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How To Approach Parents


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24 replies to this topic

#1 RashyA

 
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Posted 14 April 2012 - 09:39 AM

Hello all! So I am a self diagnosed celiac. I am positive my brother and myself have it.
Now, my dad has been extremely itchy and in my option gassy for years now. He goes to the doctor for the itch and they tell him he has an internal fungus. Celiacs are very yeasty right? He has been on all sorts of medications to "cure" it but it never works. I have been talking to him about how going gluten free has helped a lot. Of course he refuses to take my advice but I'm pretty sure he is the one who has given me and my brother celiac. :( any advice for trying to get him to realize he needs to get tested? I know he is in denial :unsure:
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#2 pricklypear1971

 
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Posted 14 April 2012 - 10:06 AM

He either will or he won't.

All you can do is lead by example, tell him how to get tested, point out the obvious and then shut your mouth.

De Nile just ain't a river in Egypt, and some people are so far down it they're almost in South Africa.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 captaincrab55

 
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Posted 14 April 2012 - 10:12 AM

Sounds like he has DH.. He needs to see a Dermatologist that understands DH...
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I'm a New Man Without GLUTEN!

#4 Marilyn R

 
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Posted 14 April 2012 - 03:28 PM

Hi Rashy,

My mom was diagnosed with it at Mayo Clinic in the early 1980's and was non-compliant the rest of her life. And she was an R.N. She lived in the North and I lived in the South and called her 1-3 times a week. I could always tell when she was about ready to crash so I'd fly up there and get her pedialyte and start her on bananas, rice, clear liquids. Then mashed potatoes. Then poached chicken. I'd keep her out of the hospital, and cook and freeze things for her to eat. She was a depression child and couldn't deprive herself of the foods she loved most, and there was no way I could talk her out of it. She would get angry when I would bring up the subject. Her role was mother and I was her child and even though she respected me, I realized early on she would never listen to me about celiac disease. When I came down with it, she told me it would be very difficult at first but I'd build up a tolerance to it (from her hospital bed in the nursing home she'd been in for six years).

So, long story short, if you have the names of the doctors your dad sees, I would write them a confidential letter identifying the symptoms your father has and request further testing. Keep it short and sweet and to the point, if you're typing it use a large font. Attach copies of pertinant medical articles for the doctor's perusal if they're interested. Include your father's DOB in the letter. If he hasn't listened to you so far, he probably won't listen to you about celiac disease. Your best strategy is to inform his docors and hope they will test him & he'll listen to them. If he's really bullheaded like my mom was, it just may fall on deaf ears, and you'll still love him for all those reasons you love him. I've worked in sales for 30 plus years and I couldn't "sell" Mom on gluten-free. I know it's painful to see those you love suffer when you're pretty sure you know the answer, and they choose to deny. Hope this helps out with the situation, let me know.
  • 2
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#5 RashyA

 
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Posted 14 April 2012 - 08:05 PM

Hi Rashy,

My mom was diagnosed with it at Mayo Clinic in the early 1980's and was non-compliant the rest of her life. And she was an R.N. She lived in the North and I lived in the South and called her 1-3 times a week. I could always tell when she was about ready to crash so I'd fly up there and get her pedialyte and start her on bananas, rice, clear liquids. Then mashed potatoes. Then poached chicken. I'd keep her out of the hospital, and cook and freeze things for her to eat. She was a depression child and couldn't deprive herself of the foods she loved most, and there was no way I could talk her out of it. She would get angry when I would bring up the subject. Her role was mother and I was her child and even though she respected me, I realized early on she would never listen to me about celiac disease. When I came down with it, she told me it would be very difficult at first but I'd build up a tolerance to it (from her hospital bed in the nursing home she'd been in for six years).

So, long story short, if you have the names of the doctors your dad sees, I would write them a confidential letter identifying the symptoms your father has and request further testing. Keep it short and sweet and to the point, if you're typing it use a large font. Attach copies of pertinant medical articles for the doctor's perusal if they're interested. Include your father's DOB in the letter. If he hasn't listened to you so far, he probably won't listen to you about celiac disease. Your best strategy is to inform his docors and hope they will test him & he'll listen to them. If he's really bullheaded like my mom was, it just may fall on deaf ears, and you'll still love him for all those reasons you love him. I've worked in sales for 30 plus years and I couldn't "sell" Mom on gluten-free. I know it's painful to see those you love suffer when you're pretty sure you know the answer, and they choose to deny. Hope this helps out with the situation, let me know.



Thanks so much for the advice and support. :)
I will talk to my mom and try to find out a way to talk to his doctors,
It's just so hard to not be able to help. I got glutened today and am now wanting
To rip my skin to shreds! Just don't know how he deals with it! :(
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#6 AVR1962

 
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Posted 14 April 2012 - 10:53 PM

This is a hard one, especially with family. We can give the facts, encourage testing but denial is so grand scale. I come from a family with all kinds of food allergies and most don't listen or make the connection to possible celiac. The times I have said anything, they just say, "I am glad I don't have that problem." When infact, I think they do and they cannot see it.

