Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
Rudi

Endoscopy Biopsy Results Negative For Celia Disease

Rate this topic

Recommended Posts

I spoke to my wife's GI doctor's nurse and she informed me that my wife's endoscopy biopsy results were back, she said the following:

1. NEGATIVE for Celiac Disease

2. H-pylori positive - bacteria in my wife's stomach

The bacteria she believes may be the causing my wife's problems in her digestive system: she has been experiencing GAS, BLOATING, SEVERE STOMACH CRAMPS, diahrea, anxiety, feelings of vomiting, etc.

On Friday, we decided to go gluten free and eat only products that are gluten free. Prior to Friday my wife was only eating soup everyday adn that was even making her sick and aggravating her symptoms...since we switched to Gluten Free on friday and over the weekend we purchased gluten-free foods from Whole Foods...she has been feeling better, her symptoms gone and she has been sleeping better. Today, she went to work and she informed me that after eating her lunch (gluten-free soup, meat, and tortillas, and ginger ale) she has been feeling great.

I told the nurse that she has switched to gluten-free diet and that her symptoms are better and she is feeling better, and the nurse said that she can continue on the gluten-free diet if it helps.

My wife is going to be given 2 antiobiotics and an anti-acid med to get rid of the bacteria...I'm disappointed that the nurse just discounted celiac disease so quickly or didn't even dig deeper into whether she may be gluten intolerant...

Has anybody here had a endoscopy and biopsy that came back negative but is gluten intolerant or still may be at risk for celiac disease? Any advice on what other tests we can do or what we should do now?

Thanks in advance!

Share this post


Link to post
Share on other sites

Hi- I hope the medications for H Pylori help your wife soon! That can cause a lot of really uncomfortable symptoms.

I saw 2 GI's before I got a diagnosis. The first one did the biopsy (he took ONE tissue sample- yeah, that will tell you a lot) from a huge organ! Then since that biopsy was negative he told me it was all in my head.

The second GI was wonderful- I told her about my biopsy results but how sick gluten made me so she decided that rather than torture me with a gluten challenge, she would just test me gentically. I came back positive for one of the two "recognized" celiac genes (HLA DQ8) and she diagnosed me based on my symptoms and the gene.

Looking back, I'm not sure why I was so determined to get a firm diagnosis because I was going to remain gluten-free no matter what. I guess I just wanted confirmation.

I think that there are probably a lot of people out there who have negative biopsies and truly do have celiac or cannot tolerate gluten. As far as I'm concerned, if it makes you feel better and helps your health, do it!

Share this post


Link to post
Share on other sites

My dr. didn't run any of the recognised tests. After being told I was allergic to wheat and barley, I removed them from my diet. I have never liked rye so it wasn't an issue but oatmeal was. So I went back to the dr. and described my reaction to oats. He diagnosed celiacs then.

He never even suggested that I have testing done. If gluten makes you sick you have celiacs. If not eating gluten makes your wife feel better .......... :)

Nobody needs gluten to live.

RA

Share this post


Link to post
Share on other sites

Hi, Rudi, and welcome! :)

My husband had the classic symptoms of gluten trouble (horrid gas, bloating, cramps, trouble sleeping) for the twenty years that I knew him before he had the celiac blood panel and endoscope done. Both were "negative". He decided to splurge and get the stool testing done through Enterolab, and there, suddenly, were the antibodies.......lots of them. There was also a lot of fat in the stool, another strong indicator of malabsorption issues.

He then gave up gluten completely, and all of his symptoms were gone in a month.

You don't need a doctor's prescription or permission to go gluten-free. Were I your wife, I would stay on the diet and embrace a new, healthy, strong life!

Share this post


Link to post
Share on other sites

Hi Rudi

My diagnostic experience was not a good one. I started having intermittent GI problems in 2005, which became severe in 2007, I could only eat about 4 foods that wouldn't make me sick etc (all gluten free foods!). I returned positive celiac blood work, but a negative biopsy. My gastroenterologist told me flatly that gluten wasn't the cause of my problems, and not to bother cutting out gluten. I was too sick to think to look into it further, and just tried to live with my IBS 'diagnosis'. I continued eating gluten for another YEAR before a chance meeting with a GP (general practitioner), who looked at my blood work and symptoms and told me immediately that I had to go gluten free if I wanted to get better.

I am an example of how non-celiac gluten sensitivity can still cause substantial symptoms - iron and B12 malabsorbtion, weight loss, severe pain, constant gastric problems etc.

As others have said - if your wife feels better on the gluten free diet that is telling you something. A negative biopsy doesn't mean it's not worthwhile sticking to the diet, and your early results indicate it may be exactly what your wife needs. Unfortunately a lot of medical practitioners don't understand celiac properly, let alone gluten sensitivity.

Best wishes for your wife's recovery - you've found a great source of information to help her adjust to the gluten-free lifestyle.

Share this post


Link to post
Share on other sites

Well, first I would stay on a diet that makes me feel good (that's what I did), second, I would ask for copies of the blood work and biopsy. Sometimes the interpretation of the results can vary from dr to dr. Post the results here. There are some knowledgable people who can give you an opinion.

There are plenty of stories of people who had negative biopsies but benefited from a gluten-free diet. The dietary response is a huge part of the puzzle. There is just no denying the cause and effect.

By the way, make sure she is eating yogurt every day she has antibiotics. That will help her gut keep the good flora and fauna so she doesn't have another digestive issue down the road.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Top Posters +

  • Upcoming Events

    • February 27, 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 
       
  • Member Statistics

    • Total Members
      86,544
    • Most Online
      4,125

    Newest Member
    AlyssaAnn22
    Joined
  • Forum Statistics

    • Total Topics
      111,814
    • Total Posts
      955,907
  • Who's Online (See full list)

    There are no registered users currently online

  • Forum Discussions

    Thank you GFinDC. Question. When you say, "quick rinse", can you define what is safe for us to use when washing our fruits and veggies? I know that might sound like something I should know but I am seriously taking no chances (at least not on purpose). I've been buying organic produce because I was told I needed to. Do you find that to be true or do I need to find a new nutritionist? 😉
    Hi Wade, You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.
    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
  • Blog Entries

  • Blog Statistics

    • Total Blogs
      1,158
    • Total Entries
      2,010
×