Scare Tactics

[Guest BellyTimber]

Web sites and also a book like Karen Brody's one adopt scare tactics telling me how fatal coeliac disease is.

Doctors don't take this at all seriously and I am always being told by all authorities that I must follow the doctor.

He has my test results which aren't NHS ones and my comprehensive history of complaints which are supposed by the gloom mongers to be connected with coeliac disease.

He couldn't be bothered to send me for endoscopy or biopsy when it was supposed, by the scaremongers, to be safe, therefore I am without letters explaining the continuing decline in my health.

The inconsistency is making me sick.

Why don't you all get your stories lined up?

Michael

[angel-jd1]

Why don't you all get your stories lined up?

You are obviously upset, but I have no clue who you are upset with?? Who do you think needs to get their stories straight?

-Jessica

[plantime]

So your doctor doesn't have a clue. Many of them don't. What, exactly, is your problem with us?

[darlindeb25]

michael---ummmmmm be upset with your doctor---i just sent my son, another michael, to his doctor--he requested that he be tested for celiacs and diabetes and do you know what that doctor said to him---"Umm Mike, I dont think you have symptoms of either, just regulate your diet!"--REGULATE YOUR DIET---what does that mean and no, he did not tell mike what that meant--just regulate your diet--mike has so many of the classic symptoms of celiacs--he had ear infection at 2 wks of age--at 2 months the dr finally decided he was allergic to milk, he has always been allergy prone, always very tired, he was a bedwetter for years, learning disabilities--he has had a cold now for 6 weeks which finally settled into strep throat, he has trouble with many foods, but the doctor says, "I DONT THINK YOU HAVE SYMPTOMS OF EITHER"-- i am very angry with this doctor and if i wasnt 800 miles away i would go have a talk with him--but, i think my sister, who also is celiac and a dietician, who works with this dr, will probably have a talk with him--------dont just believe your doctor--if you dont get answers, then find a doctor who will help you find the answers--its your health you are dealing with--you can bet if it was the doctor that was feeling this way, he wouldnt except an answer like that-------deb

[pixiegirl]

You said "they are telling you to trust your doctors"..... what authority is telling you this? Quite frankly everything I've read lately, on the net, in magazines, in newspapers says just the opposite, a good doctor is just one piece of the puzzle in our total health care picture and we need to advocate for ourselves when it comes to health.

Doctors are not god and I'm hoping you know that. My first doctor took one blood test and said go back to eating gluten you don't have celiac. I said to him but I've been gluten free for only a week and every single symptom that I've had for years and years is now gone. You know what he said, "its all in your head". (felt like it was all in my digestive system!).

I changed doctors and was lucky enough to find one that agreed with me, if going gluten free makes me symptom free then its obvious that I have a gluten problem. I finally got my DNA tested and I have both of the main gene for Celiac.

You have to be part of your own health care.... and you have to help decide if you are Celiac or not. If you symptoms go away on a gluten free diet, if you feel better, then do it, if not continue to investigate. Be aware that getting a biopsy isn't the key to the city either, the other testing I had indicates that I have no malabsorbtions problems and such so mostly likely if I had a biospy (I didn't) it would be negative for celiac... but all this indicates is not that I don't have Celiac but only that it has not damaged my intestines yet. Well I'm not waiting for that to happen!

I guess my point with this is, its not a disease thats easy to diagnose... and most people suffer from symptoms for years with it... so its not a matter of getting our stories straight, may of us have totally different symptoms and yet we all have the same disease... its not cut and dry.

I'm not sure who you are mad at but anger won't fix this either. I know of some Celiac's with very few symptoms that still eat gluten on occasion... as most on this list will tell you, thats a bad idea, but in the end, you have to decide.

Good luck, Susan

[KaitiUSA]

Everyone is different here and we have all had different experiences. Some people have had different symptoms then others to. Why are you attacking us? We are here to try to help as much as we can. Your doctor doesn't seem to have been much help. Many doctors don't take celiac very seriously and many don't know alot about it. I switched doctors a few times because I was being ignored and they didnt want to do further testing.Why listen to the doctor about your health when you know something is wrong and they are ignoring you? Doctors don't know everything and especially when it comes to celiac.

[Carriefaith]

He couldn't be bothered to send me for endoscopy or biopsy when it was supposed, by the scaremongers, to be safe, therefore I am without letters explaining the continuing decline in my health.

Who knows why some doctors act the way they do and why some are so ignorant to the obvious. Doctors are human and I think sometimes they get so busy with their jobs that they sometimes fail to investigate further when they should.

I know people who have had cancer and the doctors either told them there was nothing wrong with them or that it was just allergies. I mean what can be more serious and fatal then cancer and the doctors were still clueless.

My advice to you would be to find yourself a good gastro-intestinal specialist or a celiac specialist. These doctors are more specialized and should do more for you.

[ianm]

In my experience the only thing taught in med school anymore is how to write prescriptions. I was able to turn my life around without the help of a doctor. I had to research this disease on my own and this website has been a tremendous resource also. If you're PO'd at us then why are you here? I know a number of people who have had serious medical problems (cancer, apendicitis, heart problems, etc.) that were dismissed by doctors. You are the one ultimatley responsible for your health. To go around pointing the finger at others is not going to make the problem go away.

Ianm

[MySuicidalTurtle]

Go to a different doctor, if you don't like the new one then switch again. Don't go to people who piss you off and don't do what you feel is best for you.

[Guest BellyTimber]

You're still feeling sick after 1 yr? That's not as different to two and a quarter years as a few weeks or days is. There was a rebound period when I was better but that was some time ago.

