Slowly but surely

So, last time I came on here, I was bombarded with confirmation that something was really not right. Since, I've been prescribed laxatives, anti-acids, cognitive behavioural therapy and been referred 'urgently' to a gastroenterologist. Which although the latter provide a huge sigh of relief, actually seen a little jumbled; laxatives for instance, most days, I do not need- more so the opposite! My step-mum was convinced I had an eating disorder and actually convinced my body that it was intolerant to gluten, which inconclusive tests only solidified her conspiracy- she's also convinced my dad of the same thing- then my doctor, who subsequently sent me for this therapy. When I went for my consultancy with the therapist, her ending words were 'from today, i don't think you really need to be here'. But still my family think I need it (apparently, they're health care professionals!). I did find out that my step-mum struggled with anorexia, could she be hung up on this? Hopefully my appointment with the gastro will back me up and will continue to make myself Ill with wheat to prove to everyone that I'm not just being stubborn and it's my in my head. However, if it doesn't, I will still talk to a dietician about being gluten free, as my symptoms are becoming so frequent that I'm having to adapt my life to them- I'm 18 an havent been clubbing, partying, because of 1) being too ill 2) fear of being embarrassingly ill at someone else's house! My college have been so brilliant and are letting me take an extra year, as my poor attendance doesn't match my potential and work ethic. It saddens me. What is everyone else's experiences with gastroenterologists? Im not quite sure what to expect. Oh, and also whilst I'm here- I've been speaking to Dr Stephen Wangen on Facebook, who's making me feel sane! I'd recommend his boil 'Healthier Without Wheat' if you haven't read it, it was enlightening! Oh, and one last thing... Has anyone else experienced a sore, aching roof of mouth? It happens only when I eat bread, I'm curios if it's just coincidence? Okay, so babble, babble, babble. Hoping to be joining the gluten free community very soon- my horoscopes say that im 'due the answers to those long unanswered questions, so fingers crossed. X

8 Replies

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  • Hi Abby, this is sad reading so I am very sorry. In my opinion and based on my experience all or most of the symptoms of CD are the same as stress and me I'm a bruiser and when I first started showing the symptoms of CD I was told that it was stress and I knew that this was cods wollop. And my trouble was I looked too well to have anything wrong with me!

    So I decided to take a step back and knew that in the fullness of time all would be revealed, 14 years later I went to give blood and they refused it as I was so anaemic and referred me to my GP. I'd moved house and wasn't registered with a GP so I had to register and on my first visit armed with the letter from the blood donor centre the new GP referred me to a gut specialist and they knew what was wrong with me straight away booked me in for an internal examination. I was diagnosed and everything changed and as my new GP said to me ''you're in the system now'' and boy was she right.

    Many of us have similar stories and it does sound as if your step mum has based her opinion on her experiences and you have to be strong to rise above this. You also have to be strong and believe in your self which isn't easy when you feel unwell. So my advice is to listen to 'your' body as only you know how you really feel.

    Try to think about the good points in your life, your college know that you are talented so try and focus on what you have going for you and take things one step at a time and then when you're ready things will fall into place.

    Lastly good luck with your appt with the gastro. And if you want moral support you've got it on here as the vast majority of GFG members will be able to relate to your story and feel empathy with you. You can chat about how you feel on here and not be ridiculed as you're obviously an intelligent articulate young lady and very sensitive which's all good in my book.

    Jerry.

  • Go well Abby my thoughts and wishes are with you. Good luck.

  • get well soon abby good luck i was diagnosed cd 2yrs ago x

  • Hope you get it all sorted asap Abby, sounds like a nightmare. Good luck and let us know how it goes!

  • You really are having a rough time Abby. It apears that you are unfortunately reacting to wheat which isnt your fault. Are you able to tolerate barley, oats, corn Trouble is with wheat when you stop it for a spell, it seems to make the reaction worse when re started. Digestive conditions are difficult to sort out and gps or gastroenteologist (after some so called negative tests} tend to think...all in the mind.....hence prescribe a low dose antidepressants hopeing this will help. What else can they do, when some of the condition still troublesome for you and them. Its rough for you to be troubled at your age. To get prescribed foods think coeliac disease has to be diagnosed. Remember you are not on your own, others have same treatment and reaction from doctors. All you can do is deal with condition as best you can. What triggers the condition is anyones guess. Better to be coeliac maybe than just wheat gluten intolerant. Have you had endoscopy test yet , that tends to show villi damage but depends on gluten intake. Take care Abby, remember you are doing your best to work out care that helps, dont let others blame you....they just dont understand. Hugs x

  • Since being wheat free I notice if I now accidentally have something I do get jaw ache and mouth ulcers!!

  • I'm touched by your replies and sincere support. Jerry, your story is both enlightening and eye-opening; 14 long years if pain is exactly the kind of thought that scares me, but also why I want to continue to push for answers and direction. A bruiser, eh? Well, me not so much, but what teen girl is nowadays. I also don't look unwell, a lot of time and am so grateful for my prospects that I find the motivation to pull myself out of bed and sit in classes when I've not got my head in a bucket. It is pants to think that if I gave into my symptoms, I'd probably be taken more seriously! I'm hoping asborne, that my gastro will end up with an endoscopy!! I did really cut it down for nearly a year and felt significantly better, although I still had dull aches and small amounts. Now I'm eating more, I struggle for a full week at college and could sleep forever! Also find that I can't eat dairy, oats or barely- which I was eating before. I'm fine with corn and most other things- I think! but then again, I'm not too sure, because I react quite sporadically.

    I do believe in myself and am normally great at standing my ground, but like you day- it's tough- when you're so ill and with important factors against you.

    let's hope the new year brings health, hope and happiness. Thanks for the support guys x

  • Abby Lovely to hear from you!

    Glad you're making slow progress - it's still progress remember! Ultimately don't worry about what anyone else things and just keep pushing for a diagnosis. Gastros can be good and bad. I'd recommend that you begin a short diary i.e. foods, activity and track what your symptoms are and pain levels. Then when you visit them you can at least talk through any common factors like foods or pains and easily describe them. The good thing is Gastros are a lot more clued up than GPs so either way they should give you a good examination and help rule out anything major. Do remember that although you need to eat gluten before a gluten free blood test that you don't have to make yourself ill doing it. So keep to a good few doses of bread, pasta, gluten drinks etc a week and your anti-bodies should still react if you are a coeliac. Also thyroid problems and pernicious anemia and a variety of other bowel problems can cause similar issues so do note to ask about these when you see someone.

    Your family are probably just worried about you and manifests in their varied opinions. Try to stay focused on being you and your medical appointment drawing near. It's no fun when you can't live life or college to the full but as very few things last forever be assured you'll get answers soon!

    Good luck and keep us posted.

    Fiona

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