• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Confusing Biopsy Results
0

12 posts in this topic

My daughter was recently very sick and then diagnosed with celiac disease by blood tests and endoscopy. The doctor did blood work on my husband and I. My bloodwork was elevated so I proceeded with the biopsy. I am now confused by the results... I do not have any severe GI symptoms. I have always had acid reflux and as a child my stomach always hurt off and on due to the acid. I have fatigue, headaches, and depression...but I guess I attribute those symptoms to being a tired mom. Over the past 6 years I have had a blistering rash that was undiagnosed by 2 dermatologist. Currently, I don't actively have the rash so could not biopsy it. I think I don't have celiacs according to the results.

Here they are:

tTG AB, IgA = 30. (Normal <4)

tTG AB IgG = 2 normal (normal <6)

HLA positive for DQ2

Immunoglobulin A (IgA) in range at 177 (normal 81-463)

Biopsy:

Biopsy showed mild suspicion for wheat allergies

Small hiatal hernia & esophagitis from acid reflux.

The biopsy results showing wheat allergy really confuses me. What do they see on a biopsy to think I have a wheat allergy?? I guess that means I shouldn't eat wheat but won't kill me to eat it as it does a person with celiac disease.

Thanks for any input!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Did they give you the whole pathology report?  This is odd for a pathology report. Celiac isn't an allergy and a wheat allergy wouldn't leave damage in the small intestine.  I am wondering if that is just what your docotor wrote on a report he gave you?  I would ask for the whole pathology report.

0

Share this post


Link to post
Share on other sites

Did they give you the whole pathology report?  This is odd for a pathology report. Celiac isn't an allergy and a wheat allergy wouldn't leave damage in the small intestine.  I am wondering if that is just what your docotor wrote on a report he gave you?  I would ask for the whole pathology report.

I guess these are his reports on the biopsy results. Would the doctors office be able to fax me my detailed biopsy results?

I have no idea why he thinks it may be a wheat allergy....I thought a wheat allergy wouldn't elevate my bloodwork and wouldn't be visually seen on a biopsy?

0

Share this post


Link to post
Share on other sites

I guess these are his reports on the biopsy results. Would the doctors office be able to fax me my detailed biopsy results?

I have no idea why he thinks it may be a wheat allergy....I thought a wheat allergy wouldn't elevate my bloodwork and wouldn't be visually seen on a biopsy?

 

 

I think he is using the wrong term "allergy".  Maybe he thinks that is easier for you to understand?  I would ask for the actual pathology report - the doctor who did the biopsy will have it.  And then I would ask him does he mean Celiac? 

 

A wheat allergy would not give you positive Celiac blood work.  Its a whole different thing.

 

 

"As with most allergies, a wheat allergy causes the immune system to respond to a food protein because it considers it dangerous to the body when it actually isn’t. This immune response is often time-limited and does not cause lasting harm to body tissues"

 

 

http://www.cureceliacdisease.org/archives/faq/what-is-the-difference-between-gluten-intolerance-gluten-sensitivity-and-wheat-allergy

0

Share this post


Link to post
Share on other sites

I received my pathology report. The bloodwork is in my topic post. I assume this means I don't have celiacs disease??? Any opinions?

1. jejunum biopsy: increased infra epithelial lymphocytes. Normal villus architecture; however, up to 35 intraepithelial lymphocytes per 100 surface epithelial cells are identified. Suggestive of Marsh score 1 lesion (laten gluten sensitive estero patchy); however, in itself this is nonspecific finding and may be seen in several conditions including h.pylor gastritis, bacterial intestinal overgrowth, certain autoimmune states, infectious etiologies and NSAID use. For this reason, clinical and serologic correlation are necessary for full interpretation.

2. Gastric Antrum biopsy: mild chronic antral gastritis, inactive. No intestinal meta plastic, dysplasia, heliobacter or fungal organisms.

3. Lower esophagus biopsy: benign squamous mucosa showing mild active esophagitis.

- less than 5 eosinophils are identified per high power field, largely excluding involvement by an eosinophilia esophagitis.

- no glandular mucosa, intestinal meta plasma, dysplasia or fungal organisms identified

Any thoughts on if you think I can rule out celiac disease or maybe this is very early stage celiac? I am gluten free now because of my concern with cross contamination of my celiac 1.5 yr old. Since I am gluten free, it won't help to retest in a year. I still don't understand why the doc wrote on his report that it is possibly a wheat allergy. My appointment is next week so I will have to see what he says.

