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

Tested Negative This Time?

diane64

Recommended Posts

diane64 Apprentice
diane64
Posted

I was tested in April (blood) for celiac and was told that I might have it. The gastroenterologist said I have celiac, even before the endoscopy. The endoscopy results were "unremarkable". I went to my regular dr for a physical and he retested me for celiac. The office just called and said that I DON'T have celiac. I am going back in on Aug 18 (earliest appointment available) to find out what could be going on. Until then I am told to eat gluten free foods.

Has anyone had an experience like this?

Since eating gluten free foods (almost a month), I have felt a little better.

thanks!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

That's good news that your test results were negative this time as it shows you are doing the diet strictly. A negative retest is what we are striving for. If you are not eating gluten you are not forming antibodies that are what the test is looking for. Stay on the diet, you were diagnosed and you have shown progress not only health wise but with the negative panel. Good for you and don't let the other doctor talk you out of your diagnosis.

iamgf Newbie
iamgf
Posted

I was tested in April (blood) for celiac and was told that I might have it. The gastroenterologist said I have celiac, even before the endoscopy. The endoscopy results were "unremarkable". I went to my regular dr for a physical and he retested me for celiac. The office just called and said that I DON'T have celiac. I am going back in on Aug 18 (earliest appointment available) to find out what could be going on. Until then I am told to eat gluten free foods.

Has anyone had an experience like this?

Since eating gluten free foods (almost a month), I have felt a little better.

thanks!

I agree. It sounds to me like you where diagnosed with Celiac, no need to retest unless you want to know that your efforts are paying off. Keep in mind that very few doctors understand Celiac Disease or the testing, and they certainly don't get the gluten-free diet.

There is a new book that will be a godsend for you. It is called, Real Life With Celiac Disease. I have read all of the other books and this is by far the best. It even has a chapter to help you understand the testing. You can Google the book title and find the best price online.

Keep us posted.

cassP Contributor
cassP
Posted

your GI is gonna know more about Celiac than your PCP (in theory)... so, continue with his word & the diet. but you should also get copies of your blood & endoscopy results from your GI- to keep in your own file- because this is a disease that the patient really has to learn all they can. the docs are a little behind on Celiac- so it's good for you to really wrap your brain around it and be a PRO.

diane64 Apprentice
diane64
Posted
  • Author

Thanks for all of the advice.

I called back again and explained that I was diagnosed with celiac, had an endoscopy and am gluten free. The woman who called with the test results did not know that. I am guessing that her job is to call with test results without the benefit of knowing the medical history of the patient! I asked her to check with the doctor on this and am waiting to hear back...

I am finding that I have to do a lot of research myself. How frustrating! It is great to know that I can learn from all of you!

Thanks!

I'll be checking that book out- sounds good!

IngridBeth Apprentice
IngridBeth
Posted

My blood tests were suppoedly negative as well (I haven't seen the actual results nor do I know the specific tests they did) BUT my doctor diagnosed me as "probably Celiac - certainly gluten inolerant" based on a number of other factors. I feel like his dx is plenty good enough - I am responding to gluten free diet and now learning I have to go dairy free (which is said might happen so I knew, but was in a bit of denial about that one I guess!). I will not have the biopsy because there is no way I will go back to eating gluten.

So, sometimes the tests are negative but as my doctors says, that can happen and be misleading. I agree to let other factors speak louder.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,539
    • Most Online (within 30 mins)
      7,748
    Josiemc
    Newest Member
    Josiemc
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
    • ElisaAllergiesgluten
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By ElisaAllergiesgluten · Posted

      Hello good afternoon, I was wondering if anyone has ever brought their anti-allergy pills? I have been wanting to use their Cetirizine HCI 10mg. They are called HealthA2Z and distributed by Allegiant Health.I’m also Asthmatic and these allergies are terrible for me but I also want to be sure they don’t have any sort of gluten compound.    I have tried calling them but to no avail. Has anyone ever used them? If so, did you had any problems or no problems at all?    thank you
×
×
  • 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.