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Confusing Biopsy Results
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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!

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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.

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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?

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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

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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.

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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

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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.

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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.

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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!  :)

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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.

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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.

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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 :)

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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