**vent** My Loving Supportive Family. Grrrr.

[quietmorning01]

Yesterday I dealt with my kids - trying to inform them of something that they need to be tested for is like pulling teeth.

Last night I found out my youngest son thinks I'm a 'whack job' and a hypochondriac because it's 'always something'.

Well those always somethings are things the docs shove off on me, not things I go seeking. I've been misdiagnosed by docs that know there's SOMETHING wrong and jump at the first two symptoms and ignore the rest. . . ah gee, your neuro test shows that you might have MS. Ah gee, your bones not healing right and alllll the pain you are in. . .you MUST have RSD. Ah, gee, you have Lupus. . .Rheumatoid arthrits, Epilepsy, Chronic Bronchitis. . .lime disease. . . grief, can the list GET anylonger? Heh, how about lymphoma? Pft. Oh, lets not forget Porphryia - they darned near killed me with that one, and made me really incredibly sick with the RSD one.

Well at least the bleeding ulcer misdiagnoses referred me to the GI who knew what to test for. Lucky me.

Pft.

Grrrr.

No, he's young and inexperienced and immature, I can give him some slack.

But my mother.

She has no excuse.

"Yeah, I've talked to a lot of psychologists (she tried to have me committed when I was a young adult many many times - the always left me sitting in the waiting room while the 'worked with her'.) and gluten intolerance can surely make you insane. "

I was a straight A student, I was where I was supposed to be when I was supposed to be growing up, I'm extremely bright - I never did drugs, didn't even smoke pot or drink - and she's STILL looking for a reason to pin insanity on me. Now she has it.

Why is that some people cannot for the life of them acknowledge that bodies get sick an have to be treated? And my gosh. . .I've been on the diet for a couple of weeks now, and for the FIRST TIME in eons, I'm not taking up all the toilet paper in the house. . .

You'd think some would be relieved that their 'loved one' has finally gotten to the bottom of something and they are doing BETTER.

Ugh.

**deep breath**

Ok. . .I'm through venting. . .on with the smiley face. . .hmph.

Thanks for listening to my rant!

[rumbles]

QuietMorning,

You're in good company. I'd venture to say that a great many of us have family members that don't understand or believe that we have this, and certainly aren't

prepared to even consider that they might also have it.

Many of us have who have been in a similar position have learned that as long as

we've given family members the information, it's their choice what they want to

do (or not do) with that information. Those of us that know that we have this

condition, we have to take care of ourselves, no matter what other people think

or want to believe. It's a hard lesson to learn, as we want to help those that we

love, but sometimes they just don't want the help.

Please use a little caution around those that refuse to believe that you have this

condition, - as there are some folks that may try to prove to you that you don't

have this; you will need to be on your guard to make sure that you don't ingest

gluten by accident.

You're signature indicates that you had a positive endoscopy, - if your biopsy

showed flattened villi, you have Celiac, period. If the villi were flattened, it doesn't matter how the blood work came back.

Best of health to you. Please don't feel alone, - there are many of us that understand.

[emcmaster]

Families can be the worst.

I think if I broke out in hives or went into anaphylactic shock after eating gluten, they'd get it.

People understand peanut allergies. No one gives someone with a peanut allergy grief for asking about the oil they fry their french fries in.

You are 100% not alone here. So sorry that your family is so unsupportive.

Give them some time. My family was incredibly unsupportive at first, but after they've seen me get better (even if they didn't realize how sick I was to begin with) and stick to the diet for 3 years, they're loads more understanding and accommodating.

The biggest thing I think that will win them over is when they see you sticking to the diet 100%. It's easy to think someone is blowing things out of proportion, but when they see you sticking to your diet through every inconvenience, it becomes more "real".

