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

Don't understand my results, can someone help?

Kerissajane

Recommended Posts

Kerissajane Newbie
Kerissajane
Posted

Hi everyone, 

I have been feeling pretty sick now for about 5 months. Finally my boyfriend made me go see a doctor, which I did. My first doctor did a full blood panel and tested me for h pylori - panel came back normal, negative for h pylori. She then referred me to a GI doctor who ordered a full celiac blood panel. Everything came back normal except for one test - he said the max was a 5, and I scored a 6. He didn't clarify which test it was, but from research I think it's the ttg-igg test? 

He then scheduled me for an endoscopy and colonoscopy. He found inflammation only in the stomach - nonerosive gastritis - and this was the only area he biopsied.  I just got a call today from the doctor who said the biopsy results were normal, and told me to just take anti-acid pills for a few months then see how I feel. 

He never addressed what this meant? So do I have or not have celiac? If I don't, I have already taken anti-acid pills, I don't want to live on them forever... I'm having a hard time accepting that just anti acid pills will make me feel better .. They help with the bloating and sensitive stomach (literally can't put any pressure on my belly) but not the nausea, night fevers, and vomiting. 

Can someone pls help me make sense of my doctor's vague instructions/responses to my testing? 

 

Thank you! 

 

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

Celiac.com Sponsor (A8-M):


Go2GFGirl Newbie
Go2GFGirl
Posted

If they did a full blood panel on you for celiac and one comes out high....you have celiac. There are approximately 7 variations of a code for celiac in the genes. It's passed down from family to family.  My mom has a weakness and so does her mom.  Did he go all the way to the small intestines when the Dr. scoped?  If he didn't then he wouldn't see the damage to the small intestine, since that's where the damage is done.  Being on anti-acids is actually doing you more harm then good....it will seem like you have immediate relief....but it's actually making your stomach produce MORE acid ...which will obviously cause an ulcer. Try pineapple, papaya or papaya enzymes for relief.  Try and go off all gluten for 2 weeks and see how you feel.  It's a lot of trial and error...and unfortunately your average MD is not going to tell you to do that.  So start by changing you diet to Gluten Free for 2 weeks and see what happens.  Also you might for the time being...if you're having acid reflex....cut back on acidic foods like tomatos and hot sauces. If the acid reflex is really bad....drink a Tbsp of Apple Cider Vinegar....the effects are immediate. 

Hope to hear back on your results.

cyclinglady Grand Master
cyclinglady
Posted

I am sorry that this is happening to you.  Your best bet  is to obtain copies of all your lab and biopsy reports and post them here (with ranges).  Someone can interpret them.  We are not doctors, but can help based on our personal experiences with celiac disease and NCGI.  

Meta4icalme Newbie
Meta4icalme
Posted

Kerissajane,

I suggest you contact the Dr and "ask him directly to clarify" whether or not you have Celiac Disease. Or you can call the Gastro's office you saw for your biopsy evaluation and they can answer your question on the phone.

Your Dr is responsible for your medical questions and answers. When he isn't being clear enough then it's your turn to take control of getting him to clarify. Remember he works for you. 

Here's hoping you don't have Celiac Disease and that its just acid upset! Good luck ?

ravenwoodglass Mentor
ravenwoodglass
Posted

Since your doctor didn't do any biopsies of your small intestine there is no way to know if you do or do not have celiac. Do post your test results as we can help interpret them.  If you don't plan on any further testing for celiac you can do a strict trial of the diet. If you are going to want more testing  (second opinion?) don't drop gluten yet.

bartfull Rising Star
bartfull
Posted
1 hour ago, Go2GFGirl said:

If they did a full blood panel on you for celiac and one comes out high....you have celiac. There are approximately 7 variations of a code for celiac in the genes. It's passed down from family to family.  My mom has a weakness and so does her mom.  Did he go all the way to the small intestines when the Dr. scoped?  If he didn't then he wouldn't see the damage to the small intestine, since that's where the damage is done.  Being on anti-acids is actually doing you more harm then good....it will seem like you have immediate relief....but it's actually making your stomach produce MORE acid ...which will obviously cause an ulcer. Try pineapple, papaya or papaya enzymes for relief.  Try and go off all gluten for 2 weeks and see how you feel.  It's a lot of trial and error...and unfortunately your average MD is not going to tell you to do that.  So start by changing you diet to Gluten Free for 2 weeks and see what happens.  Also you might for the time being...if you're having acid reflex....cut back on acidic foods like tomatos and hot sauces. If the acid reflex is really bad....drink a Tbsp of Apple Cider Vinegar....the effects are immediate. 

