Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


  • You've found your Celiac Tribe! Join our like-minded, private community and share your story, get encouragement and connect with others.

    💬

    • Sign In
    • Sign Up

Archived

This topic is now archived and is closed to further replies.

LonelyWolf307

Coping With Relatives That Don't Understand

Recommended Posts

I'm really at a loss for what to do at the moment.

I'm 16, so I still live with my dad. He doesn't quite seem to understand that because I'm a celiac, I can't have ANY traces of gluten, and that it's a lifelong commitment, and seems to be in denial about the fact that I have the disorder. He's always telling me that he's sure I'll be able to eat anything I want after the damage to my small intestine is healed, and seems to think it was caused by chronic constipation (which was one of the ways my celiac manifested itself), and it isn't celiac. No matter how many times I tell him that I can never have anything with gluten in it again when he starts in he just tells me that he's sure I'll be able to have traces of it without any problems at all eventually, and often tries to get me to eat things with gluten in them anyway! He was a nurse in the Navy, and is quite convinced that he's right about the matter because he has more of a medical background than I do (I'm only a registered nursing assistant, soon to be trained medication assistant, and work in a nursing home, planning on becoming a lisenced practical nurse or a nurse practitioner in the future). How am I supposed to deal with this, I'm afraid he'll start trying to accuse me of having an eating disorder or something if I keep turning the foods that would gluten me down (it wouldn't be the first time family members have pointed fingers), and he just refuses to believe or understand that I really do need to avoid even the smallest trace of gluten.

Does anyone have an idea of how to manage this? So far I just reject food he tries to feed me that I know is about as good for me as rat poison, and I buy my own food, but I've pretty much gotten to the point where enough is enough. Help!!!

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I'm kinda at a loss on what to tell you. I had a father who was ALWAYS RIGHT as well. It extreamly frustrating to talk to someone who thinks that they are always right when you know that they are wrong. Maybe you could have him discuss the situation with your doctor or find some lititure to help teach him more about the disease. Maybe then he would become more receptive. Either way regardless of your relatives attitudes about your wieght or eating habits just make sure your eating a healthy balanced diet with NO GLUTEN in it no matter who tries to give it to you.....hopefully once your healed you'll be able to be at a healthier wieght.


Myself-Age 25....I have had symptoms since at least 1998 if not since infancy (was diagnosed with malnutrition as a small child)...Positive results with gluten free diet!

Hannah-Age 5.....Has symptoms....Inconclusive blood tests....Positive diet response to both gluten free and lactose free!

Grace-Age 1.....Born at 29 weeks due to me having celiac....Has reflux and a feeding tube.

Husband-Not Celiac......has found that he does feel better when not eating allot of gluten.....is gluten free at home.

Share this post


Link to post
Share on other sites

You're doing the right thing - you don't have to convince him, you just have to make your own choices. It's very disappointing that he won't believe you, and if you'd like to present him with further evidence, you can get the NIH consensus paper on celiac disease online (google it to find it easily) and present him with published study abstracts off of pubmed. But you control what goes into your mouth, and all that matters is that he respect your decision, regardless of whether or not he agrees with it.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

Share this post


Link to post
Share on other sites

The best way to deal with this is to just say no-thank you, and then change the subject every single time by asking him a question that is NOT related to food. this way you don't argue with him, you get off the subject of food altogether, and it gives your dad the same answer each time to his questions. He will eventually just stop asking you.

Start listening to the news on the radio, and ask his opinion on the stories. Ask his advice about working in the medical field (how to deal with emotions, being around illness, how not to get depressed, how to stay focused). Ask him questions about sports, politics, the weather, christmas, next summer, the car, taxes, city hall, the state of education today, money, etc.

Not only will this deflect the gluten questions, but it'll give you a chance to learn a few new things about how your dad thinks and what his feelings are about all sorts of things.

Hope this helps.