[Roda]

My mother in law is supportive in the sense she believes that I have a disease. Otherwise she cracks fun at some of the stuff I eat. I don't care though. We have been to visit once since diagnosed and she was really good about everthing. I did get cross-contaminated but it was my own stupid fault. I ate some coconut macaroons that I did not check on. She checked with me to see if I could have this or that. So I don't care if she picks on me (it's more out of fun) about some things. As for my husband he is great. I have 8 and 4 year old boys and they pretty much understand that mommy can't have some things. They are great too. My parents are very supportive. I have not been home to their house yet since being diagnosed. We are planning a shin dig in July (up in PA) and we are already planning how things are going to be in relation to the food. My brother is going to smoke a bunch of meat and I have already confirmed that all of his ingredients are safe. My mouth is watering allready. My mom has been tested and was told she was fine. No one else will get tested. My brother was diagnosed with sarcoidosis in 1992 and since his remission keeps a rash that won't go away. He suffers from abdominal pain and bloating and has trouble digesting dairy. One of his sons was diagnosed with ADDHD in elementary school (he is now 16) and has been on meds for it. He also is very thin and was slow to grow and the ped said it was due to his meds for the ADDHD. He does not take it anymore and has grown. He also has a lot of gas trouble. I have heard that children with ADDHD can benefit from a gluten free diet. And who knows maybe he was "misdiagnosed". I truley believe that my brother is celiac. He already has one autoimmune disorder. He said he would rather die than not to be able to drink beer and eat bread. He identifies too much with his food since he probably is around 350 lbs. I don't preach anymore. It's up to them to take responsibility for themselves. I am going to continue to do what I need to do for myself and maybe someday it will be an example. Recently I have had symptoms of too much thyroid medication (I have had hashimoto's since 2000) and had some labs done. My TSH is indicitave of hyper. This is the first time since diagnosed with hashimoto's that, with the exception of post partum, I will be decreasing my dose. I truely believe that because my villi are healing I am absorbing my meds better. Just one more thing to reinforce to me that the diet is working and motivation to stick with it.

[QueenTechnoGeek]

Hey, it's okay. I certainly understand. I haven't had quite the experience as you, but I can tell you I've been totally frustrated by misdiagnosis after misdiagnosis. And my husband, who really does try to be supportive, does get exasperated on occasion. I'll not forget the "So what's new, you NEVER feel good..." comment. Thanks a lot. It's not like I *want* to feel bad. It's not like I don't *want* to enjoy life. Paaleeaasseee.

[ang1e0251]

Hang in there. It does take time with the people close to you. They've seen you suffer through all the misdiagnosis' and they are waiting to see if this is another one of those. Your son is young. He'll get it as your health improves. You know if you have a picture of yourself at your sickest and compare your new self as you heal, it will be obvious how much better you are.

Your mother? I don't know what to tell you there. She might be one of those people who have to be right no matter who it hurts. Sounds like she might be trying to justify all those times she wanted you committed. She will probably never change. One thing she did for you is give you and example of the kind of mother you never want to be. You sound like you are light years ahead of her there.

Thanks for ranting here. We can understand even if your family can't yet. When you tell about your experience, others can relate and it helps them as well as you.

[TrillumHunter]

There are plenty of us who went through the list of illnesses. It is frustrating, isn't it? The hardest thing for me was hearing that maybe that's just the way I was meant to be.

I agree that flattened villi trump the blood work.

Keep moving forward!!

[quietmorning01]

QuietMorning,

You're in good company. I'd venture to say that a great many of us have family members that don't understand or believe that we have this, and certainly aren't

prepared to even consider that they might also have it.

Many of us have who have been in a similar position have learned that as long as

we've given family members the information, it's their choice what they want to

do (or not do) with that information. Those of us that know that we have this

condition, we have to take care of ourselves, no matter what other people think

or want to believe. It's a hard lesson to learn, as we want to help those that we

love, but sometimes they just don't want the help.

Please use a little caution around those that refuse to believe that you have this

condition, - as there are some folks that may try to prove to you that you don't

have this; you will need to be on your guard to make sure that you don't ingest

gluten by accident.

You're signature indicates that you had a positive endoscopy, - if your biopsy

showed flattened villi, you have Celiac, period. If the villi were flattened, it doesn't matter how the blood work came back.

Best of health to you. Please don't feel alone, - there are many of us that understand.

