Just Wondering

[lonewolf]

I'm sitting here with a bad headache and just thinking about some things. I'm VERY THANKFUL that I figured out that I'm gluten intolerant (or have Celiac or whatever). I appreciate my relatively good health and am thrilled that I can be active after being told that I would be in and out of a wheelchair for the rest of my life.

Anyway, I was just thinking about my dad and how he lived a sort of horrible life. I now realize he probably had Celiac Disease, and so did his mom. My only memories of my grandmother are of an old lady with no legs sitting in a wheelchair. My parents divorced soon after I was born, and my dad lived with his mom and took care of her. I learned later that she had diabetes and that's why her legs were amputated. My dad was in a car accident and suffered brain damage before I was born and we always thought that was the cause of his problems, but now I don't think so. His social worker told me once (after a failed suicide attempt) that he had emotional and mental problems that went beyond the car accident. He was bi-polar. He was also diabetic, but wouldn't treat it because of strange religious beliefs that included not believing in going to the doctor. He had bad teeth also. He went blind before he died, I'm sure from the diabetes. He always seemed sick, but wouldn't talk about it. Since he didn't want to take any medication, his bi-polar wasn't controlled and he would get manic and then try to commit suicide when he got depressed. Six weeks before my wedding, he succeeded with the suicide. (It happened almost 19 years ago, so I've come to terms with it.)

I'm not angry about this, but sometimes I wonder what my grandma's and dad's lives would have been like, and how mine would be different as a result, if people had understood Celiac and gluten intolerance in the 60's, 70's and 80's.

Do any of you look back at your parents or grandparents, realize that they probably have/had Celiac and get waves of sadness for what they probably suffered and wonder how it might have been different?

[plantime]

My mom was a diagnosed celiac, as I have just recently learned. That makes it harder for me to accept her death, since she died of complications of untreated celiac. She simply refused to give up her bread and toast. Knowing how I feel now about it, I am careful of my diet, so as not to make my kids feel this way!

[frenchiemama]

I think that my dad has it...but he went gluten-free for several weeks before testing just "to see" and then of course his testing came back inconclusive and he refuses to believe that he might have it (even though I have it and his first cousin has it). He is 55 now, and I really hate to think of him shortening his life. It makes me really, really sad.

[ravenwoodglass]

I'm not angry about this, but sometimes I wonder what my grandma's and dad's lives would have been like, and how mine would be different as a result, if people had understood Celiac and gluten intolerance in the 60's, 70's and 80's.

Do any of you look back at your parents or grandparents, realize that they probably have/had Celiac and get waves of sadness for what they probably suffered and wonder how it might have been different?

Oh yea, big time. And not just for my Mom but also for my children, my second in paticular. With my first we could spend time at the beach and walk for hours after my second I became very restricted.....just like my Mom was. After I became sick and was eventually diagnosed, 15 miserable years later, I came to understand why things were the way the were. There is a greiving process involved in our healing for many of us. Especially for the ones who were misdiagnosed for years and years. I now realize that my own personal dreams are in need of changing. But I also realize that because my children have been diagnosed the world is at their feet so to speak, so all my suffering was not in vain. Oh the things we missed, but I think I gained a patience and understanding that I wouldn't have if things had been different.

[elye]

Lonewolf, what a very sad story you've told and I'm so sorry your father and grandmother suffered as they did. I'm lucky enough to still have both parents with me, and I've vowed to try and get them to try eating gluten-free as they both have conditions that could very well be from years of malabsorption. My dad's blood work was negative and this is making it particularly difficult to convince him to try the diet anyway. They're from the old school, and what their old GP tells them MUST be true...Being old school also means they have no inclination to sit in front of a computer ("what do we want to sit in front of another box for?") and read this message board. So unfortunate....

[ebrbetty]

my dad had stomach troubles his whole life, but never found out why.

its been a running "Joke" in my family that most of us have stomach pain

[jerseyangel]

Liz--I know you have come to terms with everything, but I felt so bad when I read about your dad and grandmother. What a terrible time for you--your dad dying that way--and right before your wedding. You can't help but wonder what their lives (and the rest of you) would have been like if gluten had been identified as their root problem. So sad. I really think my mom has Celiac--her doctor only used one single blood test on her--and she is only too happy to believe that she's in the clear. Her list of symptoms and additional health problems is long, but does point to gluten intolerance. She believes everything her doctor says--without question. Even though when I suggested she be tested, her doctor admitted he knew very little about Celiac--and asked if I would let them know which test to do. I printed off the exact tests she needed and the NIH Confrence on Celiac for the doctor to read. They still managed to do it wrong. This is a shame.

