"celiac Isn't Hereditary"

[Emme999]

Today my mom and I took my dad to the emergency room because he has pneumonia, but before we could get him admitted we had to see his general practitioner (internal medicine doctor). While I was there, I said to him, "I was just diagnosed with Celiac and I'm pretty sure that I got it through him, so we would like you to do a test for that at some point too."

His reply: "Celiac isn't hereditary. Some people will find it in their families, but most often they don't. I don't think we need to worry about him having it."

WHAT?????

My dad has hypothyroidism, is on the verge (according to his endocrinologist) of diabetes, is bi-polar, has so much heartburn he takes 3 nexium each day, has chronic neurological pain, is depressed/anxious out of his mind, can't think clearly, hasn't had a bowel movement in 3 days, has ulcers, rarely has enough energy to get out of bed, is constantly having dental/gum problems, and has been suicidal for about 15 years because doctors keep telling him that there is no hope and he just needs to get a hold of himself.

But it couldn't be celiac disease!

I am outraged that so many symptoms can be ignored, and that even when a member of someone's immediate family has celiac, the idea of testing for it is considered ridiculous.

I am *so* sorry for all of you who have had to deal with this in your own lives. I am absolutely furious. When his doctor said that to me I was so completely dumbfounded I didn't know what to say. I am completely appalled that this respected doctor can disregard my fathers life so carelessly because he doesn't really think there's any point in a simple blood test.

AAAAARRRGGGHH!!!!

Does anyone know of a soldier of fortune who works specifically on doctors who are complete idiots? If so, please email me their phone number!

- Michelle

[tarnalberry]

You could try printing out the journal abstracts from pubmed identifying the genes that cause celiac disease and going back to the doctor...

[Guest nini]

Michelle, I'm so sorry. That really gets me when medical Dr's think they are so superior that they can't be bothered to LISTEN to a family member or a patient for clues as to what is wrong. I'm developing yet another theory that the medical community doesn't want people to find out they have Celiac because then they won't be able to get their kickbacks from the pharmaceutical companies! Seriously, listen to your gut (pun intended) and be your dad's advocate. Print out as much info as you can with his relevant symptoms linked to celiac and highlight this and hand deliver it to your dad's dr. and politely tell him that you would like him to run the tests to at the very least RULE THIS OUT and set your families mind at ease.

I actually had one of the Dr's in my daughters Ped. practice tell me that just because I was dx with celiac that didn't mean that my daughter had it (me, Oh really? Then why does she have ALL the same problems I had as an infant and small child??? )

[celiac3270]

Definitely is...yes, get some reputable articles to show--while 1 in 133 in the US have it, it's 1/20 and 1/40 of the people w/ relatives (1st and 2nd degree)

[KaitiUSA]

Yes, try giving some articles. Beat them with the facts, then they will not know how to respond. The fact is that it is genetic ..and the reaction of many doctors is like what you got. I know it is frustrating. You should insist him to be tested for celiac. He does have alot of symptoms and seems to be suffering. If the doctors are too ignorant to flag it then you let them know what they will be testing for. When my old doctor told me I could not get a blood test I just said that's fine I will get it elsewhere then she gave one to me.

[Canadian Karen]

In the words of Bugs Bunny: "WHAT A MAROON!!!!"

Unbelievable.......... well, actually......... I do believe it. Just another reminder that the medical establishment hasn't come up to speed yet on celiac......

Karen

[ianm]

I'm developing yet another theory that the medical community doesn't want people to find out they have Celiac because then they won't be able to get their kickbacks from the pharmaceutical companies!

That says it all. Modern medicine is not about making the patient better. It is all about keeping them sick so they come back for more useless medications. Because the only cure for celiac is a gluten free diet how is the doctor supposed to make money? Time to find a new doctor for your dad Bean.

[mommida]

My thoughts and prayers are with you and your family at this time.

I agree with nini and ianm. Conspiracy theory!

Laura

[celiac3270]

Definitely... when asked why celiac wasn't better known, Dr. Green said that it's because pharmeceuticals plays an enormous role in what medical students get taught... if there's money to be made from medication, they'll spend lots of money to make sure the soon-to-be doctors know about it.

[Guest Eloisa]

Every doctor I've been to except my gasto one didn't have a clue. Sometimes I think they buy their degrees.

