Diabetes Support Forum

Living with diabetes => General discussion => Topic started by: Pattidevans on 31 October 2017, 03:11:22 PM

Title: Blood tests, bit of a rant.
Post by: Pattidevans on 31 October 2017, 03:11:22 PM
As I posted before, I was recalled to have a load of blood tests after the diabetic bloods were done recently.  Liver function, kidneys etc and the repeat tests all came back "normal".  However, certainly since about the middle of August I have been having on/off stomach pain in my lower abdomen, sometimes almost unbearable.  It comes and goes and after having a bout which goes on for days I make up my mind to see the GP and it miraculously disappears.  Sometimes I feel nauseous with it, sometimes not so much, but it's wearing and debilitating.  I've been blaming it on a diverticulitis flare up and thinking "Oh it'll pass". 

Anyway after a rather miserable bout last week I finally went to the GP and saw a young chap.  Very nice, mentioned IBS etc.  Asked for urine samples, and sent me for a blood test for all sorts.  Said it did need investigating, so he was not dismissing me.  Got a phone call today from the surgery saying whatever they tested for, inc liver function, kidneys etc were normal but that there was some sign of an infection.  I thought it odd cos whatever this thing is, when I really think about it, it's been going on for over a year to some degree.  I'd have thought that a long time for an infection.

Meantime after a conversation between 2 friends, one of whom is Coeliac I had a lightbulb moment and looked up the symptoms.  Quite a lot of which I have.  Diarrhoea, interspersed with constipation, bloating, nausea, stomach pain, tiredness, B12 deficiency, hair loss, rash on face, anaemia and ataxia (I lose my balance and fall easily).  Other indications are Type1 Diabetes, hypothyroidism, skin disorders because yes, it's another autoimmune disease.  I also realised that a lot of the attacks occur (quite quickly) after I go out for lunch with my friend once a week which is the only time I ever eat any bread other than Burgen.  Twice recently I've had to return home early because of being miserable with tummy pain.   Julian said he'd been trying to tell me it might be Coeliac for ages..

So when the receptionist phoned this morning telling me they want me back for more bloods in 2 weeks' time I mentioned that I thought a test for Coeliac might be in order (apologising all the time for looking things up and no disrespect to the Dr etc) and she'd said that she'd email him and if he agreed she'd ring back and make the appointment for me at the same time as the other bloods (for which we made an appmt).  She's not rung back, so I dunno... What I am asking I suppose is whether it's difficult to get the Coeliac test, or expensive or something.

Believe me I don't want to have Coeliac disease.  I just want to feel better as soon as possible cos it has gone on too long!
Title: Re: Blood tests, bit of a rant.
Post by: sedge on 31 October 2017, 06:13:19 PM
I've no idea how expensive it is - it shouldn't be, should it?  Think you need to ask your doctor for the test quite honestly and think also he'd be utterly unreasonable to refuse!
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 31 October 2017, 06:38:09 PM
I eat my words!  She rang me back at 5:45 to say the Dr thought it was very reasonable to do the test and gave me an appointment at 3pm tomorrow!  In lots of ways I hope it is negative, but on the other hand I need some answers.  Having Cous Cous tonight and will eat some of Julian's bread tomorrow before the appointment!
Title: Re: Blood tests, bit of a rant.
Post by: sedge on 31 October 2017, 10:42:19 PM
Excellent.  Yup - Pumper Sue's always telling folk to eat gluten before being tested (I mean not to limit it otherwise the tests could be neg when they're really pos) .  So just hugs for the pain!

It would be , relatively, easy if it is coeliac.
Title: Re: Blood tests, bit of a rant.
Post by: Venomous on 01 November 2017, 05:29:45 AM
good luck
Title: Re: Blood tests, bit of a rant.
Post by: Paulines7 on 01 November 2017, 10:30:33 AM
I am sorry to hear about your pains and other symptoms, Patti and pleased that your GP is trying to get to the bottom of it with all the tests. 

One of the benefits of the prebiotic Bimuno that I take, is reducing inflammation in the gut.

See: https://www.bimuno.com/probiotics-prebiotics/benefits-of-prebiotics

I am not suggesting that you start it now but it may be worth considering at a later date.

