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Dealing With Family


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23 replies to this topic

#1 Schatz

 
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Posted 20 August 2011 - 11:32 AM

How do you deal with your extended family when they roll their eyes because they think you've gone overboard with the issue of being completely gluten-free and try to avoid CC?

What do you do when you visit their homes? Do you take your own food?
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Aug 15, 2011 Newly diagnosed and scared!

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#2 love2travel

 
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Posted 20 August 2011 - 12:33 PM

I really feel for those of you who have this struggle on top of everything else. :( Thankfully my family and friends have been extremely supportive and ask lots of questions to gain a better understanding of things. They all really want to help, not hinder me so I am blessed.

Usually when I go to family homes I get asked to do the cooking as I love it so much and it is a treat for them to be cooked for. I take along my cutting boards, ingredients if necessary, etc. If I am not cooking (unusual) I take along my own snacks. My siblings all have wee children so CC is a big issue.

Is there no one in your family who empathizes with you? :huh:
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#3 Marilyn R

 
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Posted 20 August 2011 - 12:41 PM

I've never felt fortunate until reading your post that my siblings and their families get it. They saw my celiac disease mother gradually become completely wheelchair bound and unable to perform activities of daily living without 1-2 people assisting her. (She was non-compliant with the diet.)

I definitely know what you're describing when you mention how people who just don't get it roll their eyes and think you're anal. I've experienced it at work, with my partner's family and with friends.

There's a period of adjustment. It took months for me to stop being upset when people rolled their eyes. Then you recognize that it's simply their lack of knowledge. I stopped trying to explain, and stopped trying to educate them. And it stopped bothering them. At work, they've seen how much better I'm doing, and I haven't noticed any eye rolling lately.

And yes, I take my own food when I visit. I take some to share too. Even when I have to fly to my destination, I make a stop at the grocery store to stock up on safe foods. And I'd rather have my own cooler than share a refrigerator when I'm not sure about who will respect my food or not.
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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.

#4 shadowicewolf

 
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Posted 20 August 2011 - 02:40 PM

try living with two of them after you just got home from surgury sayhing you need to start eating gluten again :blink:
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#5 kellynolan82

 
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Posted 20 August 2011 - 06:58 PM

I've never felt fortunate until reading your post that my siblings and their families get it. They saw my celiac disease mother gradually become completely wheelchair bound and unable to perform activities of daily living without 1-2 people assisting her. (She was non-compliant with the diet.)


How come she wouldn't comply with the diet? I know others who don't comply even though they're told they're celiac because they just 'don't want to have to deal with it'.

Hope she's still alive and can get well again, especially should she decide to comply with the diet. :)
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#6 luvs2eat

 
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Posted 21 August 2011 - 05:51 AM

I only had one episode early on when a friend asked, sort of impatiently, "Can't you just eat a little??" I've never been the "Woe is me" person about it. I always enjoy what I can and never say a word about what's being offered that I can't have. I just said, "That's like me asking you if you can't just eat a little poison. Gluten is poison to me."

This was a friend who is an insulin-dependent diabetic who adjusts her insulin to accommodate whatever she wants to eat rather than modifying her diet so she can use the least amount of insulin... so...
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#7 Cattknap

 
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Posted 21 August 2011 - 06:11 AM

My oldest son (39) has all the symptoms of celiac and has for years. I was diagnosed earlier this year and have told him repeatedly that he needs to be tested....he won't and he is critical of me for not being willing to have even a little piece of pie or a hamburger.....he doesn't want to understand the disease because he is not willing to face the reality that he may have to eat like I do. When he asks me questions like, "why can't you have just a little piece of cake," I simply reply, "you need to get on-line and educate yourself about celiac - then you will understand how dangerous even a "little" gluten can be for someone with the disease." I get tired of explaining the same thing over and over....he actually seems angry at me because I have celiac.
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#8 domesticactivist

 
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Posted 21 August 2011 - 06:33 AM

We always take our own food and pans and utensils. My mom makes little comments, she feels hurt that we won't eat her cooking and guilty eating stuff we can't have in front of us. We've told her a million times it's nothing personal and we are fine with her eating whatever she wants but she doesn't feel it.

