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

How Long Can I Be Gluten-Free Before It Affects Biopsy Results?


rachel-gf

Recommended Posts

rachel-gf Newbie

My question for all of you is: How long can I be on a gluten-free diet before it would affect my biopsy enough that celiac disease could no longer be detected?

I am trying to get a biopsy but it is taken longer than I expected.

History: Several years ago, I suspected I had a wheat or gluten sensitivity of some sort, and reduced (but did not eliminate) gluten completely from my diet. In fall 2009, I decided to go through with testing given a family history of celiac disease and autoimmune problems. So I went on a high-gluten diet for several months.

I did the Enterolab tests (result: active gluten sensitivity, 1 celiac allele, 1 gluten sensitivity allele) and Prometheus Celiac Plus panel (still waiting for results). After seeing the Enterolab results, my specialist doctor said that I should get a biopsy.

At that point, I was absolutely miserable (both GI symptoms, bloated, body weight had increased within 6 weeks by 6-8 pounds), anxious. And I went on a gluten-free diet. And I started feeling better quickly. I thought I could get a biopsy quickly, and that a few weeks of gluten-free wouldn't affect the biopsy results. To my surprise, the doctor in the city where I live now is offering me appointments in February!

The idea of going back on gluten is, well, sickening. How long can I stay on my gluten-free diet before my gut will heal enough that I might not diagnosed with celiac disease (if I do have celiac disease)? If I do need to start eating gluten again for the biopsy, how much and for how long? I know I have a gluten sensitivity and plan to keep gluten-free after the biopsy, so I want to do the biopsy now so that I can have that information should it ever become necessary without having to re-gluten myself again at some point in the future.

Many thanks, and a happy, gluten-free new year to all.


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

6-8 weeks, plus more time til your biopsy, is too long for an accurate biopsy.

There is no point of having a biopsy to look for Celiac, when you have been gluten free for over 2 months. If your Prometheus bloodwork is positive, esp for the most specific tests, then the combo of the gene+positive bloodwork+symptoms (and, improvement in symptoms) is enough to have you stay on the diet.

tarnalberry Community Regular

How quickly the gut heals varies from person to person. Some see distinct improvement in a few weeks, others take months or more. But I certainly wouldn't expect accurate results if you're gluten free for two months prior to a biopsy!

And, honestly, you don't need one. It's fairly old-school to rely on the biopsy as the only way to conclusively diagnose. You've got multiple positive tests - stool test, blood test, dietary test. I think three for three is a good enough indication that you should stay gluten free!

putman Newbie

Hey there, sorry about your diagnosis, but you know what? its really not bad at all. Once you eliminate whats making you sick you will feel like you have your life back. I want everyone to know that if you stop eating gluten and your symptoms DO NOT disappear rapidly... as was the case for me, please, please pickup the book "Life Without Bread" your answers lie in that book.

I had the genetic test done and sure enough had all the genetic markers for Celiacs and had all the wretched symptoms associated with it. Going Gluten-free DID NOT help me! What did help me was applying the theory from "Life Without Bread" by Wolfgang Lutz and Christian Allen. Its truly a life saver, and is clinically proven to work. Google it!

rachel-gf Newbie

Hi everyone,

Thanks for your replies. I really appreciate the support and advice! I've been gluten-free for 2.5 weeks now and am feeling SO much better.

I'm going to keep trying to get an appointment with this specialist doctor in my new city and see what he thinks. I'm also going to wait and see what my blood test says. In the meantime, I'm going to stay gluten-free because I just feel SO much better and was so sick before. If the doctor thinks I need to do another gluten challenge for the biopsy, maybe I will. The idea of starting to eat gluten again for some unbounded period of time is just so gross. And my biopsy may come back negative anyway and I will still know that gluten makes me sick.

I knew I had some gluten issue for a few years, and had eliminated let's say 90% of the gluten from my diet. Doing the gluten challenge really made it clear what a huge problem it is for me and is motivating me to get rid of the rest of the gluten.

Archived

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

  • 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 replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

    2. - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Have Tru Joy Sweets Choco Chews been discontinued??

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

    4. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    5. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,260
    • Most Online (within 30 mins)
      7,748

    MauraBue
    Newest Member
    MauraBue
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
×
×
  • 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.