Share this post


Link to post
Share on other sites

Thanks for the advice, maybe distracting him and getting off the subject is the best idea. As for the ED accusations, the sad part is I'm at a pretty normal weight, mostly because I started out pretty overweight mind, but still (5'7" and 126 pounds, from 180 or so). I've only got about a year of school left, and after that I'll be moving out, so there's not much longer that I have to deal with it. Thankfully when I go and visit my mom and soon-to-be stepfather, they're very understanding and will take me grocery shopping to find some foods I can actually eat, and have learned to enjoy some of the gluten-free foods I make, so once every other weekend I don't have to buy all my own foods which is nice. Thanks again!

Share this post


Link to post
Share on other sites
Thanks for the advice, maybe distracting him and getting off the subject is the best idea. As for the ED accusations, the sad part is I'm at a pretty normal weight, mostly because I started out pretty overweight mind, but still (5'7" and 126 pounds, from 180 or so). I've only got about a year of school left, and after that I'll be moving out, so there's not much longer that I have to deal with it. Thankfully when I go and visit my mom and soon-to-be stepfather, they're very understanding and will take me grocery shopping to find some foods I can actually eat, and have learned to enjoy some of the gluten-free foods I make, so once every other weekend I don't have to buy all my own foods which is nice. Thanks again!

You've already gotten some great advice and you sound like a mature level headed person. Hang in there and if things get real bad perhaps spending more time with your Mom might help aleviate some of the stress.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Have you tried printing the info from the NIH out for him and highlighting the part about it being a life long committment ? And the reprocussions of not following the gluten-free diet. I would just present it to him in a non threatening way. Like posting it on the frig. With a big heart and a love you note. Subtle, but effective. :)

You could also start cooking some of your own gluten free meals to show him that you are responsible enough to deal with this. Just in case he doesn't think you are serious.

And you can also show him that gluten-free food can be just as good as gluten food.

If he sees you eating healthy, he won't get the impression that you have an ED.

Hope this helps. :)


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

Share this post


Link to post
Share on other sites
I'm really at a loss for what to do at the moment.

I'm 16, so I still live with my dad. He doesn't quite seem to understand that because I'm a celiac, I can't have ANY traces of gluten, and that it's a lifelong commitment, and seems to be in denial about the fact that I have the disorder. He's always telling me that he's sure I'll be able to eat anything I want after the damage to my small intestine is healed, and seems to think it was caused by chronic constipation (which was one of the ways my celiac manifested itself), and it isn't celiac. No matter how many times I tell him that I can never have anything with gluten in it again when he starts in he just tells me that he's sure I'll be able to have traces of it without any problems at all eventually, and often tries to get me to eat things with gluten in them anyway! He was a nurse in the Navy, and is quite convinced that he's right about the matter because he has more of a medical background than I do (I'm only a registered nursing assistant, soon to be trained medication assistant, and work in a nursing home, planning on becoming a lisenced practical nurse or a nurse practitioner in the future). How am I supposed to deal with this, I'm afraid he'll start trying to accuse me of having an eating disorder or something if I keep turning the foods that would gluten me down (it wouldn't be the first time family members have pointed fingers), and he just refuses to believe or understand that I really do need to avoid even the smallest trace of gluten.

Does anyone have an idea of how to manage this? So far I just reject food he tries to feed me that I know is about as good for me as rat poison, and I buy my own food, but I've pretty much gotten to the point where enough is enough. Help!!!

Dear LonelyWolf307,

Despite the fact I am 23, both of my parents treat me that way. I am the only gluten intolerant person in our household. They do not understand (nor do they care to) how serious this is. I was accused of having an eating disorder when I was younger due to being so thin. I looked anorexic when I was younger. My father is one of those people that always knows everything about everything, even though I have done all of the research. It is not like I spend hours reading books and message boards for entertainment. People always complain about the youth. The youth deserves just as much trust and respect as the elders. Just because you are young does not mean you are stupid. I too, am tired of being judged by doctors, family members, and strangers alike. They should all keep their pie holes shut unless they know what they are talking about! I am so ill from an overgrowth of yeast that I have been unable to get a part-time job to help finance the business I started over two years ago. It is so frustrating. I am also a full-time college student with a ton of medical bills and school work. My needs always seem to be expensive or a hassle. Anyone's desires come before them half the time. I am being an ingrate because I want to be understood. News for those people: I am not taking crap from anyone anymore! You should do the same!

