Grr...

[Roda]

My mom told me the other day that my dad was going to the doctor. He has had a change in bowel habits and it has him concerned. I casually told her that he needed to mention to the doctor that his daughter and one grandson has celiac disease and see if they could do an EGD also while they were doing a colonoscopy (already figured that was where he was headed). He does have symptoms, he doesn't think they are though, that would warrent an EGD. He has had chronic reflux/heartburn as long as my memory serves me. He would take Brioschi like it was going out of style for years. When I was about 7ish he had some of his bowel removed because it twisted and became gangranous. He has been on Protonix for gosh knows how long. No matter his weight he always has this protruding belly. He belches like a sailor. He has low phosphorus, low cholesterol/triglicerides (had the same thing pre diagnosis), and low b12 (could be from the extreme long term PPI usage), and tingling in his feet (neurologist has him taking b12 for this). Wow, and he doesn't think he has symptoms! He did get blood tested about 1.5 years ago and according to his pcp it was normal, but he never recieved a copy or questioned the results. He did go to his appointment and told him about the family history of celiac. According to my mother, the doctor brushed it aside saying that the insurance wouldn't pay for an EGD and scheduled him for a colonoscopy which I agree he should have. He said back to the doc that it was fine with him since he doesn't have any symptoms anyway. So I wonder what they all will think if/when his colonoscopy comes back normal and he is still having issues. I guess he will probably just accept it as "normal" now. I feel so sad that it is being dismissed by the doctor and him. It is really hard to deal with sometimes and I think I am finaly ready to let it go and not get into discussions with them anymore when my parents bring health related topics up. I will just have to listen and bite my tongue and reply with something like, "I hope (fill in the blank) can figure out what is bothering them." Sorry for the long rant...

[Elfbaby]

I see a pattern here. Family members of confirms Celiacs do not want to be tested. It makes sense in a selfish kinda way. After all, they have watched someone they love struggle to stick to a VERY strict diet (which, lets admit, takes away A LOT of the fun food). As long as they arent diagnosed too, they wont have to deal with giving up the foods they love, even if they are having a bunch of symptoms that look connected. I recently had this discussion with my mom. I told her it was genetic and she might consider testing if her tummy kept bothering her. She said, that doesnt mean you got it from me, could be your dad. My dad refuses to acknowledge it at all. My sister does want to listen but at least she cant blame it on the other parent, lol.

[cahill]

My mom told me the other day that my dad was going to the doctor. He has had a change in bowel habits and it has him concerned. I casually told her that he needed to mention to the doctor that his daughter and one grandson has celiac disease and see if they could do an EGD also while they were doing a colonoscopy (already figured that was where he was headed). He does have symptoms, he doesn't think they are though, that would warrent an EGD. He has had chronic reflux/heartburn as long as my memory serves me. He would take Brioschi like it was going out of style for years. When I was about 7ish he had some of his bowel removed because it twisted and became gangranous. He has been on Protonix for gosh knows how long. No matter his weight he always has this protruding belly. He belches like a sailor. He has low phosphorus, low cholesterol/triglicerides (had the same thing pre diagnosis), and low b12 (could be from the extreme long term PPI usage), and tingling in his feet (neurologist has him taking b12 for this). Wow, and he doesn't think he has symptoms! He did get blood tested about 1.5 years ago and according to his pcp it was normal, but he never recieved a copy or questioned the results. He did go to his appointment and told him about the family history of celiac. According to my mother, the doctor brushed it aside saying that the insurance wouldn't pay for an EGD and scheduled him for a colonoscopy which I agree he should have. He said back to the doc that it was fine with him since he doesn't have any symptoms anyway. So I wonder what they all will think if/when his colonoscopy comes back normal and he is still having issues. I guess he will probably just accept it as "normal" now. I feel so sad that it is being dismissed by the doctor and him. It is really hard to deal with sometimes and I think I am finaly ready to let it go and not get into discussions with them anymore when my parents bring health related topics up. I will just have to listen and bite my tongue and reply with something like, "I hope (fill in the blank) can figure out what is bothering them." Sorry for the long rant...

