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

Test Results Are In.


sherrylynn

Recommended Posts

sherrylynn Contributor

Ok, the results for my endo are in and my small bowel biopsy is normal. I have no ulcers anywhere,although I still have blood in my stool. So if both my blood test and biopsy are negative that means what. Could I still have celiac or is this all in my head. I don't have diarrhea all the time and I can eat bread and not react all the time but then again when I do I end up having an accident and it is usually when I am out shopping or in my car. I am lactose intolerant and have leg pain and brain fog as well as the cramping in my gut and pain in my abdomen. So I don't understand how the tests came back normal.

The nurse told me the doc only took 2 biopsy's from my small bowel so could that be why it is normal he didn't get to the damage or is there even any damage. I am beginning to feel like I really am a hypochondriac.


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Both blood and biopsy can be negative. Two samples is not very many. My Celiac GI takes 6, some say 3 is enough. Regardless, if you have symptoms that led you to Celiac testing, it seems the next step is to completely remove gluten for at least three months.

If it turns out you improve on gluten-free trial, you have your answer - don't eat gluten. All of my kids/grands tested negative, yet had improved symptoms gluten-free.

I know it can be very frustrating - the "normal"/negative medical testing system can make anyone feel like a hypochondriac - don't let it get you down, trial removing gluten - keep asking questions until you find your answers.

Mom-of-Two Contributor

Two biopsies is not enough!! It is baffling that a GI would only take two biopsies when looking for celiac! I would NOT consider this biopsy to be valuable in your diagnosis. I was diagnosed with biopsy that she had taken 6+ samples, when my 8 year old had her scope done, they took a total of 8 samples.

Did you say you had celiac blood work?

If your testing is complete, go for the gluten free diet----- if you have relief, you may have your own "diagnosis". That is where we are with our oldest child, she has positive blood work for celiac but normal biopsy so doc won't diagnose her, we are not taking her totally gluten free to get our own answers :) sometimes you have to rely on yourself and your own experience!

MitziG Enthusiast

Please realize that you can have a serious problem with gluten that ISN'T celiac disease! If it makes you sick- don't eat it! You don't need to have a drs permission to feel better.

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. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      40

      Severe severe mouth pain

    2. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      40

      Severe severe mouth pain

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

    4. - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

    5. - trents replied to Charlie1946's topic in Related Issues & Disorders
      40

      Severe severe mouth pain

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

    • Total Members
      133,085
    • Most Online (within 30 mins)
      7,748

    kk007
    Newest Member
    kk007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      I agree.  If someone has Barrett's Esophagus, at least here in the UK, as I understand it under normal circumstances a PPI needs to be taken long term (or similar medication).  I have two friends with this.  The PPI it does have side effects but they still have to take it.  
    • knitty kitty
      Do talk to your doctor about making changes to your medication.    I'm not a medical doctor.   I'm a microbiologist.  I studied nutrition before switching to microbiology because I was curious what vitamins were doing inside the body. I would hate to give advice that jeopardizes your health, so do discuss things with your doctor.   
    • knitty kitty
      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
×
×
  • 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.