Need To Vent

[Chrisser]

I swear to God, if one more person asks or tells me that my physical symptoms are all psychological, I'm going to go postal. First, my doctor...then my mother...then one of my closest friends. I AM PHYSICALLY SICK. What can't people understand that. Yes, all of this is frustrating and overwhelming, and there are nights I don't want to go to bed just to have to wake up and do it all over again the next day. But I WANT to go out...I WANT to work...I WANT to run errands...I WANT to see my friends. But I can't. Grrrr.

Thank you for reading =)

[Guest ~jules~]

I'm starting to get the feeling that people may think I'm losing it a little I was diagnosed last week, and i'm naturally consumed with it right now. Today I felt horrible after 3 good days, so I whined ALOT! I think I'm getting tired of my own whining! lol... My husband even looks back now at all the times I said I didn't feel well, or layed in bed, or missed out on things, he says he just didn't realize how horrible I really did feel. I'm getting tired of people saying "you can have salad" I just want to say Do you want a salad? Probably not huh! Vent away thats why were here ......take care

[Judyin Philly]

Chrisser-I know it seems hard and not worth it sometimes but --if you can just hang in there..I was thinking today that alot of younger beautiful ladies are having trouble..and getting depressed..I can't relate to that casue when i was YOUNG i was eating gluten...BUT after 15 years of feeling like crap and everyone saying it was in my head or God for bid the dreaded. IBS-- you have to learn to handle stress...you need therapy..meanwhile spending most of your life in the bathrooms of when ever you did venture out......

Maybe the years of glutening and feeling soooo sick...make it easier for some of us older people to handle it...maybe part is being giving a dx that is based on lab test or just doing it on your own...makes us feel more powerful and in control for the first time in our lives. My prayer for you is that if you can lick this now, you may avoid some of the awful 'extra' dx's that some of us had due to years of eating gluten.

Chrisser -- if you go to see some of the descriptions that members have written (probably at the end of their personal info ) you will see what some have developed over the years. Check out --Canadian Karen, jerseyangel, armette (don't know who she is now...might be "mouse" or Lynne 'tiredofdoctores'. They put these descriptions so others will know what this incedious can do if you are dx'd or don't embrase the diet. i know it must be so hard being young and I hurt for you...

Guess it's late and i'm tired and just rambleing on but i do want to send you hope and help. I wish for you a better today tomorrow filled with more hope for the future.

hugs

Judy in Philly--feel free to PM me anytime. PLEASE FEEL FREE AND WELCOME TO COME AND VENT ANY TIME YOU NEED TO..WE'VE ALL BEEN THERE...HECK IT MIGHT BE ME TOMORROW.

[daffadilly]

yes, people can be so insensitive. What a bunch of hooey that it is all in your mind. Didn't your mom ever tell you to eat your fruits & veggies? If so why?, when according to her, all you had to do was think about it & poof, you got the benefits of all those nutrients, which must be true because she can see how eating cookies & cake can cause your mind to make you sick. Sorry I could not resist.

But really there is no defense against those kind of people. Just forge ahead on your own & get well & that will be your reward. Your mother will probably never come around to the gluten-free lifestyle, mine never did. For one thing some people have what I call the white coat disease. If someone wearing a white coat says anything they take it to be one breath removed from God's actual word. It frees them up to not think for themselves, make any decisions, or be responsible for anything. In addition to that they have a revered authority to quote & agree with, thereby making them seem as intelligent as the revered one. Nay make that positively as intelligent as the revered one because they whole-heartedly agree, and now have the opportunity to convince someone else of the great validity of their shared knowledge with the revered one. You know that there are actually people that if the doctor says you are going to die in two weeks, that they totally believe it & will in fact die in two weeks. But if the doctor says, it is up to you...

Vent here anytime, geez, we all have to deal with people just like that at times, just hopefully not a lot. Also, I think it is worse when you are newly gluten-free & do not have any other gluten-free friends & need support from anyone.