We don't have a support group in this country where you can go & mix and meet people face to face and compare notes and discuss it, perhaps swop doctor addresses and arguments that had proved persuasive.

What I mean by authorities is, my employers will not take my word for anything, it has to come from a doctor. The same would be so if I had to look for social security or something. The same definitely applies to pensions.

"Celiac's Disease" is a trade mark and they will do all they can to stop anyone else using it.

I know in my heart of hearts you are right, all of you.

In my country one can't just go and get oneself a gastroenterologist, here there is a monopoly.

Service industries and professions are conceived as competing against the client.

Even then the rest of you seem to have had just as bad problems.

The amount of people using the internet to share about their illness is a minuscule proportion. Many of them are probably far worse in the soup than I am.

Some of our friends were just sharing under the heading "coping" about how their doctor would soon sit up if it was happening to him.

I have been advised by another doctor not to infringe specifically with the intent of seeking an official diagnosis.

What I'm getting from these pages is that the pathway blood tests - biopsy - celiac disease to "official" diagnosis is pure "myth". Because of natural variations either or both don't say what we or others might have led ourselves to expect or want. I read yesterday somewhere that no way can celiac disease and villous atrophy be considered to be synonymous.

I have quizzed the doctor about various issues from literature and he seems surprisingly up to date. I therefore think with him the problem is organisational. I think his "Trust" won't let him take the proper actions.

Indirectly it also goes back 17 years to when a doctor told me to my face I had had a certain attack and another doctor wrote letters alleging that I had "claimed" to have had it.

What profession would want to be so unprofessional, unbusinesslike, unethical and incompetent as to not do things in writing? It all goes back to when we were not only illiterate but hadn't heard of any words of more than two syllables so we weren't to be told anything either in writing or any other way, but especially not in writing. When the letters got written to third parties, copied to us, we were too bamboozled to query it very much and I have tried.

If your plumber or electrician wouldn't give you a receipt because he was afraid of Customs & Excise, it wouldn't give you any confidence because what if there are sparks or streams of water?

My only hope is to impose my vision of it on him. I don't care if he has to tell people I've got the Ching Chong Chang as long as he makes it sound as serious as it is.

You super people on these bulletin boards have given me much excellent ammunition for my arguments with him.

I get 10 minutes with him once in a blue moon. What I need him to do is doctor things. Like advise me how to manage my symptoms in the interests of my wellbeing. The old phrase goes, "Get medical advice". Even people on this bulletin board are saying that. And issue plausible letters to whom it concerns such as employers about those times it is reasonable for me not to turn up, or turn up late or leave early. And tell me what is reasonable. In two and a quarter years he hasn't told me. People on this bulletin board are telling me. Nauseous and cross eyed I am capable of getting out of bed - probably not shaving neatly - and getting on the bus and sitting behind my desk the other end. And concentrating on and off. And catching up on energy at weekends. Someone takes me shopping one evening. You told me it. The doctor didn't. Thank you for being there all of you without exception.

Michael

[Carriefaith]

You're still feeling sick after 1 yr?

I'm assuming that this is directed towards me...

Yes, unfourtunatley I am still getting sick and feeling sick after one year of being gluten free. I believe that there is something else wrong with me though and I am going to see my GI tommorrow to talk about it.

[Guest BellyTimber]

Best of wishes.

All,

Thank you for your patience with my "belly aching".

You've helped me acquire a "stomach" for things.

And you've all got "guts".

Michael

[darlindeb25]

michael--we are all in this together and i can understand why you are upset right now--i get the same way--i have been the same way for the last 2 weeks and i have been gluten-free for almost 4 yrs now---somedays i stomp my foot and say, "take it away, i dont want celiacs anymore!"--we will help you through this--otay--deb

[MySuicidalTurtle]

Maybe you should create your own support group which doesn't ban anything.

[plantime]

Eh, so you don't have a problem with us. Go ahead and vent, we understand. Doctors, employers, teachers, and even friends and family cause us the grief you are talking about. Try starting a support group yourself. What country are you in? We come from all over the globe, so maybe someone is in your country and can give you better help and advice than I can.

[kvogt]

gapspan,

From the spelling you used, I believe you are in the UK. I think you have special problems using the medical system and are having trouble getting a doctor within your plan to pay attention to you.

If you have faithfully halted gluten consumption and are still dog sick, you should consider other foods. The most likely candidates are milk and soy. The others are egg and yeast. There is also the possibility that you are so sensisitive that UK gluten-free foods are not gluten-free enough, even within the standard. But this is less likely than dairy, soy, egg and yeast.

My experience was I had to drop dairy for about a month before I noticed a difference. Consider what I've said.

Kelly

[Guest BellyTimber]

Kelly,

I think the doctor is responding but only a little bit at a time. I think he is bamboozled by the thought of a person having celiac disease without the biopsy - he probably thinks that is how we are given the disease

I have our gluten-free foods directory which is well compiled but it is never on me when I go shopping. I am dyspraxic and all simple things turn out complicated. I am used to deeply analytical work but misinterpret labels.

I'm advised to go low dairy (not by the doctor).

I'm hanging in here...

Michael

[Guest BellyTimber]

Dessa, and MST,

I gave it a name already: Coeliacs OK!

Trouble is, I can't organise my way out of a paper bag.

Then again, here's a pretty decent support group as so many of you have said with the special bonus of extra people from all around the world esp. but not only the US.

The other group run trips to food exhibitions and invite demonstrators and once a year have a gluten-free restaurant meal together. The local convener works very hard.

Nationally they publish a good food directory and an increasingly good magazine.

It's just that I've been at the talk about it in depth stage of late. In a matter of days I've gained a phenomenal amount from you all.

Michael