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How To Notify Family


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#1 pricklypear1971

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Posted 02 October 2011 - 11:39 AM

Ok,

I'm getting to the point of needing to notify family that there's something going on. Hubby, kid, parents, in-laws know... and they are very supportive.

But I need to notify grandparents, aunts, uncles, cousins.... I also need to convince my parents to be tested. My son will be tested soon (I'm loading him on gluten these next few weeks, gluten in my house - freaking me out), my FIL volunteered for dna testing so we can identify if genes come from his side or my MIL's side (MIL passed away). I am hoping my parents will be tested and have some evidence to add ( I highly suspect my mother of gluten issues if not full-blown Celiac).

I'm afraid I can't supply my family with a lot, but I want to try.

1) I haven't had a Celiac antibody panel run - and at almost 4 months gluten-free its pointless.
2) I haven't had an intestinal biopsy.
3) I am positive for Celiac genes.
4) I was dx'd with Hashimotos six years ago and respond to t3/t4 treatment. Symptoms do not completely resolve with Hashis treatment, but DO WITH GLUTEN WITHDRAWAL. Hypothyroidism runs in our family.
5) I have abnormally low iron and vit D levels.
6) I have sub-optimal liver tests (my doctor will have to clarify this for me).
7) I have had a 3 year rash that my Dermatologist believes is autoimmune and he wants to biopsy it for DH next time I break out. I thought I would have had another breakout by now, but the low-iodine/no gluten diet has been VERY successful. We scheduled a biopsy but it was an "old rash" and he thinks its better to biopsy "new rash" - my rash is one that "fades" out... so finding "clear skin" near the rash was difficult on me - or it was at the time.
8) I have neurological symptoms like shaky hands, brain fog, confusion, heart rate increase, anxiety when I get (what I assume is) glutened. I also have had chronic C for YEARS.
9) I have a history of stomach issues like reflux, ulcers, hiatal hernia.
10) Infertility and was starting dx for Endometriosis when I got pregnant at 1 year of trying.
11) My ND and Dermatologist advise against purposely glutening myself since my symptoms appear not to be isolated to my gi system - meaning I literally lose my mind, my adrenals go into overdrive, my blood sugar becomes unstable, etc.


So, anyone want to share how they notified family? What works and doesn't work?

Many thanks!
  • 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!

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#2 mushroom

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Posted 02 October 2011 - 12:46 PM

Just a suggestion on the DH - you could try eating foods containing high levels of iodine and that could trigger an outbreak for biopsy. As you are doubtless aware, a diagnosis of DH is a diagnosis of celiac. That way besides listing all your symptoms you could give them the diagnosis - the reason for them.
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 pricklypear1971

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Posted 02 October 2011 - 12:51 PM

Just a suggestion on the DH - you could try eating foods containing high levels of iodine and that could trigger an outbreak for biopsy. As you are doubtless aware, a diagnosis of DH is a diagnosis of celiac. That way besides listing all your symptoms you could give them the diagnosis - the reason for them.


I've been tempted. I am making lasagna tonight - ricotta with carageenan, eggs, cheese. It's a true test. The problem is that the DH outbreak makes me physically ill - I almost get a fever, do get chills, my body tissues get inflamed... it's not just a rash for me, its all all-over-body experience. Plus, the primary site is under my arms so wearing a bra to go out is AWFUL. I also tend to react to more things like scents, chemicals, etc. when I have an outbreak. In short, its risky.

I have so been enjoying not having that rash. Almost three years of absolute torture.
  • 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!

#4 mushroom

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Posted 02 October 2011 - 12:54 PM

I've been tempted. I am making lasagna tonight - ricotta with carageenan, eggs, cheese. It's a true test. The problem is that the DH outbreak makes me physically ill - I almost get a fever, do get chills, my body tissues get inflamed... it's not just a rash for me, its all all-over-body experience. Plus, the primary site is under my arms so wearing a bra to go out is AWFUL. I also tend to react to more things like scents, chemicals, etc. when I have an outbreak. In short, its risky.

I have so been enjoying not having that rash. Almost three years of absolute torture.


Well, I do understand your reluctance :rolleyes:
  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#5 kareng

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Posted 02 October 2011 - 12:56 PM

Is there oe person in the family you can tell & they will broadcast it? All I had to do was tell my mom & now, everyone I have ever met knows I have Celiac.

You could be vague about how you were diagnosed. Just say you have it & thus is how they should be diagnosed. You can tell them your health issues that went away.
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#6 pricklypear1971

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Posted 02 October 2011 - 01:02 PM

Is there oe person in the family you can tell & they will broadcast it? All I had to do was tell my mom & now, everyone I have ever met knows I have Celiac.