But you could have fun & use their opinions against them in some way

Like maybe say "I ate 12 candy bars & got sick but I know it was all in my head, so I ate 6 more..."

uh, maybe you could find a cure for diabetes by rethinking this whole sick thing vs mind

In fact I bet that when they first discovered that sugar made diabetics sick that they had to go thru the same thing that we do. I wonder how many actually died because someone thought they were just nuts in the head & could really eat a lot of sugar.

[Judyin Philly]

yes, people can be so insensitive.

But you could have fun & use their opinions against them in some way

Like maybe say "I ate 12 candy bars & got sick but I know it was all in my head, so I ate 6 more..."

uh, maybe you could find a cure for diabetes by rethinking this whole sick thing vs mind

In fact I bet that when they first discovered that sugar made diabetics sick that they had to go thru the same thing that we do. I wonder how many actually died because someone thought they were just nuts in the head & could really eat a lot of sugar.

dAFFADILLY--What a great post...just had to come back..I have learned so many one 'liners' from my friends on here. this was a keeper..AND ON A GOOD DAY...HUMOR ....IS THE BEST MEDICINE...AND ON A BAD DAY...IT STILL WORKS BEST...IF YOU HAVE THE ENERGY FOR IT. THANKS FOR THE POST.

JUDY

[Chrisser]

Chrisser-I know it seems hard and not worth it sometimes but --if you can just hang in there..I was thinking today that alot of younger beautiful ladies are having trouble..and getting depressed..I can't relate to that casue when i was YOUNG i was eating gluten...BUT after 15 years of feeling like crap and everyone saying it was in my head or God for bid the dreaded. IBS-- you have to learn to handle stress...you need therapy..meanwhile spending most of your life in the bathrooms of when ever you did venture out......

Maybe the years of glutening and feeling soooo sick...make it easier for some of us older people to handle it...maybe part is being giving a dx that is based on lab test or just doing it on your own...makes us feel more powerful and in control for the first time in our lives. My prayer for you is that if you can lick this now, you may avoid some of the awful 'extra' dx's that some of us had due to years of eating gluten.

Chrisser -- if you go to see some of the descriptions that members have written (probably at the end of their personal info ) you will see what some have developed over the years. Check out --Canadian Karen, jerseyangel, armette (don't know who she is now...might be "mouse" or Lynne 'tiredofdoctores'. They put these descriptions so others will know what this incedious can do if you are dx'd or don't embrase the diet. i know it must be so hard being young and I hurt for you...

Guess it's late and i'm tired and just rambleing on but i do want to send you hope and help. I wish for you a better today tomorrow filled with more hope for the future.

hugs

Judy in Philly--feel free to PM me anytime. PLEASE FEEL FREE AND WELCOME TO COME AND VENT ANY TIME YOU NEED TO..WE'VE ALL BEEN THERE...HECK IT MIGHT BE ME TOMORROW.

Hi Judy,

Thanks for the encouragement. I've actually been reading people's signatures these past few weeks that I've been on here, and I'm shocked at what some of them have been through, but also thankful that I have not yet reached that point. At the same time, though, I am scared that other things will pop up. It's not that I am not embracing this diet, I think I'm just still at the point of being frustrated and overwhelmed. I went gluten-free immediately after diagnosis, but the doctors I've seen still don't have any answers for me...to the point that I wonder if everything I've experienced is Celiac. I had my first GI workup when I was 7 years old, was diagnosed with spastic colon and IBS over the years, and we chalked it up to just having the "family stomach." I've also battled depression and anxiety, and have become increasingly inactive over these last couple of years. I used to be super-athlete, played volleyball in college, and used to thrive on busy schedules...so now it's pretty devastating to be at the point I am now. Right now I'm just frustrated and scared, and I, nor does anyone else, have much insight for me. I've found some comfort in reading these boards, but because everyone is so different it's hard to find answers to some of the things I physically feel. I don't know what is next, and I just want my life back. I've been living off my savings for over a year now, and because I had to quit my new job after just one week (actually I never even made it past the first day), I'm back to worrying about finances again. I'm counting down the days until the gastroenterologist in hopes that he can give me some answers.