On just a slight different look at denial, my grandmother was diagnosed with diabetes, something that is well known. She went on meds but somehow she thought the meds were going to take care of everything I guess and she did nothing more to watch her diet, no exercise and it killed her.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#7 dani nero

 
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Posted 15 April 2012 - 02:08 PM

My entire family is in denial. None of them thinks anything in the world is worth giving up gluten. I've decided that if they ever realize it and need help I'll be there for them, otherwise I've given up on trying to convince them and not being believed.
Writing to the doctor is a good idea, but be prepared that the doc himself might be an idiot and not listen to you or stop looking the moment a test comes back negative. I hope things turn out well for you and that you'll get your dad to listen!
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#8 Marilyn R

 
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Posted 15 April 2012 - 05:34 PM

Thanks so much for the advice and support. :)
I will talk to my mom and try to find out a way to talk to his doctors,
It's just so hard to not be able to help. I got glutened today and am now wanting
To rip my skin to shreds! Just don't know how he deals with it! :(



My guess is that they have him on medications to treat his symptoms. I don't have DH but I was prescribed Lyrica by two specialists, rheumatalogist and neurolgist. It took me quite a while to actually try the stuff. It blocks your body's natural response. In my case, I found it blocked everything, and made me pass gas. I told my sister about it, she has a Masters Degree in Nursing and is super smart, and her response was that that is an evil drug. That could just be me though, and my sister's humble opinion. I found out later that's a drug to treat seizures. I loved it for about three weeks, then stopped cold, even though you're supposed to wean yourself off of it. According to the package insert, you cam become suicidal if you stop it abruptly. That didn't happen in my case.

There are other meds Dr.'s prescribe for the symptoms. That may be why he can deal with "it" and you're miserable. For the long haul, you're doing what's right!
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#9 RashyA

 
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Posted 16 April 2012 - 07:20 AM

Okay so I'm pretty sure he won't ever get tested.
But..could it be possible that he does have a fungus because celiac can also have Candida's? Just trying to get all my options even though there is really only the truth :(
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#10 pricklypear1971

 
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Posted 16 April 2012 - 09:25 AM

It's quite possible he has candida. You hear about how symptoms have a lot in common, and candida can be quite nasty.

My dad has several odd rashes. Derms don't know what they are. He has slathered creams in them for decades.

Sound familiar???

Yes, his head is firmly placed inside his buttocks, which are both somewhere south of the Nile.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#11 RashyA

 
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Posted 16 April 2012 - 10:28 AM

It's quite possible he has candida. You hear about how symptoms have a lot in common, and candida can be quite nasty.

My dad has several odd rashes. Derms don't know what they are. He has slathered creams in them for decades.

Sound familiar???

Yes, his head is firmly placed inside his buttocks, which are both somewhere south of the Nile.

:lol: haha yes that definitely sounds like my dad
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#12 mamaupupup

 
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Posted 16 April 2012 - 01:08 PM

My kids have Celiac and I, (not my husband) am the genetic carrier. When I told my Mom she said, "I don't have to get tested do I?" Note: reading between the lines for her means "I'm in my 70's, so what's the point?"

I asked our pediatric GI "What is the point for my Mom?" and she said, "I've seen hunched over elderly folks sit straight up and have a long, healthier life being off gluten." Plus, my Mom sometimes has to run for the bathroom after eating misc. foods...

I'll be on my own crusade to have her get tested in the next month: you are not alone!

One approach for your Dad may be to win him over via his stomach! "The way to a man's heart is through his stomach" tactic. Make him or bring him something incredibly deliciously gluten-free. When he compliments you/it, just say, "Yeah, isn't it great? It's gluten free!" and then change the subject. Just keep doing that over and over. He'll finally say something like, "What, are you bringing me some of that gluten free stuff again?" And you smile and say, "Yep, don't you love it?!!! See, when you get tested and go gluten free, you'll be able to eat delicious things AND have even better health!"

Keep us posted!!!
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#13 pricklypear1971

 
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Posted 16 April 2012 - 01:13 PM

My kids have Celiac and I, (not my husband) am the genetic carrier. When I told my Mom she said, "I don't have to get tested do I?" Note: reading between the lines for her means "I'm in my 70's, so what's the point?"

I asked our pediatric GI "What is the point for my Mom?" and she said, "I've seen hunched over elderly folks sit straight up and have a long, healthier life being off gluten." Plus, my Mom sometimes has to run for the bathroom after eating misc. foods...

I'll be on my own crusade to have her get tested in the next month: you are not alone!

One approach for your Dad may be to win him over via his stomach! "The way to a man's heart is through his stomach" tactic. Make him or bring him something incredibly deliciously gluten-free. When he compliments you/it, just say, "Yeah, isn't it great? It's gluten free!" and then change the subject. Just keep doing that over and over. He'll finally say something like, "What, are you bringing me some of that gluten free stuff again?" And you smile and say, "Yep, don't you love it?!!! See, when you get tested and go gluten free, you'll be able to eat delicious things AND have even better health!"

Keep us posted!!!


My dad is the pastry chef. Ain't gonna work.

He's not really a pastry chef but that's his role. All of their friends have these big dinners and he's the dessert guy. He simply will NOT go there.

My mom is going to start gluten-free soon, after some testing. Or that's what she says. We are both pretty sure that's at least one thing behind her problems (apparently so am I but that's another post).

Will be interesting to see how it shakes out at their house.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#14 mamaupupup

 
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Posted 16 April 2012 - 01:46 PM

Wow! Pastry Chef! That IS and uphill battle. The great thing is IF he does embrace it, he will have the opportunity to make such an incredible impact on so many people's lives! I did read somewhere of a woman who went to a famous pastry school and has Celiac Disease...if I remember who that was, I'll post it!
Hmmm...on to other approaches!
Thinking of you!
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#15 Juliebove

 
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Posted 17 April 2012 - 04:37 PM

Good luck with that! Celiac is not my problem but food intolerances. So very similar. My mom has been diagnosed with food intolerances but she likes to live in denial. She says she has none even though I saw her chart. I think my dad has them too but he won't get tested. They both seem to think it is normal to be sick to your stomach all the time, have rashes and go through Kleenex like crazy.
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