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What made you get tested?

Posted , 5 users are following.

nicky65646
nicky65646

hi

i am quite convinced I may have celiac. I am thinking about doing a home test to start with to give me the confidence to go to the docs if positive, as I feel like they always like to fob you off with excuses.

First I have been to the docs so many times complaining of fatigue and low energy and each time they test its anaemia and vitamin d deficiency, anaemia due to heavy periods, but I have been on and off iron for about ten years now, it's never seems to end. Anyway that was that. Then a couple of years ago I. Went to the docs complaining of severe cramps and pain during intercourse, 'it must be endometriosis' they said, no diagnosis just a guess. I accepted that and carried on enduring the pain, and still do today, as I didn't want to use birth control, which they say calms the symptoms, as we were hoping to try for another baby. I suffer with constipation a LOT - no diarrhoea tho! My hands and feet go numb quite a lot, mainly at night time, I feel quite down a lot (I put that down to the anaemia) and lastly, I have just totally skipped a period which has never happened before, and has obviously happened for a reason,,,,and I am 100% not pregnant, so when I sat and put it all together, along with Google of course :-/ celiac disease is what I came up with. 

does this sound like celiac to you? What were your symptoms? What made you get tested? 

Thanks x

1 like, 23 replies

23 Replies

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  • ellymay87
    ellymay87 nicky65646

    Posted

    I had quite different symtoms Nicky, i was originally told i had IBS as i had constant upset stomachs that were sometimes so servere i couldnt go work, i would get quite bloated and have stomach cramps, but each time they put it down to IBS. The only time my doctor actually took it more seriously was when I went in with a painful sinus infection, dizziness and i had massive ulcers on the inside of my cheeks..he literally stood up straight away took one look in my mouth and referred me to hospital to have the camera down my throat!

    Since then i get regular sinus problems and have been signed off with servere dizziness twice (vertigo).

    Have you tried different foods to see if anything triggers these symptoms in you? Like certain things will literally have me throwing up within 30 minutes!

    I have been told i have anemia before as i have a tendency to pass out randomly..but i also have low blood pressure which doesnt help i guess!

    Its a tough one tho as CD has sooo many different symptoms and links!

    X

    • nicky65646
      nicky65646 ellymay87

      Posted

      Hi

      Thanks for replying.

      I thought it could be IBS that i have too, as the stomche cramps i get are really bad, almost like labour pains :-/ although they dont usually last any longer than 30 minutes and do seem to ease after i go to the toilet (sorry) but it wasnt untill u googled my symptoms (i know bad :-/) and saw the numbness, anaemia etc and started putting 2 and 2 together,,,,but i dunno. Guess I will have to ask the doc, although i am still going to do a home test, do you kow if they are anty good?

      The only thing i really noticed sets off the horrible cramping is chocolate, not all the time tho.

      x

    • ellymay87
      ellymay87 nicky65646

      Posted

      I'm not sure about home tests i dont really know anyone thats used one? Let me know if you do!

      You need to be really persistant with the docs, took years for me to get referred and i was at the docs alot ha! Oh and surely the doc suggesting you have Endometriosis needs checking? He cant just throw that out there!

      Xx

    • nicky65646
      nicky65646 ellymay87

      Posted

      well with the endometriosis, i got referred to a gynae consultant who checked my ultrasound scan and couldnt see anything, suggested I had been imagining the pain, then couldnt find any other suggestion and said oh it must be endometriosis. She said the only treatment would be contraceptive pill but at that time we had been wanting antother baby so i said i wasnt keen and she basically said tough! and that was the end of that! Hence why i am hesistant to go to docs for help lol x
    • ellymay87
      ellymay87 nicky65646

      Posted

      I completely understand!! My doctor still doesnt understand my condition and what can come with it!

      Have you thought about seeing a different doctor? Xx

    • nicky65646
      nicky65646 ellymay87

      Posted

      funnily enough i have recently moved area, new doc etc. but i dunno, it makes me feel really uneasy going to the doctors lol.