Good luck with the results of your test for Coeliac.
Title: Re: Blood tests, bit of a rant.
Post by: himtoo on 01 November 2017, 10:50:48 AM
fingers crossed for you lovely xxxx
Title: Re: Blood tests, bit of a rant.
Post by: Dr DeEath on 01 November 2017, 01:11:16 PM
Might it be worth trying a wheat/gluten fee diet after the blood tests? I have been told symptoms can improve after 24/48 hours.
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 01 November 2017, 05:04:58 PM
That would indeed be nice.  I have had ordinary toast this morning and naughtily ate up last night's leftover cous cous.  Then went to a meeting, then had an hour to spare so went and had a toasted ciabatta with brie and tomato in a cafe for lunch before the blood test.  Within half an hour after the ciabatta I developed bloating and belly ache which I have still got.

Forgot, the HCA managed to stick the needle into a nerve and I nearly shot out the chair!
Title: Re: Blood tests, bit of a rant.
Post by: sedge on 01 November 2017, 09:05:25 PM
Oh ow at the blood test Patti - it's impossible NOT to shoot 3 feet in the air when anyone hits a nerve anywhere.

How long for results?
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 02 November 2017, 08:49:27 AM
TBH I forgot to ask Sedge.  i’ll Find out.
Title: Re: Blood tests, bit of a rant.
Post by: Venomous on 02 November 2017, 02:19:48 PM
Just checking in to see if you've heard anything yet.
Title: Re: Blood tests, bit of a rant.
Post by: Liam on 02 November 2017, 03:22:12 PM
Hopefully not but at least it would be an answer. I'm sure it wouldn't change your diet that much anyway?
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 02 November 2017, 05:56:55 PM
no news yet.

Title: Re: Blood tests, bit of a rant.
Post by: Paulines7 on 03 November 2017, 10:49:58 AM
Ow!! the nurses have never hit a nerve when taking my blood but very occasionally I end up with a huge bruise that lasts for a couple of weeks or so. 

Good luck with your results, Patti.
Title: Re: Blood tests, bit of a rant.
Post by: sedge on 03 November 2017, 11:20:10 AM
Nor me Pauline but you do realise we're both tempting providence !!  LOL
Title: Re: Blood tests, bit of a rant.
Post by: plumb on 06 November 2017, 06:55:06 PM
I have been worrying about your tummy pains and think that all though you have a wonderful knowledge have you ruled out Gastroparesis I hope you don’t think that I am interfering just a thought.
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 06 November 2017, 07:22:45 PM
Plumb

It's very sweet of you to worry!  I am really very touched  :)

I did rule out gastroparesis for the folowing reasons.  I have no evidence that my stomach is emptying slowly.  Insulin absorption very much seems to deal with what I eat in a reasonable time frame.  The pain is in my very low gut and I have a known diverticular condition, it's common for the pouches to get inflamed from time to time and it is the same pain that I've experienced when this happens, except this time it's gone on longer.

The reason I suspect that it may (or may not - no results yet) be coeliac is because of the other symptoms I have:

Vitamin B12 deficiency
Ataxia - poor balance, poor muscle co-ordination leading to a number of falls.
Hair loss, not in patches so much, it's pretty thin all over - to near baldness in places.
Fatigue (after a good 8 hours sleep)
Diarrhea alternating with constipation and a general feeling a lot of the time that I've not emptied my bowels enough.
Skin rash, though that may be Rosacea - I am on 12 weeks of antibiotics for that.


Still, if it's not Coeliac the Dr said he felt it needed investigation and knowing the lovely people at my surgery, it will be!  I'll ring tomorrow to see if there are any results and post in the forum.

Thank you so much for your concern Plumb


Title: Re: Blood tests, bit of a rant.
Post by: BBarb on 07 November 2017, 10:26:29 AM
I've sent a PM Patti, but it doesn't tell you anything except stuff I could write on here.  CD can be diagnosed by a simple blood test now which I'm sure isn't a hugely costly business, you then used to have to go for a gastroscopy (which I'm sure was expensive), but most enlightened GPs now don't require you to undergo this somewhat unpleasant experience.  You are doing the right thing in continuing to eat gluten in the meantime (but a slice of bread a day is sufficient) to avoid a false negative.
Try http://members2.boardhost.com/glutenfree/index.html?1410816035     or type 'The Coeliac DH and gluten free message board' into your search engine. 
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 07 November 2017, 04:01:13 PM
Thank you Bbarb so informative and I'll check out the link you gave.