Christine

[Chrisser]

yes, people can be so insensitive. What a bunch of hooey that it is all in your mind. Didn't your mom ever tell you to eat your fruits & veggies? If so why?, when according to her, all you had to do was think about it & poof, you got the benefits of all those nutrients, which must be true because she can see how eating cookies & cake can cause your mind to make you sick. Sorry I could not resist.

But really there is no defense against those kind of people. Just forge ahead on your own & get well & that will be your reward. Your mother will probably never come around to the gluten-free lifestyle, mine never did. For one thing some people have what I call the white coat disease. If someone wearing a white coat says anything they take it to be one breath removed from God's actual word. It frees them up to not think for themselves, make any decisions, or be responsible for anything. In addition to that they have a revered authority to quote & agree with, thereby making them seem as intelligent as the revered one. Nay make that positively as intelligent as the revered one because they whole-heartedly agree, and now have the opportunity to convince someone else of the great validity of their shared knowledge with the revered one. You know that there are actually people that if the doctor says you are going to die in two weeks, that they totally believe it & will in fact die in two weeks. But if the doctor says, it is up to you...

Vent here anytime, geez, we all have to deal with people just like that at times, just hopefully not a lot. Also, I think it is worse when you are newly gluten-free & do not have any other gluten-free friends & need support from anyone.

But you could have fun & use their opinions against them in some way

Like maybe say "I ate 12 candy bars & got sick but I know it was all in my head, so I ate 6 more..."

uh, maybe you could find a cure for diabetes by rethinking this whole sick thing vs mind

In fact I bet that when they first discovered that sugar made diabetics sick that they had to go thru the same thing that we do. I wonder how many actually died because someone thought they were just nuts in the head & could really eat a lot of sugar.

lol, your post made me laugh...thanks.

Doctors sure are driving me crazy. Even a while before this whole gluten-free happened, I started experiencing low blood sugar symptoms. I think it started about a year and a half ago. I didn't get it checked out until the beginning of this year, endocrinologist gave me a glucose meter, but the #'s I get are "normal." My GP actually called the #'s perfect and beautiful. So they're all telling me that it's not hypoglycemia, and "there must be something else causing those symptoms." OK, well then what is it?? You're the doctor, tell me what it is. Even though I can correllate my symptoms to the #'s I get, I'm wrong. Of course.

My mom is actually trying to go gluten-free (or at least trying not to eat as much) herself. In talking to and spending time with me since being diagnosed, she's seen the light herself and can attribute a lot of things in herself to gluten. Now if only we can convince my brother. If anyone needs to go gluten-free, it's him. He got the blood test, but that came back negative. But talking to him about anything health-related is a waste of air. His gluten-free brought me to one of my dr's appts once, and she told about the time he said, "tomorrow's gonna be a bad sugar day, I can tell"...and he went out and bought himself a glucose meter the other day

[Guest Doll]

I know you were kidding, but in case people get confused....I just wanted to clarify that dietary sugar has nothing to do with diabetes. At least the more severe non-preventable, fatal if untreated kind (Type 1). Type 1 is fatal if not treated with insulin injections to replace the insulin that is no longer made. Autoimmune Type 1 diabetes happens when the immune system attacks the beta cells of the pancreas, much like when we eat gluten our intestines are attacked. Except in the case of Type 1, we don't know exactly what the trigger is/triggers are. Type 1 is genetically related to Celiac, as well as other autoimmune conditions. The whole "leaky gut" issue....

Type 1 diabetics don't make ANY insulin for basal metabolism to survive even while fasting, so eliminating sugar is not the solution. In fact, unlike Type 2 diabetics (insulin resistance caused by being overweight, poor diet, etc.) , Type 1's can match their insulin to what they eat and metabolize sugar normally. 15 grams of carbs raises blood glucose levels the same, whether it's from an apple or a piece of cake. A Type 1 will still have high blood glucose levels from an apple or beans if they do not take insulin for it.