R ,I am so sorry ((HUGS))

I have also gotten to the place where I feel that talking to my family (except my daughters) is pointless. I REALLY get tired of them looking at me like I am crazy when I suggest they get tested.They have accepted that I have celiacs but they dont understand why they need to be tested They dont WANT to understand

Your dad really needs to see the test results! My daughter had my granddaughter tested (SHE THOUGHT).The doc said it came back negative. When my daughter got a written copy of the test results they had only tested her for anemia. The doc said because she was not anemic she could NOT be celiac. HE NEVER ran a celiac panel

Message me and let me know when you are coming up for vacation so we can get together

[Roda]

R ,I am so sorry ((HUGS))

I have also gotten to the place where I feel that talking to my family (except my daughters) is pointless. I REALLY get tired of them looking at me like I am crazy when I suggest they get tested.They have accepted that I have celiacs but they dont understand why they need to be tested They dont WANT to understand

Your dad really needs to see the test results! My daughter had my granddaughter tested (SHE THOUGHT).The doc said it came back negative. When my daughter got a written copy of the test results they had only tested her for anemia. The doc said because she was not anemic she could NOT be celiac. HE NEVER ran a celiac panel

Message me and let me know when you are coming up for vacation so we can get together

Will do C! Of all people I know you understand how this frustrates and makes me sad.

[IrishHeart]

Sorry, Roda...I feel your frustration and I know NOW that my Dad certainly suffered from--and ultimately died from --complications from gluten. I recently was tested and I carry two DQ2 genes--one from each parent. My Mom has accepted it well and at 84 has decided she will "try gluten lite". Since she is relatively healthy and active (in better shape than I am!) I am not pushing her on this.

My family, however, is another story. They all know how bad I was for 3 years pre-Diagnosis and yet, not one of them will get tested. I sent them --both sides of my family--all a long letter, detailing the genetic test results, my horror story, and a list of symptoms related to celiac /gluten intolerance. Took me days to compile that info and I even sent xeroxed ones to those without internet. I worry about them all and so, I did it out of love. Siblings, nephew, nieces, and 36+ cousins...

here is what in got in response:

:unsure:

So, you are not the only one who preaches to deaf ears. And frankly, it IS very SAD because they certainly can see what happened to me (some of them thought I was dying) and how long my recovery will be AND they are all loaded with autoimmune diseases (crohn's diabetes, asthma, hypothryoid, IBS, GERD,depression, anxiety, etc...) and they will not consider testing or even a test-run gluten-free diet??!!

Breaks my heart...but there comes a point where my worrying becomes detrimental to my recovery. As someone else on here reminded me, they are all grown-ups and we cannot make anyone see the light.

Sometimes, I find it horribly ironic that in the months before he died from kidney failure (he had many gastro symptoms his whole life and cardio issues as well, high BP, anemia and a serious bleeding disorder no one could figure out) , my celiac triggered for good and had me ill and in pain 3 years before I figured it out...and if only I knew back then what I know now...well..I can't even go there in my head because it hurts too much. I cannot save him now, and I guess I cannot save my family members either--if they won't hear my pleas.

I hope your Dad reconsiders.

[Roda]

I see a pattern here. Family members of confirms Celiacs do not want to be tested. It makes sense in a selfish kinda way. After all, they have watched someone they love struggle to stick to a VERY strict diet (which, lets admit, takes away A LOT of the fun food). As long as they arent diagnosed too, they wont have to deal with giving up the foods they love, even if they are having a bunch of symptoms that look connected. I recently had this discussion with my mom. I told her it was genetic and she might consider testing if her tummy kept bothering her. She said, that doesnt mean you got it from me, could be your dad. My dad refuses to acknowledge it at all. My sister does want to listen but at least she cant blame it on the other parent, lol.