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

Share this post


Link to post
Share on other sites

NoGluGirl:

Loved reading your post in this thread...I am 49 now, and spent WAY too much time trying to appease my parents- they are narcissistic, basically - father was an alcoholic/workaholic and mom is 'borderline personality,' agoraphobic-type...I just finally accepted that they will NEVER love anyone 'properly,' not each other, not me, not my five siblings, not even themselves...I have a 'fine' relationship with them now...I just NO LONGER, EVER, expect them to be non-self-centered, even after 'they act' non-self-centered - it's always 'an act' and doesn't last...I also realize that self-centered people actually don't like other people very much, and just aren't very courageous, in general...

Good luck - Gina

To the 16 year-old who began this thread:

...MAYBE, just maybe?...could your Dad not want to accept that HE may have passed on the disease? My father didn't want to hear that the gene I have (DLA-HQ8) is probably from his genes. He also announced that he will not get tested, as he is too old, at 77, to change his eating habits, even though he has diabetes and neuropathy.


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

Share this post


Link to post
Share on other sites

You're very wise, Gina ;)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites
Have you tried printing the info from the NIH out for him and highlighting the part about it being a life long committment ? And the reprocussions of not following the gluten-free diet. I would just present it to him in a non threatening way. Like posting it on the frig. With a big heart and a love you note. Subtle, but effective. :)

I would recommend this too since health professionals often won't listen to any source outside the mainstream. NIH is about as mainstream as it gets!

Here's the link:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#8

The part about the lifetime diet is under Points to Remember.

Hope it makes a dent in that hard head of his!

Leah


The Queen of Hearts,

She made some tarts

All on a summer's day.

The Knave of Hearts,

He stole the tarts

And took them clean away.

Diagnosed at age 49 by biopsy 31 May 2006

Learning how to bake those tarts gluten-free!

Share this post


Link to post
Share on other sites
To the 16 year-old who began this thread:

...MAYBE, just maybe?...could your Dad not want to accept that HE may have passed on the disease? My father didn't want to hear that the gene I have (DLA-HQ8) is probably from his genes. He also announced that he will not get tested, as he is too old, at 77, to change his eating habits, even though he has diabetes and neuropathy.

I think it's more a case of he doesn't want to accept that I have a disorder that needs lifelong treatment, but that's a possibility too. In all honesty I think I got the gene from my mother's side of the family, there's a very extensive family history of severe allergies, and there have been a intolerances to gluten in a few of my mom's siblings, though they were only temporary. Who's to say, though?

I'll certainly print that out and at least read it myself. Thanks for the link!

Share this post


Link to post
Share on other sites

Wolf ;)

Well - I'm glad that I asked if perhaps the gene came from him...does he know you don't think it did?

Anyway - Perhaps that print out with the heart will help? I liked that idea for you - just to clarify, I was really addressiong NoGluGirl in the stuff about accepting the 'limitations' (disabilities?) of others...

So, I hope you'll actually post the print out on the frig, with the heart!

Jersey - thanks for the comment - NoGluGirl's post just sounded so darn familiar..."been there, done that"...learned that one can only hit their head against a wall So many times, before it really begins to hurt...best to stop it after a while...but, definitely worth 'trying' to get through... I don't regret my attempts, just wish I'd learned some things a little faster than it took me... woulda helped if someone older had helped me accept 'the not-always so pleasant truth''...

Good luck, youngins.

Gina


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

Share this post


Link to post
Share on other sites
NoGluGirl:

Loved reading your post in this thread...I am 49 now, and spent WAY too much time trying to appease my parents- they are narcissistic, basically - father was an alcoholic/workaholic and mom is 'borderline personality,' agoraphobic-type...I just finally accepted that they will NEVER love anyone 'properly,' not each other, not me, not my five siblings, not even themselves...I have a 'fine' relationship with them now...I just NO LONGER, EVER, expect them to be non-self-centered, even after 'they act' non-self-centered - it's always 'an act' and doesn't last...I also realize that self-centered people actually don't like other people very much, and just aren't very courageous, in general...

