Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

So Confused With Labs Vs Biopsy


Mel75

Recommended Posts

Mel75 Newbie

Biopsy reads-

Small bowel biopsy showing preserved villous architecture with moderate numbers of lymphocytes.

My GI doctor tells me it's Celiac but wants to run some blood work-

So all blood work is negative/normal including ANA panel, celiac panel and SED rate.

So the nurse calls me and tells me it's not celiac and stay on protonics twice a day. No need to go gluten free unless I just want to.

I have inflammation in my small intestines and erosive gastrophy. I'm just not sure I'm comfortable with no diagnosis of why?! The nurse said it could just be from acid.

I'm just confused as to what to do? I don't want the inflammation to get worse.

What would you do?

Thanks!!


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



Celiac.com Sponsor (A8-M):



ckd0822 Newbie

Were you gluten free when they did the blood work? If so, that can give a false negative.

cyclinglady Grand Master

Did you get a complete celiac panel or just the typical screening? Here is the complete panel:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

Exactly where and how many biopsies?

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I sound like a broken record, but I tested positive on only one of the celiac blood tests and yet biopsies revealed moderate to severe damage. Get copies of your records!

I hope this helps!

Mel75 Newbie

I have copies of my procedures, labs is there anyway I can attach them on here?

I was eating gluten and I'm not sure how many biopsies were taken? Would that be on the pathology report?

nvsmom Community Regular

 I copied the following from the World Gastroenterology Celiac Guidelines: Open Original Shared Link

 

The lesion in the duodenum/upper jejunum may be patchy, as a result of which it may be missed if there is insufficient mucosal sampling [25]. At least four biopsy samples must be taken—three from the second part of the duodenum distal to the papilla, and one from duodenal bulb. A negative histological diagnosis may justify a second biopsy in selected patients who have positive autoantibodies such as endomysial antibodies (EMAs).

Biopsy samples taken from the proximal duodenum above the papilla of Vater may have artifacts (e.g., stretching of villi) produced by submucosal Brunner’s glands, which may be falsely interpreted as flat mucosa.

Under light microscopy, the most characteristic histological findings in patients who are taking a gluten-containing diet are [15]:

  • Blunted or atrophic villi

  • Crypt hyperplasia

  • Mononuclear cell infiltration in the lamina propria

  • Epithelial changes, including structural abnormalities in epithelial cells

  • Intraepithelial lymphocyte infiltration

A series of well-designed studies by Marsh [15] made it possible to interpret the wide range of mucosal damage induced by gluten, with the celiac histological modifications being categorized as ranging from normal mucosa to completely flat villi. The modified Marsh classification [33,34] is widely used in clinical practice (Table 1).

 

Table 1 The modified Marsh classification of gluten-induced small-intestinal damage [33,34]

celiac-english-table-1.png

 

 

Celiacs will usually have villi damge in their intestines.  If you have celiac disease, you have early celiac disease or they missed the patchy damage. It can happen.

 

Because you had negative blood tests, it is less likely that you have celiac disease, especially if they ran the full panel.  If they only rand one or two tests, then chances are greater that it could be celiac disease.

 

Erosive gastrophy... Were you using any meds that could damage the stomach lining ad cause that?  I think it shows up in crohn's and colitis too.  Perhaps google the terms in your report and you may find my information to question your doctor with - you may fnd somethig that fits your situation if it isn't early celiac disease.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,839
    • Most Online (within 30 mins)
      7,748

    P John296
    Newest Member
    P John296
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dawn Meyers
      Hi I have celiac disease and the dermatitis herpetiformis rash Also other autommune diseases.  I have had bad side effects to all the vaccines I have had and now my Doctor wants me to have the pneumonia vaccine.  I am concerned because of some of the bad side effects I have had in the past example Hep B after shot couldn't  move arm for several months.  Flu shot and COVID was sick right after shot. Told not to get anymore. My lung is inflamed and have a cough I can't seem to get rid of. Very concerned 😟. 
    • knitty kitty
      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
×
×
  • Create New...