However, I rang the surgery this afternoon for results and the test came back negative, so not Coeliac.  Doesn't alter the fact that I still feel unwell and leaves me with no answers.  I have another blood test on 14th, so I will see what transpires from that. I keep having these blood tests that say something is wrong, and go for repeats only to be told that everything is "normal". 

Title: Re: Blood tests, bit of a rant.
Post by: Venomous on 07 November 2017, 05:47:10 PM
I'm glad it's not coeliac. I hope you find out what it is soon, I know it must be frustrating to want to improve things and not be able to until you know how.
Title: Re: Blood tests, bit of a rant.
Post by: BBarb on 07 November 2017, 08:03:58 PM
It is a long drawn out business and frustrating to have to keep on eating something that you suspect is making you ill - but in the long term its only a few weeks out of your life and worth getting a diagnosis.
Of course there is a condition called 'non-coeliac gluten sensitivity' which can be as distressing and give the same uncomfortable and inconvenient symptoms as CD, which are alleviated by cutting gluten from your diet completely (not just when you feel like it).  Its not at all uncommon.
Some doctors deny that it exists, but if you get no help with your digestive symptoms you can do what a lot of people do which is to cut all gluten from your life for a period (say a month) and see if it helps.  If you're still getting the painful stomach cramps, bloating and alternating diarrhea/constipation I certainly would give it a try - it can't do any harm and its really not difficult especially as you're already following a low carb regime.
I do hope its not CD but something benign and easily cured (like a bacterial infection of the gut which can be treated with antibiotics) so fingers crossed.
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 07 November 2017, 10:25:21 PM
BBarb


At the back of my mind I recalled something like gluten sensitivity.  I am wondering-how strict would I have to be?  Did a supermarket shop today and spent some time inspecting labels -seems every damn thing has gluten in it.  Frankly we don’t eat processed food, but even some packs of basic grains you wouldn’t suspect come with warnings.
Title: Re: Blood tests, bit of a rant.
Post by: TerryJ on 08 November 2017, 07:31:52 AM
Wheat, barley, rye and oats all contain gluten but they each contain slightly different forms so you may not be sensitive to all forms of gluten. YMMV !

Rice, corn, buckwheat, quinoa amd millet are all gluten free.

Info taken from here -

https://www.livestrong.com/article/522560-gluten-content-of-grains/
Title: Re: Blood tests, bit of a rant.
Post by: everydayupsanddowns on 08 November 2017, 10:45:59 AM
Glad coeliac has come back negative, but sorry that you don't have any clarity as to what it actually is yet :(
Title: Re: Blood tests, bit of a rant.
Post by: Paulines7 on 08 November 2017, 12:10:35 PM
I hope you feel better soon, Patti and that you find out what is causing it.  {{{hugs}}}
Title: Re: Blood tests, bit of a rant.
Post by: sedge on 08 November 2017, 12:44:54 PM
I'd say it's a PITA, but in this case it's a PITS (stomach) I guess.

Whatever the heck it is, hope you can find some relief Patti.
Title: Re: Blood tests, bit of a rant.
Post by: BBarb on 08 November 2017, 06:54:54 PM
Basically being celiac or gluten intolerant means gluten damages the villi in your small intestine.  Dr Google explains it better than me.  Even if you are 'only' gluten sensitive any gluten you eat will still be damaging these villi even if you aren't showing any symptoms.  This is a fact of life for you and you have to deal with it by not eating any gluten at all, ever, for the rest of your life. Sorry you can't be just a little bit gluten sensitive, its like being a little bit pregnant.
Its up to you, eat a little gluten if you choose but you are still damaging your gut and after all your guts are yours to damage as you choose.
Why eat poison that is shortening your life?
Title: Re: Blood tests, bit of a rant.
Post by: Alan on 08 November 2017, 07:30:01 PM
I'm glad it isn't coeliac but I do hope they swiftly discover the true cause of your symptoms.
Title: Re: Blood tests, bit of a rant.
Post by: Avocado on 08 November 2017, 09:00:13 PM
At the back of my mind I recalled something like gluten sensitivity.  I am wondering-how strict would I have to be?
Hi Patti - as you know I don't eat anything with gluten in as I'm possible coeliac (test doesn't work because I don't eat gluten) or, if not, certainly gluten sensitive. I avoid all grain foods - it's that simple - and I don't eat any processed foods so none slip in. Check any Paleo websites or cookery books - and that wonderful 'Real Meal Revolution' cook book by Tim Noakes.