Good luck - Gina

To the 16 year-old who began this thread:

...MAYBE, just maybe?...could your Dad not want to accept that HE may have passed on the disease? My father didn't want to hear that the gene I have (DLA-HQ8) is probably from his genes. He also announced that he will not get tested, as he is too old, at 77, to change his eating habits, even though he has diabetes and neuropathy.

Dear FaithInScienceToo,

Are you sure we do not have the same parents? LOL! It is not fair that children have to pay for their parents' mistakes. I should not have to go without food because my father cannot resist that stupid $100 fountain pen display case! Who cares if he got a good deal and it was originally $400! You cannot spend money on things like that when there are bills to pay! No one understands why I am so angry.

I am tired of being judged. I am tired of worrying about money all the time. I am tired of having to explain myself, and being forced to justify my anger and hurt to everyone. :angry: I am tired of people who do not have the guts to go do things tell you to give up. At least I have tried. Thank you for your post.

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

Share this post


Link to post
Share on other sites
Does anyone have an idea of how to manage this? So far I just reject food he tries to feed me that I know is about as good for me as rat poison, and I buy my own food, but I've pretty much gotten to the point where enough is enough. Help!!!

It sounds like you're doing the best you can do and thats all that you can really do since it doesnt seem like he's going to change. I think for being only 16 you sound very responsible and are doing all you can to keep yourself healthy. I'm impressed. Just keep on doing what you're doing, taking care of yourself and eating gluten-free....whether he likes it or not.....its your body afterall. As long as you know the diet is life-long..and as long as you're in control of what you're eating...thats the most important thing. At some point you might just have to give up on trying to convince him and just accept the fact that he cant understand....as frusterating as that may be.

In the meantime I think you're doing a great job and at least your Mom does understand. :)


Rachel

Share this post


Link to post
Share on other sites

This sounds so familiar. Gina - good advise. Its been hard for me to accept that just because people are your family doesnt mean that they are going to care in a meaningful way.

Unfortunately, my relationship with my parents was corrupted all those years I was sick and no one knew why. They labeled me as "lazy" and told me to get out of their house. Even though ten years later I have a diagnosis they still talk to me as if Im not motivated, or I dont try hard enough. Basically, they condescend to me. They have never tried to educate themselves about celiac disease and despite my asking them to get screened no one in my family has done it.

This disease can ruin relationships, I know this firsthand. I basically lost all my friends and my family thinks Im basically a loser.

I dont have any advise for you, except to say be strong. Get the support from where you can, a friend or spouse, and say to heck with the rest. You can't make someone care enough to educate themselves. People have their opinions and theyre married to them unless they are compassionate and caring. Most people are not this way. They are self-centered as Gina pointed out.

Tsomo

Share this post


Link to post
Share on other sites

LonelyWolf,

I'm very sorry you have to deal with this. I have trouble getting my parents to understand how difficult it is for me to eat (and yet, my mother still mentions to my husband that she thinks I have an ED).

My best advice is to stop trying to convince him. It doesn't sound like he's a bad guy, just a little convinced of his own brilliance. I doubt he'd tie you down and force you to eat gluten, so smiling, nodding and changing the subject when he brings up his own misguided views of celiac will probably save you a lot of heartache and frustration.

One thing I think is really important to realize is that while our family members and friends may not understand celiac and often frustrate the hell out of us, they do love us and want what is best for us. We only become so educated and well-versed in celiac because we spend most of our waking hours reading up on it and thinking about it in some way or another. It is impractical to expect someone who doesn't have celiac to grasp the intricacies that we, as educated celiacs, know as well as the back of our hands.

Good luck and feel free to PM me with complaints and vents about your Dad - I've been there!

Elizabeth


ELIZABETH

gluten-free (04.17.2006)

corn-free (03.27.2007)

xanthan gum-free

Share this post


Link to post
Share on other sites

A few friends had a hard time understanding the whole gluten thing as did my parents...i related it to an alcoholic. In recovery, an alcoholic can't have a drink here or there or they will be back to square one--told them celiacs is like that--gluten, whether a trace or large amount will put me back to square one. they seemed to underatand the comparison--go figure :rolleyes:


Best RX? Ice Cream!

