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

Frustrated Of Waiting!

Brownie88

Recommended Posts

Brownie88 Newbie
Brownie88
Posted

Hi all.

I am a 23 year old female from Australia. I never thought I would be dealing with the possibility of coeliac (celiac) disease and am currently awaiting the results of my biospy which is taking forever!!! I just want to know how long it takes to get your results? I have been waiting for three weeks and am waiting to hear back from the doctor's office today as to when my appointment is (I thought it was today but it is not :( ) I want to know if anyone thinks I will get positive results. What happens if it is negative? And if you think my symptoms describe coeliac?

It all started last November when my partner and I made a big move across the country (about 37km away from home). I was probably eating the most unhealthy foods I have ever had as we drove for four days and then the unpacking, I was eating lots of takeaway and gluten foods. A few weeks after arrvial I began to feel nauseous, and sufferred from stomach cramps, fatigue, constipation and then later diarrhea. And I improved my diet, opting for healthier foods but was still sick.

My first visit to the doctor was in about Feb. and my doctor attempted to diagnose me with IBS and gave my some horrible medication that made me feel like the walking dead. So I went back weeks later and he decided to test me for Coeliac. I must say I was completely shocked (and so was he) that the results were positive. Especially since my regular diet consists of less gluten than the average person as I eat little bread and always choose rice over pasta as that is my preference.

I booked in for my biopsy in April but had to cancel due to my asthma, which has never really been problem, got really bad that I was coughing way to much to undergo the procedure. I was relieved though as my surgeon was very rude and impatient to the point of inappropriate. Also, he told me that my blood results were low so he did not think I was coeliac but still ordered a biopsy. I then waited till I felt better and my asthma treatment was working, I booked with a new doctor, knowing it would take longer - this was about 3 months later.

I had cut down on gluten for about 3 weeks (which was wrong but I was over it) and as soon as I was booked in for my procedure, I decided to begin the horrid, "gluten challenge" - approx 6 weeks leading up to the procedure. Two days before my procedure I was the sickest I have been, stomach cramps, nauseous, diarrhea - so I didn't eat that day. I also experienced severe pain in my knees - they were just aching.

I had two biopsies taken from my stomach and after the procedure I continued eating gluten for 5 days and it was unbearable. My doctor hadn't told me whether I could be gluten-free and was worried I might need more tests. So I did some research and saw others had gone gluten-free straight after, so I did. Three weeks later, I am feeling much better... I do not feel completely recovered but I feel like I have started the journey to full recovery.

I am worried I have not done enough to get a positive result. I just want answers and am hoping I can get a diagnosis and move on to live a healthy life again.

Also, I think what triggered the Coeliac is that I visited Malaysia and ended up with Traveller's Diarrhea and last year visited Thailand only to get ill over there too.

I feel like I have been waiting forever and am scared that I will get a negative result even though I feel like a am coeliac.

Thanks for reading my essay lol. Sorry it is so long.

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

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

Ok, first of all, you have celiac disease. Your biopsy may or may not show it, but it doesn't matter. Positive bloodwork and a positive response to the gluten-free diet is sufficient to dx yourself. Biopsies are always hit and miss. Sometimes they hit the right spot, sometimes they don't. Unless your GI took multiple (as in 6+ samples) from the duodenal bulb (not the stomach) then chances are good he missed it. Honestly, even weakly positive bloods are a better indication. False positive celiac bloods are almost non-existant. They just don't happen. Its like being "a little bit pregnant." Your travels and diet change probably triggered the disease, and since it was a recent development, the antibody levels would not have had time to get very high. The good news is you probably caught this disease in the beginning, before it devastated your gut. Which is another reason your biopsy may be negative- you likely don't have severe damage yet. That is a good thing.

So, my advice to you is decide you are celiac, accept it, and continue on the path to good health. And whenever your doc gets around to sending you a biopsy report, if it confirms this.comm tuck it away in your medical records. If it doesn't, toss it in the trash and disregard it. Your body told you the truth already, whether the doctor heard it or not.

Brownie88 Newbie
Brownie88
Posted
  • Author

Thanks for your reply. It makes me feel better about my decision to become gluten-free.

