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How To Notify Family


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48 replies to this topic

#16 pricklypear1971

 
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Posted 21 October 2011 - 05:15 AM

If your family is like most there are folks who won't really accept it and certainly wouldn't be tested if you don't have an official diagnosis. My family got tested because I was SOOO ill and because I was highly positive. I was never much concerned which side of the family it came from, though.

richard


You know, ironically, the diagnosis is what I DON'T lack. My ND says flat-out I have Celiac. At first she suspected gluten intolerance but the rash resolving on a low iodine/gluten-free diet did it for her. That, in conjunction with the iron anemia and vitamin D deficiency.... And the wonky liver tests...and the suggestions my gallbladder isn't functioning perfectly....and the Hahis. SHE doesn't doubt it, which is hilarious.
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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!

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#17 zero

 
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Posted 22 October 2011 - 02:58 PM

FYI, this was from part of the email I sent to family members,

...

However, as this is related to genetics, I am taking the advice of my doctor and informing you of your slightly increased risk. The probability of your also having or getting celiac is,
1 in 133: for general population (inlaws)
1 in 40: for second degree relative (niece,nephew)
1 in 22: for primary relative (parents,sibilings)
10%: for my long lost twin sister (which I don't have)
70%: for my long lost identical twin brother (which I don't have)

Actually the surprising thing is how high it is in the general population. Diagnosis consists of a blood test and if positive it is confirmed by a biopsy of the small intestine.


This was a while ago. I can't say if those statistics are still correct.
  • 1
Diagnosed Celiac May 2008

#18 Bubba's Mom

 
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Posted 23 October 2011 - 01:31 PM

I told my grown sons they should be tested. They both have symptoms..and both refuse.

My sister has Crohn's disease which cannot be put into remission. She has to get IV therapy every 6 weeks. I told her she should be tested. She mentioned it to her Dr. and he said "there's no special diet for Crohn's."

I've sent her links that I've found about the gluten connection and Crohn's and suggested she try going gluten-free.
Instead, she went on a blood type diet. It didn't allow wheat and after a short while she said she had to stop. She said when she did eat bread or pasta she got bad pain in her belly and felt awful. I told her that a reaction like that would be consistant with Celiac or at least gluten intollerance?
She says she can't do gluten-free!

I'm shocked! Knowing how sick she's been over the years it seems like giving gluten-free a good try to see if she could feel better would be worth a shot? :o

If someone had told me about Celiac and it's symptoms years ago I would have had a much different life. I would have asked to be tested..and would have tried gluten-free to see if it helped. It's so much better than suffering..and getting labeled as hypochondriac!

I know I did my part. I mentioned it. If family members find themselves getting worse over time..at least that little "seed" has planted as to what to look for as a cause?

It's like they say..you can lead a horse to water...
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#19 carecare

 
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Posted 24 October 2011 - 11:49 AM

I've been trying for years to get my sister who has debilitating issues at times...from what was first thought to be MS but now the doctors say they aren't sure. She has just about all the symptoms listed under gluten ataxia...she has other issues that are common with those afflicted with celiac. Her husband recently asked the dr's at mayo clinic to test her for celiac and they denied that blood test saying it's not celiac. So now she thinks that because the dr's there at this major reputable hospital aren't the least bit convinced it could be gluten related.....she refuses to even try. I don't get that line of thinking. I've told her and her husband both (who suffers from psoriasis + psoratic arthritis and just had his gall bladder removed)...that if there was one thing in this world that might possible help either one of their symptoms that doesn't require any odd medication or herbs or anything off the wall wacky wouldn't you try it.

Nope...they won't.
Makes me sad. :(

It's the main reason I personally want to get tested...with blood, genetic and endoscopy and actually hope something is positive so then I can send her the statistics that really point to her having a higher chance she's celiac.
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#20 pricklypear1971

 
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Posted 27 October 2011 - 03:13 PM

Geez.

So, I haven't heard a thing back from the one family member I notified a week ago. I didn't expect her to call asking for info, but did expect she'd acknowledge the email. So, just as I thought... I'm a leper.