[lbsteenwyk]

Take your doctor a copy of the NIH Consensus Panel on Celiac Disease. This should educate your doctor. Here's a link:

Open Original Shared Link

[Emme999]

Thanks everybody. (I appreciate the NIH link in particular, since I don't really have enough time/energy to look too much up right now!)

The only thing is - I think this doctor is a miserable worthless piece of green rat ... poop. (I'm trying to stay G rated ) He appears to be one of those M.D.'s (M. Dieties) who thinks that his patients are all a bunch of ignorant fools who should just bow down to his infinite wisdom and get out of the way. So, if I *did* take him info, I *really* doubt that he would read it.

I simply need to get him to another doctor, that's all there is to it *sigh*

Oh well, it could be worse... it could be *me* with the loser doctor!

BTW - I want to mention that *my* doctor is an absolute angel. She called last week to tell me that she found out that Ben & Jerry's is gluten free (except for a couple). She was so happy to have good news for me - until I reminded her that I'm allergic to dairy But she has been so so so wonderful. Since I've had my diagnosis, I've probably talked to her for about 30 minutes (cumulatively) each week as we answer each others questions. So, not *all* doctors are bad. I wish that my dad could see her, but she's a doctor at the Student Health Services at the University that I attend so they only take students.

Anyway - thanks again to everyone. You guys are wonderful.

- Michelle

[SofiEmiMom]

Maybe your doctor could recommend a good one for your Father...great minds think a like and hang out together so maybe she would have someone in mind. As for not being genetic, send your Dad's doctor over to my house for dinner. Myself, my father, brother, and two young children all have Celiac:). My opinion of doctors is not very high after having been a lifetime guinea pig myself.

[Guest gfinnebraska]

My sons would LOVE it if it wasn't hereditary... they are both anxious at the thought of having celiac disease. Thank God they are both symptom free at this point ~ very healthy, doing great. My daughter, on the other hand, KNOWS she will not get it from me... she is adopted!! She use to ask me all the time if, when she was a Mommy, would she not be able to eat pizza either?? Hahahaha!! Cracked me up!

Good luck finding a new dr. for your Dad... hopefully this will be his year to find great health.

[mcalistorm]

Michelle

Sounds like what happened to my family. After I went years seeing clueless doctors, including gastrio specialists, I had a customer who was a celiac researcher tell me what was wrong. Two years of me gluten-free later, my dad had been exhibiting the same symptoms, and worse, for 12 years and his doctor refused to test him. I finally insisted..suprise, suprise, positive results. Doctor Dipsitick, a gastrio specialist btw, still claimed it was impossible since " Dad was too old to have celiac" a direct quote. Agreed to the upper GI anyway and whata ya know Dad has celiac disease. Apology from DD? Acknowledgement I was right ? hahahaha..yeah right!

Then for the kicker. Mom has been sick for much longer. However she kinda lied about her symptoms so when we finally got her an upper GI, yup Mom too! Doc Dipstick very confused he thought she couldn't have it because..get this...three people in the same family was such long odds since we were not genetically linked.

I am adopted ya see So Kimberly you might want to check your daughter out anyway, long odds but it happens

If anyone does find the clues doc assassin we can skip doctor dipstick. After dealing with my family, he has been reviewing his patients and has been finding an amazingly large number of them now fit the celiac disease profile. He is still a pompous a** however.

New to the board but REALLY glad I found it.

[Guest Viola]

Michelle, how is your dad doing now? I do hope that he is improving.

Welcom to the forum mcalistorm, you will find it very helpful and entertaining

[Emme999]

mcalistorm -

Wow! Your mom AND your dad! That's wild stuff. I'm glad that *you* were able to find someone to help you! Welcome to the forum

What that doctor said... Holy hell, those kind of doctors should be lined up and shot! But, what do ya do, uh?

Be sure to check out our list "You know you have celiac if..." One of them is "... if you've ever had to give a doctor a crash course in Celiac 101"

I actually took that list to my (wonderful) doctor today. She loved it and is thrilled that I have found this forum to help guide me through this.