Hi Go2, and welcome to the forum. I agree about the apple cider vinegar. (Diluted in water of course). A lot of folks with reflux or heartburn think that would be the worst thing they could do but it really helps.

And if the OP decides to try a gluten-free diet instead of going for further testing I wouldn't blame her. But I don't think a two week trial is long enough. Heck, a lot of folks are still dealing with gluten withdrawal two weeks in. I think at least a three MONTH trial would be better.

Hope to hear back on your results.

 

sheelahdog Newbie
sheelahdog
Posted

None of my tests (always incomplete) ever came back positive, but had issues my whole life.  Doctors kept telling me it was this or that - and then that it wasn't this or that but something else.  I tried to go gluten free by eating gluten free processed foods and it was a disaster for me.  My breakthrough came when I went on the specific carbohydrate diet (no grains, starches, sugars, lactose ...) because someone told me it would help my inflammation and pain.  It made a huge difference! My gut was so damaged, it needed time to heal.  The next time I tried a little gluten 6 months later (a pinch of the sacrament bread at church) I ended up throwing up blood.  So after a quick upper scope two doctors told me i was gluten intolerant and never to eat it again.  I never looked back.  I am so glad I kept trying when the doctors didn't know what it was.  I feel so much better!  I figure it doesn't really matter if or when you get an official diagnosis.  Try and find what works and then do that.

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

Celiac.com Sponsor (A8-M):


Go2GFGirl Newbie
Go2GFGirl
Posted
15 hours ago, bartfull said:

And if the OP decides to try a gluten-free diet instead of going for further testing I wouldn't blame her. But I don't think a two week trial is long enough. Heck, a lot of folks are still dealing with gluten withdrawal two weeks in. I think at least a three MONTH trial would be better.

I absolutely agree, 3 months is preferable to 2 weeks....I just know personally from the people in my life who want to go Gluten Free don't have the will power.  I say 2 weeks as a trail because it's just long enough to make a worse reaction when you try to eat gluten after the 2 weeks.  As you said though...3 months ...or forever is much better.  I just know not everyone has the willpower and self-control to resist their favourite gluten filled treats.

As everyone has been mentioning....if you are planning to have more testing or seek a 2nd opinion....don't go off gluten yet.  If you are satisfied with your results and want to make a life change with changing your diet to gluten free and move on....then just go gluten free.  If you are just gluten-intolerant....going gluten free is enough. If you have celiac (as I do personally) ....going off gluten isn't enough. To repair the damage done to the small intestine you need to cut out ALL grains and processed sugars. They cause inflammation and are not healing your small intestine.

 If you have any more questions, feel free to ask....But I would suggest getting clear answers from your Doctor.

Kerissajane Newbie
Kerissajane
Posted
  • Author

I really appreciate everyone's feedback. I might try the apple cider vinegar, I've heard it does actually help. 

I'm traveling and the doctors office wants to charge me to put the results online so I'm going to wait and pick them up for free when j get back from out of town - in about 2 weeks. 

I'll post them then! Starting to wonder if I should also get a second opinion. 

My intuition tells me this is not just a case of gastritis. Two days before my procedure I attended a friend's baby shower and ate cake and all other sorts of gluten containing foods and got very sick - like when you get food poisoning - that woke me up in the middle of the night. I was hovering over the toilet for 2 hours, it was horrible. No one else got sick!! I didn't even eat a lot.. No alcohol, no meats, etc. 

Anyway, ill be back on here with results as soon as I get them! Thanks again

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. tiffanygosci
      - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After...
    2. knitty kitty
      - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      On the AIP diet, all processed foods are eliminated. This includes gluten-free bread. You'll be eating meats and vegetables, mostly. Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well. Veggies should be fresh, or frozen without other ingredients like sauces or seasonings. Nightshade vegetables...
    3. Yaya
      - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      Thank you for responding and for prayers. So sorry for your struggles, I will keep you in mine. You are so young to have so many struggles, mine are mild by comparison. I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of. Following surgery: multiple symptoms/oddities appeared including...
    4. larc
      - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back. My cardiologist offered me a collection of pharmaceuticals at the time...
    5. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

      So I should not eat my gluten free bread? I will try the vitamins. Thank you all so very much for your ideas and understanding. I'm feeling better today and have gathered back my composure! Thank you kitty kitty I am going to look this diet up right away. And read the paleo diet and really see if I can make this a better situation then it currently...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,921
    • Most Online (within 30 mins)
      7,748
    Serena Rodriguez
    Newest Member
    Serena Rodriguez
    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

    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      Help I’m cross contaminating myself,

      By knitty kitty · Posted

      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Does anyone here also have Afib

      By Yaya · Posted

      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      Does anyone here also have Afib

      By larc · Posted

      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.