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

Will A Month Of Eating Gluten-free Make My Biopsy A False Negative? (also, Gliadin Question)

gfjayhawk

Recommended Posts

gfjayhawk Rookie
gfjayhawk
Posted

I may have celiac, according to my bloodwork. I went gluten-free about a month ago, and I feel much better now. But my children tested positive for gliadin antibodies, and my GP would now like me to be biopsied to see whether I have true celiac disease. (Her rationale is that if I truly have celiac, the kids definitely should go gluten-free even though only their gliadin antibody test was positive. If the biopsy is negative, I suppose that putting the kids on a gluten-free diet would be optional.)

Will a month without gluten mess up the biopsy results? How long do I need to eat wheat before I can get a valid test result? And, do any of you have experience with positive gliadin tests (the other antibodies in my children's panels were negative)? I'd prefer not to make the kids go gluten-free if I can avoid it, but OTOH I would hate to keep feeding them gluten if it's harming them. (At least there's no pressure... :o )

I've done a lot of reading, but haven't really found the answers I'm looking for. Thanks for any help you can give me!

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

Celiac.com Sponsor (A8-M):


gfjayhawk Rookie
gfjayhawk
Posted
  • Author

Just wanted to add that I've seen quite a bit in the literature about gliadin antibodies being associated with neurological and autoimmune disorders (as well as gluten intolerance). I've only had the opportunity to speak with non-GI doctors so far, but they didn't seem to have heard much about gliadin at all. What do your GIs say about gliadin, if you have asked them?

happygirl Collaborator
happygirl
Posted

The nutritionist from the Celiac Center at the University of Maryland spoke last year and said that a gluten free diet of only one week begins to affect the biopsy in some people.

So yes, you could get a false negative. If its a positive, its definitely a positive. But if its a negative, you won't know if its a true negative.

tarnalberry Community Regular
tarnalberry
Posted

there's no way to know for sure - it depends on how much damage you had, how fast you heal, where they biopsy, how they read it, etc.

quite frankly, I'd either insist on the biopsy for them (if you need a biopsy-generated diagnosis for some reason), or try them on the diet and see if there are any changes for them. the dietary challenge is a valid diagnostic test, if done properly (if they're not getting gluten anywhere).

gfjayhawk Rookie
gfjayhawk
Posted
  • Author

My main concerns with just changing their diet now are compliance (especially with my younger son), and that we wouldn't have an actual diagnosis. (That would probably only matter if I needed to take them to a GI later on.)

Do they give kids a general anesthetic for the biopsy? It seems like something that would be pretty scary for a child.

there's no way to know for sure - it depends on how much damage you had, how fast you heal, where they biopsy, how they read it, etc.

quite frankly, I'd either insist on the biopsy for them (if you need a biopsy-generated diagnosis for some reason), or try them on the diet and see if there are any changes for them. the dietary challenge is a valid diagnostic test, if done properly (if they're not getting gluten anywhere).

cruelshoes Enthusiast
cruelshoes
Posted
My main concerns with just changing their diet now are compliance (especially with my younger son), and that we wouldn't have an actual diagnosis. (That would probably only matter if I needed to take them to a GI later on.)

Do they give kids a general anesthetic for the biopsy? It seems like something that would be pretty scary for a child.

We had an endoscopy on son when he was 6. Honestly - it was harder on me than it was on him . He was not able to eat anything after midnight, and we got to the hospital at 6 am for a 7 am appointment. They put him out with laughing gas, and then put in the IV while he was under. He freaked out a little from the feeling of the laughing gas, but it was only for a few seconds until he was out. They offered us something to relax him beforehand, but we didn't think he needed it. If I had it to do over again, I would have taken them up on it. He got to choose a scent to put in his mask - he chose root beer. It was all done in an hour or so, and we were home before noon. He doesn't remember anything about the procedure itself because of the amnesia effect of the sedation.

I am a big proponent of getting the endoscopy to get a good diagnosis. The pictures we have of his intestines tell the story for us. My family/in-laws were very resistant to making him gluten-free until they saw the pictures. Even though he had no symptoms, the damage to his intestines was very clear, and quite dramatic. There will be no question later on when he is a teeneger whether or not he really has celiac. Also, if you decide to get a 504 plan or try to get gluten-free lunches from the school district, you will need a note from the doctor to do so. That would be much more difficult without a diagnosis behind you.

Others will disagree, but I think a biopsy is a wise way to go. Good luck with whatever you decide to do.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.