Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How To Approach Parents
0

25 posts in this topic

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:

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

Sounds like he has DH.. He needs to see a Dermatologist that understands DH...

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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! :(

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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 :(

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!!!

1

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Here's a link to my favorite gluten-free dessert recipe for your pastry chef pop. http://www.cooks.com/rec/view/0,1737,144186-238193,00.html

You can make that pie shell for lemon meringue too, or you can make shells for strawbeeries and whipped cream. Or then there's Pavlova. (Search it on the internet or on the forum.) Maybe you can sweet talk him. It's not all about giving up. There's the discovery of new really good things too. Nobody misses the crust when I make that chocolate pie.

If you want in depth instructions about meringue pie crust, shell or cookie making, there was an egg site that really went in depth. My computer's lagging and so am I, but I'm pretty sure your search engine will yield good results. Good luck with Dad...let us know how it goes.

0

Share this post


Link to post
Share on other sites

Here's a link to my favorite gluten-free dessert recipe for your pastry chef pop. http://www.cooks.com/rec/view/0,1737,144186-238193,00.html

You can make that pie shell for lemon meringue too, or you can make shells for strawbeeries and whipped cream. Or then there's Pavlova. (Search it on the internet or on the forum.) Maybe you can sweet talk him. It's not all about giving up. There's the discovery of new really good things too. Nobody misses the crust when I make that chocolate pie.

If you want in depth instructions about meringue pie crust, shell or cookie making, there was an egg site that really went in depth. My computer's lagging and so am I, but I'm pretty sure your search engine will yield good results. Good luck with Dad...let us know how it goes.

Thanks!

Now can you solve my pizza crust problem??

0

Share this post


Link to post
Share on other sites

Prickly, I'm frying my brain trying to remember if I told you about Chebes or not. It's really good, has flex (that's really important, you don't want cardboard crust. I have to do it again, plug Against the Grain Pizza. I swear I don't work for them,, I work another field (medical). I'm pretty stinking sensitive and I've never gotten "hit" from Against the Grain. But I do cook it 4-5 minutes longer than they instruct on the packaging and let it rest a bit before I slice it up. Against the Grain has a really good pizza that made me stop making my own crusts, but I have to drive 15-30 miles to get it. Their bagels are divine.

0

Share this post


Link to post
Share on other sites

Yes, we've talked about Chebe and I like it but it still isn't what I'm looking for in a pizza crust.

Against the Grain probably is what I'm looking for. I've had their baguettes but the health food store doesn't carry their pizza crust, but maybe they'll order it for me.

0

Share this post


Link to post
Share on other sites

Thanks!

Now can you solve my pizza crust problem??

We often use Bob's Red Mill gluten-free pizza crust mix. It's made the pizza lovers in my family very happy.

0

Share this post


Link to post
Share on other sites

Back to the original post, I met a fellow celiac disease in the gluten-free aisle of a Health Food Store recently.

She was Italian and in her 60's. She told me when her doctor told her she couldn't have wheat anymore, she flipped out. She and her husband owned an Italian restaurant. She asked the Dr. what in the heck she was going to eat. Both of her children ended up with having it (got tested after she got the dx.) She said her son LOVES her lasagna, and can't tell the difference from when she made it with wheat pasta. She bye the way recommended Tinkyada brand pasta, which has been recommended by other forum members. I loved meeting her in person, we spent some time together reviewing products we had tried. I turned her on to a couple and she turned me on to a couple. (But she could do soy.)

Wish I'd asked her about deserts. We're happy with a piece of dark chocolate for dessert. I ocassionally buy dark chocolate or rum raisin ice cream, haven't had issues (Stonyfield, Haagandaz) Hope that helps, please let us know if Pops chooses the right path. I'm gonna go fix myself a bowl of Dark Chocolate Ice Cream and fresh sliced strawberries. If there's a better desert than that, I'd be amazed, with the possible exception of a gluten-free brownie wwith a scoop of rum raisin ice cream on top. I was served that desert in Paris, pre gluten-free btw. B)

0

Share this post


Link to post
Share on other sites

I keep working on my mum and I'm impressed how much has sunk in over the past 2 years.She's always eaten well, good whole foods, no junk. But she likes her home made bread and she likes crackers. And she's always had digestive issues, she was the one who made me think mine were normal because as kids we'd get a peppermint when we had stomach aches, like stomach aches were a normal to be expected post eating occurence and you had to keep something in your purse just in case.

But she's awesome at keeping things gluten free when I visit and so that cuts her down for a bit and it seems that she's keeping that up a bit between my visits, from what she's said she's eating significantly less gluten than she used to and feels better for it. I just can't get her to make the jump to entirely gluten free. Yet. Everytime she mentions a symptom I reply "gluten" and then describe another weirdass thing I noticed going gluten free or have read about here. Chip chip chip I'm getting there.

