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 Celiac.com!
    eNewsletter
    Donate

Biopsy Or Not?

Rachel--24

Recommended Posts

Rachel--24 Collaborator
Rachel--24
Posted

I gave my doctor my Enterolab results today and he accepts them as a diagnosis and was very apologetic for all I've gone through the past few years. Apparantly I'm the first patient he's ever had with this so he's wanting to do everything right. He was wanting me to get a biopsy but isn't this kinda useless since I don't have the Celiac gene? Also I've been mostly gluten-free for almost 4 months now...except for supplements and non-food sources. I think he was mostly concerned cuz I had a positive ttg but wouldn't that only indicate damage in someone with celiac disease? Anyways I'm more concerned about the malabsorption then anything else....Is there any point in having a biopsy done now? If anything I'd only want to have an endoscopy or colonoscopy done just to make sure nothing else is going on but I would think the chances of a positive biopsy would probably be slim to none.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted
I think he was mostly concerned cuz I had a positive ttg but wouldn't that only indicate damage in someone with celiac disease?
The tissue transglutamase test is highly specific for celiac disease, so if you're results were positive than you would most likely have celiac disease. If you have been mostly gluten-free for 4 months than a biopsy could come back false negative. You would have to go back on gluten for a few months if you wanted to damage the villi, but I don't think this is necessary if other tests have been positive. Some doctors, like mine do think it is necessary and I had to knowingly eat gluten for about 2 months. The biopsy does 100% prove that you have celiac disease if it is positive that is why many doctors want it done.
Link to comment
Share on other sites
KaitiUSA Enthusiast
KaitiUSA
Posted

I personally would not bother with a biopsy. It would be useless at this point since you have been gluten free for so long. You would have to get back on gluten for 3 months.

tTG is indicative of damage in the intestines.

Link to comment
Share on other sites
Rachel--24 Collaborator
Rachel--24
  • Author
Posted
The tissue transglutamase test is highly specific for celiac disease, so if you're results were positive than you would most likely have celiac disease.

<{POST_SNAPBACK}>

I don't have the main gene for celiac disease so I'm thinking there can't be visible damage even if I were still eating gluten. There is no way I'm going back on gluten to find out for sure and my doctor doesnt want me to do that either since I was in very bad shape before I started this diet. He just wants me to do the biopsy anyway....I'm still kind of in the dark about the sensitivity vs. Celiac thing. I think if I had the Celiac gene I'd do the biopsy but since I don't I sorta think it would be useless. I'm not normally scared of tests but that ones seems a little scary to me. :unsure:

Link to comment
Share on other sites
Carriefaith Enthusiast
Carriefaith
Posted

I guess this a decision that only you and your doctor can make. Is there any way that the gene test was not accurate? Also, I believe that I have heard that a small percentage of people can have celiac without the gene, but I could be wrong (someone correct me on this if I am wrong).

I'm not normally scared of tests but that ones seems a little scary to me.
It's not that bad, the colonoscopy is WAY worse in my opinion, give me an endoscopy any day! I was awake for both <_<
Link to comment
Share on other sites
Rachel--24 Collaborator
Rachel--24
  • Author
Posted
It's not that bad, the colonoscopy is WAY worse in my opinion, give me an endoscopy any day! I was awake for both  <_<

<{POST_SNAPBACK}>

Wow...I thought the endoscopy was painful if they don't sedate you. I wouldn't try it awake for sure :blink:

Link to comment
Share on other sites
tarnalberry Community Regular
tarnalberry
Posted
I don't have the main gene for celiac disease so I'm thinking there can't be visible damage even if I were still eating gluten. There is no way I'm going back on gluten to find out for sure and my doctor doesnt want me to do that either since I was in very bad shape before I started this diet. He just wants me to do the biopsy anyway....I'm still kind of in the dark about the sensitivity vs. Celiac thing. I think if I had the Celiac gene I'd do the biopsy but since I don't I sorta think it would be useless. I'm not normally scared of tests but that ones seems a little scary to me.  :unsure:

<{POST_SNAPBACK}>

You don't have the *main* celiac gene, but the genes that have been identified to correlate to celiac so far only cover 90-95% of cases, NOT 100%.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted
Is there any way that the gene test was not accurate?