I gave up long ago with my brother who I know without a doubt has celiac. I guess I need to give up the fight with my dad too. I have to respect their decision good or bad.

[Roda]

Sorry, Roda...I feel your frustration and I know NOW that my Dad certainly suffered from--and ultimately died from --complications from gluten. I recently was tested and I carry two DQ2 genes--one from each parent. My Mom has accepted it well and at 84 has decided she will "try gluten lite". Since she is relatively healthy and active (in better shape than I am!) I am not pushing her on this.

My family, however, is another story. They all know how bad I was for 3 years pre-Diagnosis and yet, not one of them will get tested. I sent them --both sides of my family--all a long letter, detailing the genetic test results, my horror story, and a list of symptoms related to celiac /gluten intolerance. Took me days to compile that info and I even sent xeroxed ones to those without internet. I worry about them all and so, I did it out of love. Siblings, nephew, nieces, and 36+ cousins...

here is what in got in response:

:unsure:

So, you are not the only one who preaches to deaf ears. And frankly, it IS very SAD because they certainly can see what happened to me (some of them thought I was dying) and how long my recovery will be AND they are all loaded with autoimmune diseases (crohn's diabetes, asthma, hypothryoid, IBS, GERD,depression, anxiety, etc...) and they will not consider testing or even a test-run gluten-free diet??!!

Breaks my heart...but there comes a point where my worrying becomes detrimental to my recovery. As someone else on here reminded me, they are all grown-ups and we cannot make anyone see the light.

I hope your Dad reconsiders.

Thanks. I don't think he will reconsider. He wouldn't want to pay for the test anyway. In his mind he does not have any symptoms at all. I'm done beating a dead horse. I did it long ago with my brother. I just yes my brother to death when he starts talking about his health issues.

[IrishHeart]

Thanks. I don't think he will reconsider. He wouldn't want to pay for the test anyway. In his mind he does not have any symptoms at all. I'm done beating a dead horse. I did it long ago with my brother. I just yes my brother to death when he starts talking about his health issues.

yeah,my sister with diabetes (type 1), hypothryoid, and a few other issues told me "I don't have bowel issues like you!!" (she did not read carefully what I sent apparently)

Perhaps I will have to let it go too...

[aeb]

I have mentioned trying gluten free to my sister a few times. Her response is always...but then what would I eat. UMMMMM.....have she not seen the shelves full of gluten free foods in the house. I probably have more yummy snacks than she does, and they aren't even all sugary. She always mentions that I get anxious, tired, and snippy (to be polite) when I get glutened when my parents take us out to dinner (they all see it as a special occasion, I see it as playing russian rulet). Yet, she is much more anxious, snippy, and tired than I am. It is fear of the known restrictions that puts people on the defensive. And yes, you do "get used to" feeling sick, after so many people told me I was exaggerating, making things up, having mental issues, etc....I thought that I was and everyone must feel as sick as I did. Our family members just don't realize they aren't healthy but can be. I have decided to hope that eventually they will decide to try it on their own, I can't force them.

[GlutenFreeManna]

I have the same problem with my family members. My mom recently called me to let me know she had been having digestive issues and was going in for a colonscopy. I urged her to get an endoscopy done at the same time with biopsies to test for celiac. I also urged her to at least ask for the blood panel tests and sent her a link to which tests to ask for. So then this past week I spoke with her on the phone and asked if she had spoken with her dr about testing for celiac. No. She went in for the coloscopy and it looked clear--no polyps or anything. So the dr is just giving her more meds for her symptoms. I asked if she was planning on getitng the celiac blood tests and she said she didn't think she needeed them since the dr gave her meds for her symptoms. I asked her if they knew what CAUSED her symtpoms and she said no, but as long as it wasn't colon cancer the dr didn't seem too concerned...grr...Of course my mom's mom nearly died from intestinal cancer of unknown cause as well...I have begged them both to just get the blood tests. I am giving up now because I think they would just prefer to live with the pain, take pills and eat whatever they want.