However, she is considerate about it and respects our decision.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#9 tcmom

 
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Posted 21 August 2011 - 08:11 AM

@luvstoeat - I like the poison quote, I will use that one!

My immediate family has been pretty supportive but I haven't had much contact with others since my recent diagnosis. I have been trying to think of things to say like "Celiac Disease is an auto immune disorder that is triggered with the smallest amount of gluten to attack my body."

It also helped that my mom came with me to my doctor and the dietitian. She was shocked at the things she learned and is excited to try gluten-free cooking for me.
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#10 kellynolan82

 
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Posted 21 August 2011 - 08:31 AM

My oldest son (39) has all the symptoms of celiac and has for years. I was diagnosed earlier this year and have told him repeatedly that he needs to be tested....he won't and he is critical of me for not being willing to have even a little piece of pie or a hamburger.....he doesn't want to understand the disease because he is not willing to face the reality that he may have to eat like I do. When he asks me questions like, "why can't you have just a little piece of cake," I simply reply, "you need to get on-line and educate yourself about celiac - then you will understand how dangerous even a "little" gluten can be for someone with the disease." I get tired of explaining the same thing over and over....he actually seems angry at me because I have celiac.


Maybe the reason your son is so angry and difficult is because he may not be eating right. :rolleyes:
You really need to explain to him the potential damage that may be occurring. He won't have to avoid gluten right away (especially if he decides to do the 'challenge' - this can be his opportunity to eat all his favourite foods as part of his 'farewell to gluten' journey).

If your son refuses to be tested, make sure he is aware of the other risks associated with autoimmune diseases. He may develop diabetes (and require a lifelong supply of insulin), refectory celiac disease (where he will always be sick no matter what) or any matter of things. Once the autoimmunity is there, it can spread. You may need to give him the full picture, so that he has all the information upon which to make his decision.

He may even discover that he doesn't have the condition. However, you need to tell your son that there's more to life than food. Perhaps present your family with this question:

"Do we eat to live, or do we live to eat?"

It might just give others an appreciation of just how greedy some have become. Maintain a positive attitude about it and be willing to discuss these matters at length (if you need to).

All the best. :)

Edited by kellynolan82, 21 August 2011 - 08:44 AM.

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#11 Marilyn R

 
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Posted 21 August 2011 - 04:10 PM

How come she wouldn't comply with the diet? I know others who don't comply even though they're told they're celiac because they just 'don't want to have to deal with it'.

Hope she's still alive and can get well again, especially should she decide to comply with the diet. :)



No. She died 12/16/10. She was an R.N. I'll never understand why she couldn't go gluten-free. I miss her and still wonder what the issue was. Maybe because she was a depression child?
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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.

#12 Cattknap

 
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Posted 21 August 2011 - 06:14 PM

Maybe the reason your son is so angry and difficult is because he may not be eating right. :rolleyes:
You really need to explain to him the potential damage that may be occurring. He won't have to avoid gluten right away (especially if he decides to do the 'challenge' - this can be his opportunity to eat all his favourite foods as part of his 'farewell to gluten' journey).

If your son refuses to be tested, make sure he is aware of the other risks associated with autoimmune diseases. He may develop diabetes (and require a lifelong supply of insulin), refectory celiac disease (where he will always be sick no matter what) or any matter of things. Once the autoimmunity is there, it can spread. You may need to give him the full picture, so that he has all the information upon which to make his decision.

He may even discover that he doesn't have the condition. However, you need to tell your son that there's more to life than food. Perhaps present your family with this question:

"Do we eat to live, or do we live to eat?"

It might just give others an appreciation of just how greedy some have become. Maintain a positive attitude about it and be willing to discuss these matters at length (if you need to).