You could be vague about how you were diagnosed. Just say you have it & thus is how they should be diagnosed. You can tell them your health issues that went away.



My family is like a group of magpies... however, there are factions within the magpies???? I don't want this to be a word of mouth thing... like my mother telling my grandmother I have a problem with iodine (my grandmother has an iodine allergy, apparently). So my grandmother would assume she already knows what's wrong... and would not look into it. Get my point?

Also, many of my family members live in rural areas where I am betting they won't have the best access to medical care or a variety of doctors. I want them to get clear, concise information that will help them get diagnosed if they suspect they have a problem.
  • 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!

#7 kareng

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Posted 02 October 2011 - 01:13 PM

I guess you could send a group mailing/ emailing. Then you know exactly what they were told. What they " hear" is another matter. Maybe some links like to the FAQ sheets at the Univ of Chicago. They have one explaining what tests a relative needs. Or just the link with the important paragraph quoted. I printed it out for my parents. Of course, it doesn't apply to them because having to cancel Thanksgiving due to diarrhea or gas that could cause a major explosion if near a flame, have nothing to do with Celiac.

That's the other thing. You can give them the info but you can't make them or nag them into getting tested.
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LTES

 

 

Someone told me I was delusional.  I almost fell off my unicorn.

 

 

fantasy-unicorn-15.gif


#8 pricklypear1971

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Posted 02 October 2011 - 01:27 PM

Lol, I agree. I can't make them get tested, but I can give them the information they need.

My mother is sooooo fighting getting tested. She admits she KNOWS SHE SHOULD - but she doesn't want to face the reality. Maybe if she got the dang rash????? It sure motivated ME.
  • 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!

#9 Judy3

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Posted 02 October 2011 - 02:35 PM

Lol, I agree. I can't make them get tested, but I can give them the information they need.

My mother is sooooo fighting getting tested. She admits she KNOWS SHE SHOULD - but she doesn't want to face the reality. Maybe if she got the dang rash????? It sure motivated ME.


I told my extended family (both sides) in November of last year. Multiple phone calls and now none of them on my fathers side like to talk to me because they are reminded of their 'head in the sand' attitudes about life. My mother and her family, my brother and kids all are supportive but none of them will get tested. All you can do is pass on the information and let them do with it what they choose. I hope your extended family has a better attitude than part of mine does. I don't get invited to things on that side much anymore I think because they don't want to deal with it, even though when I go to events with friends or the other side of my family, I always bring my own food when I am invited and treats for everyone that are gluten free but they can't tell the difference. Good luck with that and don't fret.. you can't make them take it seriously, you can only tell them the facts and then let them digest it and do what they will.. :)
  • 0
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Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#10 Marilyn R

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Posted 02 October 2011 - 03:58 PM

Ok,

I'm getting to the point of needing to notify family that there's something going on. Hubby, kid, parents, in-laws know... and they are very supportive.

But I need to notify grandparents, aunts, uncles, cousins.... I also need to convince my parents to be tested. My son will be tested soon (I'm loading him on gluten these next few weeks, gluten in my house - freaking me out), my FIL volunteered for dna testing so we can identify if genes come from his side or my MIL's side (MIL passed away). I am hoping my parents will be tested and have some evidence to add ( I highly suspect my mother of gluten issues if not full-blown Celiac).

1) I haven't had a Celiac antibody panel run - and at almost 4 months gluten-free its pointless.
2) I haven't had an intestinal biopsy.
3) I am positive for Celiac genes.
4) I was dx'd with Hashimotos six years ago and respond to t3/t4 treatment. Symptoms do not completely resolve with Hashis treatment, but DO WITH GLUTEN WITHDRAWAL. Hypothyroidism runs in our family.
5) I have abnormally low iron and vit D levels.
6) I have sub-optimal liver tests (my doctor will have to clarify this for me).
7) I have had a 3 year rash that my Dermatologist believes is autoimmune and he wants to biopsy it for DH next time I break out. I thought I would have had another breakout by now, but the low-iodine/no gluten diet has been VERY successful. We scheduled a biopsy but it was an "old rash" and he thinks its better to biopsy "new rash" - my rash is one that "fades" out... so finding "clear skin" near the rash was difficult on me - or it was at the time.
8) I have neurological symptoms like shaky hands, brain fog, confusion, heart rate increase, anxiety when I get (what I assume is) glutened. I also have had chronic C for YEARS.
9) I have a history of stomach issues like reflux, ulcers, hiatal hernia.
10) Infertility and was starting dx for Endometriosis when I got pregnant at 1 year of trying.
11) My ND and Dermatologist advise against purposely glutening myself since my symptoms appear not to be isolated to my gi system - meaning I literally lose my mind, my adrenals go into overdrive, my blood sugar becomes unstable, etc.


