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

Confused With Biopsy Results

Luisa2552

Recommended Posts

Luisa2552 Apprentice
Luisa2552
Posted

I'm so confused! I just came from my GI appointment following my biopsies. First I asked about the blood work- I new it was positive but I wanted numbers, tests, etc. They ran a TTG which he explained was IGG and IGA. He said my IGA was negative, but sometimes this can happen in celiac disease. The IgG was positive at a value of 19. He told me it had to be twice the value of high normal (10) to be considered celiac disease. So I'm 1 under. Then he said by biopsies showed villi blunting. He told me celiac disease would show atrophy and blunting indicates possible celiac disease. I have had a great response to gluten-free diet and I really don't need tests to confirm it. Now he is running the DLQ 2 and DLQ8 and a total IGA. I wonder how good a doc he is because he said he just recently heard of the gene tests. I'll be the first in the practice to have it done.

What is going on? I'm so confused. I really don't want to have a life long gluten-free diet if I don't have too.

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Hello,

You have positive bloodwork, positive biopsy, and a positive response to the gluten-free diet--you do have Celiac. :)

I had the gene test run after I was diagnosed, just because I was curious. I think it's nice to know.

ravenwoodglass Mentor
ravenwoodglass
Posted
I'm so confused! I just came from my GI appointment following my biopsies. First I asked about the blood work- I new it was positive but I wanted numbers, tests, etc. They ran a TTG which he explained was IGG and IGA. He said my IGA was negative, but sometimes this can happen in celiac disease. The IgG was positive at a value of 19. He told me it had to be twice the value of high normal (10) to be considered celiac disease. So I'm 1 under. Then he said by biopsies showed villi blunting. He told me celiac disease would show atrophy and blunting indicates possible celiac disease. I have had a great response to gluten-free diet and I really don't need tests to confirm it. Now he is running the DLQ 2 and DLQ8 and a total IGA. I wonder how good a doc he is because he said he just recently heard of the gene tests. I'll be the first in the practice to have it done.

What is going on? I'm so confused. I really don't want to have a life long gluten-free diet if I don't have too.

Your doc, well he's not the greatest.

With positive blod, positive dietary response and villi blunting there really is no doubt. Do not let him talk you into poisoning yourself for a couple months just so he can say 'Yup now the villi are totally destroyed it's definately celiac.' And get the money for a repeat endo.

gfpaperdoll Rookie
gfpaperdoll
Posted

yep, your doctor needs help!!! :rolleyes::rolleyes:

The gene test at Enterolab.com is only $99.00, I think, might be cheaper there than at your docs office.

I wound not be giving him any of my time or money :lol:

jerseyangel Proficient
jerseyangel
Posted

I had my gene test done through Enterolab--it was $169 ($149 + $20 s&h). That wasn't covered by insurance--

Darn210 Enthusiast
Darn210
Posted

If you need to hear it from a doctor in order to commit to a life long gluten-free diet, then get a second opinion. You won't have to repeat the testing, they will interpret the results from your tests that have already been done.

I once had a doctor that recommended 2nd opinions (at times - to put people at ease, a 2nd set of eyes, life long diagnosis). She said if your doctor is offended that you want to get a 2nd opinion then you don't want them for your doctor.

aikiducky Apprentice
aikiducky
Posted

Your doctor is just old-fashioned. It used to be you had to have total villous atrophy before they'd call it celiac disease but at least here in Holland the new guide lines are that villi blunting is an earlier stage of celiac. So you just caught it early.

I agree with the idea of a second opinion. A more knowledgeable doctor would probably be happy to give you an official diagnosis with these test results I'd think.

Pauliina

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

Celiac.com Sponsor (A8-M):


Luisa2552 Apprentice
Luisa2552
Posted
  • Author

Thank you all. you confirm what I fell. My doc is old school ( the guy has to be in his 60's) Maybe it's better he doesn't 'officially' diagnose me- better from a insurance point of view.

GFhopeful Rookie
GFhopeful
Posted

i had villi bluting too and a good response to the diet so.... and i didn't even have the positive bloodwork. i am going to mayo clinic next month as i have some remaining symptoms (low thyroid, headaches, fatigue, etc) that are getting better but not all better. i never had the gene test run yet either so i'm guessing they will do it there. but i heard the same thing as the previous post, that villi blunting means they just caught it early. i was so sick that it's hard to believe that it was caught early but that's what the biopsy showed. good luck to you. i feel that i have celiac just from the diet response but guess the second opinions can't hurt.

PattiD2 Rookie
PattiD2
Posted

My daughter had original positive blood test that came back down to normal after 10 weeks on gluten-free diet. Moderate but not complete response to gluten-free diet. Lymphocytes on first biopsy, clear on follow up biopsy at 10 weeks gluten-free. Doctor has discussed gluten challenge some day in the future. I'm not convinced that we could go through with it.

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.