Pre-Diagnosis

[oukethelousa]

Hello, knowledgeable people. I hope your experiences might shed some light on mine.

 

I'd never thought that I had any food sensitivities, and was rather proud of my ability to eat anything edible to be polite even if I didn't like it very much, but last year I finished off a pint of milk before going on holiday, and subsequently spent a fair amount of time in the ferry's toilet. The sensible advice was that many people become somewhat lactose-intolerant with age, and it probably wasn't necessary to cut it out entirely, so long as I didn't drink pints of milk at one go. Which is what I did.

 

But I began wondering whether I'd notice any difference if I cut it out entirely, not really expecting anything. Almost as an afterthought I decided to cut out gluten at the same time, more out of pique than because I seriously believed I could be celiac. A fair amount of my diet was pizza and pasta and cheese sandwiches, and if I couldn't have all that, I might as well expand my repertoire and explore new grains. I might even learn how to pronounce quinoa.

 

The results were unexpected. For about a decade, at least, I've suffered from episodes of diarrhea, but I didn't think of it that way. Surely diarrhea meant you were in pain, and had to make mad dashes to the toilet? I rarely had anything more than a twinge, and though I did get signals to find a toilet fairly smartly, I was never in a panic about it. But all that vanished. 

 

Other symptoms like brain fog and joint pain seemed to be gone as well, but I was more skeptical about those, given that the first could be a placebo effect and the second was only sporadic in any case. (I'd assumed that everyone gets joint pain from time to time by middle age – don't they? How does one tell what's normal and what's a symptom of illness?)

 

For two weeks I felt great. Then frustration at the restrictions set in. I'd need to get a diagnosis to see if I really had to live like this for the rest of my life. In total, I spent about a month gluten and lactose-free. I reintroduced lactose without gluten after that, and got the expected reaction. So I cut out the lactose again and reintroduced gluten, and the results were similar.

 

I've been back on gluten for roughly a month. I was expecting resistance from my doctor when I asked to get tested, given how few symptoms I have, but she simply handed me a form for the blood test. I had been planning to give it another two weeks, as I'd heard you have to be back on gluten for at least six weeks before being tested, but from what I've read here, two to three months are advised. Should I really leave it that long? I was only off the stuff for four weeks, and before that I lived on it.

 

What I find odd about the thing is that most people who have celiac seem to have other health problems as well. I've never had a serious illness, and never go to the doctor. OK, I do suffer from depression, but a couple of flirtations with antidepressants persuaded me that there was nothing that the medical profession could do for me, and that the best I could do would be to apply my usual formula, which is ignore it and it will go away, which works for everything apart from cancer or a broken leg. Or so I thought.

 

Anyway, any thoughts welcome. 

[Jill-L]

Hi,

 

I'm new here and to the thoughts of a possible celiac diagnosis.  I enjoyed reading your post.  I've been convinced that before I go gluten-free I ought to get tested, so I've decided to do that.  Your post re-affirms that's the right thing to do.  

 

Thanks for sharing, and good luck to you!   

[nvsmom]

Welcome to the board.

.

Hello, knowledgeable people. I hope your experiences might shed some light on mine.

 

I'd never thought that I had any food sensitivities, and was rather proud of my ability to eat anything edible to be polite even if I didn't like it very much, but last year I finished off a pint of milk before going on holiday, and subsequently spent a fair amount of time in the ferry's toilet. The sensible advice was that many people become somewhat lactose-intolerant with age, and it probably wasn't necessary to cut it out entirely, so long as I didn't drink pints of milk at one go. Which is what I did.

 

But I began wondering whether I'd notice any difference if I cut it out entirely, not really expecting anything. Almost as an afterthought I decided to cut out gluten at the same time, more out of pique than because I seriously believed I could be celiac. A fair amount of my diet was pizza and pasta and cheese sandwiches, and if I couldn't have all that, I might as well expand my repertoire and explore new grains. I might even learn how to pronounce quinoa.

 

The results were unexpected. For about a decade, at least, I've suffered from episodes of diarrhea, but I didn't think of it that way. Surely diarrhea meant you were in pain, and had to make mad dashes to the toilet? I rarely had anything more than a twinge, and though I did get signals to find a toilet fairly smartly, I was never in a panic about it. But all that vanished. 

 

Other symptoms like brain fog and joint pain seemed to be gone as well, but I was more skeptical about those, given that the first could be a placebo effect and the second was only sporadic in any case. (I'd assumed that everyone gets joint pain from time to time by middle age – don't they? How does one tell what's normal and what's a symptom of illness?)

 

For two weeks I felt great. Then frustration at the restrictions set in. I'd need to get a diagnosis to see if I really had to live like this for the rest of my life. In total, I spent about a month gluten and lactose-free. I reintroduced lactose without gluten after that, and got the expected reaction. So I cut out the lactose again and reintroduced gluten, and the results were similar.

 

I've been back on gluten for roughly a month. I was expecting resistance from my doctor when I asked to get tested, given how few symptoms I have, but she simply handed me a form for the blood test. I had been planning to give it another two weeks, as I'd heard you have to be back on gluten for at least six weeks before being tested, but from what I've read here, two to three months are advised. Should I really leave it that long? I was only off the stuff for four weeks, and before that I lived on it.

 

What I find odd about the thing is that most people who have celiac seem to have other health problems as well. I've never had a serious illness, and never go to the doctor. OK, I do suffer from depression, but a couple of flirtations with antidepressants persuaded me that there was nothing that the medical profession could do for me, and that the best I could do would be to apply my usual formula, which is ignore it and it will go away, which works for everything apart from cancer or a broken leg. Or so I thought.

 

Anyway, any thoughts welcome.

Celiac symptoms can be subtle or absent entirely. It is a good idea to get tested before it becomes extreme.

I had pretty mild symptoms for the first 20 ears of my life. Just stomachaches and constipation with the occasional headache or joint pain, then I suddenly developed another autoimmune disease that almost killed me. Then a few years later I became hypothyroid too, so I had about five tough years where I developed quite a few new complications and symptoms. And i considered myself to be a pretty healthy person too. LOL

celiac disease is not a linearly progressing disease - it seems to advance in fits and spurts. KWIM?

If you have been gluten-free for a few months you may want to wait a bit longer before you test. 8-12 weeks if generally thought to be the best length for a gluten challenge, and even that is not enough for a small number of celiacs. If you can wait longer, it might make the tests more accurate.

Best wishes.