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. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,416
    • Most Online (within 30 mins)
      7,748

    Heather8280
    Newest Member
    Heather8280
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.