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

Am I A Bad Mom For Not Letting Them Biopsy My 16 Month Old?

Stacielovas

Recommended Posts

Mtndog Collaborator
Mtndog
Posted
Certainly are not a bad mom not wanting to do the biospy. I would suggest doing the Celiac Panel (blood work)...if that comes out positive then your child has celiac. There is no such thing as a false positive celiac panel (blood work) however there are many false negative biospies.

That said:

this is what is the most recent being taught in top teaching children's hospitals:

Just recently a GI specialist presented a session on Celiac disease. They have reclassified celiac disease into 3 categories.

Symptomatic Celiac Disease where they have positive blood test & manifest lesions in the intestines.

Silent Celiac Disease where there is minimal symptoms with damaged mucosa & positive blood test.

Latent Celiac Disease where they have positive blood test results but normal mucosa in the GI tract.

The people with Latent Celiac given the "right" circumstances, will develop mucosal changes at some point in time. This could be a virus, stress, or some other event they don't even know (much like what triggers type 1 Diabetes).

If a person has a negative Celiac Panel Blood Test result then there are other conditions to look for BUT a positive Celiac Panel Blood Test puts a person in one of the 3 above categories.

The golden standard for diagnosis still remains the Biopsy. However the goal is to diagnose without invasive procedures. (does this mean to forgo the biopsy?)

AGAIN

There are no false negatives with the Celiac Panel Blood Test. A positive Celiac Panel Blood Test means you have one of the 3 types of celiac.

Woody- Can you show the research that backs up where you got this info? Thanks!

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

Celiac.com Sponsor (A8-M):


Woody6 Newbie
Woody6
Posted

Open Original Shared Link

the link above tells you of the three types of celiac. Only ONE TYPE will provide the lesions within the biospy that is required for the general golden standard of diagnosis. Doctors are considering less evasive methods to diagnosis by considering possibly forgoing the biospy especially since that is the last stage or the acute stage of Celiac....my question is...why wait to get to that point when a positive celiac panel is enough?

I was at the teaching hospital during the actual lecture and they specifically stated there is no such thing as a FALSE POSITVE in a celiac panel HOWEVER there are tons of FALSE NEGATIVES in a biospy. that part I can only tell you what was said. I cannot give you an internet cited source. That said....all three types of celiacs all have a positive celiac panel...if there is a positive celiac panel then the person has one of the three types of celiac. Only one type of celiac the symptomatic type will produce the lesions in the intestines...the other two will not. Eventually, however, a person with a positive celiac panel will produce the lesions.....eventually....that does not change the fact that they still have celiac disease without the lesions. This is the point I'm trying to stress to the celiac community.

The biopsy remains the golden standard of diagnosis ONLY BECAUSE living a gluten free diet is very restrictive and lifelong.

Why suffer through a biopsy when it has a tendacy for false negatives when simply going gluten free and all aliments are elivated would be enough.

Just my opinion.

To make a very long story short.....

I have one child that had the lesions on the intestions and has the golden standard of diagnosis. I have another child that did not have the lesions on his intestions so he got a false negative.

BOTH children had positive celiac panels. BOTH children have a Celiac Diagnosis

Both children are gluten free and doing wonderful.

Matter of fact they just got their annual blood work done at the children's hospital just this past Monday. Now that they have been gluten free their Celiac Panel should be negative. That does not mean they no longer have Celiac...that means we have effectively removed all gluten from their diet. Just thought I'd clarify that in case it cause confusion.

Celiacs will be required to have celiac panels done annually and sometimes even biopsies if the panel is still showing it is elevated after being gluten free for a year or there was lesions in the intestions during the first biospy. The doctor will want to evaluate wether or not the intestines is healing or has healed if there were lesions in the prior year biopsy or if the celiac panel is still positive after a year of gluten free to see if lesions have since developed if there were no lesions in the last biopsy...a trip to the dietician is in order to see where those hidden glutens are that is being ingested unknowinglyl.

if the celiac panel is negative a year after diagnosis and there was no lesions in the first biospy a year ago then there would be no need for another biospy that i'm aware. At least that is my current understanding regarding the annual check ups of Celiac Patients in our Children's Hospital.

g1gg1e Rookie
g1gg1e
Posted
Matter of fact they just got their annual blood work done at the children's hospital just this past Monday. Now that they have been gluten free their Celiac Panel should be negative. That does not mean they no longer have Celiac...that means we have effectively removed all gluten from their diet. Just thought I'd clarify that in case it cause confusion.

Thanks for the info! OUr panel came back negative but the Gene test came back + . I told them that being gluten free ( I think the GI didnt think I really had her really gluten-free) that the test would not come back + other then the gene test. We worked vary hard and took gluten out vary early ( at age 12 weeks) because it was vary obvious that this was the issue. We felt feeding gluten and damaging her , have to do a feeding tube switching formula when we again KNEW what the issue was just to quilify a test was not in the best interest of our child. What damage would it do if we kept her on it? S

We are going to get a full panel blood test done on our 4.5 yo at her 5 year appointment ( she is gluten-free/CF for right now). She will be eating gluten quite a bit for a few months before the test because unlike her sister she has lesser symptoms and we feel she can do it for the time needed but she will NOT be getting the Endo.

Hang in there! kids at this point don't really know they are eating different then most. There will always be time to feed them gluten later and get the testing done when they are more developed. Esp if you already see a huge difference then thats what really counts!

Dr.s mato : First do no harm!

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.