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:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    3. - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    4. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    5. - Aretaeus Cappadocia replied to Anne G's topic in Related Issues & Disorders
      2

      celiac disease and braces

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,706
    • Most Online (within 30 mins)
      7,748

    GFhappygirl
    Newest Member
    GFhappygirl
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Heatherisle, You have good reason to worry.   Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.   Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms. Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain. References and Interesting Reading: Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/ Thiamine Deficiency Masquerading As Guillain-Barré Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/ Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/ Is there a Link between Vitamin B and Multiple Sclerosis? https://pubmed.ncbi.nlm.nih.gov/28875857/ Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/ The Effects of Vitamin B in Depression https://pubmed.ncbi.nlm.nih.gov/27655070/ Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/ Myopathy in thiamine deficiency: analysis of a case https://pubmed.ncbi.nlm.nih.gov/16920153/ Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/38705013/ B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pubmed.ncbi.nlm.nih.gov/31490017/ Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/  
    • Heatherisle
      Hi  There’s been no mention of her adrenal glands as far as I know
    • Theresa2407
      Have they checked her Adrenal glands.    
    • Heatherisle
      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.
    • Aretaeus Cappadocia
      Your concerns are reasonable about the celiac risk aspect, and getting additional medical input is a good idea. Obviously I don't know the extent of your child's misalignment, but please don't think of it as just a cosmetic issue. Braces improve bite alignment and typically provide long term health benefits.
×
×
  • 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.