Can ya'll believe as I was perusing Facebook my cousin from the OTHER side of the family (aunt was Mom's, cousin is Dad's) said she's having gallbladder problems??? She's about 9 years younger than me, I think. I remember her Mom having issues when I was a kid.... Crap. Now do I need to tell her?????
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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!

#21 Bubba's Mom

 
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Posted 27 October 2011 - 03:25 PM

Couldn't hurt to mention it?
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#22 pricklypear1971

 
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Posted 27 October 2011 - 06:00 PM

I was thinking today... Perhaps a part of what makes the gluten-free diet a success is the willingness of the patient to DO something, and not have the "pill" mentality.

My mom keeps saying stuff like "but it makes everything so hard", and going on about how difficult it is. I agreed that it is difficult, but being sick is MORE difficult. I think she's satisfied with seeing her chiropractor who has her on this allergy rotation diet with allergy treatments. She thinks it helps, and maybe it does, but I just wish she'd get tested. Before I got dx'ed she confessed she thinks she has fibromyalgia. She keeps wanting me to try the wacky allergy stuff, and I told her to forget it - I can't do any other crap to my body or eliminate more foods right now.

My Mom doesn't want rx meds, but she wants to travel freely and not have to take responsibility for my parents travel plans (my Dad does all of that). If she did gluten-free she'd have to wrestle restaurant planning out of my Dad's hands-which wouldn't be pretty.

Sigh. I'm just venting.
  • 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!

#23 Celtic Queen

 
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Posted 28 October 2011 - 08:33 AM

Perhaps a part of what makes the gluten-free diet a success is the willingness of the patient to DO something, and not have the "pill" mentality.


I so totally agree with this. I also think what makes the diet successful are people who are willing to listen to more than just their doctors. People who are willing to be advocates for their own health and do their own research into causes for their problems.

I have a friend with fibro who has all the classic signs of ataxia, has brain fog, has had panic attacks for years, and has digestive issues. I've told her about the gluten-free diet and the link to fibro. She's "investigating it." But her doctors haven't mentioned anything to her about gluten sensitivity, so I don't know how seriously she's taking it. I just want to shake her and say, "This could fix a lot of your problems. Give it a try." But it's so much easier to just pop a pill than to think about what you're putting into your mouth every day.

I saw my doctor this morning and she asked me if I was having any problems sticking to the diet. I told her nope. I felt so much better being off the gluten that I didn't want to touch the stuff ever again. I had absolutely no desire whatsoever to cheat on my diet.
  • 2

Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#24 pricklypear1971

 
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Posted 03 November 2011 - 09:47 AM

Son of a biscuit eater, my first cousin has Crohn's!

I guess I know who I'm talking to next....
  • 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!

#25 cap6

 
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Posted 03 November 2011 - 08:02 PM

When I told my brother about Celiac, expressing concern and the belief that our mother died as an undiagnosed celiac, his comment was that everyone dies of something.... and he helped himself to another piece of bread. Well, after that comment I was left wondering how much sympathy I could muster up when he felt like his guts were being pulled sideways out of his...... !
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#26 domesticactivist

 
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Posted 03 November 2011 - 09:11 PM

I just realized I do have genetic risk, so I emailed my parents and brother. I told them the full list of blood tests to request and told them the risk was low but since the potential for serious consequences from leaving it untreated is serious that I hoped they would get tested.

My dad wrote me back saying no way but thanks for the info. This was no surprise as he is a full time missionary in the slums of Jamaica and he does not have medical care or believe in it at all, and sees special diets as an act of privilege when people are starving, in addition to an act showing lack of faith. Ironically he used to be a pharmaceutical rep specializing in GI medications, so he is pretty informed about a lot of this stuff.

I haven't heard back yet from my mom or brother. My mom can't even imagine a meal without bread but I do think she'll get tested just to humor me. I kind of doubt my brother will do it because it's just one more thing to get around to.
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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.

#27 IrishHeart

 
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Posted 06 November 2011 - 09:18 AM

I took the time to write a letter to my large family. They ALL know I was very, very ill and incapacitated from something for over 3 years, so when I was Dxed, and had the genetic test done which showed genes from both parents, I felt it was the right thing to inform all of them. I have siblings and over 40 cousins and they all have kids, too.

