The doctor could do nothing for me

[andrewducker]

I went to see the doctor this morning, to talk about that thing that doctors love best - self-diagnosed problems investigated via the internet.

I've had blood sugar issues for decades - the first time I had a hypoglycemic attack I was (I think) 16. I'm fairly sure this was down to my liking sweet things far too much, and consequently stuffing myself with them at every opportunity. Basically, whenever I eat something sweet my blood sugar spikes for about half an hour, and then crashes, leaving me shaky, sweaty, with my head spinning, and generally feeling pretty rubbish and incoherent. Oh, or just plain grumpy. My reading (with some help from Julie) led me to think this was probably Reactive Hypoglycemia.

The solution for which is to "stop eating the bloody sweet stuff that makes you feel shit". And so I don't. Mostly. Except when I have all the self-control of a rat on crack, for instance when I'm stressed, which I am too much of the time at the moment *sigh*.

Also, both stress and weight feed into this - when I'm less stressed it affects me less. When I'm thinner it affects me less. As I'm currently overweight and stressed, things could be better. But I am working on this.

A more recent issue is gluten related. I've been having an issue for about a year where eating bread made me "gassy", with pasta causing a similar (but lesser) effect. And this has been getting progressively worse, to the point where eating a couple of pieces of toast would cause my stomach to swell up and then do awful things which I shall not inflict on you*.

And so I went in and told the doctor, and he said "Yes, that sounds like reactive hypoglycemia. Don't eat sweet things. And that's gluten intolerance alright. If you're willing to eat gluten for 6 weeks then I can do a test at the end of it for coeliac. Which we would treat by telling you not to eat gluten." To which my response was "I am not putting up with 6 weeks of pain and awful noises* in order to be told not to eat something I'm currently not eating."

And he sympathised with me on both counts, and sent me on my way.

Glad I went in though. I'd have felt really stupid if there was something useful they could do and I hadn't checked. Or if I'd completely misdiagnosed myself. It's always nice to have doctors tell you that you're right :->





*Feel free to imagine in your own time.

Comments

[buddleia]

I have absolutely seen elsewhere that some people should not eat sugar without also eating fat or protein. It might be worth seeing if you can head off the problem by eating a bit of peanut butter whenever you grab something sweet. Always good to know your own reactions!

[buddleia]

All the posts I'm thinking of aren't public, but here's a good one that is.

[j_v_lynch]

I have almost exactly the same problem (both with sugar and occasionally with gluten). In addition to not eating crap, I've found that regular exercise really helps with my ability to keep my blood sugar stable.

[cheekbones3]

I think corn pasta is actually quite edible. Rice pasta isn't too bad either.

Just don't think about cake.

[thejeopardymaze]

There are different tests for Celiac that don't require it eating more gluten, but I'm glad your doc is smarter than the one's I've encountered in a certain University clinic in my area.

[andrewducker]

Oh, I can do that. But then I end up in a cycle where I'm eating sugar+fat/protein and coping ok, but if I _stop_ eating the sugar then I feel crap, and it takes me 3/4 days of grumpiness to wean myself off of it.

[lizzie-and-ari.livejournal.com]

*Feel free to imagine in your own time.

Can we, equally, feel free not to?

[momentsmusicaux.livejournal.com]

I have something similar.

I avoid sugary things between meals, as I end up feeling sort of too full and hungry at the same time. This is particularly bad if it's coming up to a mealtime, so I'll never eat something sweet past 5pm -- I'll wait till after dinner.

Cake at 3 or 4 I can manage, but that's pretty much the only time that works and even then there is a definite change.

Generally, I have a pretty narrow window in which I have to eat meals. Lunch at 1pm is about doable, but half 1 and I start to feel antsy, leading to wobbly, leading to (when I've had no other option) feeling like I'm going to keel over any second. And really crabby. Which is why when there are big gatherings or outings of people I'm always the one to ask what the meal plan is and then shepherd people along to sticking to whatever the plan was.

[andrewducker]

Hmm. Ok, yes, this once.

[andrewducker]

Yeah - it depends on my current habits, and how well I've been looking after myself. If I've been eating well for a few weeks or longer than postponing lunch by an hour is fine. If I've been snacking then by half-twelve I'm feeling very antsy.

It took me a long time to learn to recognise the difference between "I feel like eating because I am low in blood sugar", "I feel like eating because I am stressed" and "I am actually hungry".

The first two feel very similar to me, because they both cause shakiness.