Me too

- Michelle

Viola -

Dad still hasn't been tested

[SofiEmiMom]

I just bought this new childrens book about celiac disease and the foreword at the front of the book is by Dr. Alessio Fasano who, as a lot of people on this board know, is the Director for the Center of Celiac Research at the University of Maryland. His direct quote:

"Shake the tree in which one family member has been diagnosed with Celiac Disease and more are certain to follow. celiac disease or Gluten Sensitive Enteropathy is a GENETIC, autoimmune digestive disorder..."

[Anne Downs]

Dear Bean,

You have my sympathy. A similar thing happened with my father in Baltimore last fall. He has had major G.I. problems for years and was having his second abdominal surgery--this time for colon cancer. I asked him to ask his surgeon to check for celiac. He told the Dr that his daughter in CA has celiac and wondered if he might have it, too. The surgeon just laughed at him and said, "If you had it you'd know!" My father thinks doctors are like God and that I am like a teenager who is below average, so end of story.

They are so happy with their IBS diagnosis, which seems to mean "Ignorant, but satisfied" or "I don't know s... about the cause, but here's a meaningless label."

Hope you dad is doing better despite the atrocious medical establishment.

Anne

p.s. anyone know a celiac knowledgeable Dr on the Monterey Peninsula?

[hsd1203]

At the risk of being attacked mercilessly as an evil medical student, I can offer that hopefully this ignorant doctor business will be getting better... more schools are starting to teach about this, and I know that a gluten intolerant classmate and I have done a lot to teach our medical school classmates all about celiac... while I dont really think its any of their business about my bowel habits or depression, I have told anyone who has shown the least bit of interest all about it in the hopes that it would remind them to check when they have a patient with similar symptoms. While there are a lot of crappy doctors out there, there are some good ones, and should be more coming up so keep looking, since for better or worse, most people do have the choice to change doctors until they get what they're looking for.

[Guest Viola]

I agree, there are some good doctors out there, even though it does take time to find one that knows about Celiac. I'm not sure a doctor can be considered bad because he didn't learn a disease in medical school ... perhaps it's the school that is at fault. And maybe the Celiac community should be lobbying the medical schools.

I've never been able to understand how IBS became a diagnosis, I realize it is Irritable Bowel Syndrone, but doesn't something else have to cause the bowel to be irritated in the first place? It's always been a puzzle to me.

[scotia]

Hi people, glad to see that we're not relying on the docs for their 'information' and 'expertise'.

I have a great doctor and when we couldn't find out what the problem was, he referred me to a specialist who did blood tests then I had the biopsy and found out it was celiac disease.

I have heard that sometimes you are dealing with some dos/specialists 'egos' and that can be more than deadly.

I am glad my GP cared enough about me to send me to see someone who knew more than he did.

It's your body guys/gals, if you don't feel right go see your doc, if you're not happy with what he/she has to say, get a 2nd opinion.

This is after all, our lives we're talking about here.

Good luck with your journey down 'Celiac Highway', it gets easier the more mileage you do.

Ciao'

Scotia.

[stef-the-kicking-cuty]

That with the 2nd oppinion isn't just always working with celiac disease. With me it was probably the 30st opinion. And still it was me who found it out, not the doctor. He still doesn't believe...

[sonjaf]

Hi! I am new to this site, and a new celiac disease patient. I am 35 and was diagnosed in March 2005. I am currently having my children tested, but my parents refused to get tested. My mom's doctor said he didn't see any reason to test her because she is in her 60s and would know by now if she had problems. She is taking his opinion as sacred, even though she has ALL of the symptoms that I listed for her, except one. She has had GI problems most of her adult life, and depression probably all of her life, but she still refuses to believe that she has it. I told her that it IS hereditary and I got this from her or dad. Is this true? If so, does this mean that for sure one of my parents had to have it to give it to me?

I had a positive biopsy, so I know for sure that this is indeed celiac disease. I have been trying really hard to stay away from gluten, but it's not been easy. I keep missing things and am still learning everyday something new I can't have. If there was just one good list that listed EVERYTHING that I should avoid!!!!!!

Glad to find a place I can learn more about this. I am already feeling sooooooooo much better!

S

[Guest Viola]

By the sounds of things, it could well be your mom that passed it on, however, I think it could skip a generation and have the grandparents pass it along.

Welcome to the forum, I'm sure you will find lots of helpful people and information on here