How long did it take for diagnosis please ?

[Narwhal10]

Thanks 🐳

[Researchfan]

Hi Narwhal10. Hope you’re doing better?

Can’t really answer that one but it took about two years to have Coeliac ruled out.

🤗

[Littleeric]

For gluten my first blood test results only 3 or 4 days.A few weeks later the consultant told me to eat gluten for 6 weeks then have the camera test.

This confirmed things about a week later.

[CATRYNA49]

It only took a few days through blood work 12 years ago. Up until then I went undiagnosed for 40 years. I immediately went GF and then 6 years later went completely grain free.

[Narwhal10 in reply to CATRYNA49]

Thank you CATRYNA49,

I am so dreadfully sorry to read. A diagnostic delay of 40 years really is objectionable. Mine was 3 decades. I too eat a very limited diet. People do not understand, we don’t ask to be gluten, malt, dairy, grain, egg white and all the other nonsense free. It is an illness, x

[CATRYNA49 in reply to Narwhal10]

Indeed it is. So sorry to hear you also went for decades without a proper diagnoses. And, in the meantime we were destroying ourselves because the medical establishment was ignorant and uncaring. As for me, because of that I also developed the Celiac disorder Dermatitis Herpetiformis or DH which results in itching, painful, burning blisters that take forever to go away and scar badly. So, because of that, not only do most of us have to avoid all grains, soy, etc, but also anything high in iodine. Iodine is sometimes worse than gluten and is something we have to be very aware of especially with the medical establishment that use iodine in contrast dyes for some of their procedures and also simply for wiping skin as a disinfectant. I can't even count the many times I have had to ask a medical attendant to read the ingredients on something they were planning to use on me because of their ignorance in not understanding iodine is called by a few different terms. You really have to watch your back and be your own advocate, because their ignorance can cause undue discomfort or get you killed. The last time I dislocated my hip and was transported to Emergency the EMT misjudged my intense sweating because of the pain with a diabetic sugar drop. I am not diabetic. Against my wishes they gave me maltodextrin in my IV to supposedly bring up my blood sugar. The result was my breaking out in DH blisters on my scalp, neck, right side of my face and inside my right ear. It was miserable and took 3 weeks to go away.

[Narwhal10 in reply to CATRYNA49]

Oh my goodness, it’s quite hideous isn’t it. Poor you. Argh Maltodextrin causing reaction and the recovery is another thing.

I am deficient in everything and another tooth snapped. When feeling better, I went to the dentist. Great guy, I had a plate made then I asked him what was in the ingredients of the glue and he looked shocked.

When I went for the endoscopy, for the pre-op checklist, the nurse asked about allergies, severe intolerances etc and out of a large bag, I produced a file. Here we go, here’s a 47 page report. She asked me 3 times was I okay with banana as the local anaesthetic had banana in.

When I eventually was well enough for my COVID jab, the nurse listened to my medical history and again, asked 3 times if I had ever had anaphylaxis. She was rather nervous giving it to me. Needless to say, I reacted and spent 5 days on the sofa, barely able to do anything.

In the U.K. we have a reporting system for medicines, I use it quite often. My lovely G.P. offered to prescribe supplements. I had to decline, explaining that they have to be free from, dairy free, minimum fillers and can you tell me where they are produced because cross contamination is a serious issue.

I have had medical alerts tattooed on my body, just in case.

I have had a high heart rate misconstrued as anxiety. Or I am stressed, no I am just about to faint. I am about to keel over but I can’t communicate that as I am concentrating on not hitting the deck. I haven’t got enough oxygen because I am deficient in iron, copper and vitamin B12. People really are rather clueless.

Good friends text to see how I am. I joke well I didn’t need a passport, there were quite a few accidents and I had a lovely view of my shower and sink. They know I’ve had another ‘holiday’ in my toilet. Ugh.

😘

[benmaise]

It took at least 20 years to diagnose mine. I was never away from the doctor for years. I was at the hospital and saw a dietician. They all said I had IBS. I took pills for 16 years.. It was only when I insisted on a test for Coeliac they said I would have one.

[Narwhal10]

Oh bless you, 20 years is such a long time and this illness is very poorly understood.

I hope that you have a good G.P.

benmaise, I deal with codes, so please consider writing to your Practice Manager at your G.P. practice.

Dear (name from website),

I wish to make you aware that on (date) I was diagnosed with Coeliac Disease by (name of doctor). However, I feel it appropriate that the practice know that according to the World Health Organisation’s International Classification of Diseases, Irritable Bowel Syndrome is denoted by K58 whilst Coeliac Disease is K90.0. There is a vast difference between these two codes and illness.

Further to this, I feel it extremely important to inform you that the delay of my diagnosis was over twenty years. This has severely impacted my life physically, emotionally, socially and financially. I am fully aware that my case is not in isolation. Therefore, I would be extremely grateful that you raise this matter with all clinicians at the practice.

Research states that only 30% of those with coeliac disease have been diagnosed in the U.K. as practitioners are failing to recognise the signs and symptoms of this autoimmune malabsorption illness . NICE guidelines [NG20] for the recognition and management of Coeliac Disease include testing people who have ‘Irritable Bowel Syndrome.’ For information, this is an ‘umbrella term’ and diagnosed when all other illnesses have been excluded. However, this does not include Small Intestinal/Bacteria/Archea Overgrowth which is functional medicine and costly.

Thanking you in advance,

Kind regards,

benmaise.

(30 years for me) 😘

[benmaise]

Hi Narwhal10. I was diagnosed when I was 60. I'm 79 now. Its too late to do anything now. I should have complained more then. I was diagnosed with Osteoporosis because of this. Then shortly after I had RA. One doctor said this was because I was undernourished for years.

[Narwhal10 in reply to benmaise]

Oh benmaise,

I am so sorry, my lovely. Osteoporosis is horrible then arthritis on top.

I have a long list of misdiagnoses. Trips to the Emergency Department. If our guts don’t work, we have fatigue, our joints hurt, muscles soreness, our bones become brittle. It affects our teeth, nails and skin.

My poor brain too, I knew what a Hoover did but had no idea how to turn it on and use it. My memory was appalling, forgetting words and I’d book a doctor’s appointment but was too ill to get out of bed.

I was speaking to a friend yesterday and her twenty something year old daughter is in a wheelchair. Now, that I can quite easily walk, I offered her my old one. Although, it made me think, has that young woman got coeliac disease ? I would not want another person to experience what I went through by not being believed that I had a serious physical illness.

😘