[simont]

If you're willing to eat gluten for 6 weeks then I can do a test at the end of it for coeliac. Which we would treat by telling you not to eat gluten.

Well, yes, but (at least in my case) they also do a bunch of potentially useful ancillary things such as checking your bone density (coeliac disease can cause osteoporosis), vaccinating against this and that which coeliacs are at higher risk of (I forget what they were), arranging for you to be able to get a range of gluten-free substitute foods on prescription (some of which are a significant improvement on the stuff in the supermarket Freefrom aisle), and providing other specialist dietary advice (e.g. coeliacs are at risk of both iron and calcium deficiency so eat plenty of both). So a positive diagnosis, supposing you would get one, would not be completely without utility.

You might nonetheless feel that you're better off just avoiding gluten than going through the faff, and I couldn't blame you, but it doesn't seem to me that it's quite the no-brainer you make out in that paragraph.

[makyo.livejournal.com]

the first time I had a hypoglycemic attack I was (I think) 16
Early on in my third undergraduate year, I noticed I was occasionally feeling very faint and shaky, usually correlated with not having eaten quite enough recently. So I went along to see the doctor to ask his advice. (Think Bob Buzzard from A Very Peculiar Practice - doesn't seem to like patients, especially students, not obvious why he's working at a university medical practice.) He checked my pulse and blood pressure, listened to my breathing with his stethoscope, etc, and then announced he couldn't find anything wrong with me. So I left, with the definite impression I'd just wasted his valuable time (although since this was the only time I went to see him in three years, that was a tad unfair), feeling like a hypochondriac, and still none the wiser as to why I'd been feeling unwell recently.

A couple of days later, I was chatting to a friend who'd been a nurse for several years before resigning and going to university to study linguistics. I mentioned my main symptoms and she mentioned a couple of other symptoms which I also recognised. "That sounds like hypoglycaemia," she said. "You should be fine as long as you make sure you eat regularly and don't overdo the sugar." I mentioned the doctor's general lack of interest and failure to diagnose what now turned out to be a fairly routine thing. "Oh him. He's awful. Should have been struck off years ago."

[andrewducker]

Cheers for that. I shall do some reading!

(And he didn't tell me all of that, so it's definitely worth educating myself)

[strangemeetings.livejournal.com]

There are a couple of disadvantages to not getting properly tested for coeliac disease -- if you do have it then you need to be a lot more careful about cross-contamination, going out for meals, etc, even if you don't appear to be getting symptoms (as it can still cause all manner of complications of varying degrees of nastiness), which are a lot of trouble if you don't need to be that careful, but very important if you do. You also don't get the same level of advice/support/general monitoring.

With a CD diagnosis you also get free food (on prescription) but that's probably going to fall to spending cuts soon anyway, and is a hangover from days when gf bread was ten quid a loaf and only available in healthfood shops. I don't claim any on principal.

Doing a gluten challenge is absolute hell (but a nice chance to say goodbye to proper bread/pastries/beer/cheap Chinese food), but worth the necessary evil if you have family history or more specifically coeliac-y symptoms (nutrient deficiencies etc).

You can also of course go properly (being mindful of cross contamination, not cheating, etc) gluten free without an official diagnosis or whatever, though the internet is full of huge amounts of woo and misinformation about coeliac, gluten, and what actually is gluten free.

Oh and if you need any advice/have any questions on gluten free stuff, give me a shout. I've been gluten free for...fuck, close to five years now! It's second nature once you get used to it, and way easier these days :)

[pigwotflies.livejournal.com]

There's a blood test for coeliac disease. Have you ever had it? I think they still have to do the biopsy to confirm the disgnosis though.

[andrewducker]

The blood test looks for an immune response for gluten, which is only there if you've been eating it over the preceding six weeks.

[bugshaw.livejournal.com]

You still need to eat gluten for 6 weeks before the blood test, it checks for how the body responds to gluten.

[pigwotflies.livejournal.com]

Ah, yes, that would make sense.

[andrewducker]

Cheers for that, I'll keep you in mind if I have some questions!

[parthenia14.livejournal.com]

I have periods where I suffer from hypoglycaemia very badly and other times where it seems to disappear. Still can't miss meals, though, and I can't substitute sweet stuff for a meal without dire (sweaty, wobbly) consequences.

I've been tested several times but my blood sugar has always come back normal. Things seem to go best when I do regular exercise and eat a low GI diet, but as you say that requires thought & planning.

