Struggling For A Diagnosis

[aussiegirl17]

Hi everyone,

I am a 17 year old female from Australia. I tried for 3 years to get a proper diagnosis of coeliac disease until i finally got one this year. ready for this?

I started getting symptoms about 3 years ago, but took me a while to tell my mum because i was embarassed. basically everything i ate went straight through me. I went to a Dietician who suggested all these things and i can't remember how i directly got onto it, but through trial and error i discovered that when i didn't eat wheat/gluten i was absolutely fine. But because i hadn't been diagnosed i didn't stick to the diet properly and suffered for almost 2 and a half years. I had numerous blood tests and even produced a negative result from an endoscopy (small bowel biopsy). I kept returning to my doctor, who didn't seem to belive i had celiac disease and asking for more to be done because i knew that when i had no gluten i was absolutely fine but the slightest bit would trigger the symptoms again. I even went to an iridologist who told me i had an allergy to wheat without telling her a single thing about me. Finally i got sick of it all and went back to the doctor, who by now was a doctor i used to see before he was replaced by the doctor seeing me through my diagnosis, to write me a letter so i could join the coeliac society. He pulled up a blood test result from 2 years ago, highlighted in red, that tested for coeliac disease that basically proved i had it, the doctor was convinced anyway. I was of course upset that my previous doctor had neglected to tell me this. I am still puzzled as to why it was so hard to get a proper diagnosis, perhaps because i had half started a gluten free diet. The surgeon who performed the endoscopy told me to eat wheat before the test, but i couldn't because it made me so ill and i was attending school as well as a part time job.

I'm just interested if anyone else had this much trouble getting a diagnosis.

Cheers, Aussiegirl

[Kaycee]

I even went to an iridologist who told me i had an allergy to wheat without telling her a single thing about me. Cheers, Aussiegirl

Welcome to the forum Aussiegirl, I think there will be a lot of people on this forum who would be able to relate to the length of time it took for you to get a diagnosis.

There are many reasons for the length of time of dianosis, I think doctors just don't know enough about the disease, and some think it is quite rare dishorder. But it not a rare disorder, I think one in about 133 people would have the disease. Alot of the times we ourselves, as in me, put off going to the doctor as I was quite embarrassed about my symptoms.

Like you I more or less self-diagnosed, but until I got the diagnosis it was hard to keep to the diet.

You mentioned your iridiologist said straight out you had a wheat allergy. I read somewhere that if you have dark circles under your eyes, it can be a sign of a digestive disorder. I found that interesting as for years I have had dark circles under my eyes and it would make no difference if I had enough sleep or not. Even today I have got dark circles under my eyes, and they haven't disappeared yet. Maybe they won't

Cathy, Kiwigirl

[happygirl]

Aussiegirl,

Unforunately, your story is all too common. Experiences like yours have brought so many to this board---because they received incorrect medical advice, wrong testing/procedures, and neglect. I am sorry that you had to go through all of that---it is so frustrating. Your doctor was correct in telling you to eat gluten for an extended amount of time; otherwise, having an endoscopy/biopsy is pointless.

And, yes, it happens often---I am one of those who had numerous problems as well, and have continued over the years.

We are happy that you have joined us and that you finally have an answer. Let us know what we can do to help!

Laura

[rez]

I thought our story was the worst ever. We have been struggling for the past year and we first had a GI that made front page of the paper for an incompetence investigation, a doctor who ran the wrong blood test, and a lab that didn't take enough blood to run the CORRECT blood test. Finally, after 4 doctors and 4 months gluten free our new doctor ran the correct test and my son's tTG was slightly elevated. FINALLY!!!!!!! Now we are faced with a huge dilema. We want to do the right thing for our son but we are struggling w/ a gluten challenge. Thomas is so happy w/ his little gluten, dairy, and soy free bubble that he's living in. In four months, he has not once asked or wanted anything forbidden. He will not touch gluten! We would have to sneak it to him. The flip side is what if it's just an intolerance to casein that elevated the tTG. We KNOW he reacts severely to dairy. Bad stomach aches and huge outbreaks of canker sores. I just want to know FOR SURE. I know by trying to get an accurate diagnosis, it's the best for him, but it's so hard for us. We have an appt w/ the GI on Monday and we are going to beg him to do the scope ASAP and maybe there will still be visible damage since the tTG was still elevated. If he finds nothing, then we could attempt a gluten challenge. Any thoughts? Back to the original topic, the long struggle for a diagnosis is WAY TOO COMMON and we all need to band together and make a difference.

[tiredofdoctors]

Welcome to the forum, Aussiegirl!! Unfortunately, I think you are going to get a LOT of responses from people who have had this much difficulty. Physicians haven't been informed properly of the subtle and not-so-subtle symptoms of celiac. Hopefully, since it is becoming more in the forefront with regard to publicity, they will begin to educate themselves.

Good luck to you . . . . and stay gluten-free!!

Hugs,

Lynne

[pixiegirl]

It took me just over 11 years to get diagnosed. Your lucky it was only 3 years! I kept marching back and forth from doctor to doctor, and first it was IBS, then I was "crazy". Finally someone of thought to test for Celiac.

Just be grateful you know.

Susan

[codetalker]

Physicians haven't been informed properly of the subtle and not-so-subtle symptoms of celiac.

Years ago I heard something on the news that made me just shake my head. Back when West Nile virus was showing up here in the U.S., nine people in New England had been DX'd so the CDC reportedly issued a nationwide alert to medical professionals. Think of that. Nine people prompted a nationwide alert. On the other hand, estimates for prevalence of Celiac Disease is in the range of 1 in every 133, 1 in every 250, etc. That prompts only continued ignorance among medical "professionals".

BTW, it took over 10 years to get my celiac disease figured out. The greatest aids were the Internet and boards like this. That is even with a previous DX at Johns-Hopkins as a baby and doctors who said I overgrew the condition by age 4.

Best of luck. Always keep in mind that medical professionals are ordinary people just like all the rest of us. Despite the special status granted to them in society, you really cannot expect anything extra from them. As an analogy, consider the special status conveyed to clegy by society and then the performance of Catholic priests. A re-evaluation of the social order is probably in order.

Chuck

[Wendy22]

It is 12 years since the onset of my symptoms and I'm still not diagnosed other than IBS and thyroid autoimmune disease. I feel better on a gluten-free diet and have always suspected Celiac, but without a proper diagnosis I too have altered on and off a gluten-free diet. I have had two colonoscopies, an endoscopy, blood screenings for celiac, lupus, rheumatoid arthritis, fibromyalgia, lymes, several barium x-rays and a spinal tap for MS, all negative fortunately, but leaves me undiagnosed. I have seen physicians, gastroenterologists, rheumatologists, neurologists, endocrinologists and homeopaths...You know the drill for diagnostic tests...unpleasant, humiliating, scary, stressful, frustrating, expensive and time consuming. I drew the line when my GI doctor wanted to schedule me for a biofeedback test that entailed filling my colon with barium and monitoring the elimination. I thought, you have got to be kidding me! I now make an effort to be gluten free and if time cures my symptoms and this forum gives me guidance, I will be happy with that! Consider yourself lucky!

[aussiegirl17]

Thank you for the replies, after reading wendy22 and pixiegirls stories what i went through seems like nothing! thanks for the support,

aussiegirl17

[Sophiekins]

I spent seven years waiting for a dx, during which time no fewer than nine doctors told me it was all in my head. . .(it was uncanny. . .they all used EXACTLY the same words!)