      Do you feel better having had a diagnosis? Sometimes it drives me mad having all these symptoms and nothing to put it down to x

    • ellymay87
      ellymay87 nicky65646

      Posted

      Erm it certainly helped knowing what caused the problems i was having but its been hard! Ive known its that for about 4/5 years and sonce then ive struggled to be strictly gluten free so ive had a few bad moments because of really wanting to eat something i shouldnt!!

      Theres a lot that comes with it too...i was supposed to have a bone scan but didnt go 🙈 and im currently waiting for my doctor to decide if i have developed dermatitus Herpitiformus triggered by my CD and this has depressed me! Clearly my own fault for not being good with my diet, but i cant handle the rash/blister sores i currently have all over me!! So as much as its good to know i now hate it!!! Ha. Plus i seem to be the only one in my family with it..which is apparently unusual as its usually passed on! Sooo unlucky lol X

    • nicky65646
      nicky65646 ellymay87

      Posted

      I can imagine its so hard to deal with.

      Cant you rebook for the bone scan,,,,you should go.

      How are he rash/sores treated? just by following a strict gluten free diet?

      x

    • ellymay87
      ellymay87 nicky65646

      Posted

      Im not really sure tbh its a whole new ball game this rash..ive been under alot of stress lately too so think thats not helped. So im back to strictly gluten free and limiting my dairy intake too atm aswell as lots of multi vitamins oh and a few sun bed sessions to try and stop the rash. If it is DH then i will need some tablets to take for a while i think to get it under control.

      You definetly need to get yourself sorted..maybe keep like a food diary and add when you get any pains etc..that way you can show your doc and they may be able to understand it a little bit more x

  • paul76280
    paul76280 nicky65646

    Posted

    Hi Nicky

    I went to doc. because I lacked energy. I was diagnosed with aenemia. Then had a gastroscomy to check for bleeding. I am am male. They took a biopsy and discovered that I had coeliac disease.  I had no other symptoms. I have been gluten free for about 12months now and feel so much better.

    If I were you I would insist that I was checked for Coeliac. I understand that the only sure way is to have a biopsy as I did. Kick a few doors down! Good Luck

    • nicky65646
      nicky65646 paul76280

      Posted

      Yes i have the bleeding too,,,sorry for being dumb but, with number 2??

      I hate going to the docs though they make you feel so silly sometimes. Like when the consultant asked me if i was imagining the pain because they didnt find anything on an ultrasound scan!

      But yes I think I will have to suck it up and see the doc.

      Thanks for your advice c

    • paul76280
      paul76280 nicky65646

      Posted

      I had no actual bleeding Nicky - but blood tests indicated that I was lacking in iron and vit D. [symptoms of aenemia] I am not medically trained but, I believe it's something to do with the bowel not being able to absorb stuff properly.

      Don't worry about having a gastroscomy but make sure that you insist on having sedation and a throat spray [they never offer you both] and you won't even notice it!

      If your doc. won't sort you out, then insist on a second or third opinion. Sometimes you've got to be really firm!

    • nicky65646
      nicky65646 paul76280

      Posted

      thankyou so much for your advice, i could be barking up the wrong tree entirely but i just seem to fit the symptoms. thanks again x
  • nicky65646
    nicky65646

    Posted

    Well, this morning all i have had is 2 cups of tea and a choc chip cookie,,,,a massive choc chip cookie lol...and i can feel it starting up already. Tried to get an appt at the docs, but suprise supsrise, no appointments, Will try again later. And ill update you with the outcome, Thanks again for your advice x
  • paul76280
    paul76280 nicky65646

    Posted

    Nicky

    You've really got to help yourself. Bang on the doctors door until you do get an appointment or go to a walk in centre. Ask to see any doctor in your practice.

    In the meantime stick to a gluten free diet and see if it makes a diference.There's no need to give up "treats".

    Gluten free bread is generally yugh! - but gluten frree biscuits Tesco and Waitrose and cakes M and S are really good.

    Coeliac society has useful lists of stockists and recipes etc. In fact there's very litle for which a gluten free alternative is not available. I miss beer, but there are worse things in live than having to drink wine, whisky or cider instead!

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