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

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.

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.
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.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
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:

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 <_<
Rachel--24 Collaborator
Rachel--24
Posted
  • Author
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:

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%.

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.

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.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

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.

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

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.

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. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.