"celiac Isn't Hereditary"

[Ruth]

Kimberly...I'm not sure if you've already had them tested but...if not...

Even if your kids are symptom free... please have them tested.

My symptom free kid... the one I'm positive didn't have celiad had very high positive blood tests and biopsy (severe damage to her intestines.) She is on the gluten-free diet so she won't get the symptoms!

[Matilda]

..

[LIMPIA]

hello everyone,

i am new to this forum. i am usually at braintalk.org's gluten forum. i began at braintalk due to my son's dx of adhd and tourettes, however, my reading pubmed and what others offer online at the gluten braintalk site, i have realized that our family almost certainly has either gluten sensitiviity or celiac. igg test done by pediatrician a while ago showed problem with dairy. i plan further investigation and may call dr. petr green. does anyone see him/ are neuro issues on his radar?

Also, theresa and everyone else, i must talk about my dad who recently died at age 84. i am certain he had celiac undx which led to condtions that ultimately killed him. he entered hosp with pneumonia, was given an antibiotic which led to opportunistic infection of clostridium dificile. it was virulent, was dx late an d he needed a colostomy due to the damage the bacteria did to his colon. he actually survived for awhile after being in ICU and being given huge amt of antibiotcs, however the same infection came back and killed him while he was in rehab. i believe his intestines were immunologically compromised which led to this cascade of events. he had always had constipation,and sometimes diarrhea. late in life he had borderline diabetes (prob autoimmune i bet, tho they didnt check)skin problems, gum problems, poor balance late in life , but strong limbed otherwise.he had autoimmune thyroid dx in hosp, which i have. HE was lactose intolerant, had ulcers dx at younger age, and has cacer of colon , intestine in family.HE had gout. i encouraged him them to give him intravenous probiotics, done at vacouver u. hosp, as per pubmed, they did not.

[nikki-uk]

Hi Limpia,your post caught my eye as you mentioned that your son was dx with adhd and tourettes.

My youngest son has been dx with dyslexia and add.

His Dad was dx coeliac 9 months ago.I have put my son on a gluten free diet to see if this helps.Doctor won't test him as he has no bowel symptoms-the idea that celiac disease can have neurolgical effects without bowel probs is just too radical for docs!Keep us all posted how your son gets on

[LIMPIA]

hi nikki-

thanks for replying- my son , who is now in college, was found to have mild overgrowth of yeast. he feels that when he eats bread he gets a potbelly- also sugar and dairy give him neuro symptoms- he just started small dose of ritalin yo help his focus . he never had it before cuz it is felt it worsens tics- with him it doesnt seem to do so- i will take him to dr. peter green ,perhaps , in nyc--limpia

[coeliacinfostand]

What I do when I find a doctor who is ignorant of coeliac disease is invite them to speak at our local coeliac support meeting. I give them 3 or 4 months to prepare, and loan them a folder containing a lot of papers from Pub Med, www.coeliac.com

and printouts of:

Open Original Shared Link

and

Open Original Shared Link

Our Coeliac Society reprints the GESA pamphlet so I get copies from them.

I tell them that there will be several newly diagnosed members (there always are) and that it would be best if the talk was suitable for them.

What you get at the meeting is an enthusiastic speaker who has just discovered coeliac disease, and has started looking for it in his/her own patients, and is beginning to clear up illnesses which have bugged his/her patients for years.

I already have my sights on my next "Doctor Victim".

I have obtained the numbers of members of the coeliac society for each postcode (zip code?) area around here. Most postcode areas have between 30 and 60 members, but there is one in which there is only one member. There is only one major medical centre in the middle of it, obviously not diagnosing coeliac disease. In another few months I will visit it and invite one of the GPs to speak at our February 2006 meeting. They will say "But I know nothing about celiac disease!" I will say "Good, you are just the person we need! It's another 3 or 4 months till the meeting, plenty of time to find out" I will offer them my folder with all the papers in it, and no doubt they will continue their research in medical journals.

I have done this several times and it works, and continues to increase the number of diagnosed coeliacs in our area.

More coeliacs mean more shelf space in the supermarkets devoted to Gluten Free.

Alan

[Guest nini]

That's GREAT Alan! I love it! I think I'm going to have to start doing something like that!

[coeliacinfostand]

Nini

Once a GP has been to o a support group meeting and seen forty or fifty people there, they will never forget it. Whenever someone comes into their surgery with oesteoporosis, anemia, bowel problems, IBS, CFS, etc The FIRST thing that comes to their mind is coeliac disease. If it does actually turn out to be celiac disease, they only have to refer them to The Coeliac Society, and then watch their health improve, and feel they have acheived something.

A couple of years ago we had a very enthusiastic elderly doctor who had just diagnosed his first patient. He was giving a great powerpoint presentation on his newly acquired knowlege, when he said "There is another very rare associated disease called 'dermatitis herpetiformis'. Have you heard of that disease? Everybody laughed. He then said "Does someone here have it?" Two people put up their hands. His mouth just fell open, he could not believe that he had two people with DH in the same room. No doubt it will be something he remembers every time he gets a patient with skin problems.

I subsequently heard that he gave the same lecture to the rest of the GPs in his practice (between 20 and 30 GPs).

It is very difficult for non-professionals to educate professionals. This is one very effective way it can be done.

Alan

[Guest nini]

very cool. I think it's absolutely BRILLIANT what you've done! I have several GP's in mind already!

[Emme999]

Alan -

That is so wickedly clever!! I love it! I think I'll be copying your post and sending it to some of the people heading our local GIG (Gluten Intolerance Group). Thanks for sharing your slyness

- Michelle

[tarnalberry]

I agree. That's a great way to get the doctors to have some ownership of understanding the problem, while not necessarily challenging them in a way they find turns them off from listening.