[Roda]

I have the same problem with my family members. My mom recently called me to let me know she had been having digestive issues and was going in for a colonscopy. I urged her to get an endoscopy done at the same time with biopsies to test for celiac. I also urged her to at least ask for the blood panel tests and sent her a link to which tests to ask for. So then this past week I spoke with her on the phone and asked if she had spoken with her dr about testing for celiac. No. She went in for the coloscopy and it looked clear--no polyps or anything. So the dr is just giving her more meds for her symptoms. I asked if she was planning on getitng the celiac blood tests and she said she didn't think she needeed them since the dr gave her meds for her symptoms. I asked her if they knew what CAUSED her symtpoms and she said no, but as long as it wasn't colon cancer the dr didn't seem too concerned...grr...Of course my mom's mom nearly died from intestinal cancer of unknown cause as well...I have begged them both to just get the blood tests. I am giving up now because I think they would just prefer to live with the pain, take pills and eat whatever they want.

Is your mother a long lost sister to my dad? In all seriousness, I understand the frustration. My father too is content to take what the doctors say as gospel and to take a million pills. He only disagrees when it is his idea to disagree. When I asked my mother if she truely thought a life time of terrible heartburn/acid reflux was normal for anyone, she said "well no." Unless something is my father's idea it ain't happening...My dad is 64 and for the most part is very active and "healthy" and if he would just get the scope/biopsy and find out I think his quality for the rest would even be better. Why not live life the best you can feel?

[Roda]

I have mentioned trying gluten free to my sister a few times. Her response is always...but then what would I eat. UMMMMM.....have she not seen the shelves full of gluten free foods in the house. I probably have more yummy snacks than she does, and they aren't even all sugary. She always mentions that I get anxious, tired, and snippy (to be polite) when I get glutened when my parents take us out to dinner (they all see it as a special occasion, I see it as playing russian rulet). Yet, she is much more anxious, snippy, and tired than I am. It is fear of the known restrictions that puts people on the defensive. And yes, you do "get used to" feeling sick, after so many people told me I was exaggerating, making things up, having mental issues, etc....I thought that I was and everyone must feel as sick as I did. Our family members just don't realize they aren't healthy but can be. I have decided to hope that eventually they will decide to try it on their own, I can't force them.

Kinda like when my brother was patronizing me one day and I just had enough of his crap. I told him that I was confident that he had celiac and went into gory detail about all the nasty things that could come to pass. He huffed and puffed and said "so be it." He said he would never get tested because he doesn't want to know and it didn't matter anyway because he would rather die than to give up beer and bread. Oh the irony of that statement...

[IrishHeart]

Yet, she is much more anxious, snippy, and tired than I am. ..... Our family members just don't realize they aren't healthy but can be.

wow--so you have met my family??

I agree. I thought that by watching me deteriorate for 3+ years, they would see why it is essential for them to take charge and be well. They all suffer these symptoms.

My husband says "they haven't been pushed to the wall like you were to want to change things". He's right. As long as the doctors keep "symptom-managing" them, they will do as they are told and "live with it"...Not me. been there/ done that!!

The sad part is? I will get well and feel great in time.....and they will continue to go downhill.

I see I am not the only one who cannot get them to see the hereditary aspect of all this. I even explained the gene test results to them--in plain English! sent them things to read, describing in detail the horrible things I have dealt with.... Not making a difference at all....

ah well, when someone figures it out and wants to be well, I'll be here to help them get acclimated to the lifestyle. It's all I can do.

[kareng]

My parents are in thier 80's. they haven't told thier doc about my Celiac. Probably wouldn't matter. He wouldn't know to test them. They would just accept whatever they were told by the doctors.

They don't have any symptoms that could be Celiacs. My mom is always cancelling things because of diarhea. My dad has gas that would kill a canary in a mine.