Off my soapbox....

Back to the topic....Chrisser, it is NOT in your head. I am lucky that I knew to ask to be tested for Celiac. Even though I had every classical and neurological symptom in the book and I literally almost pass out (lightheaded, racing heart, seeing black spots, dizzy, numb body, etc.) when exposed to gluten, I was told I had "panic attacks" and that it was all in my head and given a Rx for Xanax. My test results all came back off the charts and I had no intestines left for all intents and purposes. I believe you and all of us here do. Unfortunately not enough Dr.'s are understanding or familiar with Celiac, but one day I believe that will change. That is why I put that I am pre-med in my signature. I know some of you hate Drs and presumably aspiring Drs. I did it because I want to know about others experiences with this disease, and how it has affected them, physically and mentally. Plus, I'd like to help if possible

I'm still a newbie (I'm only 24, and I was Dx at 23), but hey, I'll do my best!

[daffadilly]

Chrisser, I see you are in Dallas, I am in Houston. PM me if you want. I need to make a trip to Dallas area, just waiting for cooler weather. My son lives in Austin. I have an Aunt in Denton. The family cemetary is South of Dallas. Are you a Dallas native? I am a Houston native.

A lot of us celiacs have the hypoglycemia, it will (should) go away once you are gluten-free. But hey, you should have seen how fast they checked me out at Walmart one time when I was leaning on the buggy about to pass out, eating a candy bar. I did pay for the candy bar, but I do not think they cared. Somebody appeared out of nowhere & opened a register & checked me out !!!!!

Just try not to worry about anything & just eat healthy & gluten-free & do without those gluten-free breads & things, until you have a chance to heal.

Oh, & RUN to the drugstore & get some B12, I take Nature Made. But there is a long word that starts with an S that is better, but I just get the Nature Made at walgreens. You cannot take too much like you can with other vitamins etc. Do not bother to check your B12 levels, just take a B12 every single day regardless, it is very important for us.

re your brother, it is a little different with men, they have that macho thing going on & "no one is going to tell me what to eat..." Just let him see how well you are doing & he will come around, with guys if you bug them too soon they rebel, or tune out...

Judy in Philly - you look like me !!!!

[Chrisser]

Chrisser, I see you are in Dallas, I am in Houston. PM me if you want. I need to make a trip to Dallas area, just waiting for cooler weather. My son lives in Austin. I have an Aunt in Denton. The family cemetary is South of Dallas. Are you a Dallas native? I am a Houston native.

I'm originally from NY...moved to Dallas at about 13 when my mom remarried.

A lot of us celiacs have the hypoglycemia, it will (should) go away once you are gluten-free. But hey, you should have seen how fast they checked me out at Walmart one time when I was leaning on the buggy about to pass out, eating a candy bar. I did pay for the candy bar, but I do not think they cared. Somebody appeared out of nowhere & opened a register & checked me out !!!!!

How long did it take for your hypoglycemia to resolve?

[Guest Doll]

Chrisser, home BG meter results can vary by up to 20% (but not much variation at lower numbers), so it IS possible that you are having some mild hypoglycemia. Are you testing as soon as you get your symptoms? If not, your body will release glucagon, and your BG will go up, so when you test after, you will be normal.

Make sure your meter is accurate. Calibrate (check) it at the pharmacy, use the control solution to test it at home, and make sure the code on the bottle of strips matches the code on the machine. A good meter is Fresstyle Flash/Mini.

Other things can cause low blood sugar like symptoms, as can simply not eating enough. Low BP, low thyroid, low adrenal function, etc.

If your meter is found to not be detecting ANY lows EVER (legally it can't be THAT inaccurate, since Type 1 diabetics would die), I think it's a safe bet to say you're NOT hypoglycemic and start looking at other areas. You may also just be one of those people who needs to eat frequently. You can also have your doctor do a venous (from the vein) fasting glucose at the office and GTT to see if you become hypoglycemic before and after meals.

Cheers!