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. Hmart
      - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is this celiac?

      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 1...
    2. knitty kitty
      - knitty kitty replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

      @Trish G, I like dates, they have lots if fiber as well. But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small...
    3. knitty kitty
      - knitty kitty replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

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

      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines. Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured...
    4. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement. Thanks again
    5. Wheatwacked
      - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      If you were wondering why milk protein bothers you with Celiac Disease. Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,345
    • Most Online (within 30 mins)
      7,748
    rolland mcclay
    Newest Member
    rolland mcclay
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Hmart
      Is this celiac?

      By Hmart · Posted

      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      Fiber Supplement

      By knitty kitty · Posted

      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      ttg iga high (646 mg/dl) other results are normal

      By knitty kitty · Posted

      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
×
×
  • 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.