Beyond Frustrated With Family

[Duhlina]

My aunt was gracious and made me my own bowl of gluten free stuffing for Thanksgiving dinner which was great but I've been on her for a month now bugging her to get tested and she just REFUSES! My mom's doctor won't test her because she "doesn't have any of the symptoms"......but my aunt? She is CLASSIC celiac. She went so far at dinner to tell me that her GI doctor (that *I* went to - the one who INSISTED during my endoscopy that I didn't have celiac) diagnosed her years ago as having Crohn's disease. She insists she doesn't have that. YEAH, BECAUSE YOU HAVE CELIAC DUMMY!!! She has terrible migraines, osteoporosis, terrible stomach issues, very thin, etc., etc., etc.

I guess I can lead the horse to water.....there is no way to FORCE her to get tested but it's SOOOOO frustrating!

Anyone else have family that just outright refuses to be tested even though they have almost every symptom under the sun?? I guess she figures she is like 68 now and she's not changing!

[Celtic Queen]

I feel your pain. My best friend has been diagnosed with fibromyalgia and also has thyroid issues. She's always exhausted and her muscles constantly ache. She has poor memory and brain fog. Plus, I believe she has gluten ataxia. And she's had gastro problems for years related to panic attacks. In short, she has a lot of symptoms of a classic Celiac.

She's been to a host of doctors - gp, gi, ortho, rhumetologist, etc. Not one has mentioned Celiac.

I've told her about the diet. She knows I'm totally off gluten. I've explained to her how many of her symptoms could be related to the gluten. I told her that she could probably get off a lot of her medicine if she was on the diet. Heck, I even sent her a powerpoint with all this info. I've tried. And she's "looking into it." But I know she won't do anything about it. It frustrates the h*ll out of me. I know she could feel so much better. But I also know she won't do it.

This morning I decided I'm going to pray for her. I'm frustrated cause I can't make her do anything about this. But I can pray. It's the one things I can do.

[Strawberry-Jam]

my grandmother is the same way. she's suffered from chronic pain and fibromyalgia for decades, and has recently had lots of constipation/digestive issues that land her in the hospital with obstructions at least once or twice a year. She takes loads and loads of medications which only take the edge off, and has to give up doing things she wants to do and visiting with people due to pain.

she promised me that she would get the damn blood test, but hasn't yet. she's in and out of doctor's offices all the time; it wouldn't hurt her at all to just get the test ordered and have it drawn next time she's in the hospital for some other kind of test or doc visit. but she doesn't care enough to do it.

I was hoping that seeing how well I'm doing gluten-free would help her decide to go ahead, but I'm having a relapse of symptoms after a massive improvement... so I guess that doesn't give her any hope. luckily I don't know how much she knows about my relapse since I'm in another country atm. hopefully i'll figure out the relapse and correct it before I go home and see her again.

I mean, coeliac is genetic, and I had to get it from SOMEWHERE, right? my mama was negative for coeliac but had one of the genes. which means it is very likely that grandmamma has it.

[Roda]

Been there done that and have the T-shirt. Both my parents eventually did get screened. Their doctor said their tests were negative, but the idiot wouldn't give them a copy of the tests. Anyway, I believe my Dad has celiac. He has all the classic symptoms and has for as long as I can remember. He is seeing so many doctors for GI issues, neuoropathy, low vitamins, etc. He thinks just because he had a negative test(I'm wondering if all or even the right tests were done to begin with) that he can't have it. He doesn't seem to get that it can be positive down the road. I got mad that his doctor refused to do an upper scope when he went in for a colonoscopy recenty. He was having issues. I figured it was going to be clean(exception of a few polyps, but he has had them before), so no answers for his "changes." I'ts a moot point anyway because he is set in his ways, refuses to see what is staring him in the face and is content taking a handfull of pills, that aren't working. His choice.

Oh, then there is my brother. He is worse than my Dad!! He refused to even be blood tested. I'm pretty sure he has it too. He has had sarcoidosis since 1992 which is in remission, a rash that I believe to be DH, severe lactose intolerence and a host of other GI issues. He is so absorbed in his food world that he said he would rather die than to give up his bread and beer. The irony of that statement is that it is what will probably do him in.

Then there is my neice, my above mentioned brothers daughter. She is 20 and been having issues for the past year or so. Long story short, her doctor diagnosed her with colitis(from a colonoscopy) and IBS. Her doctor wouldn't run the celiac blood test and she hasn't had it done or asked since. She has identified trigger foods, I think wheat being one of them, but I think she is in denial too. Here is a link to a thread about her.

What it boils down to is all you can do is give them the information, do what you have to do to keep yourself healthy and hope that your example will be enough. If it isn't then you can't focus on it. I feel bad that my family won't get on board, but it's there life. I don't harp anymore.

