How To Notify Family

[pricklypear1971]

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!

[mushroom]

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.

[pricklypear1971]

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.

[mushroom]

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

[kareng]

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.

[pricklypear1971]

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.

[kareng]

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.

[pricklypear1971]

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.

[Judy3]

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..

[Marilyn R]

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.

[melikamaui]

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.

[adab8ca]

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)...

[pricklypear1971]

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.

[Roda]

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.

[lovegrov]

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

[pricklypear1971]

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.

[zero]

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.

[Bubba's Mom]

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?

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...

[carecare]

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.

[pricklypear1971]

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?????

[Bubba's Mom]

Couldn't hurt to mention it?

[pricklypear1971]

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.

[Celtic Queen]

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.

[pricklypear1971]

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

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

[cap6]

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...... !