I explained gluten sensitivity, intolerance and Celiac. I sent a list of over 300 symptoms and autoimmune conditions that are associated with it. I told them what they could do to feel better, what tests to have done, and WROTE UP a shopping list and created a month's worth of menu suggestions.

I did that because one said to me "It's too hard and expensive to do with a family". Baloney!

I provided links to various sites for information, articles on their specific conditions and how they relate to gluten intolerance and offered to help anyone who needs guidance. I even PHOTOCOPIED all this and mailed it to people who do not have email!

If someone had done all that for me years ago and TOLD ME I WOULD FEEL BETTER if I just did this one thing, I'd have jumped for joy. :huh:

Here is the reply I got from over 50+ people I informed:






:unsure:

One cousin told my Mom he cried when he read about what happened to me. One told her he knows this is probably what he has because he has all the symptoms. One with Crohn's said that my story sounded like hers.But NONE have done a thing about it.

My family--both sides --is LOADED with autoimmune diseases (diabetes, thyroid disease, various cancers, Crohn's, MS, asthma--- and almost every one of them has GERD or "irritable bowel" or is overweight (as I once was) and there is some anxiety/depression there as well.Practically NO ONE has a gall bladder anymore (me neither) and some have unexplained anemia.

My Mom, after reading all the info I sent (and helplessly watching my decline for 3 years) was the only who took it seriously.

Learning the ropes and how to" punt" in a gluten- filled world is a bit rough, but if my 84-year-old Mom can do it, anyone can. She goes to weight watchers for her weekly meeting ( she is on maintenance for life) and tells others about gluten sensitivity and celiac and how wheat could be affecting their health. Go Mom! Her lifelong anxiety, stomach and bowel issues, insomnia and GERD are gone. She sees how it affected her whole life now--as it has mine.

When asked if it is difficult to adopt a gluten-free diet, she says "No, what's the big damn deal? "... :lol: :lol:
Whomever uses the excuse "it's too late to change"--- hasn't met my Mom--and is doing just that: "making an excuse".

The saddest part of all is my sister, whom I love dearly, will not get tested. She has diabetes, hypothyroidism, high blood pressure and various other issues. I worry that she will develop even MORE symptoms, like kidney disease. We now realize this thing likely killed my Dad. :(

Her final word on this whole subject was "Thanks, but I trust my doctor and will go with the medications and protocols in place."

Now, guys, she TOLD this doctor (and he is also my MOM's doctor) that I was ill for 3 years and DXed with celiac and that I said she should have the test. Now, either he is too ignorant to do it or she simply has refused because she does not want to follow the diet on top of caring for her diabetes.

In any case, it is a damn shame that no one listens to us. I am tired of banging my head against the wall trying to get them to see what's right in front of them. One even told me "well, no one is as sick as you are, so we don't think it's a problem" :o .....and I thought to myself....OK, but someday, you will be and I will be here to help.

Tell them, then, let it go. I lost enough sleep over it.
Best wishes!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#28 Marilyn R

 
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Posted 06 November 2011 - 01:28 PM

I took the time to write a letter to my large family. They ALL know I was very, very ill and incapacitated from something for over 3 years, so when I was Dxed, and had the genetic test done which showed genes from both parents, I felt it was the right thing to inform all of them. I have siblings and over 40 cousins and they all have kids, too.

I explained gluten sensitivity, intolerance and Celiac. I sent a list of over 300 symptoms and autoimmune conditions that are associated with it. I told them what they could do to feel better, what tests to have done, and WROTE UP a shopping list and created a month's worth of menu suggestions.

I did that because one said to me "It's too hard and expensive to do with a family". Baloney!

I provided links to various sites for information, articles on their specific conditions and how they relate to gluten intolerance and offered to help anyone who needs guidance. I even PHOTOCOPIED all this and mailed it to people who do not have email!

If someone had done all that for me years ago and TOLD ME I WOULD FEEL BETTER if I just did this one thing, I'd have jumped for joy. :huh:

Here is the reply I got from over 50+ people I informed:






:unsure:

One cousin told my Mom he cried when he read about what happened to me. One told her he knows this is probably what he has because he has all the symptoms. One with Crohn's said that my story sounded like hers.But NONE have done a thing about it.