[Ellie84]

We can all understand your frustration here. This may sound harsh, but you can't protect people from their own stupidity. After my diagnosis a lot of things surfaced: most female family members have GI problems, are too thin and have had multiple miscarriages. Oddly enough, my family simply refused to get tested, even though my grandmother always had GI problems and died of colonic cancer. I just wish I had been diagnosed earlier so we would have been able to diagnose my grandmother as well

[zimmer]

My mom got tested over 6 months ago - but she says the doc didn't give her the results. She won't call and ask. Mind you, she's been back in his office multiple times since then. She "forgets" to ask. She promises, "I'll call Monday," etc, but of course, never does. How frustrating is that!

My brother listens, and says he'll "look into it." My sister - "hmmmmm. You don't say....."

My oldest child's blood levels were higher than mine, but she won't stick to the diet.

All very frustrating to say the least. I feel like I've done all that I can, and just let the rest go.

[pricklypear1971]

I'm waiting til after the holidays to drop the big bomb on the whole family, but select members know - including my parents.

At first my Mom said no way, my Dad is adamantly NO (and he won't change).

I noticed in the last few weeks my Mom is phrasing things in certain ways... to let me know she's seeing how it goes with me before she jumps in. So, when they come for Christmas I will be a rat in a lab under the microscope (umm, the cook in the gluten-free kitchen getting critiqued???).

[Katrala]

How was your aunt diagnosed with Crohn's disease? Was it via colonoscopy?

[Duhlina]

How was your aunt diagnosed with Crohn's disease? Was it via colonoscopy?

Yes, she was diagnosed via colonoscopy but *she* insists she doesn't have Crohn's.

I'm SO glad I'm not the only frustrated person here! I have a girl I work with that has been diagnosed with Lupus and has terrible health issues. She's so young, I'd say maybe 30ish. She absolutely, flat out REFUSES to get tested for Celiac. REFUSES and actually gets ANGRY at the suggestion. Like someone else said, all it starts with is a blood test. You're at the doctor for other things anyway, why not just do it? If anything, PROVE ME WRONG! But nope, she won't do it and this girl LIVES on gluten. She will not eat fruit or veggies. She lives on pizza and carbs. Whatever. I'm just trying to help!

[Di2011]

It is going to be hard for any of us to live work and walk down the street recognising people that need help. I hope that we can get past it.

I've got a few decades of gluten-free yet so I hope that I can work out some ways of either bringing it up or not bothering with people who won't be interested.

[sahm-i-am]

It is actually crazy how people avoid the Celiac test. I have finally stopped asking and talking about it. I sit and listen to them complain about ailments, trying this or doing that, nothing is helping. I roll my eyes and say to myself "Idiot!". If I (who never had one GI problem ever before diagnosis) can have Celiac why in the world would someone who has tons of classic symptoms AND be a direct blood family member think they don't have it? It is pure ignorance - they don't want to have to change their lifestyle. They have seen the pains and isolation that being gluten free has caused us (it is hard at first, but does get easier) so why would they want that? I NEVER complain anymore about being gluten-free. I make it out to be like a carnival event if I have to. I don't want my negativity to sway their view anymore. And it helps me stay at peace with the entire thing. Cause if I really think about it too much I will want to strangle my extended family!! (Totally love them, but geesh!)

NOW, my husband??? Who tested POSITIVE for Celiacs last year? Will he go for an endo or try gluten free like me and my daughter? NO! (His brother and aunt has Celiac).

Don't even get me started there! I have to accept that it is his body and he is setting a bad example for our daughters, but I can't make him do it. He is a big boy - he can die early of horrible autoimmune diseases if he wants to. He knows this. But all I can do not nag and isolate him. He is totally supportive of me and my daughter's lifestyle and I have complete trust that he will not ever be careless. He knows Celiacs is real. Just not in his body! Denial is a stong thing!

[kareng]

NOW, my husband??? Who tested POSITIVE for Celiacs last year? Will he go for an endo or try gluten free like me and my daughter? NO! (His brother and aunt has Celiac).

Might I suggest you up his life insurance & disability insurance? Suggesting it to him might make him realize its serious.

I have given up in my family. They just laugh.

My brother who has Raynauds (sp?) which is an autoimmune disease, just laughs. He went gluten-free with his wife for a couple of months because she has a lot of allergies & it was sort of an elimination diet. He said that they "researched" Celiac and found that the only way you can be sure you have it is during an autopsy (when you are dead). They weren't very strictly gluten-free as they ate at restaurants & took the croutons out of the salad, etc. What a surprise that it didn't help anything!

My parents (83 & 78) don't think they have any symptoms. They won't even mention it to thier doctor (if that would do any good). My sister just laughs, too. Her daughter is the only one that takes it seriously. She is keeping a close eye on her boys & herself for any problems.

The only ones I really have any control over are my kids. They get tested but so far, are negative. They don't really have any symptoms, so we don't push it.

[Katrala]

Yes, she was diagnosed via colonoscopy but *she* insists she doesn't have Crohn's.

I'm not aware of whether or not celiac can cause (or have any affect on) Crohn's. However, if she's been diagnosed with Crohn's, why do you think she has Celiac? Is there something else going on?

My GI thought I may have Crohn's (a colonoscopy came up negative) before I was diagnosed with Celiac, so my knowledge is a year old based only on internet readings.