You also mentioned diverticulitis which I also have - the diverticula have been identified on colonoscopy. They can flare up from time to time and cause real problems.

Hope you find some answers soon. Why not try going gluten free as an experiment ? If things don't settle then you'll know it's not that but something else. The other advantage of going gluten free is that it cuts out a whole load of pretty unnutritious carbs :)
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 09 November 2017, 10:57:38 AM
Basically being celiac or gluten intolerant means gluten damages the villi in your small intestine.  Dr Google explains it better than me.  Even if you are 'only' gluten sensitive any gluten you eat will still be damaging these villi even if you aren't showing any symptoms.  This is a fact of life for you and you have to deal with it by not eating any gluten at all, ever, for the rest of your life. Sorry you can't be just a little bit gluten sensitive, its like being a little bit pregnant.
Its up to you, eat a little gluten if you choose but you are still damaging your gut and after all your guts are yours to damage as you choose.
Why eat poison that is shortening your life?


I take your point BBarb. All I am thinking is that I need to rule out other causes before necessarily thinking it’s even gluten sensitivity.  If there is no other obvious contender, then yes, I will go down the gluten free route wholeheartedly.  It will be a huge learning curve for me as I am sure you know.


Terry.. I thought. buckwheat was wheat and had gluten?


Anne, I do have diverticulitis, it was diagnosed after a barium enema and a colonoscopy some 18/19 years ago.  This may indeed be just a flare up.  I haven’t had one since I went lower carb after diagnosis of D. I know the diverticulii can get infected.   The last blood test showed evidence of infection.  I have to have another next Tuesday.  We eat no processed foods... my god, I spent absolutely hours cooking yesterday, both in the morning and again in the evening when I was exhausted by other things.


In retrospect the symptoms all started when I was so wound up I could have committed murder the stress was so great.  Who knows - stress can cause many physical symptoms.  It seems to have completely calmed this week with no tummy pain and tummy returning to normal almost overnight... I am going to see what the results of the blood test are, and if symptoms return then I will certainly try the gluten free route.  I know I am doing a mental reverse from earlier posts, it’s surprising what lack of pain achieves... but I don’t want to necessarily impose a life long restrictive regime on myself unnecessarily.
Title: Re: Blood tests, bit of a rant.
Post by: BBarb on 09 November 2017, 11:22:41 AM
No indeed you don't.
I didn't know about your problems with  diverticulitis - if this is the culprit would it be considered a better result or a worse one?  It could very likely be the case with you especially as you haven't mentioned one of the awful symptoms of CD which is the never ending, overwhelming feeling of being generally 'unwell' which never leaves you.  You begin to feel like a whinging, grizzly baby - if you get my drift - and this on top of the toilet problems and tummy ache makes lift a real slog.  When all this clears up you suddenly realise how dreadful you've been feeling, so a gluten free diet is easily embraced.
Good luck, I hope the improvement continues - perhaps discussing it all has made you more relaxed.
Buckwheat is a seed that comes from Asia, I don't know what plant its from but its not wheat and has no gluten.  Its an American name and these can be misleading, for instance their 'corn' is not the golden fields of wheat we see, but maize or sweetcorn ie cornflour as in custard powder.  It is a carb I think, well I look on it as a carb when I'm using it for cooking.
Title: Re: Blood tests, bit of a rant.
Post by: sedge on 09 November 2017, 12:22:10 PM
Lol Barb - defo a carb just the same as sweetcorn as a veg is a tad high carb.  Not for nothing, the adjective 'sweet' in front of the corn!

In the US of A - they are 'honest' for a change and call it corn STARCH !
Title: Re: Blood tests, bit of a rant.
Post by: TerryJ on 09 November 2017, 01:39:52 PM
Terry.. I thought. buckwheat was wheat and had gluten?