Positive Blood Test 2000

Negative Biopsy 2000

Share this post


Link to post
Share on other sites
This disease can ruin relationships, I know this firsthand.

Tsomo

Ain't it the truth ...

Well said, Tsomo.


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

Share this post


Link to post
Share on other sites
This sounds so familiar. Gina - good advise. Its been hard for me to accept that just because people are your family doesnt mean that they are going to care in a meaningful way.

Unfortunately, my relationship with my parents was corrupted all those years I was sick and no one knew why. They labeled me as "lazy" and told me to get out of their house. Even though ten years later I have a diagnosis they still talk to me as if Im not motivated, or I dont try hard enough. Basically, they condescend to me. They have never tried to educate themselves about celiac disease and despite my asking them to get screened no one in my family has done it.

This disease can ruin relationships, I know this firsthand. I basically lost all my friends and my family thinks Im basically a loser.

Thank you, reading this post made me realize that I'm not the only one who can't get their family to "GET IT!" Maybe they just can't? I don't know. My family is so stubborn (German) that the only way they would ever understand is if they each had my symptoms. They would actually have to feel it to believe it...or me. :( Who cares anymore, really. This is something we have to live with for the rest of our lives....why make it MORE stressfull by trying to explain it to people who just may never understand it.

Thank God for my husband and kids...they are what keeps me strong.

Share this post


Link to post
Share on other sites
Thank you, reading this post made me realize that I'm not the only one who can't get their family to "GET IT!" Maybe they just can't? I don't know. My family is so stubborn (German) that the only way they would ever understand is if they each had my symptoms. They would actually have to feel it to believe it...or me. :( Who cares anymore, really. This is something we have to live with for the rest of our lives....why make it MORE stressfull by trying to explain it to people who just may never understand it.

Thank God for my husband and kids...they are what keeps me strong.

Dear Veronica,

I understand the situation as well. My parents make it sound like I just do not want to work. Employers do not hire sick people! We are seen as a liability. Who cares if I can afford my medication? Dad wants another fountain pen, more ink (He already has more than 20 bottles), or yet another storage case. I am selfish, because I need special food. As a gluten intolerant individual, no one understands how dangerous a speck of the stuff is. But who cares? We just do not have the money, and there is nothing he can do about it. My parents eat out all of the time, $30 at least three days a week. They complain that is the only luxury they get! You know what I get? Nothing. I cannot even have underwear that do not fall apart (these are unraveling) until the next paycheck because of this crap! I am tired of worrying all the time. I am tired of paying for my parents' mistakes. I deserve better! I do the dishes, clean the fridge, help care for the dog, organize their stuff, even keep track of the bills, and I get treated like crap! :angry:

These people have no right to call me selfish or lazy. My father is the only man I have ever heard of that has to take a nap after playing Solitare on the computer on the weekend! My mother is on so many pills it is a wonder she even knows her own name! Why does it always have to be the daughter or son's fault? I am 23 years old, and I have been put through a lot of unnecessary stress as a result of my parents' irresponsibility. If people think I am terrible, screw them! They do not understand.

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

Share this post


Link to post
Share on other sites

Lonely Wolf,

Yes, you are doing a great job. Re the dad, well you could humor him & say you know you might be right dad, maybe in a few years when I am all healed up... (& no need to mention you will be out of the house by then) & you know I also like the idea of asking his opinion on other stuff etc, I think maybe he wants to be the great big hero for his little girl, & since he is semi medically educated he thinks he can help you in that area. Actually, if he ever heard anything about celiac, they used to teach that it was a kids disease & that you outgrew it. I just had a friend, school nurse by profession, that was amazed that I had celiac, she said you cannot have that it is a childhood disease... & then she asked me again "You still have it now????" I started to say yes, but I only look 60, I am really just 12!!!!!

Also, see if your mom will get you the book "Dangerous Grains" or get it from the library or PM me & I will mail your dad a copy. Maybe when he gets it out of the mailbox he will drop it on his toe :unsure: Oh & I can see it now, then he bumps his head after picking it up & gets some sense knocked into his little closed mind.

