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

Question About Biopsy

elbar

Recommended Posts

elbar Apprentice
elbar
Posted

I had an endoscopy and biopsy last week and am now awaiting the results. The doctor said initially, after doing the endoscopy, that he didn't see any evidence of celiac disease. What I would like to know is, will the biopsy show anything that the endoscopy doesn't show? Just what does a biopsy look for and how long do you have to have been on a gluten challenge for the biopsy to tell anything?

I was diagnosed with celiac disease 62 years ago and after 8 years on a special diet, my family was told I was cured. Now I know that there is no cure but my g.i. doctor said he doesn't think I ever had celiac disease! I'm sure my parents would have disagreed with him!

I'm pretty sure I have Dermatitis Herpetiformis because I do have all the symptoms of classic DH but in all these 54 years, I have not had intestinal problems associated with celiac disease. If I had damaged my intestines over these 54 years, will the biopsy be able to see that? My next step is a skin biopsy. One of the reasons the doctor is so sure I don't have celiac disease is that I feel great on a gluten diet but as soon as I went on a gluten-free diet, I started to feel miserable with constant stomach problems. I'm not sure what the answer will turn out to be, but to quote my doctor, "I'm an interesting patient".

Any advice will be welcomed. Thanks in advance.

elbar

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

Celiac.com Sponsor (A8-M):


floridanative Community Regular
floridanative
Posted

I'm no expert but I thought the endoscopy was just the means by which the biopsy was done. The tissue taken is sent to a lab for testing and they if it shows your villi are damaged, you should get a diagnosis of celiac disease.

More knowledgeable people will post soon I'm sure and I have my own question for them. I just found out I had some blood test result that indicates a possible genetic problem that can cause my iron def. anemia so I'm seeing a hemotologist before doing the biopsy. But when I get the biopsy, can the villi show damage if gluten has only been affecting me for just over a year? If I do have celiac disease I know it was triggered to kick in last year when I thought I was dying from complications from shingles. I was never in danger of dying but I certainly thought I was. After I got better last summer, I never felt really good again. It took me until this spring to get the dx for anemia. So I guess I'd like to know if my villi could show damage in such a short time. If not, I don't see the purpose of doing this test right now. Any ideas?

Thanks in advance for your help. :)

Tiffany M.

jerseyangel Proficient
jerseyangel
Posted

I had my endoscopy done in June. The Dr. can see inflammation as he did in mine. Good luck with your results, elbar!

KaitiUSA Enthusiast
KaitiUSA
Posted

Usually when they do an endoscopy they will do a biopsy and take samples to see if there is damage.

However, endoscopies and biopsies can rule celiac in but not out. You see if there is sporadic damage they can easily miss it and if you are in early stages and there is no damage yet then it can also show negative.

An endoscopy usually only looks at the first part of the intestines....but there could be damage elsewhere in your intestines...your intestines are huge and they can easily miss if there is damage. A biopsy is a hit and miss as well because they only take a few samples in certain places ofyour intestines and again they miss alot and there can be damage elsewhere...you should also have a blood test done.

If you were diagnosed before then you have it I would say...there is no cure. Your symptoms may have been better at some point but that means nothing when it comes to celiac. You don't have to have any specific symptoms...everyone varies with that ...some people get none at all.

You may want to get a complete panel blood test for celiac done. You do need to be eating gluten through all testing. You should eat equal to 2-3 pieces of bread a day for 3 months before testing.

You also may want to get a biopsy of the skin to see if you have DH.

skoki-mom Explorer
skoki-mom
Posted

Hi there!

It is definitley possible to have damage and not have GI symptoms! I'm a case of this. I got screened because my sis was Dx with celiac disease. Well, I definitely have celiac disease on my bloodwork and my biopsy, and in fact I have substantial damage. I was pretty surprised because I've never really been sick with it a day in my life. Sure, I got gas once in a while, but I think it's safe to say that even people without celiac disease get gas on occasion! I never had any issues that would make me think I had a problem with my intestines.

The biopsy looks at your villi under a microscope, and they are specifically looking for flattening of the villi, which is the mark of celiac disease. I have seen my pathology, and I had biopsies taken from all 3 parts of my small bowel...the duodenum, jejunum and ileum.

Just for what it's worth, I'm 35, so I've been doing damage for Lord knows how long, and if my sister hadn't become ill, I would never know I had this problem. My GI says there is no way to know if I would have ever shown symptoms of celiac disease, or if I just would have gone through life never knowing. However, the risks associated with untreated celiac disease were enough for me to go gluten-free quite willingly. I have 2 terrific kids and I plan to live a long and healthy life with them!

Wandering Hermit Contributor
Wandering Hermit
Posted

Well I just got back from an endoscopy about 2 hours ago.

It went SO much better than the last time! :)

The squeeky wheel gets the grease. I complained about how my previous endoscopy did not involve enough sedation. This time they doped me up so good that I don't remember any of it! :D Not the part where you bite down on that mouthpeice, or the throat spray, or getting the scope past the mouth, nothing!! I am so happy that they finally did it right. I could do this any old day. And I might be doing it again because if the biposy comes back normal it will be time for a gluten challenge and then possibly another biposy.

And now if you will excuse me I am going to go enjoy the rest of my drug-induced stupor.

floridanative Community Regular
floridanative
Posted

And now if you will excuse me I am going to go enjoy the rest of my drug-induced stupor.

<{POST_SNAPBACK}>

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
Well I just got back from an endoscopy about 2 hours ago.

It went SO much better than the last time! 

I complained about how my previous endoscopy did not involve enough sedation. This time they doped me up so good that I don't remember any of it!  :D Not the part where you bite down on that mouthpeice, or the throat spray, or getting the scope past the mouth, nothing.

<{POST_SNAPBACK}>

Wow! No wonder you were dreading the scope so much! I didn't know you were partially awake last time! :o

I cannot even imagine being awake for all that... :blink:

I remember the mouthpiece and getting sprayed but right after that I was out. I would have been terrified if I had even *seen* the tube....let alone feeling them put it down my throat. The sedation made it so easy....it was like taking a really good nap...I would do it again just for the deep sleep! :D

Wandering Hermit Contributor
Wandering Hermit
Posted
Oh I'm so relieved to hear you had a good experience. I for some reason thought I had to be awake and was totally dreading it. Now I can stop worrying about it for the next five weeks.

Enjoy your stupor! :D

<{POST_SNAPBACK}>

Just be sure to tell them that you wish to be well-sedated.

I am so happy because I was really dreading it - and I literally remember nothing at all about it.

Wandering Hermit Contributor
Wandering Hermit
Posted
Wow! No wonder you were dreading the scope so much! I didn't know you were partially awake last time!  :o

I cannot even imagine being awake for all that... :blink:

I remember the mouthpiece and getting sprayed but right after that I was out. I would have been terrified if I had even *seen* the tube....let alone feeling them put it down my throat. The sedation made it so easy....it was like taking a really good nap...I would do it again just for the deep sleep!  :D

<{POST_SNAPBACK}>

I would say my first time I was fully awake. It was a truly awful experience. 5 minutes of continuous gagging. :o So it is nice to finally see what it is like when it is done right. It was a piece of cake.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748
    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, 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.