I do hope for the positive diagnosis though (maybe more for other people to recognise it), if it is negative am I still able to class myself as Celiac because of the positive blood test?

Because you cannot be a little bit Celiac.

Yeah I will absolutely tear that the biopsy report to pieces if it comes out negative I think!

That is if I ever get to see it.

Brownie88 Newbie
Brownie88
Posted
  • Author

oops just realised I wrote 37km away from home instead of 37 hours lol... It is actually about 3,000km away from home lol my bad.

1desperateladysaved Proficient
1desperateladysaved
Posted

I can relate to waiting for results. I didn't want to have celiac, but I was hoping I would, so that I could do something about my problems. I received my result by e-mail. I stared at the monitor and caught my breath when it finally arrived.

I hoping your results will be accurate and that you will receive them soon.

Diana

MitziG Enthusiast
MitziG
Posted

Yes, you can call yourself celiac, because you are. And you do not need to offer an explanation to friends and family to justify it. Just say "I have celiac." If the biopsy is negative, no need to disclose that. People will just second guess your decision and constantly try to talk you into eating gluten. Spare yourself that scenario. You ARE celiac. Biopsies are not the be all and end all in diagnosis.

kittty Contributor
kittty
Posted

oops just realised I wrote 37km away from home instead of 37 hours lol... It is actually about 3,000km away from home lol my bad.

I thought you were just a slow driver ;)

Were you under a lot of stress before and during the move? I think stress can trigger a celiac response if you are genetically predisposed to it. That could have been what set you off.

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

Celiac.com Sponsor (A8-M):


Brownie88 Newbie
Brownie88
Posted
  • Author

I can relate to waiting for results. I didn't want to have celiac, but I was hoping I would, so that I could do something about my problems. I received my result by e-mail. I stared at the monitor and caught my breath when it finally arrived.

I hoping your results will be accurate and that you will receive them soon.

Diana

Yeah I feel the same way.. I never would have wanted it but if it means being healthy again then I am more than happy to say goodbye to gluten. Thanks Diana.

Yes, you can call yourself celiac, because you are. And you do not need to offer an explanation to friends and family to justify it. Just say "I have celiac." If the biopsy is negative, no need to disclose that. People will just second guess your decision and constantly try to talk you into eating gluten. Spare yourself that scenario. You ARE celiac. Biopsies are not the be all and end all in diagnosis.

Ok I have Celiac, from now on that is what I am.

I will not let myself be "food bullied", will not stop it from getting on my nerves though. I know a lot of people struggle with this and other people understanding the consequences of celiacs eating gluten.

Thanks MitziG.

I thought you were just a slow driver ;)

Were you under a lot of stress before and during the move? I think stress can trigger a celiac response if you are genetically predisposed to it. That could have been what set you off.

Haha.. nah not that slow.

Yes it was very stressful. We moved because my partner got a job. I had to leave my job of 7 years and had some interviews set up but nothing in stone. I had never been to the town we moved to, we didn't know anyone and the 4 day drive was a stress and a half! Lots of car issues.

But you are probably right. I was very stressed at the time it started and I do suffer from anxiety.

  • 1 month later...
Brownie88 Newbie
Brownie88
Posted
  • Author

Hi Everyone, I wanted to get back to you with my results but have been travelling and just haven't gotten around to it. My endoscopy results came back positive and I feel sooo relieved to say with total certainity I am celiac. I have been gluten free for about 10 weeks and feel heaps better. Thanks for your help :)

1desperateladysaved Proficient
1desperateladysaved
Posted

Thanks for reporting back. I am glad for a definative diagnosis. Sorry that you have been incovenienced by this. Hopefull, you are now recovering well.

Diana

GottaSki Mentor
GottaSki
Posted

I'm glad your results were clear - it does alleviate continued frustration from lingering questions .

Outstanding news that you are already feeling better - thanks for sharing :)

Archived

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

Go to topic listing
  • 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
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      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
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      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
      Insomnia help

      By nanny marley · Posted

      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
      nothing has changed

      By nanny marley · Posted

      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
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      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.