get that "Wow I really feel sorry for you look" and kind of shake their heads and say things like, "Well, I admire you, being able to cut that stuff out....if it were me, I don't think I could ever do it...."

But like JNBunnie1 alluded to, I think attitude has a lot to do with it. If you act like, this is what's wrong and this is what I have to do to get better and be healthy, and that's that, then most people are fairly accepting. If they're not, I suppose you could always ask them, "O.k., let's say my dr. checked my cholesterol and found that it was horrible, and said I had to really cut back on the bad fats in my diet, exercise more, whatever. So I tell you, 'sorry, but I can't eat doughnuts with you this morning; but I'll still join you and just have coffee,' would you be upset?" And seriously, can anyone honestly say that if you needed to alter you diet to lower cholesterol, b.p., or recover from a heart attack--or if you had a deadly peanut allergy, or whatever--can anyone honestly say that yes, they'd be upset with you for that? Or not accept you? Well, gluten-intolerance and/or celiac is no different.

You've come to a great place here! Everyone here totally understands.

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While I can't relate to your family not understanding, I'm SO happy for you feeling better. I haven't quite even reached that point of feeling better myself! (JEALOUS, haha).

Sometimes what kind of helps me cope with feeling "left out" is turning to some of my friends with similar problems. I have a friend who is VERY lactose-intolerant, and has been for as long as she can remember! I love dairy, so I truly admire her for living with her allergy.

Another friend of mine--while by choice--is vegan. So while she can eat gluten she avoids just as much food as I do, even more. She isn't an animal's rights activist, she just does it to eat well, and is very successful.

usually what helps is just explaining the disease/intolerance to friends. If I just say "I can't eat gluten" they kind of go "oh, sucks to be you", but when I say "Sorry, I have celiac disease" they ask me to explain and they understand better...and even remember better for future reference, which is nice.

Ask around if anyone knows someone with celiac. I talked to my mom's friend whose two sons and herself have the disease, and she promised to lend me a gluten-free cake recipe!

(Of course, there's all of us, too ;) )

All of these can help you feel right at celiac-home. :lol:

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And I, too, don't give a rat's rear end what other people think. I'm sorry if that sounds rude but hey, this is my body, health, and life, not theirs. And I'm certainly not harming anyone by not eating gluten, nor am I asking anyone to cook special for me (except in restaurants, if they're willing--but then, I'm paying them to cook for me!).

Well said.

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I hope you can tell by the 11 replies in less than 12 hours that you are definitely NOT alone! ;) It does suck to struggle socially, and feel isolated. It will get better. I don't know if the feelings will ever disappear completely, but they won't be so incredibly frustrating. The amazing way you feel will soon cancel out all the crappy that you feel socially. I've felt similar anxieties, but with time have also developed the feelings that I really don't WANT the things that others are having because it will make me feel so bad. Sometimes people have even been jealous - I was in Mississippi & Louisiana on business once, and was sooo glad I had all my own food. Everything was so fried where we were! My traveling companions who had to eat the local fare were really not doing so hot. :P

I also think it's normal to feel a backlash at all the gluten eating people. Something very common was taken away from you, and it was very much out of your control. It has a huge, mind boggling impact on your life. Anger is a completely normal and expected response. It's ok to be angry!! But the anger is probably best vented on us or a support group, as the gluten eaters a) really won't understand and b.) it's not really their fault either. We are here for you, and hopefully you feel better after seeing today's responses!!

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Thank you all *SO* much for your wonderful support and comments. I can't tell you how much it means to me. I am in the Boston area, and I've looked into the Celiac center, but I just haven't had the time to devote to it, and I just finally was hired after being unemployed for a year. I've had insurance but I still really didn't have any extra cash to go have testing done. I may in the future.

My understanding of the Endoscopy was that I couldn't have one now that I've been gluten-free for about 8 months. From everything I've read the only thing I can do at this point is go back to eating gluten for 6 weeks or have the genetic testing, and at that point it doesn't even seem worth it, and thanks to your comments it makes me feel less and less like I need that piece of paper. I'd rather spend that cash splurging on gluten-free goodies! :D

I think I do need to seek out a support group, or at least hang around here more! I've joined another group but never felt like I had anything valid to say because I was just so new to it. My significant other has been encouraging me to start a blog on my experiences but I feel like there's so many of those already. Hopefully just hanging around here will help. Thank you so very much for the warm welcome and kind words. You have no idea how much it means!

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Fad diet or not (it's not for me!) ... if not eating gluten has made all the symptoms you listed GO AWAY... why on earth wouldn't anyone support your decision to go gluten free... w/ or w/o a diagnosis??

Others are correct in that this forum is the most supportive place to be. There is not ONE question you can ask here where SOMEONE doesn't have the answer... or can tell you where to go to find the answer.

Good luck! Sounds like you're doing great!!

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