I agree with you about (heh, everything, actually) giving the information and just letting them make up their own minds of what they want to do with it. I printed off an informational packet for each of the kids, and just handed it to them, told them that they now had the info and could do what they chose to about it - and left it. The minute I gave it to them - the room was full of protests from my youngest son. . .who has ALWAYS beat feet to the bathroom after a meal. I think the attitude just offed me. I've never gotten much attitude from any of my kids before. But the statement of the 'whack job' really threw me for a loop. Wow. Ok. . .young and dumb - I've been there. . .I know what that is allll too well. **laughing**

My mother and I talked again today - we've come a long way as mother and daughter. She wasn't the best parent in the world, but she's the only one I have. I understand her emotional disabilities. . but sometimes she swipes me good and I get stung by it. . . boy - oh. . .haven't heard the insanity thing in a long time. . .pft. I guess my skin had gotten soft where THAT callous used to be!

She admitted that if there are more Celiacs in the family, then their whole household will turn upside down trying to convert and take care of the problem. I told her that I've been eating a very simple diet - and have been doing well - that it's a process not an all in one night thing. She sounded much more relaxed about it, and didn't sound like she was feeling threatened or attacked.

Any who. . .heh. . . family. . .heh. . .makes this gluten thing look easy.

Thanks for your kind words. . . and I take your warning to heart.

[quietmorning01]

Families can be the worst.

I think if I broke out in hives or went into anaphylactic shock after eating gluten, they'd get it.

People understand peanut allergies. No one gives someone with a peanut allergy grief for asking about the oil they fry their french fries in.

You are 100% not alone here. So sorry that your family is so unsupportive.

Give them some time. My family was incredibly unsupportive at first, but after they've seen me get better (even if they didn't realize how sick I was to begin with) and stick to the diet for 3 years, they're loads more understanding and accommodating.

The biggest thing I think that will win them over is when they see you sticking to the diet 100%. It's easy to think someone is blowing things out of proportion, but when they see you sticking to your diet through every inconvenience, it becomes more "real".

My family isn't very good at 'reality'. . . **laughing** but that's ok. . .it makes life interesting MOST of the time.

I think some good game plans will go a long way, too. LOL. . .my daughter in law's mother invited us to a cook out when we went to go see the kids. . .held out a hamburger bun and said, "you can eat THIS it's WHITE BREAD, there's no Gluten in it!' . . . um. . .well. .. ignorance is the biggest part of the problem here. . .and it's the hardest thing to budge sometimes.

I'll hang in there. I'm feeling better. . .I'm not in pain. . .they will HAVE to notice the difference sooner than later!

Thanks, EmcMaster!

[quietmorning01]

My mother in law is supportive in the sense she believes that I have a disease. Otherwise she cracks fun at some of the stuff I eat. I don't care though. We have been to visit once since diagnosed and she was really good about everthing. I did get cross-contaminated but it was my own stupid fault. I ate some coconut macaroons that I did not check on. She checked with me to see if I could have this or that. So I don't care if she picks on me (it's more out of fun) about some things. As for my husband he is great. I have 8 and 4 year old boys and they pretty much understand that mommy can't have some things. They are great too. My parents are very supportive. I have not been home to their house yet since being diagnosed. We are planning a shin dig in July (up in PA) and we are already planning how things are going to be in relation to the food. My brother is going to smoke a bunch of meat and I have already confirmed that all of his ingredients are safe. My mouth is watering allready. My mom has been tested and was told she was fine. No one else will get tested. My brother was diagnosed with sarcoidosis in 1992 and since his remission keeps a rash that won't go away. He suffers from abdominal pain and bloating and has trouble digesting dairy. One of his sons was diagnosed with ADDHD in elementary school (he is now 16) and has been on meds for it. He also is very thin and was slow to grow and the ped said it was due to his meds for the ADDHD. He does not take it anymore and has grown. He also has a lot of gas trouble. I have heard that children with ADDHD can benefit from a gluten free diet. And who knows maybe he was "misdiagnosed". I truley believe that my brother is celiac. He already has one autoimmune disorder. He said he would rather die than not to be able to drink beer and eat bread. He identifies too much with his food since he probably is around 350 lbs. I don't preach anymore. It's up to them to take responsibility for themselves. I am going to continue to do what I need to do for myself and maybe someday it will be an example. Recently I have had symptoms of too much thyroid medication (I have had hashimoto's since 2000) and had some labs done. My TSH is indicitave of hyper. This is the first time since diagnosed with hashimoto's that, with the exception of post partum, I will be decreasing my dose. I truely believe that because my villi are healing I am absorbing my meds better. Just one more thing to reinforce to me that the diet is working and motivation to stick with it.

