Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

BallardWA

All Tests Negative?!

Rate this topic

Recommended Posts

I heard from my doctor on Friday, and have found out that all my tests (celiac, gliaden, allergy) have come back negative, BUT - he says- that does not mean that I am not allergic to wheat! Great. Now what? I have been gluten free for 8 weeks, and with a few setbacks, have to say that my symptoms (serious stomach pain, acid reflux) have pretty much cleared up. Dare I eat bread? Has anyone else had all negative tests? If so, what good are they? They cost over $1,000. It seems that everyone agrees that the serum celiac test is useless, but the allergy panel, too?

Any input would be appreciated.

Share this post


Link to post
Share on other sites

Did you have the testing done AFTER you were gluten-free for a few weeks? If the answer is yes, then the testing was utterly useless and doesn't mean a thing. Because for the test results to be valid, you have to be eating gluten every day, and can't start the diet until after the blood is drawn.

It seems to me that your results are false negatives. What a waste of money! At least your doctor is partially right. Just because your test results were negative doesn't mean that you don't have celiac disease.

That your health problems are clearing up on the gluten-free diet really is all the proof you need. Keep up with the gluten-free diet, obviously you can't tolerate gluten.

So, no, please do yourself a favour and don't eat regular bread.

Since celiac disease isn't an allergy, allergy testing is useless for a gluten intolerance.

Share this post


Link to post
Share on other sites
Has anyone else had all negative tests? If so, what good are they?

Yup. Over and over. But no doctor ever suggested the diet. Up to 30% of us will have negative blood tests, even if almost dead.

Go with your gut.

Share this post


Link to post
Share on other sites

This is a timely thread, as I just posted yesterday about my husband, who just had a high level of the three gluten antibodies detected in his stool, along with an excessively high fecal fat count, through the Enterolab fecal test. This is after a "very negative" blood panel result, and "negative" biopsy findings. Next to dietary response, which I believe is the most accurate diagnotic tool around, the stool test is probably the most accurate of the tests that can be run to detect gluten intolerance.

Share this post


Link to post
Share on other sites

Did you have the testing done AFTER you were gluten-free for a few weeks?

YES- I was gluten-free for six weeks before the blood draw because the first sample got lost!

The doctor insisted that he could still tell if I was gluten intolerant because it takes much longer for the antibodies to leave the blood - huh? Maybe I am being taken for a ride. This is a very frustrating process, and I can't understand why there is no concrete way to diagnose this thing (other than the wait-and-see variety).

Share this post


Link to post
Share on other sites

I also got a negative celiac panel after being off wheat for 6 weeks, but definitely felt a lot better. It really threw me for a loop. However, I had also ordered a blood test from A.L.C.A.T (you can look them up on line, but if you spell it out here without the dots it will get changed .. ), when I'd been off wheat for 2 weeks. I showed sensitive to gluten, casien and candida, as well as about 50 foods. Now i'm on the elimination diet from hell . ..

Anyways, if you doubt that going off wheat was responsible for your symptoms, you could always eat a piece of bread and see what happens - I read one woman said she didnt believe she had problems after all, so she went out for pizza, and was so sick that night she's been gluten free ever since!

Everyone raves about the enterolabs test - it may be more accurate than the one I took, but mine tested for more different foods and didnt involve poo . . . lol

Share this post


Link to post
Share on other sites

Your doc is so wrong. You have to be eating gluten for those tests to show anything. You'll have to eat gluten and get tested or you could get a stool test through Enterolabs which you can be gluten free for. Do you feel better gluten free? That may be enough answer for you. You could try it again and see if you have a reaction.

Share this post


Link to post
Share on other sites
Your doc is so wrong. You have to be eating gluten for those tests to show anything. You'll have to eat gluten and get tested or you could get a stool test through Enterolabs which you can be gluten free for. Do you feel better gluten free? That may be enough answer for you. You could try it again and see if you have a reaction.

You would have to be eating gluten for at least six weeks, is my understanding. It's not worth it. I'm not diagnosed, I had a negative biopsy too. But If you feel better, do you really need a test?

Share this post


Link to post
Share on other sites

Hi there,

All my tests are always negative as well. I've had the small bowel biopsy twice now, the blood tests, the allergy test. Always negative. Unfortunately, no-one told me that didn't mean I wasn't Celiac. That lead me to misundertstand, and eat glutens whenever I was "better', and then get sick again. What I finally learned is that I have to eat the glutens for 6 weeks to 2 months before the tests to get positive results on them (my doctors told me 1 to 2 weeks but the Celiac assocation informed me that a min of 6 weeks). I cannot do that cause I will be too sick.

So I'm learning to accept that I will never have a diagnosis from the doctors in my entire life, and that I am "self diagnosed". I had a hard time dealing with that. I am now past that though, and have accepted it. I have now gone gluten free for the rest of my life, as I am too sick otherwise.

Take good care of youself, and if you know they make you sick, stay away from them.

Best wishes, Janet

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
What are your iron results?  Was ferritin (iron stores) taken?  Are you actually anemic (low hemoglobin)?  The results you posted are your Immunoglobulins.  Looks like your IgE is high, but then it is Spring and allergy season is supposed to be pretty bad this year (at least in the US).  What riggers your allergies (e.g. cats, horses, mold, etc.)? Have other autoimmune issues been ruled out that could cause tendinitis or vertigo?    
  • Blog Entries

  • ×
    ×
    • Create New...