So, anyone want to share how they notified family? What works and doesn't work?

Many thanks!


This is sad but true. Most of my cousins and aunts and uncles from both sides of the family showed up for my Mother's funeral. Many of them asked me if I was sick, or asked me if I was okay. It was eight months after going gluten-free and I was still painfully thin, looked like death walking. I explained celiac disease in a few carefully chosen words... and said I'd inherited it from Mom and probably Grandpa.

There were looks of complete surprise. But I have a first cousin with pancreatic cancer, another who died of MS, aunts with breast cancer.

I e-mailed all my brothers and sisters later reminding them to get screened, and to have their children screened. I think I started the e-mail with "I've been through two years of living hell and want to remind you that celiac disease is hereditary... (subtle, huh!)

I would visit my grandparents and tell them in person. If that isn't possible, I'd write them a letter and call to follow up.

I still remember Aunt Pearl telling me she might have a fat ass but at least people knew she had enough money to eat. She's 87 years old. I didn't explain it to her, just gave her a big hug and told her what a great ass she has. She's bent over like a question mark, but I am not talking gluten with Aunt Pearl.

Later, I e-mailed everyone to remind them how important it is to get tested, and have their children tested.

Everyone in the family has had blood tests. They were all negative. My celiac screen was withing normal limits too, but gluten makes me sicker than a dying dog.
  • 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.

#11 melikamaui

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Posted 15 October 2011 - 10:49 AM

I put it everywhere I could. I am friends with some family members on facebook so I constantly post things there. We also have a family website and I posted a long letter there too. I remind family whenever I can. I know they are listening because some of them have even made half-hearted attempts (and failed) at going gluten-free. But so far none of them have had any kind of testing. I just give them the information and hope for the best. It's all any of us can do really.
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#12 adab8ca

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Posted 16 October 2011 - 05:58 AM

it's funny how people don't want to know....none of my siblings have gotten tested and I want to SCREAM at them to JUST FIND OUT because you may get as sick as I was and think you are dying and wasting away for no good reason...My sister got her kids tested and they all came back negative ALTHOUGH my one niece has PCOS which can be helped with a gluten-free diet and my other niece has always had issues with food (stomach pain, very thin etc)...
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#13 pricklypear1971

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Posted 20 October 2011 - 01:24 PM

Well, I just notified my first family member. I did it because she's scheduled for gallbladder surgery in two weeks and I thought she might be interested in knowing the link between Celiac and gallbladder problems.

Holding my breath.
  • 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 Roda

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Posted 20 October 2011 - 08:23 PM

I informed my immediate family. My mom and dad got blood tested a couple of years back and were negative. I don't think they had all of the tests done though. If in fact my dad's tests were negative, I think they were false negative. I truely believe he has it to, but I won't get into details about why. My brother refuses to get tested. I KNOW he has it. I even suspect he has DH also. He is really starting to get more health issues and "can't" figure it out. DUH!! He said that he would rather die than to give up beer and bread. Oh the irony of that statement. My neice started having trouble last year and I suggested to her to get tested(she is 20). She asked about testing and they said if her colonoscopy didn't show anything then they would consider it. She did have some findings on her colonoscopy so they dropped the celiac testing. In June she stated she was having trouble again. She mentioned that she eliminated most wheat and other things while in school and was doing great. She was home on summer break and was eating anything and everything and the problems started back. Her mom(my SIL) told her it wasn't food related and it was STRESS! Ugg. I'm not sure who is worse my SIL or brother. Word has gotten out to extended family, and my dad's full cousins daugher is gluten intolerent or celiac(not sure which since she didn't have all the testing), and my uncle's great grandson has celiac. Knowing this I think my uncle(dad's brother) may have celiac or DH and possibly my late paternal grandmother may have had it too. I have a nephew that has battled ADDHD since he was little(he is 18 now). My youngest son was diagnosed celiac last year and my oldest is gluten free now also. He,at the very least, is gluten intolerent since all of his testing is negative. So there are at least 5 family members(including myself and kids) with celiac or gluten intolerence and possibly more.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#15 lovegrov

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Posted 21 October 2011 - 04:26 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
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