[coeliacinfostand]

I have always been curious as to what a community would be like if every person that had coeliac were diagnosed. This has been my aim in The Hills District of Sydney (Baulkham Hills, Castle Hill, Kellyville, Winston Hills, Carlingford, etc).

I am beginning see see the fruit of my labours. There are very few restaurants that are not aware of gluten free. Very few coffee lounges that do not carry gluten free cakes. There are lots of gluten free items in the super-markets, and the health food shops will tell you that the major part of their sales come from the gluten-free market.

However we still have a long way to go.

I would love to see the same experiment repeated in the United States. We can help each other with ideas. There will be knock-backs, but we must keep going.

We have to keep the momentum up on the snowball and pass the vision on to as many people as possible. I have a great band of volunteers to help with other coeliac related projects.

Alan

[mommida]

Alan,

Thank you for sharing your vision. I can't think of a better way to deal with a doctor that has a "God" complex. Brilliant!

Laura

[Candy]

Hi Bean ,I registered here 9/20/05,but I just started writing here today.I can't believe Celiac is not hereditary.If it isn't ,then how would it have a genetic basis?I know anybody can wind up with it,maybe because they have a particular weakness.But it's definitely carried in some people's genes,that's for sure.I'll get tested when I get the money. As for your doctor,maybe he should read up on celiac on the net and consider that many people have a hereditary marker for it.Tell him Enterolab.com explains that many people have an inherited tendancy for it.I can't believe he's a physician and doesn't know these things.As for cases that aren't hereditary,I'd like to know what causes theirs too-so we'll know the many ways celiac can occur.

[CeliacMe]

my friends doc said the following when she asked for a celiac blood screening:

"do you know how rare that is?"

"if nobody in your family has it, you don't have it"

"it's not common in this area" (orlando, fl)

"you will have to have a part of your colon removed"

I am truly hating doctors more than ever! Whoever said that lawyers were the biggest scum never went to a doctor!

[Claire]

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

Every state has a licensing Board - report him. The idea of sending him celiac material is good. Also you can report him to the Celiac Foundation and ask them to send him educational material.

Gee, I must be having a bad day. I sound vindictive!!!!!!!! Maybe it's because I just left that Bash Doctors thread. Claire

[Timber4est]

I hate to say it, but we must all remember that Doctors are not licensed Gods, they are licensed to PRACTICE medicine. In the western world, no matter how much we don’t want to admit it, medical break through are the results of research grants or the direct research of the pharmaceutical communities not the grocery stores. There is no money to be had in the treatment of Celiac so there is little to no research being done in this field. Why? Because the only companies standing to gain from Celiac Research is the grocer or gluten-free food manufacturers.

I could really go an a tangent here because I have so many life-long diseases as a result of having Celiac my whole life but not having it diagnosed for nearly 40 years. I can’t undo the damage, but I can help with comforts through simply changing what I eat.

We all need to remember that it is up to us to demand tests. True, everyone around us might think we are crazy hypochondriacs, but these days, diagnosis seems to be more up to a demanding patient then it does to the doctor who has to follow the penny-pinching insurance companies (we won’t even go into how the proper diagnoses of Celiac will save them millions of dollars in the long run).

Pharmaceutical companies funding the research and grants to the medical community don’t really have an economic drive to cure us, just to understand a disease or illness so they can treat or control the symptoms—they lose money if they cure or put you on a diet from the grocer. Based upon this, I suggest you do the following with your fathers doctor.

DEMAND THE TESTS. It is your right (or fathers right) to have a say in medical treatment to include tests. If the doctors all think he is crazy, he has nothing to lose in demanding the tests and everything to gain if he tests positive! If the doctor continues to refuse, ask him for the forms required to file a complaint with the hospital, his license boards, the state health department and the state insurance division. End it with, “Could you also give me the name and phone number of the attorney you hate the most for medical malpractice?”. That might spark him into rolling his eyes and writing the orders for the tests.

[MattUK]

Michelle, your story is so awful, almost made me want to punch the wall for you.

I am in the UK, convinced I have celiac disease. (Won't bore you with all my symptoms, except they fit). I find I am just building up a whole stack of idiotic doctor comments. Its unbelievable.

Ive been ill for 17 years. My doctor, said 'Well weve tested you for everything excpet Celiac disease so its unlikley it will be a medical problem'

I had a bloood test, but hadnt been eating enough gluten for ages, so when my test was negative my doctor said 'You havent got it'. I said I might still and he said 'Its negative, you havent got it'. When I explained, he said 'Have you ever considered counselling?'

I was due a Endoscopy on friday and the Surgeon, who seemed like a nice guy, tried to talk me out of it because my symptoms 'dont mean anything'. I also harped on about my teeth which are falling to bits and the mental fogginess whcih has mean i had to give up stand up comedy (which i was good at!) and he said mental fogginess 'wasnt a symptom'.

I am at my wits end. i hope it gives you some small comfort that were all fighting this and going through it. I am a journalist so im hoping to do as much as I can on it in the Uk.

Matt

[moonunit]

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

I am so sorry for your troubles, but can I just say, this made me laugh like a looney! I think there would be about eight doctors left if you "took out" the ones who refuse to diagnose/treat/listen. I know it's not nice to wish violence against others, but it's good to be able to laugh, too.

Good luck with your attempts to get some answers! Let us know if and when you do!

-Moonunit

(Positive bloodwork, negative diagnosis. Whoopie!)

[aikiducky]

I am at my wits end. i hope it gives you some small comfort that were all fighting this and going through it. I am a journalist so im hoping to do as much as I can on it in the Uk.

Matt

Matt, I hope you are planning to go 110% gluten free now that you have had your endoscopy?

Pauliina