[alitheapipkin.livejournal.com]

On the other hand, you can be sensitive to gluten without being coeliac and getting a positive blood test result. I've had the blood test and it was clear but I still can't eat pizza for toffee or too much bread or pasta without blowing up like a balloon.

That said, I didn't know about those extra health risks for coeliacs.

[andrewducker]

Yeah, I was tested for diabetes, and that came back normal. But (according to my GP) that's because a diabetes test wouldn't spot hypoglycaemia.

[fjm.livejournal.com]

Eat the damned gluten and take the damn test!

The longer you stay off gluten a) the harder it is to get a positive and b) the more sensitive you become so the harder it is to eat gluten for six weeks to get the positive, and as simont indicates there is more to gluten intolerance than gas and air.

Side effects to celiac are wide ranging (my arthritis may well be a related autoimmune response) but top of my personal panic list is colon cancer. If you have celiac you need to have it marked on your file because they are finding out more unjoyful stuff all the time.

(double check milk as well by the way, about a third of celiacs are lactose intolerant).

[alitheapipkin.livejournal.com]

The hypoglycemia stuff is interesting - I don't really have a sweet tooth so I've never really noticed sugar crashes after indulging but I can't go without meals and go a bit shaky, anxious and very grumpy if I don't eat regularly.

[andrewducker]

I haven't had more than a splash of milk in aaaaages, as I've been on no-sugar soy milk for a couple of years (when I have cereal), to avoid the blood-sugar stuff.

Point taken about colon cancer. *sigh* I'll see if I can cope with the symptoms.

Of course, if they'd just find the genetic source of coeliac I could wait two years until a genetic screen was cheap enough.

[fjm.livejournal.com]

I have hypoglaecemia and it's only really just been acknowledged as an issue by UK docs. Like you I used to crave sugar (and by the way, that's an alert for celiac as well--an urge for calories because food just isn't getting there, it went as soon as I was diagnosed with celiac).

I learned to keep it at bay with olives. Yeah, I know. Weird. But they are fatty and help craving, and their taste knocks back the sugar taste

[fjm.livejournal.com]

Look around the family. Any "creaky gates"?

My mother used to say I was a hypochondriac just like my Dad and his mum. Now my Dad, uncle, and two cousins all have the diagnosis.

[fjm.livejournal.com]

Fifteen years and counting....

[momentsmusicaux.livejournal.com]

I started noticing this a lot more while an undergraduate. I expect it was because once I was in charge of my mealtimes I was somewhat more lax than when I was living at home.

I eventually figured it out, and developed a discipline around what I eat and when -- it's just a given that I've figured out how to work around :)

[makyo.livejournal.com]

Yes, I think you're right. Having gone from an environment where I was eating balanced meals at regular times during the day to one where it was completely up to me what I ate, when I ate, and indeed if I ate, my blood sugar level was naturally going to be less stable than it had been.

It still makes me a bit cross that the doctor was so useless and unhelpful about what must be a pretty common thing for undergraduate students. I actually asked him if it might be related to my diet and he said "no, I doubt it - you hear a lot of nonsense about the effect of diet these days". Whereas the correct answer (the one that my friend gave me a few days later) was clearly "yes, might well be - make sure you eat regularly and healthily and you'll probably be ok".

[channelpenguin.livejournal.com]

I don't react badly to sugary stuff (except it makes me want more!) in occasional doses, but regularly it stuffs my skin up (psoriasis). Bready type things (esp wholemeal)- yeah, get the the antisocial nasty effects. Steven has just this year had to give up museli for breakfast for the same reason (hit his mother and uncle the same way at the same age). We have steak/chops/fish(me)/eggs + veggies for breakfast, fish + salad for lunch meat/fish + veg for tea, full fat Greek yoghurt for snacks and now and no trouble, also no daytime sleepiness. We eat a lot of fat - I have gone through 3 pints of extra-thick double cream, half a block of butter and a fair wodge of beef dripping, as well as olive oil, oily fish, nuts, eggs etc. this week. We are both naturally skinny/wiry so it's hard to tell, but neither of us getting fatter, lets put it that way.

[danieldwilliam.livejournal.com]

I don’t have the same acute response to sugary stuff that you seem to but I definitely notice a difference in my mood if I eat low GI food. I’m happier, more energetic and have a more even mood.

Sometimes good to have your self-diagnosis confirmed. At other times, better to be told you’re wrong.

