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

Should I Bother With Getting Tested?

TeresaB

Recommended Posts

TeresaB Newbie
TeresaB
Posted

Hello!

I am just wondering if I should even bother with getting tested. I started getting very ill a few times to the point of vomiting after eating wheat. I googled all my symptoms and decided to try going gluten free to see if I would start feeling better. I have been gluten free for 3 weeks now (although I have been accidentally glutened twice!) and I can't believe the difference!

I am 43 years old and was feeling so tired ALL the time it was pathetic. I constantly had achy legs, to the point of punching them just to make them feel better. ( not sure if that makes any sense) I had infertility issues in my 20's/30's and was diagnosed with PCO's. Luckily I have 2 beautiful daughters. I had severe gas every time I would eat. I have had a problem with memory loss and migraines!

Right now I am fighting my way through an accidental glutening and experiencing nausea, headache, constipation and fatigue!:-( this is day 2 and the last time this happened it lasted 3 days!:-(

I am just wondering if I need to go through the actual testing or not.

My favorite symptom to lose is my achy legs which when I would see my doctor about them, she told me that I was carrying my toxins there! Now I know my toxin is gluten! I truly feel like I have been poisoning myself!!!

I am also overweight in my mid section and I am hoping this will help shed some of that.

Thanks in advance for any and all advice!

T

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

Well, if you want to get tested, you have to go back to eating gluten NOW, and probably continue eating it for several months before you can be tested.

And then it may still be negative. You may have non-celiac gluten intolerance, not celiac.

Obviously, you know gluten is a problem for you- do you need a dr to agree with you?

Link to comment
Share on other sites
Razzle Dazzle Brazell Enthusiast
Razzle Dazzle Brazell
Posted

Hello!

I am just wondering if I should even bother with getting tested. I started getting very ill a few times to the point of vomiting after eating wheat. I googled all my symptoms and decided to try going gluten free to see if I would start feeling better. I have been gluten free for 3 weeks now (although I have been accidentally glutened twice!) and I can't believe the difference!

I am 43 years old and was feeling so tired ALL the time it was pathetic. I constantly had achy legs, to the point of punching them just to make them feel better. ( not sure if that makes any sense) I had infertility issues in my 20's/30's and was diagnosed with PCO's. Luckily I have 2 beautiful daughters. I had severe gas every time I would eat. I have had a problem with memory loss and migraines!

Right now I am fighting my way through an accidental glutening and experiencing nausea, headache, constipation and fatigue!:-( this is day 2 and the last time this happened it lasted 3 days!:-(

I am just wondering if I need to go through the actual testing or not.

My favorite symptom to lose is my achy legs which when I would see my doctor about them, she told me that I was carrying my toxins there! Now I know my toxin is gluten! I truly feel like I have been poisoning myself!!!

I am also overweight in my mid section and I am hoping this will help shed some of that.

Thanks in advance for any and all advice!

T

That I think is a very hard question. I myself am undergoing testing in large because I feel many of the members in my immediate family exhibit possible signs of celiac but maybe wouldnt accept their risk even if i were diagnosed.

Because it has a clear genetic link, your daughters could be at risk. You may find getting tested not worth your while (as far as you're concerned) because you will more than likely recognize symptoms of gluten intolerance in your girls. I will however remind you that not everyones symptoms are the same and damage can occur before seeing obvious symptoms.

Simply in regards to your health, it maybe helpful to know whether you are celiac if you are concerned about what possible damage has been done and for future preventative care for commonly caused health issues. and for doctors to maybe take you seriously the rest of your life when you are having problems :o Good Luck!

Link to comment
Share on other sites
banjos Newbie
banjos
Posted

hi there. i had the blood test panel done and it came back mildly positive but my endoscopy was negative. i have responded so well to being gluten free and have been glutened twice since going gluten-free and it is awful. my symptoms last about three days as well.

so basically for me i am not diagnosed as having celiac but i know that i simply cannot eat any gluten at all. i basically feel like i went through all of the testing for them to say that i don't have the disease but yet here i am thriving on being gluten free (and getting violently ill when i have eaten gluten) so that is enough for me to never eat it again.

in hindsight, i personally don't think i could handle going back on gluten just to get the testing done. but that is definitely something you have to decide for yourself. i would maybe opt for the genetic testing if possible instead of going through the trouble of eating gluten again for months on end.

good luck!

Link to comment
Share on other sites

Archived

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

Go to topic listing

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

      Lots of tests

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

      Lots of tests

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

      Lots of tests

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

      Lots of tests

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

      Would like to gain weight

      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 .
  • 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
      Lots of tests

      By plumbago · Posted

      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
      Lots of tests

      By trents · Posted

      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
      Lots of tests

      By Suzi374 · Posted

      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
      Lots of tests

      By Suzi374 · Posted

      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
      Would like to gain weight

      By Peace lily · Posted

      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...