I have decided that the only ones I have any "control" over on getting tested are my self & my boys. They don't want to have celiac disease but they have been tested & know what to do about re-testing later.

[IrishHeart]

My parents are in thier 80's. they haven't told thier doc about my Celiac. Probably wouldn't matter. He wouldn't know to test them. They would just accept whatever they were told by the doctors.

They don't have any symptoms that could be Celiacs. My mom is always cancelling things because of diarhea. My dad has gas that would kill a canary in a mine.

I have decided that the only ones I have any "control" over on getting tested are my self & my boys. They don't want to have celiac disease but they have been tested & know what to do about re-testing later.

yup! my Mom's long-simmering anxiety, chronic constipation, GERD, bouts with insomnia, and hypothyroidism aren't symptoms either.... She works out at a gym and is active and is 84--- and she said she's "too old to change"...ok, Ma..whatever you want.

She did consent to changing her cereal to gluten-free Chex....hey, it's a start...

[GlutenFreeManna]

Is your mother a long lost sister to my dad? In all seriousness, I understand the frustration. My father too is content to take what the doctors say as gospel and to take a million pills. He only disagrees when it is his idea to disagree. When I asked my mother if she truely thought a life time of terrible heartburn/acid reflux was normal for anyone, she said "well no." Unless something is my father's idea it ain't happening...My dad is 64 and for the most part is very active and "healthy" and if he would just get the scope/biopsy and find out I think his quality for the rest would even be better. Why not live life the best you can feel?

Sounds like it! My mom is also in her 60's so maybe it's something about that generation.

[IrishHeart]

My mother, sister and the rest...all believe that the doctor is right and they should follow their recommendations and do not question anything. They take all their meds and continue to feel like crap.

They KNOW all the mistakes that were made during my search for an answer and yet, they still do not see it...sigh

My experiences tell me otherwise. I do NOT believe anything any of them say anymore.

[kareng]

My parents have a friend who is a retired HS biology teacher. Therefore, she knows everything about Celiac among other things. She told them it was silly that I was so careful. She has friends with celiac disease who just pick the croutons off the salad, etc.

I told my parents that the Celiac Center in Chicago says that is wrong. They now think that they are my docotors. Because they are obviously experts and specialized docs, they know what they are talking about. So my parents don't question anything I say except the part about them being tested. I think they feel that they have made it this far, they aren't changing anything.

[IrishHeart]

My parents have a friend who is a retired HS biology teacher. Therefore, she knows everything about Celiac among other things.

:lol:

When I told my Mom to ask her doctor about her fatigue, insomnia and "sadness" after my Dad died, and to please check her thyroid levels and her Vit D....her doctor (the one who also treats my sister for her type 1 diabetes, hypothyroid, high BP and a dozen other things)

snarked "Is SHE (meaning me) a doctor"?

My Mom replied "No, but she seems to know a lot more than any of the dozens she saw in the last 3 years." (go, Mom!)

BTW..Mom's TSH was 9.4...meaning serious hypothyroid and her D? under 20...so there, jerkwad!

I told my sister to tell this same doctor I have celiac and had the genetic test done with double DQ2 genes..and he --I am quoting her now---"made a note in my chart"....that's it...HULLO!!???? He's treating my sister and mother for autoimmune diseases, GERD, high BP, depression and fatigue....but he "made a note of it??"" ......for pete's sake!!!

ARRGH!!!

[mushroom]

Sounds like it! My mom is also in her 60's so maybe it's something about that generation.

Now, now, let's not go dissin' the older generation You should be talking about my parents' generation - they were the Dr. God generation, never questioning - drove me flamin' nuts, and killed them!!!

