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

Pondering Skipping Biopsy...

glutenfreejd

Recommended Posts

glutenfreejd Newbie
glutenfreejd
Posted

Hi everyone, I'm new to the forum. A few months ago I had a positive blood test for celiac and was referred to a specialist for a confirmation biopsy. In the meantime I went gluten free as my symptoms had become so bad I was having difficulty working. The other day I got a call back from the clinic with my appointment date, but now I'm not sure I want to do it as I would have to start eating gluten again for it to be accurate. Since I've been dating gluten free I've noticed I've become even more sensitive, if I accidentally eat something a bit contaminated I have a pretty strong reaction. Is there any benefi to the biopsy that would compel me to go through this process I imagine to be so horrible? Thanks:)

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

Celiac.com Sponsor (A8-M):


Katrala Contributor
Katrala
Posted

Most doctors will tell you to not go gluten-free until the biopsy.

The good thing about the biopsy is that you'll have a baseline and any other problems can be discovered.

Also, you'll have a 100% diagnosis.

If you're OK with not having an official diagnosis (you may find a doctor who will diagnosis without, though,) then go ahead and skip it.

From personal experience, I was glad I had it. But there are many people here who didn't and are still happy with their choice.

MitziG Enthusiast
MitziG
Posted

Dr Alex Fasano is considered THE leading expert on Celiac Disease. He recently stated this in Gluten Free Living Magazine:

"I was the one who said the gold standard was the biopsy. Now

I am saying I was wrong.

The blood tests are extremely accurate at showing a positive Celiac. False negatives- very common. False-positive? nope.

You have Celiac Disease. You can have a biopsy, but, since you have been gluten free for awhile, even if you go back on it for weeks, or months...there may not be enough damage to show positive in a biopsy.

They may do the biopsy, and not take enough samples, or not take them from the right spots, and miss the damage. Celiac is often patchy.

Or they may biopsy damaged areas, and the lab tech who reads the samples may not be experienced, and may miss it.

So...if you get a negative biopsy- what will you do? Probably start questioning yourself. Doctors cant see beyond lab results generally, and they will most certainly dismiss it, and say all of your problems are not from Celiac, and write you a rx for antidepressants.

That said, I had the biopsy, and it was positive, and I needed that confirmation to resolve to stick with the diet. But I also had not been gluten free when I had it.

Not saying you shouldn't do it...but be prepared for the very real likelihood that it will deny what is most definitely true.

Lisa Mentor
Lisa
Posted

Often times, a biopsy can find additional issues, which otherwise might go unresolved. And, with digestive concerns for a period of time, a biopsy can look for the level of damage.

I'm certain you will get opinions from either directions. Take it all in and make the choice you are most comfortable. :)

MitziG Enthusiast
MitziG
Posted

Often times, a biopsy can find additional issues, which otherwise might go unresolved. And, with digestive concerns for a period of time, a biopsy can look for the level of damage.

I'm certain you will get opinions from either directions. Take it all in and make the choice you are most comfortable. :)

This is a very valid point. I am not against biopsy, by any means. I just worry that people feel they aren't a "real celiac" without that dang biopsy report!

luvs2eat Collaborator
luvs2eat
Posted

Apparently my blood test was SO positive that my doctor told me biopsy wasn't necessary! I ended up having one several years later for heartburn/GERD issues and there were celiac indications in there, but as it turned out, the biopsy really wasn't necessary. The blood tests told me what I needed to know... NO MORE GLUTEN FOR ME!!

glutenfreejd Newbie
glutenfreejd
Posted
  • Author

Thanks everyone, that was really helpful. No test for me!! I don't feel like a slip of paper will make me feel any better. I've been feeling so great, I don't want to mess with it. Thanks again!!

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

Celiac.com Sponsor (A8-M):


Mom-of-Two Contributor
Mom-of-Two
Posted

My bloodwork was also super positive, I see the GI this Thursday and am also thinking I may not do a biopsy. If you are feeling better, I would hate to see you reintroduce gluten :( sounds like you have your answer!

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 Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their...
    2. Trish G
      - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease? Thanks!!!
    3. kpf
      - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal

      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease: fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches n...
    4. knitty kitty
      0

      Gastrointestinal Beriberi

    5. knitty kitty
      - knitty kitty replied to Rejoicephd's topic in Related Issues & Disorders
      4

      Basic metabolic panel results - more flags

      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency. Your symptoms seem really familiar. Malabsorption is a real thing that happens with Celiac. A multivitamin is not going to prevent nor correct nutritional deficiencies. Doctors do not recognize nutritional deficiency symptoms. Gastrointestinal Beriberi is not recognized...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,333
    • Most Online (within 30 mins)
      7,748
    jlcvt
    Newest Member
    jlcvt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Fiber Supplement

      By trents · Posted

      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      ttg iga high (646 mg/dl) other results are normal

      By kpf · Posted

      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      Basic metabolic panel results - more flags

      By knitty kitty · Posted

      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
×
×
  • 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.