Jump to content
  • 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 Our Content
    eNewsletter
    Donate

Mysterious symptoms don't know if it could be celiacs


Emilyeagleowl

Recommended Posts

Emilyeagleowl Newbie

Hi guys. 

I'm new here and I don't know what else to do but I can't go on like this. I have a  problem and I am wondering if anyone else has experienced this. In September I started to feel really sick and have a pain in the lower right side of my stomach. The Dr thought it was appendicitis and I was sent to A&E because the pain came on suddenly and escalated. It turned out not to be appendicitis, but they thought it was an ovarian cyst. It wasn't that either. I went to the DR recently because the pain is still there, I and I felt sick and like utter crap a lot of the time. I had a blood and stool test and it came back negative for several types of cancer and celiacs. However I have been keeping a food diary and the things that irritate my stomach most are bread, pasta, pastries which have gluten in them but other things don't make me feel sick at all. I read that you can still have celiacs and have a negative test result. Has anyone had this issue? I have noticed that I am tired all the time. I am usually tired in the winter and my mum bought me a sunlamp but its not helping; I also feel sick particularly after eating, my stomach hurts frequently  lower right hand side and I have tummy troubles (mostly pooping too much) . The funny thing is that the doctor asked me had I noticed I had lost weight without trying. I said no because my flatmate and I don't have scales in our house; but my jeans are getting loser and I am eating a lot of chocolate and carbs like pasta. I also have naturally sort of olive toned skin and my flatmate says I go pale and look sick. What do you guys think? Should I go back to the Drs after Christmas? Some of my  cousins have problems with gluten (and possibly my Dad and Granddad) so it's a possibility and I also tend to hurl after one pint of beer. It's really wrecking my life and can't carry on feeling this rubbish all the time. 

Thanks to any one who reads this. 

Emily


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Emily,

Welcome to the forum! :)

You may have celiac disease.  Do you know what tests were done for it?  Often the only test done is the ttg IgA, which is a common screening test.  But it is not the only antibody test available, and should not be considered definitive if there are symptoms that point to celiac disease.  The DGP IgA and DGP IgG antibody tests are also useful.  Sometimes people are only positive on one antibody test type.

Remember you have to keep eating gluten until all testing is done, which usually includes an endoscopy at some point.  There is also a gene test the can do but it only proves you have a possibility of developing celiac, not that you have celiac.

Ennis-TX Grand Master

I would say keep eating it at least a bit each day and go see about getting a full celiac panel done and ask about a endoscope and biopsy test.

Emilyeagleowl Newbie

Hi guys , 

Thank you for answering and thanks for the warm welcome ! I feel so much better that I'm not alone with this. And yes it was the ttg IgA antibodies test  and faecal cal protein. They were checking for cancers as well so I guess what that does make sense that they weren't looking for celiac as the main candidate. I would rather they rule out cancer first. I will carry on with my usual diet as suggested and I have been keeping a food diary and noting when I feel sick so hopefully that will convince the Dr. Did you guys have any joint pain? Like totally random, non-injury associated pain? 

GFinDC Veteran

Hi Emily,

I had joint pain years ago  that went away when I eliminated nightshades.  It took a month or more for the joint pain to go away though.  I had joint pain in both shoulders and both knees.  It wasn't related to injuries in anyway.  More recently I had joint pain return which improved when I upped my Vitamin D intake.  I've been gluten-free for 12 years now.  I also now have some joint pain in one shoulder I managed to injure, but that is definitely not diet related.

I have a brother who's a pain too, but that's life! :) 

  • 2 weeks later...
Emilyeagleowl Newbie

Thanks for the reply. Phew its probably just the damp, it's always just damp! Ha ha ha ha :D

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Seaperky replied to lizzie42's topic in Traveling with Celiac Disease
      2

      Trip to Anaheim/Disney

    2. - Churley replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    4. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,349
    • Most Online (within 30 mins)
      7,748

    Sarah S
    Newest Member
    Sarah S
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.