Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Here For A Moan - Forgive Me


bev40

Recommended Posts

bev40 Rookie

hi

please forgive me, im just here for a moan.

I went to see the consultant for the results of my biopsy, not a very nice man, didn't have time for me, didnt want to listen to me, told me the biopsy was clear, i don't have coeliac but if i want to 'go away and look things up in books or do research myself on the internet then go away and do that and dont bother coming to see me'

Needless to say i was rather upset at his attitude, i had been feeling so well after coming off gluten and tried to tell him, after all i have been ill for 12 months now, he nade me feel like a complete idiot, like a hypochondriac who spends all days researching her aches and pains on the internet.

He did tell me that my parietal cell autoantibodies were very strong though, if anyone knows what that means, he says it indicates i have pernicous anaemia or B12 deficinecy, he ordered more blood tests but ive not had any results yet.

BUT..... the reason why i am here is because i have gone completey off the wagon re gluten, i am eating more or less anything and all my symptoms are back, the joint pain is horrendous, i have brain for and depression and i feel a total wreck!

I was doing so well and feeling absolutely fantastic, i had even lost 1 stone 9 lbs without trying. Now my stomach is bloated again like im five months pregnant and i have the worst stomach pains ever, ive also developed a terrible pain under my ribcage at the right hand side, just like a deep stitch. I feel a mess.

But i jus cant seem to get motivated again. The depression itself makes me want to eat then when i eat i feel depressed, the pain makes me want to eat, everything makes me want to eat!!!!!!!

Ive also developed a real craving for milk, i just cant get enough of it and am drinking it pint after pint although that too gives me a terrible pain like heartburn.

I dont know which way to turn, i refuse to go back to the doctors who just treat me like an idiot.

Ah well, i think thats enough moaning for now, im sorry guys, i know i should pull myself together and just go with my body and what feels right, just at the moment thats is easier said than done.

Thank you for taking the time to read :)

PS can anyone recomend any supplements i can take that may make me feel a little better or make things easier? Any advice gratefully received.

Thank you

BevX

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



plantime Contributor

Hi, Bev, welcome to the celiac board. I'm sorry your doc was such a pain. You felt better on a gluten-free diet, why do you need a doc's permission to stay on it? Many on the board remain gluten-free, regardless of what docs and tests said, and feel better for it. What you have done is a dietary challenge. Now, you know the gluten makes you sick, do you want to get better? Then stop eating the gluten, and show them all who was right!! :D

Link to comment
Share on other sites
Guest nini

So sorry the Dr. was a jerk... unfortunately many of us have experienced the same thing... mine was my OB/GYN telling me that the gluten-free diet was bad for my unborn baby and to go off of it since it was obviously all in my head... stupid me I listened to him and developed serious complications with my pregnancy, delivered my daughter 6 weeks pre term after severe Toxemia and emergency C-section. I very nearly died and so did my daughter... we were lucky we didn't. It wasn't until my daughter was 3 before I was accurately dx'ed (because I continued to eat gluten and continued to get sicker and sicker and sicker) my "gut" told me it was the gluten, but I didn't listen to it.

Please trust your "gut" and listen to it. I had good friends that kept telling me "you know it's the gluten, just go off it" I wish I'd listened to them. Ignore that stupid Dr. and accept that your dietary challenge has proved to you that you are gluten intolerant and that is all you need to know. Hindsight is 20/20 right? We need to be able to trust our instincts instead of relying on the medical community to confirm what we already know.

Link to comment
Share on other sites
Ursa Major Collaborator

Hi Bev, I agree totally with what's been said already. You need to get off the gluten and the dairy. Buy yourself some nice things (gluten-free of course) that you like, that you can eat whenever you feel like having gluteny things or dairy.

My doctors were so clueless, too. Fortunately, my family doctor believes me, but the dermatologist treated me like an idiot, too, he made me so mad and upset by his terrible putdown attitude.

But you know what? I decided I didn't care what he said, because he is a jerk, and I know what I know. I feel much better off gluten. And I get awful rashes when I eat it, and I don't when I won't. So, I am staying on the diet forever. And so should you!

Do you have anybody who will support you and stop you when they see you eating gluten or dairy? You need somebody who is physically closer to you then us here in Canada or the US to hold you to eating gluten-free.

Once you're over the withdrawal you will be fine. I wish you all the best!

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...