[nu_to_no_glu]

I was diagnosed with Gluten Intolerance several months ago by an allergist/immunologist who practices both conventional and some holistic medicine, never had an endoscopy bc I was fed up with drs and the constant amount of medicines and IBS diagnosis'. My husband has suffered from depression, ADD, etc for quite some time. I decided to force him to go and see my dr, bc the more I read, the more I'm convinced he would benefit from a gluten-free diet as well. Guess what...turns out-he is intolerant!

Anyway, to get to my rant...my sister is a dr, a family practitioner. I told her about my husband's diagnosis and she said "I don't know what to say about that, I don't really believe that exists" Huh??? So annoying and frustrating. When I was having "accidents" in my pants, making trips to the ER, in constant pain, and going from dr to dr,always frustrated, she would get mad at me and tell me it was me,and the drs knew what they were doing and I needed to listen to them (even though,after 30 years, I think I knew something wasn't right). Anyway, I guess I'm just annoyed for someone to be so closed minded.I'm not pushing my convictions on anyone, but there's no denying that I am so much improved from my diet. Argh, my other frustration is, at this point my husband and I are convinced that our 2 year old needs to be on the gluten-free diet as well, and she loves having him over. I don't want this to ruin that, either. So frustrating! I already doubted myself so many times before my diagnosis, this is not helping

[tarnalberry]

It's not widely accepted yet that you can have non-celiac gluten intolerance. You could - relatively fairly, since you haven't done testing - say "we have a presumed diagnosis of celiac disease." If she asks for details on the presumed, you can say "we don't have an endoscopy, but we have dietary challenge results that were positive. we, and the doctor, are working with this diagnosis now." End of story.

(Of course, that's a bit of a fib, but one I would consider for "the sake of family".)

[ravenwoodglass]

nu_to_no_glu, on Nov 21 2009, 09:12 PM, said:

I was diagnosed with Gluten Intolerance several months ago by an allergist/immunologist who practices both conventional and some holistic medicine

You were diagnosed by a doctor. He didn't just pull the diagnosis out of his butt. I am sure you had considerable symptoms that lead him to suspect that you might be celiac and the elimination of gluten and the resolution of your symptoms proved that his suspected diagnosis was correct. Unfortunately some doctors get a 'god complex' when they get their degrees and think they know everything and that modern medicines and the 'proof' provided by testing is the only way to diagnose any disease. With celiac the tests are not as good as would be liked and up to 20% of us are missed by conventional medical testing. This is accepted by the NIH and acknowledged by them. Your sister has a lot to learn and I feel sorry for all the folks she treats who may have celiac and will suffer for years because she only trusts the tests that leave much to desired.
I hate to say this but I would limit her visits with your child to your home or outings with you. You need to keep your child safe and that trumps keeping your sister happy. I hope she wakes up soon. Her eyes should have opened with the resolution of your health issues. Perhaps she is having symptoms herself and is deep in denial. Whatever you need to ignore her and do what you know is best for your family. With the high rate of celiacs in this country and the strong inheritance pattern of this genetic difference chances are a celiac diagnosis is in her future or her childrens.

[nu_to_no_glu]

Thanks! Both excellent advice. I'm so happy I can come here and vent. I don't know why I get so personally upset about other people. This whole experience has made me somewhat jaded with the medical industry, yet alone my own family. Funny, my dr didn't have to prescribe me any medication, or sell me anything...yet, he still makes a living *sarcasm* and he still wants to treat me. On a side note, my sister does have MS, and I've told her to look in to gluten-free and MS connections. I guess I can't have these conversations with her, since she's the expert *more sarcasm* I guess I just need to focus on my little family, and ignore her ignorance.

[Alphawave]

Hi there. I have some posts on this subject, as I am getting flack back from certain family members. But, I note that you are dealing with a "doctor" in the family. I am a 55 yr old nurse, and I can tell you that plenty of doctors have a stiff-necked approach with patients. Many have certain old school teachings that doesn't allow them to think outside the box. Others, are overworked, impatient and rigid in their diagnosises. Some don't want to be told ANYTHING that they don't know already. You KNOW you are right, and your sister need to have enough advocacy for YOU, the patient, to listen to your plight and final diagnosis, and of course treatment :gluten free diet. Here is how I would approach a medically trained family member. Print up articles on Pub Med that discuss Celiacs and research. Silently send them to her or hand them off to her. If she is any kind of doc at all she will at least read the published materials. Don't argue or try to "win her over". I am sorry you are having this trouble, but don't give in, and if you even THINK your child has inherited this problem, send gluten-free food over to your sister's house when you send your child.

I do know how frustrating this matter is, as I am going through it, but with ignoramouses in my family. We need to stick together!

[Ahorsesoul]

What a fun project, to convince her she should try a gluten free diet.

[lizard00]

nu_to_no_glu, on Nov 22 2009, 11:38 AM, said:

my sister does have MS, and I've told her to look in to gluten-free and MS connections.

WELL... I don't believe in MS, so it MUST not be real

Glad she's not my GP.

[ravenwoodglass]

nu_to_no_glu, on Nov 22 2009, 08:38 AM, said:

Thanks! Both excellent advice. I'm so happy I can come here and vent. I don't know why I get so personally upset about other people. This whole experience has made me somewhat jaded with the medical industry, yet alone my own family. Funny, my dr didn't have to prescribe me any medication, or sell me anything...yet, he still makes a living *sarcasm* and he still wants to treat me. On a side note, my sister does have MS, and I've told her to look in to gluten-free and MS connections. I guess I can't have these conversations with her, since she's the expert *more sarcasm* I guess I just need to focus on my little family, and ignore her ignorance.

