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

Endoscopy Biopsy Results Negative For Celia Disease


Rudi

Recommended Posts

Rudi Newbie

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!


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



Celiac.com Sponsor (A8-M):



Mtndog Collaborator

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!

OptimisticMom42 Apprentice

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

elye Community Regular

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!

gf-soph Apprentice

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.

ang1e0251 Contributor

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.

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. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,131
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.