0

Share this post


Link to post
Share on other sites

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!!!

I Couldn't agree more!

0

Share this post


Link to post
Share on other sites

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 :(

From my understanding, absolutely. I was diagnosed only last year, but honestly, in my particular case, both my doc and I believe that Candida was my MAIN celiac symptom and complication (I was likely celiac my whole life, diagnosed at 45). I never had the typical GI symptoms, and I have dosed myself with sugar and carbs regularly my entire life (I was so elated that I was so skinny, yet could eat anything I wanted! ha, idiot.)

So, here's a suggestion. Since it's super clear that neither he nor his doctor will head in this direction, what if you pulled a quick one on him? Go get a big bottle of "Candex" and let him know that he takes 6 (2 hrs before food) in AM and another 6 at bedtime (2 hrs after any food)....tell him that you read a great article that this stuff can be a MIRACLE at dealing with itchy skin (it's a type of enzyme that breaks down the yeast cell walls and helps to kill it off without any "die off" symptoms). Just get it for him, tell him to try it for at least 2 weeks and see if he notices a difference. If he does, maybe at least this is a side route to getting him to unknowingly treat the Candida issue, even if he won't/can't address the Celiac issue. If it helps, he won't care what it is, he'll just take it. Don't even bring up Celiac again, just do it like it's a completely unrelated treatment for itchy skin.

Just a thought.

0

Share this post


Link to post
Share on other sites

I very much hope I can encourage my parents to at least speak with their doctors about this. As the more I read, the more I believe they could also be sensitive to gluten. My father has had both hemorrhoids and colon polyps, his mother died of colon cancer. My Mom is already developing arthritis and she has always been very moody.. Since I have confirmed my own sensitivity I just want them to be aware. I believe very much that they could have it to, especially my father, who also had to have triple bypass due to blocked arteries/high cholesterol.

I think my Dad will at least listen to me. Not sure about my Mom, but I will give it my best shot!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,131
    • Total Posts
      919,521
  • Topics

  • Posts

    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
    • I'm so confused about my daughter's diagnosis.  I hope somebody can help.   My 4 year old daughter has a swollen belly, stomachaches, and lots of gas.  She does not have diarrhea or delayed growth.  Because of her symptoms and because it runs in the family (2nd degree relatives) I had her tested for celiac.   She was weak positive for TTG (IGA)  and strong positive for DGP (IGG)   TTG (IGA)  8   (0-3 neg, 4-10 weak positive, greater than 10 positive) TTG (IGG)  2   EMA: Negative DGP (IGG)  47  (0-19 negative, 20-30 weak positive, greater than 30 positive) Last week, she had her endoscopy.  The doctor found inflammation and little holes or bumps on her duodenum.  He started her on prevacid and said based on his observations, he was suspicious of celiac, but he would not be able to confirm until the biopsy came back. The biopsy showed no signs of celiac disease.  He said that he could not diagnose her with celiac without the biopsy report saying there was celiac damage.  He said he would categorize her as a potential celiac, keep her on a gluten diet and redo the endoscopy in a year or two to check for damage again.  My questions are: 1.)  If it is not celiac, something is causing her duodenum to be inflamed and have little holes or bumps on it, right?  Could it be a wheat allergy or gluten sensitivity?  What else could it be and how do they test for it?  Given her elevated celiac antibodies, how likely is it to be anything besides celiac causing the damage?  2.)  How likely are false positives for TTG and DGP?  I've heard they are pretty sensitive and specific.  Does getting two positives make false positives less likely? 3.) What have you done in this situation?  I want her to have an official diagnosis to make things easier at school and to feel confident that we are eliminating gluten permanently for a worthy reason, etc.  But, I'm having a hard time imagining keeping her on gluten and waiting for her to get more sick and have more intestinal damage just for a diagnosis.     Thanks in advance for your help.  I'm so overwhelmed and confused.  I hope someone has some insight and experience that will help clear things up for me.            
    • Yeah I actually live in Japan which is pretty similar, because Coeliac disease is rare over here so is the understanding and accommodating it. When I mention Gluten to some restaurants they think I am talking in English and they are unfamiliar with the word in Japanese.    So it seems I can write off my chances of getting some authentic Chinese gluten-free food at the airport, but at least there is a Thai restaurant in T3 so I won't starve. Its called  'Phrik Thai' for future reference. http://en-shopping.bcia.com.cn/store/739.html  
    • While in Boston I found Cheer's  Bloody Mary mix that says gluten-free on the bottle and have had no issues and  tastes pretty good 
    • I always assumed plain coffee was, but I have seen some controversy online about this. I know someone who is gluten free and only buys whole beans and grinds them herself because she doesn't trust how the grounds are processed.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,166
    • Most Online
      1,763

    Newest Member
    jen4az
    Joined