[YoloGx]

Unfortunately the level of denial in many celiac or severe gluten intolerant families often is astronomical. It often takes a lot for someone to begin to notice the relation between health and what they eat, especially something as extreme as what we have to do to be healthy. And many, after seeing "us" and what we go through, don't want to be bothered. They worry about travelling, social outings and the like, and often say they don't have it as bad as we do, assuming they even acknowledge the problem at all. Some even do get tested but it often comes back negative (given the degree of difficulty of getting a positive endoscopy--which unfortunately still is the AMA's yardstick) even though its clear they actually have a problem and feel better without gluten.

So I don't entirely blame them although it is frustrating. My family actually now tends to bait me about it-- so basically I now stay just away and change the conversation if I do happen to speak to them. I think they are all kind of messed up in their brains due to the gluten intolerance--and there is not much more I can say. They will change their minds if and when they want to.

If more people who have this condition acknowledged it and lived the life, things would be easier for us, i.e., more set up across the board, like they are in Europe rather than how they are here in the States. As is we have a long way to go. But then for us here in the States it hasn't been that long that this gluten problem has been acknowledged at all for the severity (and commonality) of problems it actually causes.

[GlutenFreeManna]

Now, now, let's not go dissin' the older generation You should be talking about my parents' generation - they were the Dr. God generation, never questioning - drove me flamin' nuts, and killed them!!!

Sorry Shroom! I don't know how old you are but I often think of you as pretty young. Your're right though, stubborn people come in all ages. Maybe I should blame the gluten instead.

[mushroom]

Sorry Shroom! I don't know how old you are but I often think of you as pretty young. Your're right though, stubborn people come in all ages. Maybe I should blame the gluten instead.

Young at heart, old enough to know better, prettier when I was younger

I don't think with my parents' generation it was stubborness, more like "doctor knows best." If doctor says so, well it must be so. I was a rebel right from the start, and my whys???? didn't end when I was five or seven - in fact, they became more frequent

[YoloGx]

am the same way. will be 62 soon! but still young in many ways. Young or old, having an open mind or not seems to be a personal rather than a generational decision.

[IrishHeart]

Young at heart, old enough to know better, prettier when I was younger

I don't think with my parents' generation it was stubborness, more like "doctor knows best." If doctor says so, well it must be so. I was a rebel right from the start, and my whys???? didn't end when I was five or seven - in fact, they became more frequent

Ditto, ditto and ditto, dear 'shroom!

I was wondering who would pick up on that"people in their 60's" thing I know our sweet GlutenFree Manna did not mean any disrespect for us "older people" (I'm 54) :lol: Now, I'm just teasing here!!

I agree. My Dad did whatever the doctor said. I went to dozens of appts. with him as he gradually declined and he would never ask a single question. (This thing killed him--no question in my mind.)

My Mom, who is hard of hearing, didn't hear half of what was said, so they would come home after an appt. and not know what they were supposed to do or if they did know, they didn't know WHY they were doing it!! ARRGH! I became the interpreter and the negotiator and the woman who annoyed the crap out of the doctors with my WHY WHY WHY queries. And I live 160 miles away, so it was tricky.

PS. I wonder how many older people can HEAR what is being said... When I ask my Mom, "why don't you ask him to speak up,honey?" she said "it's embarrassing"...

When I got really sick, I did not stop until I found out WHY I was sick. I do not accept being placated with drugs and a pat on the head. I want answers. I've been that way all of my life. Honestly? That relentlessness (some would say stubbornness )saved my life.

Now, after my long odyssey to get diagnosed, my Mom sees the value in asking why, the importance of never leaving the doctors' offices unsatisfied and to ask for copies of her tests --with an explanation attached.

The time for viewing doctor as god (the Marcus Welby MD thing--now, that's showing my age has passed.

Diseases like celiac/gluten intolerance do not manifest in ways that fit the standard diagnosis protocol the AMA has in place (as many of us have learned) and unless that changes drastically in the immediate future, the patient will have to be a strong self-advocate. Otherwise, his/her health issues will continue to be a problem.

The difficult part is... with most of us, we were so sick and "out-of-it" it wasn't easy to do.