Don't be fooled by the name -
(from Wikipedia)
"Despite the name, buckwheat is not related to wheat, as it is not a grass. Instead, buckwheat is related to sorrel, knotweed, and rhubarb. Because its seeds are eaten and rich in complex carbohydrates, it is referred to as a pseudocereal."
Title: Re: Blood tests, bit of a rant.
Post by: Avocado on 09 November 2017, 03:00:15 PM
but I don’t want to necessarily impose a life long restrictive regime on myself unnecessarily.
Just to reasure you Patti, being gluten/grain free is not restrictive at all. I've never eaten better becasue I'm not using those filler foods, becasue that's what bread, grains, etc are, I eat all the best stuff instead of those fillers. It's more expensive but not restrictive I assure you. And I don't spend hours cooking becasue I don't end up faffing around with the food - it's always meat or fish or eggs with veggies of which there are dozens to choose from. If I want to do something more special I just spend more money on the meat or fish - really good quality food doesn't need work on it - I believe there was a French 3 star Michelin chef who once said that it is simply the quality of the ingredients that's important - a really good omelette for example is so delicious, nutritious and satisfying, and quick to cook as well. And a top quality chicken - just bung it in the oven. I'll sometimes add bacon to a simple stew. If I want to spend time cooking I'll chose something from Real Meal Revolution or one of Mark Sissons's books or his website. DH enjoys all the food I cook.
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 10 November 2017, 09:23:47 AM
BBarb it does prove to be just the diverticulitis playing up then (on past experience) it will clear up and hopefully.give no problems for some time - possibly several years.  If it’s not, then I can try out the gluten free route.  So I suppose I am hoping that that’s what it is.


Terry, thanks for the clarification.  I picked up a bag of buckwheat and millet that said “contains wheat”hence my confusion.


 Anne, I do like cooking.  It’s a hobby for me.  We spend a fortune on food too... but I am just as happy pottering with Pork shoulder as I am quickly cooking a good steak.  The hours I spent the other day were on making a complicated dish of pork shoulder with sherry and Parmesan dumplings (2 tiny ones for me), turning a roast chicken carcass into a chicken and asparagus soup, plus making celeriac mash and preparing
Veg.  I take your point though about good ingredients well cooked and it is a philosophy I adhere to.  However, just thinking about the changes to be made... even one of our low carb recipes for cakes would need adjustment as baking powder has to be gluten free.  For someone unused to it every little tiny thing needs thinking about 😀



Title: Re: Blood tests, bit of a rant.
Post by: BBarb on 10 November 2017, 11:56:26 AM
Sometimes manufacturers use lines that have previously been used to process wheat products and so the grain that started life being gluten free becomes 'contaminated'.  They have the responsibility, by law I think, to inform their customers if there is any possibility of this.
Obviously your diverticulitis is something you have to live with but fingers crossed your tummy soon settles down from this recent outbreak.
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 04 February 2018, 12:04:04 PM
Fast forward several months.  I eventually got to see a specialist on 9 January.  Very pretty female, absolutely tiny, looked as though she wasn't old enough to leave school... but nevertheless very thorough.  She said I should have a scan that involves pushing wind into the bowel.  So yesterday the appointment arrives for 5:30 on 21st Feb.  For two days prior to that I have to eat only white bread, grilled fish or chicken and boiled eggs.  On the day some white toast before 7am or 2 boiled eggs.   Something complicated about taking the nasty pills and die along with not taking Metformin.  Have to ring the Diabetes Centre this week on that one!
Title: Re: Blood tests, bit of a rant.
Post by: Liam on 05 February 2018, 08:00:27 PM
Nothing about clear soups? Sounds a lot like the diet you do before the strong laxatives for a scope.
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 05 February 2018, 09:13:56 PM
Yes, also clear soups or bovril.


Btw I meant dye, not die!
Title: Re: Blood tests, bit of a rant.
Post by: sedge on 05 February 2018, 10:12:17 PM
I do sincerely trust that wasn't a Sigmundian slip!  LOL

They fill you full of wind to do a colonoscopy - and what goes up absolutely has to come down - and made me feel a great sense of achievement! (before I almost instantly fell deeply asleep for about 3 and a half hours)
Title: Re: Blood tests, bit of a rant.
Post by: Pattidevans on 06 February 2018, 08:58:57 AM
Jen


They don’t do colonoscopies as a rule these days.  The prep is the same, but you swallow this dye (hopefully it wasn’t a Freudian slip) starting that morning and having several doses through the day, before they fill you with wind and do a CT scan.  It’s known as a “virtual” colonoscopy and involves no camera or sedative.   Only thing is the drug that is the dye comes with a long list of “consult your Dr if you have this that or t’other” at least 3of which I have.  I also have to have a blood test for kidney function which I am having this PM.