That's great that you're decreasing your thyroid dose! I'm hoping to get off the beta blocker (for racing heart rate) after I've been on the diet for a while.

My oldest son is the only one who will talk to his doctor about getting tested. The other two tend to be pretty black and white and know 'mostly' everything. . .**chuckles** My daughter's fiance's father is celiac - so needless to say, he's not going to let her get away with out being tested. . . lol.

My youngest son. . .welp. .. I think he needs to battle a brick once or twice before he's going to be ready to listen - he's just at that age. . .young and immortal. . .dontchaknow.

My mother is who upset me the most. . .but my mother has always been exactly who she is. Expecting more out of her is like asking a loaf of bread to fix the washing machine. . .it ain't gonna happen. . .but still she sure can sting me good sometimes. I'm better today - it takes me a minute to recoop from a good jolt from her.

It's hard to see loved ones suffer, though when you know there is something that can possibly help. . . sigh. . .

[quietmorning01]

Hey, it's okay. I certainly understand. I haven't had quite the experience as you, but I can tell you I've been totally frustrated by misdiagnosis after misdiagnosis. And my husband, who really does try to be supportive, does get exasperated on occasion. I'll not forget the "So what's new, you NEVER feel good..." comment. Thanks a lot. It's not like I *want* to feel bad. It's not like I don't *want* to enjoy life. Paaleeaasseee.

LOL! Dontcha want ta just find a nice big sock to get in the way of the air coming out when they say that??!!

Empathy is a hard find sometimes. It's frustrating. . .my husband has had such a run for his money since we've been married and through out our friendship / dating / engagement. The man deserves a medal! He didn't understand at first why I HATED to go see doctors until he was around for one of the more serious diagnosises. Wow. . that one blew up both away. . . I had to really get on top of people to get that diagnosis cleared. . .(RSD) it was so way off.

By the time things were said and done, he said he completely understood why it's so frustrating and infuriating with the whole medical thing. . .'but there is SOMETHING WRONG and we need to find out what that something is." I so love this man!!

[quietmorning01]

Hang in there. It does take time with the people close to you. They've seen you suffer through all the misdiagnosis' and they are waiting to see if this is another one of those. Your son is young. He'll get it as your health improves. You know if you have a picture of yourself at your sickest and compare your new self as you heal, it will be obvious how much better you are.

Your mother? I don't know what to tell you there. She might be one of those people who have to be right no matter who it hurts. Sounds like she might be trying to justify all those times she wanted you committed. She will probably never change. One thing she did for you is give you and example of the kind of mother you never want to be. You sound like you are light years ahead of her there.

Thanks for ranting here. We can understand even if your family can't yet. When you tell about your experience, others can relate and it helps them as well as you.

You know. . .waiting to see if it's another misdiagnosis is, I think where my two children are coming from. I think you're very right concerning their understanding.

She did make me a MUCH better mother. . .in a lot of ways. . .not just the ways not to be. . . honestly. She has some serious stuff going on, and will always probably be there. I understand them as an adult - barely survived them as a child. We've come a long way, she and I. I love her very much. . .but boy-o sometimes she can really zing me good.

It was good to come here and have a safe place to blow without causing harm. I felt so much better and was able to calm down after I got it off my chest. All of you are wonderful! Thank you for listening!

[quietmorning01]

There are plenty of us who went through the list of illnesses. It is frustrating, isn't it? The hardest thing for me was hearing that maybe that's just the way I was meant to be.

I agree that flattened villi trump the blood work.

Keep moving forward!!

UH. . .well. . .I don't honestly think ANYONE was MEANT to be this way. . .but I think a lot of good can come out of it.

THAT I'm sure of.

I do know that some of the oddest stuff takes some of the neatest people to deal with it. . .or maybe it's a chicken and an egg thing. . .one molds the other. . .and vice versa? I don't know.. . I won't say I'm thankful for this. .. though I'm incredibly thankful it's not MS and absolutely on my knees thankful it's not RSD. But I am thankful that I know what it is FINALLY. Yay!! Now I'm ready to go make something good come out of it.

**nods**

Yeah. That's it.

Meetcha there! **grins**