0

Share this post


Link to post
Share on other sites
Ads by Google:


I received my pathology report. The bloodwork is in my topic post. I assume this means I don't have celiacs disease??? Any opinions?

1. jejunum biopsy: increased infra epithelial lymphocytes. Normal villus architecture; however, up to 35 intraepithelial lymphocytes per 100 surface epithelial cells are identified. Suggestive of Marsh score 1 lesion (laten gluten sensitive estero patchy); however, in itself this is nonspecific finding and may be seen in several conditions including h.pylor gastritis, bacterial intestinal overgrowth, certain autoimmune states, infectious etiologies and NSAID use. For this reason, clinical and serologic correlation are necessary for full interpretation.

2. Gastric Antrum biopsy: mild chronic antral gastritis, inactive. No intestinal meta plastic, dysplasia, heliobacter or fungal organisms.

3. Lower esophagus biopsy: benign squamous mucosa showing mild active esophagitis.

- less than 5 eosinophils are identified per high power field, largely excluding involvement by an eosinophilia esophagitis.

- no glandular mucosa, intestinal meta plasma, dysplasia or fungal organisms identified

Any thoughts on if you think I can rule out celiac disease or maybe this is very early stage celiac? I am gluten free now because of my concern with cross contamination of my celiac 1.5 yr old. Since I am gluten free, it won't help to retest in a year. I still don't understand why the doc wrote on his report that it is possibly a wheat allergy. My appointment is next week so I will have to see what he says.

 

You mentioned a rash in your earlier post.  Our DH guru "Squirmingitch" has said that some with DH do not test positive on the blood tests because the antibodies are in the skin.  I'm going from memory here but I'm pretty sure that's the gist of what she said.  You can search her posts if you want.  Since your rash was not diagnosed it may be the connection.  Mind you I am just speculating here.

 

Also, remember that Celiac is an Autoimmune Disease and your biopsy report does state that as a possibility.

 

Colleen

0

Share this post


Link to post
Share on other sites

Since my tTg IGA was positive, did I just have a false positive? Or is the positive possibly because of the rash? I guess I am trying to figure out if I have celiacs or not so I know whether I should always maintain a gluten free lifestyle.

0

Share this post


Link to post
Share on other sites

Welcome Shleya!

You have Celiac Disease. With positive celiac antibodies and increased lymphocytes on the sample taken along with history of symptoms -- not all of the the more than three hundred symptoms associated with Celiac Disease are digestive.

The testing is not perfect, nor are the doctors that take the samples during endoscopy -- looks like a single sample was taken rather than the 6-8 recommended for Celiac Diagnosis because damage can be spotty -- until of course it progresses and destroys all of your villi.

0

Share this post


Link to post
Share on other sites

I agree with Lisa. With a family history of celiac disease, and a positive celiac disease test - it is celiac disease.  :(

 

The tTG IgA can have false positives but they are rare (5%) and occur in weak positive results whereas your results are over 7 times the normal range - not weak at all.  

 

The biopsy is not specific to celiac disease, There are many other disorders that cause damage to the intestine besides celiac disease. Also, there is a high false negative rate in the biopsies because the damage can be spotty and missed... I don't know why they call it the "gold standard" for diagnosing celiac disease. It just like any other diagnostic test, and a bit worse than some of the other blood tests in my opinion.

 

I hope you have a smooth transition into the diet.  Good luck!  :)

0

Share this post


Link to post
Share on other sites

Thanks for your advice everyone! I had my follow up with the GI doc. He said I have "mild celiacs disease" & he said I can quit eating "wheat" or continue and get follow up bloodwork in a year and see how I feel. Ha! So he gave me the option to go ahead and eat it until I am really sick!! Wow...I am glad I am more educated than the doc on celiacs. Thank goodness my daughter had a good GI doc. It's scary how uneducated some docs are about celiacs disease.

