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

No Villi Atrophy But Do Have Inflamation


srthomas21

Recommended Posts

srthomas21 Explorer

I still have not got blood test back but the biopsy came back with inflamation in the small intestine but no villi atrophy.

Anybody know what that could mean?


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



Celiac.com Sponsor (A8-M):



The Fluffy Assassin Enthusiast
I still have not got blood test back but the biopsy came back with inflamation in the small intestine but no villi atrophy.

Anybody know what that could mean?

It means you probably don't have celiac sprue and that you're probably about to get a diagnosis of Crohn's disease: Open Original Shared Link

Mind you, I'm not a doctor nor a diagnostician of any kind; wait a bit and the doctors and diagnosticians you're already seeing will have a much more confident answer for you (hopefully).

JennyC Enthusiast

You really need your blood work results. It is possible to have positive blood work and a negative biopsy and still be diagnosed with celiac disease. You may want to give the doctor a call to see if your results are in! ;)

ravenwoodglass Mentor

Celiac can also cause inflammation before the villi are destroyed. I would give the diet a shot even if the blood work is negative. Below is a quote from the article that you were given a link to. Since it is considered an immune system problem it sure couldn't hurt to give the diet a try.

"Several theories exist about what causes Crohn’s disease, but none have been proven. The human immune system is made from cells and different proteins that protect people from infection. The most popular theory is that the body’s immune system reacts abnormally in people with Crohn’s disease, mistaking bacteria, foods, and other substances for being foreign. The immune system’s response is to attack these “invaders.” During this process, white blood cells accumulate in the lining of the intestines, producing chronic inflammation, which leads to ulcerations and bowel injury."

nora-n Rookie

In the old days one had to have villous atrophy, meaning no villi, to get a diagnosis for celiac.

Now they have graded the biopsies according to the Marsh scale (google it)

If you read the charts, it says increased intraepitelial lymphocytes or something like that.

maybe your answer meant that.

Some symptomatic patietns have asked for a second opinion, and sent their slides to the U of maryland, who give a diagnosis of celiac based on symptoms and increased IEL's.

See also thefooddoc blog, Dr- Lewey's webiste , there are also some articles and interviews with him here on the celiac.com website.

nora

Gfresh404 Enthusiast

That's funny. That's the exact same thing my biopsy showed - no atrophy, but minor inflammation. Turned out to be gluten sensitivity. My GI ruled out Crohn's I believe with some kind of a marker test, I forget if it was blood or what.

darkhorse Apprentice

My results showed the same thing. I tested negative for a bunch of other tests (don't remember hearing about Crohns) including IBD, Barrett's esophagus, H pylori, ulcers and a bunch of other things. I did have elevated mast cells that indicated an immune response of some kind. I had a positive response to the diet and all my pain and stomach problems went away. The Dr told me that if the diet worked for me, then I should stick with it since there was no other obvious cause for my symptoms.


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



Celiac.com Sponsor (A8-M):



Gfresh404 Enthusiast
The Dr told me that if the diet worked for me, then I should stick with it since there was no other obvious cause for my symptoms.

It's good to hear another Doctor actually listening to and trusting their patients. I have heard so many stories of doctors saying; "Gluten can't be the issue, you tested negative for Celiac, it is perfectly fine for you to consume gluten." This just really bothers me. When doctors themselves are not educated about these issues. There is so much we still don't understand about the human body. If it works go with it.

srthomas21 Explorer
It's good to hear another Doctor actually listening to and trusting their patients. I have heard so many stories of doctors saying; "Gluten can't be the issue, you tested negative for Celiac, it is perfectly fine for you to consume gluten." This just really bothers me. When doctors themselves are not educated about these issues. There is so much we still don't understand about the human body. If it works go with it.

Thanks for your replies. The Dr. said I did not have Crohns . I do have Ulcerative Colits which I had my colon removed because of it.

The blood tests are in. They want me to come in and talk with the Doc. I think that means they were positive. Could this be the last day for Gluten? If so I will miss you :)

  • 1 month later...
HKWW Newbie

same thing here - biopsy results showed no villi atrophy but only inflammation. and doctor told me to relax and eat as normal, it may just be in my brain. he has also ruled out blood tests because he said blood tests are inconclusive and can give false (+) / (-) results anyway. i happened to be chinese and funny he also said chinese people don't have celiac. but when in the 2 weeks that i waited for my biopsy results, i went gluten-free anyway (or tried to), and when i went really gluten-free, i felt that my GI has improved and never once did i have bloated stomach again, but for those times that i didn't come cleanly gluten free (i.e. had meat marinaded with gluten-containing marinades), my stomach went bloated like i have a 5-month pregnancy... anyway, i am trusted my senses more than these doctors and will go gluten-free whenever i could now, afterall, it's my body and i should know my body best.

ravenwoodglass Mentor
same thing here - biopsy results showed no villi atrophy but only inflammation. and doctor told me to relax and eat as normal, it may just be in my brain. he has also ruled out blood tests because he said blood tests are inconclusive and can give false (+) / (-) results anyway. i happened to be chinese and funny he also said chinese people don't have celiac. but when in the 2 weeks that i waited for my biopsy results, i went gluten-free anyway (or tried to), and when i went really gluten-free, i felt that my GI has improved and never once did i have bloated stomach again, but for those times that i didn't come cleanly gluten free (i.e. had meat marinaded with gluten-containing marinades), my stomach went bloated like i have a 5-month pregnancy... anyway, i am trusted my senses more than these doctors and will go gluten-free whenever i could now, afterall, it's my body and i should know my body best.

Please go gluten free all the time not just whenever you can. Also there are lots of false negatives but not false postives with blood testing. If you had a postive blood test, even just a little positive it is a positive test. In addition the genetic testing leaves a lot to be desired. If I had been gene tested before diagnosis I would have been told that I don't have the genes and couldn't be celiac. Doctors negated my celiac daughters diagnosis when she had her genes tested even though she had positive bloods and biopsy. It turns out our celiac genes are uncommon genes in the Caucasian population. They are 'Asian' genes and when I did a bit of research it did turn out that they are recognized celiac genes in the Middle East and Far Eastern populations. There is a great deal that is not known about celiac but your body has given you the answer.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,916
    • Most Online (within 30 mins)
      7,748

    kls888
    Newest Member
    kls888
    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

    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      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!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
    • Xravith
      @knitty kitty  Thank you very much for the advice. I did the exam this morning, my doctor actually suggested me to take something called "Celiac duo test" in which I first do the genetic test and if it's positive, then I'll have to do the antigen blood test. I have to attend 1 month until my results are ready, so I have some weeks to increase the amount of gluten I eat daily. It will be hard because my health is not the best right now, but I also did a blood test to cheek my nutritional deficiencies. The results will arrive on Tuesday, so I can ask my doctor what should I do to control my symptoms and blood levels during this month. For now I'm resting and paying attention to what I eat— at least I don’t look like a vampire who just woke up, like I did yesterday. I'm still scared because is the first time I've felt this sick, but this is the right moment to turn things around for the better.  I realized that if I eat gluten at lunch I cannot finish the day properly, I become severely tired and sometimes my stomach hurts a lot - let's not talk about the bloating that starts later. Do you think is it ok to eat gluten just in the morning, like some cookies and slices of bread for breakfast? 
×
×
  • 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.