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

Got Biopsy Results, Now Utterly Confused

Killarney

Recommended Posts

Killarney Apprentice
Killarney
Posted

So, my blood test was positive for antibodies.

I just got my biopsy results today by mail (doctor's office didn't even call!) and it says:

"Mild inflammation in stomach. Duodenum does not show Celiac Disease."

So, now what?

I have a theory and I'm wondering if this could be the case. Before I went gluten-free, I ate basically all gluten, all the time. All I ate was bread, pasta, and pizza. Seriously. Pizza, pasta, or a sandwich for lunch and dinner every day and muffins or pancakes for breakfast every morning. Could I have had antibodies because I was getting too much exposure to gluten rather than having Celiac's Disease?

Maybe I should--rather than staying gluten-free--change to a limited gluten diet? Like once a day eat something containing it and then go for another blood test in a few months and see what it says?

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

If your blood tests were positive AND if you were having symptoms (I don't remember about this), you almost without question have celiac disease.

Problems with the biopsy: Did they take enough samples? Did they just miss the damaged spots? Did the person reading the sample have the necessary expertise? Did you stop eating gluten before the biopsy and if so for how long? And finally, some doctors will not diagnose celiac without the villi being completely flattened. Is this your doctor?

I really don't think the gluten overdose theory flies. In fact I think it's not ever eating a certain thing like rice or corn that can make you more sensitive to it.

Of course it's up to you. I don't react to small gluten mistakes and in fact could probably indulge every now and then without obvious distress. But then I think about how sick I was. I also had the flattened villi so there was no question.

richard

Mom22 Apprentice
Mom22
Posted

You can also have your biopsy slides reread by another doctor too. Our daughter's biopsy results were inconclusive and they wanted to rebiopsy her again 3 months later. She is only 4, so we didn't want to do that. We had her slides reread by Dr. Alessio Fasano and he confirmed she had celiac disease. It was a very easy process to have the slides sent to him and reread and I believe it cost $250 to do so and many health insurance companies will pay for the second opinion too! Something to consider.

Mom 2 2

3boyzmom Newbie
3boyzmom
Posted

You developed antibodies to gliadin - HOW that happened, I don't know. Was it triggered by genetics? Stress? A virus? Don't know - what you do know is that your body has identified gliadin (gluten in wheat, barley, rye) as an invader and has developed anti bodies to fight it. Whether you've got flattened villi or not - the result is the same - gluten-free diet for life.

As Richard said, there are problems with biopsies. How many samples were taken? etc... Misreading of the samples is another problem as Mom 2 2 encountered.

Go gluten-free and help your body! :)

It's not such a bad thing... it's a better way of eating than you were eating before! :)

faith Newbie
faith
Posted

Hi, I guess I have some questions after reading all this. I just got out of the hospital I was in for 10 days. I've been gluten-free since Jan.04, anyways I started getting really sick vomiting, diareaha, my DH got the worst its ever been my soars got so bad and massive my face and neck swelled 3 times its regular size, when I got to the E.R. everyone was just staring at me, I'm getting kind of used to that from the DH. They admitted me right away My skin hurt so bad it hurt for them to touch it, I did go off of my Dapsone last month, just to see if I still needed it or could controll just with my diet, well I found out I still need it. Anyways the Dr. swore I've been cheating, well if I was I wouldn't call it cheating, I'm very careful, it would of been a mistake in not knowing something had gluten in it. I don't like it when I'm accused of cheating if I haven't, because its hard work to stay on this diet. Anyways they did an endoscopy, everything was fine, no inflamation and my villi were still up, so the Dr. said I must not have been cheating, but the biopsy came back positive for celiac. So my? is if I've been gluten-free and everything looked fine how come my biopsy still came back positive for celiac? Just to let you all know the conclusion of my stay, I'm very much allgeric even to touch a rag that someone wiped a counter off with like bread crumbs, flour, ect. I need to wear gloves now, also they put me on a lactose-free, sugar-free, and soy-free diet, they feel I'm also allergic to that stuff from playing around with my diet in the hospital so any info on these diets would be much appreciated I just think soy lecethin is in alot of foods, so help!

Faith :(

tarnalberry Community Regular
tarnalberry
Posted

it does indeed sound like you're not only gluten-intolerant, but also allergic. if you haven't had a regular allergy test, it looks like it's time for one of those as well.

gf4life Enthusiast
gf4life
Posted

I agree with Tiffany that you should have some allergy testing done.

I am allergic to soy, but I can have soy bean oil and soy lecithin without any ill effects. I wouldn't recommend you try this without your doctors approval, since you seem to have severe reactions, but for most people allergic to soy, the oils are well tolerated. Which I am very thankful for, since it would virtually eliminated almost all processed gluten-free foods!

I hope you are feeling better soon.

God bless,

Mariann

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

Celiac.com Sponsor (A8-M):


faith Newbie
faith
Posted

Thanks for info, yea I was thinking the exact thing everything I like in gluten-free foods has the soy leciten, so I wondered how do people eat??? So I will definately try the soybean oil, and the soy lecetin and see how I react to it. Thanks again, and God Bless all of you also ; Faith :rolleyes:

Archived

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

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


  • Member Statistics

    • Total Members
      131,854
    • Most Online (within 30 mins)
      7,748
    TDeb
    Newest Member
    TDeb
    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

    • 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.        
    • Scott Adams
      Nausea

      By Scott Adams · Posted

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  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:    
×
×
  • 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.