Getting Messed About?

[sarawr]

So I'd gone to the drs a few times about my stomach problems and they just put it down to IBS. But the pains were getting really intense and i was basically living off soup, that they got me to have blood tests. Which showed i was very anaemic, (they were still waiting on the coeliac test results) but they sent me to hospital. After a long talk with a consultant they said that all my symptoms and anaemia matched up with coeliac disease. And to get off gluten immediately and i would start to feel better, as well as going on iron tablets. They said they'd urgently referred me to a specialist who could properly diagnose me and that i probably wouldnt even need the biopsy.

So I've been on the gluten free diet for two months, the results came back for coeliac on my blood test as normal, but was told to wait for the specialist appointment and stay on the diet. It's taken a while but i've started to feel dramatically better in the past few weeks on the diet. It was only the other day when i was at a restaurant that i was caught out and they must have put something gluten in my food, that i felt really ill again. Horrible cramps, sick in the night, my body crying to get rid of something inside.

Today I finally got my appointment with the specialist. And they barely asked me any questions, and said that because of my blood test being normal, i would need the endoscopy biopsy to get the proper diagnosis. But i would need to go back on gluten for 4-6 weeks first, because my body has healed itself. And they asked are you happy with this? Well ofcourse i'm not!

And i am so upset and angry, why didn't they book me for a biopsy to begin with, instead of making me wait 2 months to recover, only to see a specialist to tell me to go back onto gluten when it's going to cause me 4-6 weeks of intense pains plus recovery after again. Its taken me two months to recover, so it'll mean another 3 months before i'm back to feeling how i am now. I am very frustrated as i feel like they've wasted my time, and half a year if i do go back on gluten. I really don't want to go back onto gluten knowing from the other day how ill i felt from eating a little.

Should i ask for a second opinion? There isnt really any other way to get diagnosed is there? Or to go private? Or just give up with these doctors messing me about and stay off gluten??

[sa1937]

Is there any reason YOU feel a need for a diagnosis? I think you have your answer already as to how your body has responded after your experience at the restaurant.

Personally you couldn't pay me enough to go back to eating gluten when I know how much better I feel gluten-free.

[GFinDC]

If you really want an official doctor's diagnosis then you are pretty much stuck with doing the gluten trial for several months, maybe 3 world work.

But nobody is going to give you a gold star when you get done and get your diagnosis, or don't get it. Even after 3 months there is still a chance you will get a false negative, because the testing is just not 100% accurate. That's a lot of suffering for something that may not work out.

You don't need a doctor's permission to eat gluten-free, and there are no drugs they can give you that will make celiac disease go away. So a diagnosis is not a really super useful thing.

[eatmeat4good]

The medical system serves itself first...patients last. They knew you likely had Celiac and in my opinion time is of the essence when you need testing for this. But because of their schedules an needing to reap all the money they can, it isn't possible to accomodate the patient and squeeze in your endoscopy so you can KNOW. They tell you to go gluten free because they believe you really are Celiac, but they aren't willing to diagnose you unless you have positive biopsy which you won't if you stopped eating the gluten that was killing you. None of it makes sense. Add to it that you still have like a 30% chance of testing negative on the biopsy even if you DO have Celiac.

I think your accidental glutening would be all the test I need. Tell your Dr. about it and the fact that you have had complete remission of symptoms and have healed. What happened to first do no harm? I would as him to give you the diagnosis based on the response to the diet...but if he doesn't...you can give it to yourself.

I would not be able to eat gluten even once...let alone for weeks or months. Silly Dr,'s.

[love2travel]

You don't need a doctor's permission to eat gluten-free, and there are no drugs they can give you that will make celiac disease go away. So a diagnosis is not a really super useful thing.

For me diagnosis was extremely useful! I was (and am) asymptomatic so I really needed the diagnosis to realize how serious Celiac is. I would not have believed I had the disease, that is for sure. I likely would not have gone gluten-free if I were not diagnosed by both the bloodwork and scope. There would be no motivation. I loved gluten sooooo much and really miss it. On my three month gluten challenge I had a huge list of all the fabulous gluten-packed foods I could eat one last time and got real enjoyment from it. But I am as strict as strict can be and refuse to cheat. In my opinion it is 100% or why bother?