Unless your sister had a spinal tap that confirmed MS she really needs to try the diet. My ataxia was misdiagnosed as MS, especially since they found the white matter lesions on the MRI. But since those lesions were not quite in the right places eventually my neuro did a spinal which he decided ruled out the MS. The symptoms of ataxia can mimic MS very strongly. I hope she wakes up soon. It could change her life for the better even if she isn't having strong gut symptoms.

[Lynayah]

nu_to_no_glu, on Nov 21 2009, 08:12 PM, said:

I was diagnosed with Gluten Intolerance several months ago by an allergist/immunologist who practices both conventional and some holistic medicine, never had an endoscopy bc I was fed up with drs and the constant amount of medicines and IBS diagnosis'. My husband has suffered from depression, ADD, etc for quite some time. I decided to force him to go and see my dr, bc the more I read, the more I'm convinced he would benefit from a gluten-free diet as well. Guess what...turns out-he is intolerant!

Anyway, to get to my rant...my sister is a dr, a family practitioner. I told her about my husband's diagnosis and she said "I don't know what to say about that, I don't really believe that exists" Huh??? So annoying and frustrating. When I was having "accidents" in my pants, making trips to the ER, in constant pain, and going from dr to dr,always frustrated, she would get mad at me and tell me it was me,and the drs knew what they were doing and I needed to listen to them (even though,after 30 years, I think I knew something wasn't right). Anyway, I guess I'm just annoyed for someone to be so closed minded.I'm not pushing my convictions on anyone, but there's no denying that I am so much improved from my diet. Argh, my other frustration is, at this point my husband and I are convinced that our 2 year old needs to be on the gluten-free diet as well, and she loves having him over. I don't want this to ruin that, either. So frustrating! I already doubted myself so many times before my diagnosis, this is not helping

My reply to her . . . "I don't know what to say about that . . . an estimated one in seven people have gluten sensitivity . . . and any physician who is not up on it is not doing her homework."

GRRRRRRRR!

Sadly, it is doctors like her who make the gluten-free community crazy. She needs to learn. Perhaps you are meant to teach her, as painful as it may be. Everything happens for a reason.

In the meantime, she's being a jerk.

I hope she responds. I hope she will learn.

If not, you hold her, and I'LL HIT HER!

Hugs,
Lyn

[Ahorsesoul]

lizard00, on Nov 22 2009, 04:59 PM, said:

WELL... I don't believe in MS, so it MUST not be real
Glad she's not my GP.

Love it!

[nu_to_no_glu]

ravenwoodglass, on Nov 22 2009, 06:32 PM, said:

Unless your sister had a spinal tap that confirmed MS she really needs to try the diet. My ataxia was misdiagnosed as MS, especially since they found the white matter lesions on the MRI. But since those lesions were not quite in the right places eventually my neuro did a spinal which he decided ruled out the MS. The symptoms of ataxia can mimic MS very strongly. I hope she wakes up soon. It could change her life for the better even if she isn't having strong gut symptoms.

Hmmm...she was diagnosed bc she lost vision in one eye (optic neuritis) and lesions showed from a MRI. She was on rebif for a while, and then diagnosed with lymphoma. After chemo and radiation, she had a bone marrow transplant and now she doesn't have any MS symptoms, besides her vision never fully returning to the one eye. It's been quite a while and she's been through a lot, but she's pretty much recovered. I've tried to initiate conversation about gluten, but as you can tell, she is pretty resistant to the idea. So, rock+hard place = me.

[nu_to_no_glu]

Ahorsesoul, on Nov 22 2009, 06:26 PM, said:

Love it!

OMG...she'd get so angry if I said that to her...hahahahhahaha...she's not the nicest person, either. Maybe I should whip this one out at the dinner table on Thanksgiving

[Salax]

I love that come back. I totally would pull that out at the TG dinner table.

There are 2 types of people in this world:

1. There are the ones that learn the easy way/willing to learn.
2. There are the ones that have to learn things the hard way.

Sometimes you got to "smack them upside the head". She needs a wakeup call, fast! She may only learn by aggressive means.

Besides what’s the worst that can happen, she doesn't talk to you? So what, if she's a mean person, who cares....

That's just me.

I wish you the best of luck with this and the false reality your sil lives in....Oh ya, and the rest of us are not really celiac disease suffers......it’s all in our heads...."does that mean that I am crazy?" Been told that by a few docs....idiots! WOOT! Sorry had to throw the sarcasm out there...LOL.

Maybe the problem with her is if you can't treat it with a pill.....it doesn't exist?????

[TrillumHunter]

Don't do that. You are a better person than that. Be calm and be positive about the great changes in your health going gluten-free has brought about for you. If you find a journal article about MS and Celiac, and there are plenty, pass it to her without much comment. The link is real and she could be damaging her health by continuing to eat gluten. This could be a matter of life and death for your sister. Lure the horse to water with sugar; don't drag her down.

I'm not saying she hasn't been unkind. She should know better, especially as a physician herself. I'm sorry she's been cruel to you.

I'm one of those also misdiagnosed with MS when I first got sick. Being correctly diagnosed and starting the gluten-free diet made my symptoms go away for the most part.


Take care and be well! Better for you to love her even if she hates you.

[Ahorsesoul]

nu_to_no_glu, on Nov 23 2009, 01:38 PM, said:

So, rock+hard place = me.

I disagree with your statement. Should it not read:
So, rock+hard place = your sister

It's her loss. You've tried to give her another option to feel better in her life. I am proud of you.