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

Just Got My Biopsy Results From My Endoscopy And I'm Confused.

bstefan

Recommended Posts

bstefan Newbie
bstefan
Posted

Hi everyone, I was hoping someone could help me figure my biopsy results out. Long story short, my aunt was diagnosed with Celiac a few decades ago and my dad was diagnosed a few months ago, which prompted me to get tested. My blood panel came back positive for Celiac (I tested positive for 2 out of 3 antibodies, can't remember exactly what.) That was in December, but I couldn't afford to get the endoscopy done until April. Here are the results:

"The biopsy of duodenum show acid injury but no Celiac sprue. Stomach biopsies show gastritis, esophageal biopsies show acid reflux, tested negative for H, Pylori."

 

Most of the results make sense because I drink pop like it's water and I really need to stop that, but the "no Celiac sprue" thing threw me off. For the past few months I've tried cutting back on gluten, but I cheated quite a few times (on purpose and by accident.) I'd rather ask random people on the internet who actually have these problems before I talk with a doctor, since my doctors haven't been very helpful thus far. I'd appreciate any advice you could give me. 

 

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

Hello!

 

Do you have a written copy of the pathology report as well as the doctor's procedural report?  From what you wrote -- they only took one biopsy of the small intestine -- that is not enough and the damage listed can be attributed to early celiac disease...in fact the first two stages of the Marsh Scale for Celiac Disease are considered NON-CELIAC.

 

I'm on the wrong computer, but I'll add a link to a good description of the Marsh Scale later or you could google it.

 

Welcome :)

kareng Grand Master
kareng
Posted

Were you mostly gluten-free before the endo?  That could mean you have healed most of the way.

nvsmom Community Regular
nvsmom
Posted

A negative biopsy in spite of positive blood work (and 2 out of 3 tests is quite positive) has happened to a few people around here. It's not common but it is far from rare. The surface area of your small intetine is roughly that of a tennis court so if the damage was patchy, or you are fairly new to the disease, the damage could have been missed.

 

If your positive tests were the deaminated gliadin peptides (DGP) or the EMA,which are VERY specific to celiac, then you most like are a celiac.  :(

 

Welcome to the board.

GFinDC Veteran
GFinDC
Posted

It's a good idea to get your test results in writing.  They are your personal information and you deserve to have them.  If the doctor wants to keep a copy you could be nice and let them do that, or not.

 

The antibodies aren't made for no reason.  They indicate something is going on in your gut.  Damage can build up slowly and get worse over time, so there are different levels to the Marsh scale.  You really don't want to get to the worst level where the damage on the endoscopy is easily visible to the doctor.  It is better to stop the process before then.  The early stages are determined with a microscopic review, not visually with plain eyes.

GottaSki Mentor
GottaSki
Posted

Wow...totally missed the positive blood work.  Positive is positive.  Paul is right -- get written or electronic copies of all your tests!

bstefan Newbie
bstefan
Posted
  • Author

I searched for a little while and found the results on my online health insurance profile. This is what it is: 


Tissue transglutaminase measurement IgA 7 UNITS/ML
Immunoglobulin A measurement 111 MG/DL 7
Gliadin antibody, IgA measurement 11 UNITS 

When the lady called and told me I had Celiac I didn't really hear anything after that....

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

I searched for a little while and found the results on my online health insurance profile. This is what it is: 

Tissue transglutaminase measurement IgA 7 UNITS/ML

Immunoglobulin A measurement 111 MG/DL 7

Gliadin antibody, IgA measurement 11 UNITS 

When the lady called and told me I had Celiac I didn't really hear anything after that....

 

Were there ranges listed for each test or the words "positive" or "negative" after either the Tissue Transglutaminase or the Gliadin Antibody?

bstefan Newbie
bstefan
Posted
  • Author

Were there ranges listed for each test or the words "positive" or "negative" after either the Tissue Transglutaminase or the Gliadin Antibody?

There's a space for "normal range" but they're all blank. I don't see anything else on the form. 

 

I mean, I know I probably have it, what I don't get is that I've had vague, unexplained symptoms for years, so I was assuming there'd be a lot of damage and it would take a long time for it to heal. I cut down on gluten for the past few months but I cheated pretty often. *shrug*

Archived

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

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


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.