Diagnosis
I walk into new doctor’s room. We’ll call him Dumbledore, because he has that way about him, except he’s Indian.
I give him the spiel. The post-viral fatigue. The blood tests (glandular fever screen, full blood count, liver function, kidney function, blood sugar levels, iron levels, Coeliacs screen, Addison’s disease, cortisol levels…), the gluten.
“Wait wait wait,” he says, holding up an old spindly hand. “You thought you might have Coeliacs so you reintroduced gluten? Do you know one eighteenth of a piece of bread can cause significant damage?”
I sit up straighter. “I didn’t know,” I say. “It could have been anything that was making me ill. And the test was negative.”
And I love donuts, I wanted to add.
“Borderline,” he says. “Very different.”
“Anyway,” I say. “PurpleEyes is sending me for another Coeliacs screen and a biopsy.”
“But you’re not eating gluten.”
“No.”
“It’ll be negative then.”
I smile slightly. Finally a Doctor who knows what he’s talking about. “So tell me more about the reintroduction,” he says.
“Well,” I say. “I thought I had a bug, as MadFather and MindReader were ill too, but I’ve since had a bad cold and had virtually no energy problems.”
“Right… and what happened?”
“Erm,” I say, looking at my hands. “Chronic diarhoea an hour after I ate anything,” I say to start, remembering lying on my stomach on the living room floor complaining it felt like a horse was trying to get out of my intestines.
“Right,” he says, typing quickly on his blue screen, his long hooked nose almost touching the keyboard. “And then…?”
“Well that stopped after about a week. And then I was ravenous. Like eating in the night ravenous,” I say, hoping he doesn’t diagnose me with an inside-eating tape worm. “Too light headed to do anything. And then after that, about two weeks, the old dizziness came back, and that just stopped me doing what I wanted to,” I say, looking out of the window onto the children’s play area. “I got dizzy when I baked, and then a week later I was able to get on a bus and come straight back again,” I say, hoping he doesn’t ask me why I did this. “And a week later I could go into Birmingham, and now I’m just about fine.”
“So the whole process took about…”
“6 weeks, ish,” I say. “How long does it take for intestines to grow back after eating the gluten?”
“6 weeks,” he says, typing furiously.
He stops suddenly and takes me in. “I would bet money,” he says slowly, “on this being Coeliacs. And I can only apologise it took a year and it was you, not me, who figured it out.”
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- The one where I reintroduced gluten « Billygean.co.uk
- MindReader only sighed « Billygean.co.uk
- Coeliac sprue:the verdict « Billygean.co.uk
Well, I guess we’ve figured out what NOT to do…no gluten! Hell of a way to figure it out, though. And you’re right…donuts are…well, extremely nice.
Thank god you’re figuring it out, love. Bryan and I are in London Monday and Tuesday (and Wednesday morning)…not sure what you’re up to, but we’ll be back again, too!
Meg
I am a member of AFME on facebook and thought that I would have a look at your blog. I am very pleased that you are now much better but I am confused. Surely if you got better after giving up wheat then you had Coeliac Disease and not M.E?
Hi there
first of all we aren’t certain it was wheat
one dr thinks i have both coeliacs and me. Another thinks being malnourished for so long has caused an me-like syndrome which, a year after beig gluten free, I still suffer from.
It definitely WAS me following glandular fever, whether it still is, I’m not sure
bg
Hi
Its hard to know isn’t it – I don’t think docs know half the time. Most of it is guess work. I have had M.E for 5 years now so am always reading as much as possible about other peoples experiences. I find it is the best way to learn as I have had hardly any help from Docs and specialists. I have tried giving up wheat, dairy and sugar plus tried different supplements but nothing has worked for me. I did think that I was getting better after about 2 years – went back to work part time and then after about 4 months it came back quite severely. So be careful and don’t overdo things and get too excited about being well. I know its hard after being so ill for so long you want to do as much as you can. My only advice would be to rest as much as possible. Take care hun. Nicky x