0

Share this post


Link to post
Share on other sites

Thanks for your advice everyone! I had my follow up with the GI doc. He said I have "mild celiacs disease" & he said I can quit eating "wheat" or continue and get follow up bloodwork in a year and see how I feel. Ha! So he gave me the option to go ahead and eat it until I am really sick!! Wow...I am glad I am more educated than the doc on celiacs. Thank goodness my daughter had a good GI doc. It's scary how uneducated some docs are about celiacs disease.

 

That's just.... Wow.   :blink:  :huh:  :(  Really disturbing.  I pity his patients who haven't put in the time to educate themselves like you have.... Wow.

0

Share this post


Link to post
Share on other sites

Thanks for your advice everyone! I had my follow up with the GI doc. He said I have "mild celiacs disease" & he said I can quit eating "wheat" or continue and get follow up bloodwork in a year and see how I feel. Ha! So he gave me the option to go ahead and eat it until I am really sick!! Wow...I am glad I am more educated than the doc on celiacs. Thank goodness my daughter had a good GI doc. It's scary how uneducated some docs are about celiacs disease.

 

I wish I was surprised :(

 

and very glad you are more educated than your doc on this one :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,435
    • Total Posts
      930,559
  • Member Statistics

    • Total Members
      63,867
    • Most Online
      3,093

    Newest Member
    vprovenzatn
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thank you for posting this I've never been to South America, it's the only continent, bar the poles, I've yet to visit. It's really nice to read that my gluten sensitivity hasn't ruled it out. Maybe I'll get to the land of Luis Suarez yet!
    • I know this post is a year ago... however it is still on the first page of the travel section!  I am from Uruguay, (South America) and I can answer this question for people that may look at it in the future. As a South American -  I can say that the cuisine varies greatly.  In cities, you shouldn't have any more than the normal amount of difficulty finding food.  For example, in Montevideo, the city I am from, you'll have no problem finding dedicated entire Celiac stores.  Meat is a large part of restaurant menus, so parilladas (similar in theory to steakhouses, would be very easy to navigate).  Uruguayans do eat a lot of pastries, and just like in the states... Most mainstream bakeries are not gluten free, but like I mentioned there are places that specialize.  In Uruguay, there is knowledge of Celiac and a large health awareness.  Some of the foods can be costly, cost of living in general is not low. In large swaths of South America, the foods you mentioned - Potatoes, rice, meat, etc are abundant, as are fresh fruits and veggies.  Avoiding corn does make it tricky.  Peru can be a great place for non-gluten eaters. Peru uses very little gluten (they are the original quinoa eaters) but there is a lot of corn in the diet (and since you are corn sensitive, that would be a food you would need to navigate). Latin America spread over two continents! In this area you will find a great variety in cultures, cuisines, and knowledge of celiac.  There is no reason why If you want to experience Latin America, that you have to rule out an entire region of the world because of Celiac.  Navigating it will be different, but it is doable!
    • Recently diagnosed last week does the pain ever get better??
    • George, i am sorry that you are not feeling well!  ☹️  I am not a doctor, but just trying out drugs to stop your symptoms just seems like a band aid  approach.  It sounds like he suspects IBS which is really, in my opinion, "I be stumped".  Has inflammatory bowel disorder (IBD) (more lovely autoimmune disorders) been ruled out?  This includes both Crohn's and Colitis.  My niece was diagnosed with Crohn's finally with a pill camera after all other tests were given.  The damage was not within reach of any scope.  I am just throwing out suggestions.  Hopefully, you and your doctor will figure it out soon!  
    • Celiac disease is an autoimmune disease that happens to have a known trigger -- gluten.  Flare-ups develop  (antibodies) causing damage. Not just in the small intestine, but systemically.  One gluten exposure can cause antibodies to increase for days or months!   Antibodies are being measured during the celiac blood tests.   If there is no gluten exposure, there will be no antibodies.  These antibodies can come down in some people in as little as two weeks.  Recommendations require gluten 2 to 4 weeks daily for the biopsies taken via endoscopy in order to be sure to catch damage, but 8 to 12 weeks for the blood tests.   The endoscopy is considered the "gold standard" in helping to diagnose celiac disease, but there are other things that can damage the small intestine.  So, the blood test helps solidify the diagnosis.   So, if you want a good result on your endoscopy, you need to be eating gluten daily for two week prior at a minimum.  I know it is tough and you are feeling sick.  Wish there was a better way to catch active celiac disease.    
  • Upcoming Events