[undeadbydawn.livejournal.com]

it may actually be milk content in the bread / pasta.

fucks me up like nobody's business. We've recently discovered it does the same with Daughter. Slow burning nausea and farts that can strip wallpaper

[ophelia-complex.livejournal.com]

My mum has chronic coeliac condition and has to be very careful. If you have it, you're not absorbing nutrients from your food which is going to affect how you feel (tired all the time/poor concentration) and also your skin, hair and weight.

[despotliz.livejournal.com]

It's got a fairly strong association with various HLA subtypes, according to 23andme, it's one of those complicated genetic-envionmental interaction things where a particular version of HLA is necessary but not sufficient - you need the right HLA type and then some kind of trigger, and there's other associations. So a definitive genetic test is unlikely, but you could see if you have the right HLA to be at risk.

[nancylebov.livejournal.com]

Can you buy yourself some slack by buffering sugar with fat and protein?

[widgetfox.livejournal.com]

Are you interested in others experience and / or advice on this? I am happy to share what I have learned if it would be useful. (I don't have these particular intolerances, but I have other related stuff, as you know.)

[andrewducker]

Yes please!

If you'd rather do it in person then I'm happy to wait :->

[andrewducker]

That's what I tend to do if I crash. But buffering it all the time just means that I (a) eat more and (b) build up more of a "normal" level of blood sugar, which means that when I decide to stop again it takes me three days of feeling ghastly to work my way back down to where I ought to be.

[andrewducker]

Yeah - knowing that I have those genes would be nice, because then I'd know whether it was worth being tested at all.

[widgetfox.livejournal.com]

I've got loads of stuff on this as you know and I'm happy to talk about it via any medium at any time.

Reading this, though, what really came to mind is that it's all about negatives. Don't eat sugar. Don't eat gluten. Etc.

What is starting to work really well for me is choosing some positives instead and focusing my attention on them. I've added £150 per month to my food bill (which has come out of other stuff that matters to me, like clothes and products and therapy) so that I can buy the foods that I really like and are good for me. It means that I'm ordering out more often* and buying more luxurious foods at more expensive stores. But it also means that I can design a week full of food that I will love and I won't feel deprived, even if that week does not include all the food that I used to love. It probably wouldn't be that much if I lived in Edinburgh.

Another thing I do is slowly try to increase the number of 'top line' days - days where everything I eat is healthy - per week. If I try and make every day a top line day, I won't make it. It's too big a jump from where I'm at now. So right now I am trying for four a week, and when that's embedded I will go for five a week. Yes, it means that I sometimes feel lousy after the other three days, but it's sustainable. I am playing a long game here.

* I adore Indian food and it's good for me. So once or twice a week I will order all the vegetable dishes from the curry house round the corner and keep them in the fridge and eat them over the course of the next few days. Etc.

[andrewducker]

So far as I know, none of them have it. But I really ought to check. I'll chat to my parents and see.

[widgetfox.livejournal.com]

Also, I have no way to gauge whether this would be useful or rubbish because all metabolisms are different, but I have spent many hundreds of pounds on supplementation with the intention of smoothing out my blood sugar, and the only thing that's ever made a blind bit of difference is taking two of these with supper. They help me sleep as well. (It's possible that these aren't independent. I don't know.)

[andrewducker]

Oh, absolutely. I don't do "diets" which consist of "For a limited time, do something really hard and unpleasant" - but I am happy to change my diet to one which is healthy, and find things that taste nice.

Luckily I like cold meats, vegetables and eggs, and am very happy to mix them together in different combinations.

I like your idea of buying in a bunch of food. I shall give that a go!

[andrewducker]

Julie's been praising magnesium recently. I shall give these a go!

[widgetfox.livejournal.com]

For me, the important thing is to avoid a sense of deprivation. If I feel deprived, lots of triggers get hit and I go into child mode and start bingeing.

That's why I don't have any banned foods, even though I hope very much to get to the point where there are lots of foods I stop eating. I just can't get there by banning them.

[andrewducker]

Aaah. If I don't ban myself from certain things then I have the self control of a rat with a deep-rooted crack problem. It seems that in some ways we are opposites :->

[widgetfox.livejournal.com]

Depends also on (a) priorities and (b) individual model of cause and effect. I did fifteen months of a textbook diet - no dairy, almost no wheat, no sugar, no processed food - and have never been more obsessed, or had worse digestion. Concluded that stress harms me more than chemicals, and (eventually) adapted strategy accordingly.