My family--both sides --is LOADED with autoimmune diseases (diabetes, thyroid disease, various cancers, Crohn's, MS, asthma--- and almost every one of them has GERD or "irritable bowel" or is overweight (as I once was) and there is some anxiety/depression there as well.Practically NO ONE has a gall bladder anymore (me neither) and some have unexplained anemia.

My Mom, after reading all the info I sent (and helplessly watching my decline for 3 years) was the only who took it seriously.

Learning the ropes and how to" punt" in a gluten- filled world is a bit rough, but if my 84-year-old Mom can do it, anyone can. She goes to weight watchers for her weekly meeting ( she is on maintenance for life) and tells others about gluten sensitivity and celiac and how wheat could be affecting their health. Go Mom! Her lifelong anxiety, stomach and bowel issues, insomnia and GERD are gone. She sees how it affected her whole life now--as it has mine.

When asked if it is difficult to adopt a gluten-free diet, she says "No, what's the big damn deal? "... :lol: :lol:
Whomever uses the excuse "it's too late to change"--- hasn't met my Mom--and is doing just that: "making an excuse".

The saddest part of all is my sister, whom I love dearly, will not get tested. She has diabetes, hypothyroidism, high blood pressure and various other issues. Her final word on this whole subject was "Thanks, but I trust my doctor and will go with the medications and protocols in place."

Now, guys, she TOLD this doctor (and he is also my MOM's doctor) that I was ill for 3 years and DXed with celiac and that I said she should have the test. Now, either he is too ignorant to do it or she simply has refused because she does not want to follow the diet.

In any case, it is a damn shame that no one listens to us. I am tired of banging my head against the wall trying to get them to see what's right in front of them. One even told me "well, no one is as sick as you are, so we don't think it's a problem" :o .....and I thought to myself....OK, but someday, you will be and I will be here to help.

Tell them, then, let it go. I lost enough sleep over it.
Best wishes!



When my brother was here, we talked about the disease. I reminded him that all off Mom's 8 brothers and sisters were ambulatory at a very late age, and the survivors are still totally ambulatory without walk aids. Yet Mom was wheelchair bound. He said "So you have to choose between gluten or walking? That seems like an easy choice."

It's really frustrating about your sister.

I have a co-worker who I'm pretty sure needs to go gluten-free, but she's adamant that she won't get tested and would rather die than give up bread. (One of the dead bread heads.) I've mentioned it twice in two years, won't bring it up again. The other day she saw me photocopying a recipe from a cookbook and asked if I had a good recipe. I told her she wouldn't be interested b/c it was gluten-free. Her response was "That's right!"

I've shared other gluten-free recipes with her that she's loved, but if you tell her it's gluten-free she's not interested. LOL.
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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.

#29 pricklypear1971

 
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Posted 06 November 2011 - 01:31 PM

When my brother was here, we talked about the disease. I reminded him that all off Mom's 8 brothers and sisters were ambulatory at a very late age, and the survivors are still totally ambulatory without walk aids. Yet Mom was wheelchair bound. He said "So you have to choose between gluten or walking? That seems like an easy choice."

It's really frustrating about your sister.

I have a co-worker who I'm pretty sure needs to go gluten-free, but she's adamant that she won't get tested and would rather die than give up bread. (One of the dead bread heads.) I've mentioned it twice in two years, won't bring it up again. The other day she saw me photocopying a recipe from a cookbook and asked if I had a good recipe. I told her she wouldn't be interested b/c it was gluten-free. Her response was "That's right!"

I've shared other gluten-free recipes with her that she's loved, but if you tell her it's gluten-free she's not interested. LOL.


Dead Bread Heads. LOVE it!!
  • 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!

#30 IrishHeart

 
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Posted 06 November 2011 - 03:57 PM

Dead Bread Heads. LOVE it!!



I like that one! :lol:

I usually say "Gluten Head" to describe the brain stuff I have from gluten :blink:

and I use GEs or WEs---Gluten Eaters/Wheat Eaters for "them"... :lol:
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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