Yes, I have heard of that before. Doesn't usually happen but I believe that gluten intolerance can turn into celiac even without the gene. That would make sense too.

Link to comment
Share on other sites
Carriefaith Enthusiast
Carriefaith
Posted
Wow...I thought the endoscopy was painful if they don't sedate you. I wouldn't try it awake for sure

I was partially sedated for both, but I was awake and fully aware of everything. Sedation was an option for the endoscopy, some people do it with no sedation at all.

Link to comment
Share on other sites
Rachel--24 Collaborator
Rachel--24
  • Author
Posted

Thanks everyone,

I guess I'll just wait and see what the GI says. Believe it or not with all I've gone through the last few years I saw every specialist (more than once) except the GI doc. He was the LAST specialist I was sent to and only cuz I demanded it since I had lost so much weight and wasnt digesting my food. I saw him in April and all he did was send me for an AIDS test :unsure: What the heck??? At least I now know I'm not sick from AIDS. I was scheduled for the endoscopy/colonoscopy though but due to some confusion about the preperation (I drank the wrong stuff and got sick :rolleyes: ) the test was cancelled. I wish that wouldn't have happened because at that time I'd only been on the diet 3 weeks.

Link to comment
Share on other sites
skbird Contributor
skbird
Posted

About the gene test being accurate - one of the genes I have is mostly associated with people of Medeterranean descent and since I'm 3/4 Dutch and the rest Welsh/Scot, I wrote in and asked if this could be a mistake. The reply I got was no - and that anyone in Europe could have crossed over a gene at some point. As you can see from my av, I don't *look* like I have any Medeterranean in me at all. :)

So I don't know if it's a mistake or not, in either of our cases. You certainly sound like you have Celiac. And an endoscopy probably wouldn't show damage at this point, though it still could - and at any rate it might be good just to check out everything else to make sure nothing else is up in your gut. It's a good idea.

Take care

Stephanie

Link to comment
Share on other sites
Guest nini
Guest nini
Posted

Just my .02 cents... I personally do not think at this point the biopsy is necessary, it's not going to change anything one way or the other as far as you having to be gluten free. You know you have to be gluten free. IF you do not get any better after say 6 months with absolutely NO improvement, then look into further testing to see what else is wrong... But whether or not you have the biopsy is not going to change how you treat this. Strict Gluten Free diet period. Sounds like your dr. is just trying to do a CYA (covering his butt) after not getting it right before.

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      120,986
    • Most Online (within 30 mins)
      7,748
    Mazzamaloo
    Newest Member
    Mazzamaloo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • TessaBaker
      Hair loss

      By TessaBaker · Posted

      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      Thiamine supplementation

      By Celiac16 · Posted

      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
    • trents
      Waiting for urgent referral.

      By trents · Posted

      Welcome to the forum community, @Fluka66! Did you realize that the vast majority of all canned soups use wheat starch as a thickener, including such common commodities as Campbell's tomato soup?
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Hello. Any help would really steady my nerves right now. I realised recently that certain food left me in agonising pain so eliminated from my diet. I also have a swollen lymph node. My very caring Dr did some blood tests and I went back the other day to see another equally caring Dr . She looked at the test results one result has come back with something wrong. It came very fast so I'm afraid I didn't catch what it was. Anyway the urgent referral to ENT. She did say as I had already eliminated gluten it wouldn't say anything on the results and neither Drs nor I were prepared to reintroduce gluten . I've just had some tomato soup and again in agony only thinking this must have aggravated maybe existing problems. Does anyone know what I'm facing now ? My swollen lymph node , pain when eating gluten and lactose and I'm assuming the acidity of tomatoes triggering pain.  I'm trying to stay calm and to be honest I've been in intolerable pain at times rendering me unable to stand up straight but I've always just got on with it . Guess I'm reaching out and would really appreciate any wise or unwise words at this stage. Wishing you all the very best as you live with this illness. Fluka66  
×
×
  • Create New...