[Ursa Major]

My mother undoubtedly had celiac disease, she had all the exact health problems I did, and died of liver cancer at the age of 66 in 1986. Her mother died of stomach cancer when my mother was 20, and I never knew her. I imagine that she likely had celiac disease as well. From my mother's stories, her mother was never very well, and her grandmother took care of her.

I think my dad may have been gluten intolerant as well, he had many symptoms. He also died of liver cancer, at the age of 74 in 1997. I've never seen either one of my parents even close to being intoxicated, they only had a glass of wine on special occasions, so their livers were definitely not destroyed by alcohol. My dad's doctor thought his cancer started in his stomach, but it would have been useless to figure out, because he was dying anyway.

I have six brothers and a sister in Germany. My sister definitely has celiac disease, but she claims she doesn't have time to bother with testing (right, poor excuse), and at least half my brothers have it, too, but won't even look at it. Except for one, that is, I hope he'll get himself tested soon. If he tests positive, maybe the others will take it more seriously. Because if I am right with my parents, they ALL have the genes for at least gluten intolerance. And in fact, they all have issues that could be caused by gluten intolerance, every single one of them.

I would just hate seeing some of my siblings die because they choose to ignore the celiac disease connection! They're all aware of my celiac disease, and I sent them all info. So, their ignorance is what they chose.

[Katydid]

Oh yes! I get so very very sad when I think about my husband's mother's life. She was always so sickly. So much so, that the first thing everyone always asked her was 'How do you feel today?"

My husband, my daughter and granddaughter all have celiac, as well as my husband's sister. It wasn't until his mother was terminally ill with a heart condition that everyone started getting diagnosed; and we put the pieces together....but too late to do any good. At that point, my husband and I had been married for over 30 years and I had never known her to have a healthy day. My husband remembers her in her younger years as a very vital active woman and says her health started declining shortly before we met.

Whenever I think about her, I can't help but wonder how many other wasted lives exist because of this insidious disease that is really quite controllable. Prior to his diagnosis, my husband was so weak he could hardly climb a flight of stairs; and today, 18 years later, he is so supercharged and full of energy that I have to take mega vitamins just to keep up with him. Sure, he has an occasional CC day, but that's to be expected.

I think all of us that are closely associated with celiac would love to do whatever we could to save the world from it. Maybe that's why we all talk about it so much...(or am I the only one that does that?) I guess that's ok though, because I know of several people who have gone to the doctor and been diagnosed because of my talking.

Kay

[Becky6]

Oh yes! My mother always has tummy troubles right after eating and horrible joint pain. I am trying to get her to go gluten-free and I think I am close! She has cut down a lot and even admitted yesterday that the bagel got her because of the gluten! And her dad had so many celiac symptoms. As well as his brothers! They all had tummy problems and all became suddenly lactose intolerant! I am just so glad that I figured it out for my daughter and me!

[floridanative]

Besides my Mother being dx'd recently due to mine, I'm pretty sure her only sibling, a sister, has Celiac and the gluten affects her brian instead of her intestines since she was dx's as a paranoid schrizophrenic when she was 30 and she was always mental as a child. Researchers now think many such patients can greatly improve when put on the gluten free diet. Due to my Aunt's illness, she and my Mother are not (and never were) close so she doesn't even know about Celiac being in our family. I feel certain my Grandmother has it too but as she is in a home now, they would never figure out how to feed her gluten free so she will never be tested for it I'm sure. My Mother is in charge of all that so I have no control over it and I've come to accept that.

I'm sure all of us have many relatives with Celiac that we will never know about. At least from now on, we can all educate the future genertations of our families. That's a start to better health for everyone I think.

[kevsmom]

My father had an iliostomy due to ulcerative colitis about 30 years ago. Of course they didn't test for Celiac back then. My brother was diagnosed with Celiac several years ago, and I was diagnosed 1 year ago. I feel that he most likely had it too.

