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

Trying To Understand Cd

Tami

Recommended Posts

Tami Newbie
Tami
Posted

I have had stomach problems most of my life...diarrhea, cramping, bloating, nausea. I never knew what caused it. I decided last fall that I was tired of "knowing where all bathrooms were" and planning my day around if I could leave the house and not need to be close to bathroom and went to the doctor.

I had been told before that it was IBS. The doctor asked me about my family history. My sister has crohns disease and IBS. So, he arranged for some tests to be done, colonoscopy, small bowel follow through and some blood work. All came back fine. I told him about the burning around my belly button area. he then metioned celiac disease, i had never heard about. They did a blood test. while waiting for the results, I found this website and found out some other symptoms that I have: fatigue, head aches, achiness, joint pain, brain fog, head twitching. The bloodwork came back positive. I had an endoscopy done, it came back negative. The doctor said that he could not diagnose me with celiac disease with a negative biopsy. But, if I went off gluten for 2 weeks and my symptoms went away then it was celiac disease. he didn't mention about me seeing a dietician. I have been learning on my own. I did really well for a while, then we had a death in the family, summer picnics, reunions and I fell off the wagon. So...my symptoms are back except for the pain in my stomach. So, I am writing this to encourage others and myself that it is worth it to stay gluten free. Should I look for another doctor? or just find a support group close to where I live to cope with living gluten free? My sister told me that it may be a good thing that he didn't diagnose me with celiac disease because of getting approved for life insurance. I have been struggling. Thanks for letting me vent :)

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

I would go with the blood tests in this case and stay gluten free. A negative biopsy does NOT rule out celiac. It simply says there is either no damage or sporadic damage that they missed.

I would find a good doctor who knows alot about celiac. Obviously this clown of a doctor wasn't too bright when it came to that.

This site will help you out with foods and products that you can have. It really gets so much easier.

Carriefaith Enthusiast
Carriefaith
Posted

I think it would be a good idea to get a second opinion on this. Which blood test was positive? Because a positive tissue transglutamase blood test is highly specific for celiac disease. Like Kaiti said, if the biopsy was negative the doctor may have missed the damage. Either way, I think that it is a very good idea to stick with the gluten-free diet since you had a positive blood test and feel better on the diet.

Tami Newbie
Tami
Posted
  • Author
I think it would be a good idea to get a second opinion on this. Which blood test was positive? Because a positive tissue transglutamase blood test is highly specific for celiac disease. Like Kaiti said, if the biopsy was negative the doctor may have missed the damage. Either way, I think that it is a very good idea to stick with the gluten-free diet since you had a positive blood test and feel better on the diet.

<{POST_SNAPBACK}>

Thanks for the information...I am realizing that I cannot do this on my own now and will be looking for a new doctor.

Do most doctors usually say that it is not celiac disease, if the biposy is negative?

Carriefaith Enthusiast
Carriefaith
Posted
Do most doctors usually say that it is not celiac disease, if the biposy is negative?
It depends on the doctor. My doctor had to do the biopsy, but others are satisified with the positive blood test(s).
KaitiUSA Enthusiast
KaitiUSA
Posted

Some blood tests are pretty specific and the tTG test will be taking the place of biopsies for diagnosis in kids soon. I was diagnosed by blood tests alone..the doctor didn't even want a biopsy because the results came back really indicating celiac plus I have one of the main genes for celiac as well.

Some doctors like to do blood test then biopsy but others don't feel the need for biopsies. I for one think they are not worth the time in alot of cases(in some cases they are good though) because they can miss so much.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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. Hmart
      - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end...
    2. trents
      - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So...
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

      I have a lot to learn! Thank you
    4. DebJ14
      - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies. I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved. Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. ...
    5. Hmart
      - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative. I have gone gluten free. In week 1 I had a flare-up that was similar to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,926
    • Most Online (within 30 mins)
      7,748
    fr0gger03
    Newest Member
    fr0gger03
    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

    • Hmart
      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Is this celiac?

      By trents · Posted

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      I have a lot to learn!  Thank you
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      Is this celiac?

      By Hmart · Posted

      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.