Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
Rudi
Posted

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
Mtndog
Posted

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
OptimisticMom42
Posted

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
elye
Posted

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
gf-soph
Posted

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
ang1e0251
Posted

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.

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


  • Member Statistics

    • Total Members
      131,191
    • Most Online (within 30 mins)
      7,748
    teresa1955
    Newest Member
    teresa1955
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...