Cindy

[mmaccartney]

My grandmother had digestive problems when I was young. She had her gall bladder removed, but that didn't help...in fact it seemed to trigger more problems. Before she lost her mind to dimensia and altzheimers (sp?)...which I think were contributed to by celiac...she would only eat very plain, very basic foods, no sauces, no breads, etc. She was a private person, pethaps she new and never wanted to tell anyone. She is now in a nursing home, her mind is totally gone.

I worry for my mother who is starting down the same path as her mother. I am the first diagnosed celiac in the family, and my genetics gurantee my mother has the gene. Also both my brothers have a 75% of having one of the genes that I have too since I got one from mom and one from dad. My one brother is showing symptoms as well. Both had the celiac panel serology performed and came back negative, but I suspect they are celiac as well. It's genetic, and I do see symptoms in them.

[Judyin Philly]

What sad stories you've all endured..I'm sorry for all your pain.

I'm positive my mom had it and it contributed to her death.

She passed away in a nursing home 4 months after my dx. I'm not sure if anyone else in the family had it as 'we didn't talk about 'those things' and i sure didn't know what celiac was after being dx'd with IBS for 20 years....Mom and i talked about the 'big D' and she had all the other same issues I did right down the line,,,symptom to symptom

judy in philly

[Laura]

I never met my mother's father, because he died before I was born. But this is what I know about him: Irish-American, lifetime of nosebleeds among other problems, died of leukemia. Seems like a possibility.

[tiredofdoctors]

You know . . . . I hadn't thought much about it . . . but we've always laughed about my mother's D problem! We call it "the sweats" because you break out in a cold sweat when you're out somewhere looking for a bathroom! My dad has diverticulosis, and when he doesn't watch what he eats, diverticulitis, but don't know about anything else. My mom, though, she's had it -- well, my whole life.

Come to think about it -- even though I have the "brain" type -- even as a kid, I had diarrhea all the time. They blamed it on antibiotics, because I was always sick, but I was always taking "Lomotil" for the big D. In fact, one time, for THREE MONTHS -- I remember it because I was in the 5th grade, I was on a diet that I could only have rice, baked potato (both with no butter), then they added baked chicken breast that was pressed so that all the oil (and moisture) would come out, then applesauce. I finally stopped having the big D after the three months. Oh yeah, then they made drink buttermilk -- yuck!!! Then, they started incorporating foods really slowly into my diet over the next 5-6 months. As an adult, I was told that I had IBS, I was told that I had ulcerative colitis when I was pregnant with my son ( had to be hospitalized ), but they always said it was due to stress.

Funny, though, I don't have antitransglutaminase or antiendomysial antibodies, and my villi are perfect. Hmmmm . . . that's kind of strange . . .

[kabowman]

My mother and sister both have tummy problems and refuse to think it might be diet related other than lactose. My sister is getting ready to have her gall bladder removed - without trying an elimiation diet. My mom will spend weeks in the bathroom - litterally.

I told my mom about my symptoms, what triggers them, etc. and she told me my grandmother, her mom, had those same symptoms - she died in her 60's.

My mom told me, both her sisters, who have had their gall bladders removed, now have problems with gluten but she still won't accept that she may have problems too. I have one aunt who cannot have nightshades.

Crazy - they are young enough to fix this and live a much more comfortable life but just refuse...their choice and I have stopped stressing over it but it still bugs me. They have the info, they chose not to use it.

[schuyler]

I'm sure that my dad has celiac, but at this point he is not willing to be tested or go gluten-free (although I think he's getting closer to going gluten-free).

Danielle

[pixiegirl]

My mom has Celiac I'm sure of it, she has the big D all the time but will not give up bread under any condition, she is 80 and in excellent health and can't understand why she should give it up. When the big D gets out of hand she stops with the gluten and the runs stop right away. sigh.

My brother is a maybe, he eats a lot of tums.... but although he is accomadating for my need to be gluten-free (to some extent) I really think he thinks I made it up. However his plate if pretty full right now, he was diagnosed with mouth and tongue cancer (does not smoke, never has and doesn't drink much alcohol, 2 big risk factors but.... he is been addicted to diet soda all his life (another risk factor)) about 2 years ago and its not got a great cure rate... however after numerous surgeries (none disfiguring thank god) he seems to be... well.... he's not had a reoccurance in 1.5 years now, so we are hoping that he's beat it.

I think he just can't deal with anything else right now so.... we'll see about the future. My dad had stomach problems all his life but he also had a super high stress job so I have no idea if he had any Celiac problems.

Susan