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

Blood Test Advice?


SpiralArrow

Recommended Posts

SpiralArrow Rookie

I'm new here, so hello everyone. :) I have a question regarding blood testing.

I thought I would really have to fight for my doctor to take me seriously because she has a habit of trying to pass off any health problem as a "virus". But as soon as I started describing some of my symptoms (white bits/mucus in stools, brain fog, insomnia, uncomfortable bloating and constipation after eating certain foods, tingling limbs, bruising easily, etc) she suggested food allergies, Celiac Disease being her first thought. So I'm booked in for a blood test next week, but I'm a little bit confused. I asked her whether or not I should carry on eating gluten, or start cutting it out now before the test, and she said I could stop eating gluten and that it wouldn't affect the test results. She then went on the say that it was the "old" testing for Celiac (the biopsy) that was affected if a person was already on a gluten free diet.

Is what my doctor saying true? I was under the impression that starting a gluten free diet before testing did effect results, and that a biopsy would still be needed and is a common modern procedure.

I'm anxious about getting the results as well. The thought of the possibility of losing my favorite foods is upsetting, but I'm actually more worried that I'll get a negative test! If I do have gluten Intolerance, I'd much rather feel fit and healthy by changing my lifestyle and diet than it be something more serious. My doctor said that if gluten isn't the culprit, that it's "probably just IBS." But reading around, I've seen many cases where people who are intolerant of gluten get false negative tests and end up being branded with IBS instead.

I just really hope I can have a clear diagnosis. I'm a 21 year old female who exercises regularly, drinks plenty of water, tries to eat well and takes multivitamins and omega 3. Yet on most days I feel ill, run down and depressed. I opted to carry on eating gluten for now until my blood test, and right now I'm sitting here in a stupor with a swollen tummy, and all I want to do is curl up and go to sleep. All I've eating today is a banana and a bowl of cereal. A few days ago I was feeling so sick I tried going gluten-free for a day or two just out of curiosity, and lo and behold, I actually had energy to get up for the day. My stomach settled down and the following morning I passed a very healthy NORMAL looking stool. (Sorry about that!)

Anyway, thanks for reading, any advice would be appreciated.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

You do need to continue eating gluten for all celiac testing, whether blood work or endosoopy/biopsy. You risk screwing up the test results if you stop eating gluten before the tests. And don't accept the "it's just IBS" diagnosis. Something is making your bowel irritable and you want to find out what it is.

Doctors (and researchers) are only just coming to the diagnosis of non-celiac gluten intolerance, where you "fail" the tests for celiac, but have all the symptoms and a gluten free diet makes you better. So do not get too hung up on the diagnosis (although it is nice to have if you can get it). But if you can't, try the diet anyway and ou may be very surprised at the results. The fact that you had a positive experience with one day gluten free would seem to indicate that gluten is your problem. :)

By the way, forgetting my manners, welcome to the board :D

SpiralArrow Rookie

Thank you for the reply and the welcome mushroom. :lol: I'm glad I asked, I had a feeling my doctor was giving me the wrong advice, which is a bit worrying. I've been eating how I normally would the past couple of days and I've been feeling very ill. I'm not sure how long I can keep doing this to myself, especially when I know how I could make myself feel better! I hope a diagnosis doesn't take a long time.

ravenwoodglass Mentor

Welcome to the board. Yes do keep eating gluten until your testing is done. If you are having the biopsy keep on gluten until the day they do it. After your blood tests and biopsy are done you can start of a trial of the diet. You don't need to wait for the biopsy results. Since false negatives rates are pretty high stay on the diet strictly for a while to see if it helps no matter what the test results are.

Read as much here as you can while you are waiting on the testing. The gluten free lifestyle takes some getting used to but it is very doable. If you have any more questions do feel free to ask.

sreese68 Enthusiast

You have gotten good advice on the test already. I had negative bloodwork, but my neurologist told me that I NEEDED to go gluten-free for awhile to see if I responded to the diet. I really wish I had eaten ALL of my favorite gluten-filled foods one last time before going on the diet because I know now I can never have them again. I would have savored every last bit! I guess I was in a little denial that celiac really was my problem.

OK, I took a minute there to think about Little Debbie's snack cakes

  • 2 weeks later...
SpiralArrow Rookie

Thanks again for the replies. :)

I really wish I had eaten ALL of my favorite gluten-filled foods one last time before going on the diet because I know now I can never have them again. I would have savored every last bit! I guess I was in a little denial that celiac really was my problem.

I sort of did this. I carried on eating what I considered a healthy normal diet, but threw in a takeaway or two, some pizza and my favourite muffins! The discomfort was worth it. Well, in some cases. I actually got so sick after a few days of doing this I had to have some gluten free meals just to clear out my body.

Does anyone know how long the results will take? Because it's been a week, so I rang my practice yesterday and the receptionist told me that as well as the gluten test, my liver, kidneys, protein levels, thyroid and blood count were also checked. According to her my kidneys, thyroid and protein levels were normal, but the overly polite lady paused when telling me my blood count and liver. "They're... okay.. I don't think it's anything to worry about.." And my gluten test isn't back from the lab yet. I was told it would take a week, but I've seen a few people say the antibody test takes up to two weeks? I hate all this waiting around. I want to start the gluten free diet regardless of results asap, because I think I'm driving my household crazy.

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. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,076
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.