[Junot]

Doctors and pharmaceutical companies dont make money off Celiacs or being gluten-sensitive cause theres no medecine or even follow up appointments its just stay off the Gluten, doctors dont like that, the more you continue to go see the doctor the more every body else makes and the more prescriptions they write the more money they make.

They dont know how hard it is every day for you and they dont care, this is only your choice, Stay off the gluten and feel good or continue to listen to doctors who dont know your life.

[sarawr]

Thanks for the responses! My heads in a muddle. The only reasons I'd consider going back on gluten was so i can get this biopsy test and hopefully get a positive test. Also living in the UK once i get diagnosed i can get prescribed special foods. But if this test isnt always accurate either.. i'd feel even more upset if i go through all this and get no conclusive answers.

Literally two days before going to see the specialist and eating something which caused me intense agony all night and vomiting, i can't understand how they didnt ask me more on this. They barely even acknowledged what i said, whereas when i'd gone to see a consultant before they asked me very thorough questions. I feel i know in my gut what the problem is, and i was so upset after the appointment feeling like they've wasted my time. I really dont want to go back to feeling that ill, my intenstines felt like they were about to rupture whenever i ate, completely affecting my day to day life that i was mostly in bed, i just dont want to go through that all again! I guess the good thing is i can decide just to stick to the diet, as much as i crave sandwiches, i am extremely unwilling to get ill!!

[Jaymie Jaymz]

Or just give up with these doctors messing me about and stay off gluten??

The above would be my advice. I feel like I lost 2 and 1/2 months of my life because of the gluten challenge I just got off of. The biopsy results? Negative. Yet now I'm left with ten extra pounds that I was unable to fight off while on gluten, not to mention I turned into a depressed/angry recluse and missed out on doing fun things with the family because I was afraid of getting sick in public, or was just plain so fatigued I couldn't move off the couch to get dressed and go out.

And for what? So I could go back to gluten-free anyway? It was a complete waste of time.

I'm not saying it would turn out that way for you, but it's just something to keep in mind. A 4-6 week challenge isn't very much, either. You usually need 2-3 months. Even then, there's no guarantee of a diagnosis.

[sarawr]

If they'd just kept me on gluten to begin with it would make sense to be getting this biopsy in a months time. I just don't want to ruin more of this year with this!

Thanks for the answers, i wasn't sure if other people had been in a similar situation and what they would do. Seems daft to go through it all again!

[mushroom]

Yes, the medical community can seem a bit daft. Patients are like substances in test tubes. Add some of this and see what happens. Take some of this out and test it again and see what happens. Test tubes don't feel things; patients do. That part seems to be missing from the equation. These little experiments they are conducting are with patients' bodies. They don't give a darn about that aspect.

[GFinDC]

For me diagnosis was extremely useful! I was (and am) asymptomatic so I really needed the diagnosis to realize how serious Celiac is. I would not have believed I had the disease, that is for sure. I likely would not have gone gluten-free if I were not diagnosed by both the bloodwork and scope. There would be no motivation. I loved gluten sooooo much and really miss it. On my three month gluten challenge I had a huge list of all the fabulous gluten-packed foods I could eat one last time and got real enjoyment from it. But I am as strict as strict can be and refuse to cheat. In my opinion it is 100% or why bother?

Good for ya Love2travel! You are right there are exceptions. Silent celiac is one. I certainly can see that it makes a big difference to someone who doesn't have symptoms.

And for people who may get some kind of financial compensation for being diagnosed it could be important also. Sure would be nice if the doctors understood the testing process better and didn't tell people it was ok to go gluten-free before testing was complete though. Doctors cause a lot of unnessacary suffering with that bad advice.

[sarawr]

Yeah i can understand what Love2travel is saying! But because i was extremely ill, i understand the importance of keeping off gluten. As much as i crave sandwiches and meals out are torture, i have pretty great willpower! I think it helps that i was brought up a veggie and went vegan 7 years ago, so i'm used to avoiding things and even as a vegan i would be tempted by foods but never cave in