:lol:

Share this post


Link to post
Share on other sites
Unfortunately, my relationship with my parents was corrupted all those years I was sick and no one knew why. They labeled me as "lazy" and told me to get out of their house. Even though ten years later I have a diagnosis they still talk to me as if Im not motivated, or I dont try hard enough.

I was glad to read this. I've been dealing with this the last few years. I felt so miserable and yet I actually looked fairly healthy and I had all normal bloodowork. People started treating me like I was"lazy" which I'm not, or as if I was just out looking for attention. I went from being an A student to just barely passing my classes and just struggling to get anything done in a day. I kept getting told that i just wasn't trying hard enough, and god forbid I take part in some kind of fun activity and then of course that was the reason behind everything-- I was just too busy goofing off and partying all the time. I also got fired from my research job because as I continued to get sicker with no diagnosis my boss told me I "just wasn't up to meeting the intellectual demands of the job." I don't think he was too impressed with my foggy brain. Nevermind that for years before that I did an excellent job.

I started thinking that I actually was lazy, or that I just wasn't smart enough. I'm so glad to know now that there was a reason I was that way, even if its just for my own knowledge.

I'm really new to all this, but I'm learning fast how un-understanding people can be. I feel for all of you! At least when others don't understand, we can vent here and draw on the support of those that do know how tough it can be. :)


**NiKKi**

celiac newbie '06, Hashimoto's

*inconclusive blood tests

*positive response to gluten-free diet

Cornell University '07

Lance Armstrong: Quit? You know, once I was thinking of quitting when I was diagnosed with brain, lung and testicular cancer all at the same time. But with the love and support of my friends and family, I got back on the bike and won the Tour de France five times in a row. But I'm sure you have a good reason to quit.

Share this post


Link to post
Share on other sites

NoGluGirl;

You would think we have the same parents!!! Since my Mom left my Dad and had to move in with me and my family, I feel like I'm living with her! Not the other way around! She only pays us $200/month, for groceries,rent,bills etc... Nice cheap life for her. In the meantime I have to cut back on what I have to eat becasue my food is so much more expensive.

She goes to bulk stores, buys chocolate waffers, cookies, lots of treats I can't have(doesn't even offer my husband any treats...and he's not a celiac)!!. Never bought anything for me. Oh sorry when I was diagnosed she bought my a pkg of gluten-free pancake mix....LAST YEAR!!!!

It's not my mom's responsibility to take care of me now becasue I have my own house and own family, but atleast support me while you live in my house. This is hard enough!!!

Well enough about my problems....from what you have said about your Mom& Dad and the fact that you were accused of having an ED...I highly doubt you will be able to get them to understand this. I read that Celiac mimics Anorexia. While we are having a reaction to gluten sometimes we loose our appitites....which in turn causes us to eat less...or not at all (in my case). I haven't eaten more than 2 pears in 4 days...just feel like crap. Nothing I can do about it but wait until I feel better.

What I don't understand is in some cases parents will JUMP down your throat if they think you have an ED...but when there's a medical diagnoses as to why you can't eat, and constantly loose wieght....it's not good enough, or you are covering up an ED. They would rather lash out on a guess, becasue it's what they think.

All I can say is I thank God everyday I didn't turn out like my mother. You can learn alot from your parents...unfortuneatly it's not always positive.

Share this post


Link to post
Share on other sites

Hello I am new to the group. :D

As sorry as I am to read the actions of everyone's family members, it is such a relief to hear that I am not alone! I have diabetes in addition to this disease & some of the comments out of my father's mouth border on caveman mentality. Even concerning the diabetes. 'If you would just ____ (fill in the blank), then you probably wouldn't have diabetes any more.' ect., ect.

I have thought about printing out information to try and educate him, but I honestly don't think he is even interested. Way too much effort. He's one of these that thinks all illness is everyone's head, because he has been incredibly fortunate to be very healthy still yet in his 60's.

I have no idea if I inherited this from him or my mother, neither show any type of symptoms.

Share this post


Link to post
Share on other sites