My doctors are driving me insane

[Justin young]

2001- suddenly and without warning developed hay fever 

2002 - went to the doctors complaining of constant diarrhoea 

2003- diagnosed with carpal tunnel syndrom after getting numb hands and arms and persistent pins and needles along with shooting pains which felt like hot pokers were being inserted in my body.

2006- starting to get easily fatigued and tired, often fall asleep when coming home, sometimes while lying on the floor playing with my daughter 

2010-went to doctors with consistent pain in lower right side of rib cage, so bad at times that I couldn't sleep on my right side. Scan revealed no alcoholic fatty liver disease and raised alt

2011- starting to get major headaches and neck ache at the base of my skull 

2012-memory starting to get bad

2013-memory still deteriorating and starting to get bouts of confusion, gave up clay pigeon shooting as I had a confusion attack while shooting and felt that for people's safety I needed to stop. Starting to get ringing in ears.

2014- confusion attacks and memory getting so bad that I felt I was developing dementia at 44! Started recording in my phone details of symptoms and problems. Ringing in left ear constant but occasionally progresses to right ear as well. Occasionally getting dizzy spells with the confusion.

2015-heard about lymes disease on the radio and the symptoms seemed to click (also knew I had been bitten by a tick in the past) decided to get checked out-my doctor actually laughed at me and said you can't have lymes disease! Blood test taken and not lymes but symptoms carried on....went and seen another doctor (this time a trainee) she decided to check my folate and B12 levels. Bingo! Low folate of 4.1 minimum should be 4.7. Put on folic acid and went on healthy eating binge with lots of fresh meat and green leafy vegetables. Amazing improvement....felt better and folate level went up to 20 in 4 weeks,  also gave the doctor a copy of my multi vitamins I was taking for 7-8 months prior to blood test-containing the recommend daily dose of B12 and folic acid (so how could my folate be so low?) told to stop folic acid, eat normally and come back in 4 weeks, folate level dropped to 7 in space of 4 weeks, feeling crappy again. Told to take folic acid for a year but keep eating leafy greens (I now eat more spinach than Popeye!)  refused referral to memory specialist and gastroenterologist. Dizzy spells getting worse. Gland in right side of neck under ear always swollen when I'm feeling really bad.

2 more doctors visits refused memory specialist/neurologist and a gastroenterologist again and again. Told I have IBS  and that's it.

however- memory still pants, and carpal tunnel and numbness headaches etc still happening, liver pain intermittent, starting to get spasms in my arms and legs sometimes like a bug is crawling under my skin. Kept going to doctors as feeling down and lacking any excitement for life in general, told I am depressed and need anti depressants. These gave me the worst headaches of my life and stopped them after a week without any improvement in my mood I might add. Doctors again in December of 2015- this time doctor tests me for Coeliac disease, eeerrrr ok ?! Had the blood test and went gluten free until I got the results. 

WOW what a difference!! No aches or pains anywhere for like the first time in 14-15 years, headaches cleared after 2 weeks, no carpal tunnel, diarrhoea stopped too. Sleeping better, and no confusion although my memory didn't improve.

blood test results- one of the two was inconclusive 

2nd said non-coeliac

 

???????????

Puzzled but as I was feeling better I carried on with the gluten free diet and I had some Peronni grand reserva lagers on New Year's Eve, bad idea! In bed within 2 hours, bloated, headaches feeling like I have flu. Next day-major dizzy spells and god awful ringing in both ears. Took 3 days to feel better. Still on gluten free diet as I was feeling so much better.

mid January 2016- accidentally had gluten in the form of barley in a 10gm sachet of brown sauce on a breakfast of tomatoes, bacon, eggs and mushrooms. Two hours later headache, diarrhoea, feeling sick as hell, home to bed. Next day couldn't even stand up dizzy spells were so bad as was the ringing in my ears. Decided to see a gastroenterologist privately. Spent 3 days in bed with what I would describe as severe flu but no cough or runny nose.

tested for coeliac disease again, but doctor seemed to ask me more pertinent questions, concerned about my liver and 13 years of diarrhoea. Books me in for an endoscopy and colonoscopy straight away (on the nhs as he is private and nhs) runs some bloods, iga comes back as 3.7-normal, elevated liver enzymes, elevated ige. Writes letter to my gp saying I might need an mri depending on results of biopsies. Suggests to my gp in his letter that I might be seronegative.

Go to my gp, told him I am in for a biopsies and he says make sure you are eating gluten, still wants me to go on anti depressants and says I'm unlikely to be coeliac due to my iga results (in a period of 5 weeks when I accidentally ate gluten twice two weeks apart).

17-03-16 still waiting for biopsies, but remembered something after reading the posts on here....  I often get insanely itchy blisters on my ears, full of lager coloured fluid(usually I pop them to make them scab and disappear quicker) I also remember getting similar ones but not so fluid filled on a couple of my fingers, so itchy that I would take a nail clipper and pop them to get some relief. 

Last few weeks of being back on gluten I have been getting the odd very itchy red spot on my forearms.. So decided to go to the doctors again with this new information as it looks like dermatitis herpetiformis .....result? No! Told I am severely depressed and need anti depressants, and promptly gives me a sick note signing me of work for two weeks with depression and wheat intolerance?!?!?!? I'm self employed and own my own business with people working for me!!! So what the hell was the point in the sick note?

i honestly think I'm going crazy, certainly my gp thinks I am! but would like to hear feedback on whether people think I'm mad or whether I'm coeliac or gluten intolerant. And whether my symptoms sound consistent with other people's.

 

 

thanks

 

justin

 

[ravenwoodglass]

Welcome to the board Justin.  It does seem like you are in the right place.  If I read it right it sounds like you were gluten free except for a couple slip ups when you had your blood tests. If that is the case then the tests would not be valid. You have to be eating  gluten for any celiac related testing to be accurate. If you are going to have the biopsies done you need to go back to eating gluten.  You don't have to eat a lot of it just a couple slices of bread a day or the equivalent. I know that you really don't want to hear that but it has to be done for an official diagnosis.  You do have the choice of just staying gluten free but if you can get diagnosed that is best.

[Justin young]

When I had the celiac test, in December I was eating gluten. However the day of the test was when I went gluten free. I have noticed physical and mental improvement in all areas except my memory when gluten free. Even my diarrhoea stops. I should have mentioned the brain fog, something which I have been getting for 4-5 years I always called it my underwater feeling in that I always felt as though I was underwater with the associated pressure feeling in my head. Now I have read the forums here and other web pages on celiac disease and gluten sensitivity and undertaken a gluten free diet I am convinced that it is wheat/gluten that has been chipping away st my health all these years. But to say my doctors surgery is unhelpful is an understatement. Constant IBS diagnosis and prescribing anti depressants is the order of the day with no thought given to my folate deficiency and liver disease.

if I have to pay privately to get a correct diagnosis then I will. Can anybody on here recommend a doctor that specialises in gluten and celiac disease in south west of the U.K.?