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

Confused, Concerned


mmmaree

Recommended Posts

mmmaree Newbie

Hi,

I"ve just found this forum, after googling celiacs symptoms because i was experiencing excessive tiredness and stomach pains (AGAIN) after eating a bowl of pasta.

I wanted to get some advice on my symptoms and also ask to any Australians on the board how they found the diagnostic process (in Australia through medicare drs) and whether the dr treated them seriously? I only ask because i have been trying for many years to get a dx of my problems and to be frank i'm tired of it and don't want to go down a path only to be told im ''fine''. (and im not a hypocontriac going to the dr every other day, i mean i go to the dr every several months complaining about the SAME symptoms, they never go away , i just always give up trying to find answers after being seemingly ''dismissed'' many times over the years).

Here's a quick run down - am 30 y,o female.

Always had stomach problem, pain and diareah and at times very severe bloating (This has been a significant one of late). Thought it was IBS as I believe my grandmas has been diangosed and i know my mum suffers terribly even though she's never been checked out.

Seem to have lactose intolerance however at times the stomach problems persist despite abstaining from lactose. ALso sometimes I CAN eat lactose without problems.

Am ALWAYS tired. ALWAYS. have long history of depression and anxiety symptoms, that have been difficult to treat, not responsive to medication. Tiredness, mental fatigue, confusion, forgetfulness are all common symtoms i experience along with the typical feeling sad/hopeless and all that, and have always consistently been related to my depression and anxiety by more than one dr.

Have unexplained body pains. Last year my regular dr finally told me that i had fibromyalgia but i don't think she fully believed it despite treating me unsuccessfully for 12 years as i was recently discharged due to moving and she didn't write is as a condition on my discharge assessment. These pains have been present since childhood but increased in severity with age. As a child i had a lot of pain in my legs, and my parents told me it was cramps as my dad suffered. It was not until i was older that i was able to identify that it wasn't a muscle but a bone pain and my grandma had told me that she sometimes suffered shin splints which seemed to explain what i was experiencing (although neither of us however are ''elite'' althetes or do the level of physical exercise usually necessary to get shin-splints afaik)

Constant headache, back ache, shoulder ache, and many kinds of pain that often seems to be in joints (but no joint specifically sometimes knees, sometimes knuckles?) dr tested for arthritis and these persistent complaints were what instigated the fibromyalgia dx

Unexplained rash/alergy on hands that appeared when i was about 16, and comes back sporadically since then, is aggravated by certain things like detergents and stress, and seems to go away with a steroid cream.

Difficulty sleeping but ALWAYS tired. Lack of energy (may be related to the lack of sleep who knows)

DX low iron several times in my life, but also normal at times as well. Same with vitamin D. and this may be completely random but I take vitamin suppliments at different stages and it seems that i don't absorb them at all cause whenever i do my pee is fluorescent (im talking like a highlighter) yellow, throughout the day.

dry mouth, dry lips

constant need to go to the toilet to pee, even though at times there's actually hardly any ''there'' to go with (sorry hope that's not TMI). -was a bed wetter till quite a late age (talking early teens).

Probably way more symptoms that i can't think of right now.

Also when i was a baby i was diagnosed with failure to thrive I asked my mum years ago if she knew why i got it and she said no that don't know why you get that, which is how you end up with the vague diagnosis. i was hospitalized again around 9 months due to the condition until i started gaining wait again. Always very small child, and now a small adult. ALso as a kid i always remember having quite a distended (you might say) stomach, but not sure if this is just the 'look' of it from lack of fat.

OK so i would love opinion and advice on my next course of action. is it good to approach the dr and say i think i might have this? because in the past i have experienced dr's not seeming to like u doing their job for them. would it be best if i just went and told them my symptoms and hope they decide to test for it? i'm just really afraid they will brush them off and dismiss me like has happened many times in the past and i really would like to be tested. also don't have much money for a private consultation so would have to go public if possible.

I look forward to everyone's response :) ty


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Your symptoms seem like a pretty good match to me. There is a celiac support group in Australia that might be able to help. They would probably have a good idea about doctors that are good. There is some celiac research being done in Australia that is very interesting.

Open Original Shared Link

Hopefully some of the upside down people on the forum will come around and have more info. :)

mmmaree Newbie

Your symptoms seem like a pretty good match to me. There is a celiac support group in Australia that might be able to help. They would probably have a good idea about doctors that are good. There is some celiac research being done in Australia that is very interesting.

Open Original Shared Link

Hopefully some of the upside down people on the forum will come around and have more info. :)

thanks for your reply, i'll look into that group and try and get in to see a dr.

ravenwoodglass Mentor

thanks for your reply, i'll look into that group and try and get in to see a dr.

Do make sure you don't go gluten free until after all testing is done. Then do the diet strictly for at least a couple months no matter what the results. It would be a good idea for Mom and Grandmom to get tested also if they will.

MitziG Enthusiast

You sure sound like a celiac tto me! Don't be surprised if your dr doesn't agree though- they just aren't that knowledgeable about it!

I don't know how it works in Australia- but here in America, we can insist on what tests our drs perform (though drs don't always go along willingly, but if you are pushy enough, they will do it) since you have govt funded healthcare, I know that may not be the case for you.

So, TRY to get the tests, and a dx. But if you can't, by all means go gluten free in the end, because you definitely need to!

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

      Supplements for those Diagnosed with Celiac Disease

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

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • 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 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.