All the best. :)


Of course I've explained all these things to my son - I am his mother and I love him. He isn't interested in hearing it - I can't force him - he is 39 years old! We get along very well and have a very good relationship. He is a successful businessman and has 4 small children and a wife and two businesses so his life is very busy. He just doesn't want to deal with the idea that he may have celiac. He can't eat any wheat without getting sick. He has had stomach/digestion issues most of his life. I have explained the consequences of ignoring the possibility that he may have celiac....he has his free agency to choose and right now he chooses not to be tested.
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#13 glutenfreeinminnesota

 
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Posted 21 August 2011 - 06:53 PM

Sorry to hear people are not supportive! I am lucky to have family who saw my pain pre-diagnosis and realize how much better I am now gluten-free. BUT, my out of state best friend couldn't understand why I couldn't just eat gluten this one time for her big day. I flat out told her...If I ate one bite of her wedding cake, I would have to leave the reception and not see her the rest of the trip as I would be glued to the toilet in a lot of pain. Maybe not everyone is as open as me...but I have had so many people ask "what happens when you have gluten?" I just tell them lol. In the least graphic way possible, but I always explain how my body HATES gluten and anything to do with it, and attacks it, therefore, damaging my intestines leading to many side effects and ultimately maybe infertility or cancer. Everyone seems to understand then, and hopefully if they come across another celiac, they will have a better understanding for it!
Good luck!!!
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Diagnosed with Celiac Disease November 2009
2011:
Anemia is gone for the first time in my life, Yay!
Teeth are cleaner according to my dentist (interesting, eh???)
Eyesight has improved for the first time in my life (another interesting thing!)

**My advice to the newly diagnosed** HANG IN THERE!! It gets better and is so worth the seemly long road to getting better. Just be happy you can make yourself healthy with a diet change, and not have to take pills for the rest of your life. :D

#14 T.H.

 
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Posted 21 August 2011 - 08:57 PM

I bring my own food, and a pan to cook it in or a dish to microwave it in.

One thing that helped a relative to understand was to make a comparison to raw meat and germs. We all hear about not touching raw meat and then touching our food, right? Because just a few germs from raw meat can make us very ill.

A few molecules of peanut can make severely peanut allergic folks react.

And we're the same way: very tiny particles of gluten can hurt us a lot.

For whatever reason, even thought nearly everyone knows that tiny things like germs can hurt us, they don't seem to make the connection that our bodies can react to tiny amounts of OTHER things, too, like gluten. But once you can help them make the connection, sometimes that can help. :-)
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21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#15 kellynolan82

 
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Posted 22 August 2011 - 12:38 AM

Sorry to hear people are not supportive! I am lucky to have family who saw my pain pre-diagnosis and realize how much better I am now gluten-free. BUT, my out of state best friend couldn't understand why I couldn't just eat gluten this one time for her big day. I flat out told her...If I ate one bite of her wedding cake, I would have to leave the reception and not see her the rest of the trip as I would be glued to the toilet in a lot of pain. Maybe not everyone is as open as me...but I have had so many people ask "what happens when you have gluten?" I just tell them lol. In the least graphic way possible, but I always explain how my body HATES gluten and anything to do with it, and attacks it, therefore, damaging my intestines leading to many side effects and ultimately maybe infertility or cancer. Everyone seems to understand then, and hopefully if they come across another celiac, they will have a better understanding for it!
Good luck!!!


I wouldn't get all overly defensive about this. Just tell her that just as little as 10mg gluten/day (i.e. ~1/500th of a slice of bread) may easily be enough to do damage that will take at least 6-8 weeks to heal.

Many studies indicate that, for individuals with celiac disease, the daily gluten tolerance threshold varies from (0.6 to 150)mg/day. Most individuals are thought to react somewhere between a daily level of 50 and 100mg gluten.

Your friend probably wants you to reason with her and actually be able to justify it beyond "my body HATES gluten". Try not to be awkward or stress about it. Having been a coeliac for over 12 years myself, I have had many experiences (both good and bad). I find that my best way of being able to learn and understand is by thinking visually.

Re: The Wedding Cake

My friend, who has been coeliac for nearly as long as myself, has also avoided gluten over the years (but does eat out a lot :rolleyes: ) and is vigilant about avoiding gluten (at least most of the time, anyway... :unsure: ).

Recently, another friend of mine had a wedding and both my friend and I were invited to the ceremony and reception. The wedding cake was to die for and I could barely resist the temptation myself. In the end, I decided to pass on it. The same, however, could not be said about my coeliac friend. I have posted on this topic at http://www.celiac.co...-piece-of-cake/ and thought it might be of interest to you.

Maybe you could show it to your best friend, to help spread awareness? :huh:
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