Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

my3kids

gluten-free Diet Before Biopsy

Rate this topic

Recommended Posts

My daughter was diagnosed approximately three weeks ago through ttg and IGA gliadin blood work which were indicative of celiac disease. I am now offically confused as my pediatrician said do the gluten-free diet and "let's see how she does". Now everything I've read says that the only way to definitively diagnose celiac disease is through biopsy and we should not go gluten-free until biopsy. She has an appointment with a pediatric GI doc in a few weeks. Do I go gluten-free or wait until the GI appointment? We have been gluten-free since the blood work (I have it too).

Also, just read a book by Dr. Peter Green, director of the Celiac Disease Center at Columbia University that states you don't need to use gluten-free lotions and shampoos as gluten in only damaging when ingested. What's the deal with this? Please advise.

Share this post


Link to post
Share on other sites

You may want to call the ped GI and tell his nurse your concerns. You do not want to go gluten free before the biopsy. See if they can push your appointment up.

It mainly depends on if you want to proceed with the biopsy (which can look for things other than Celiac).

Share this post


Link to post
Share on other sites

I am confused. My daughter was diagnosed approximately three weeks ago through bloodwork (ttg and IGA gliadin were positive for celiac disease). We have started a gluten-free diet but am now finding that we should not go gluten-free until diagnosed through biopsy. She will see a pediatric GI doc in a few weeks. Should I wait to see him before we go gluten-free or continue to be gluten-free and see what he says?

Also, I recently read in Dr. Peter Green's book Celiac Disease, A Hidden Epidemic, that gluten in only harmful when ingested and that it is not necessary to switch to gluten-free lotions and shampoos. Please advise if this is true. Thanks everyone for your continued guidance. I'd be lost without this website.

Share this post


Link to post
Share on other sites

Hi,

Quite frankly, the biopsy is overrated and sometimes inconclusive if not wrong. Personally, I would be happy with the blood work and get on with life. The only other things that a biopsy would pick up on are h-pylori or other irritations such as gastritis etc. Chances are all of what it might pick up on will be corrected with the gluten free diet. And typically in a child this young there is no real damage yet.

I would ask yourself this question...Would having the results of the biopsy cause me to do anything differently? If you have Celiac and your childs blood work is positve...quacks like a duck.

Good Luck..Paula (mother of 3, grandmother of 1 Celiac)

Share this post


Link to post
Share on other sites
I am confused. My daughter was diagnosed approximately three weeks ago through bloodwork (ttg and IGA gliadin were positive for celiac disease). We have started a gluten-free diet but am now finding that we should not go gluten-free until diagnosed through biopsy. She will see a pediatric GI doc in a few weeks. Should I wait to see him before we go gluten-free or continue to be gluten-free and see what he says?

Also, I recently read in Dr. Peter Green's book Celiac Disease, A Hidden Epidemic, that gluten in only harmful when ingested and that it is not necessary to switch to gluten-free lotions and shampoos. Please advise if this is true. Thanks everyone for your continued guidance. I'd be lost without this website.

You already have a diagnosis for Celiac through your daughter blood work. The biopsy may or may not confirm celiac, but it can determine the level of damage done to the intestines. She does have Celiac and she should be on the diet. You are doing okay, so don't doubt yourself. Children are resilient and they heal quicker than adults.

Gluten must be ingested to be harmful. Children especially, tend to put their hands and hair in their mouth. You want to exclude all possible exposure to gluten through shampoos and lotins.

I have the utmost respect for mothers of celiac children. It's much harder than being an adult with Celiac. Quick heath to your daughter.

Share this post


Link to post
Share on other sites
Hi,

Quite frankly, the biopsy is overrated and sometimes inconclusive if not wrong. Personally, I would be happy with the blood work and get on with life. The only other things that a biopsy would pick up on are h-pylori or other irritations such as gastritis etc. Chances are all of what it might pick up on will be corrected with the gluten free diet. And typically in a child this young there is no real damage yet.

I would ask yourself this question...Would having the results of the biopsy cause me to do anything differently? If you have Celiac and your childs blood work is positve...quacks like a duck.

Good Luck..Paula (mother of 3, grandmother of 1 Celiac)

thanks for the info. I am an RN and feel that based on my history and her bloodwork, there may be no reason for the biopsy. Is there another disease that would cause a postive ttg? (her level was really borderline but she has basically stopped growing at 8 years old).

Also, what about the lotions and shampoos - any insight?

Share this post


Link to post
Share on other sites

(I merged the two threads together since they were identical)

There is a lot of differing opinions on the "personal care" products. If it is anything that you could ingest by chance, some feel its worth it to keep it gluten free. Some people only use gluten-free products. Others don't use gluten-free products. Its a personal decision, but for some, it makes a world of difference.

Share this post


Link to post
Share on other sites

The only problem with not getting a biopsy is that it is harder to get a DR's note. If your Dr is willing to give you one without the biopsy, no problem. You need that Dr note though for both the insurance and school. I made the mistake of going on gluten-free diet before diagnosis, now the insurance won't cover the extra yearly tests and no GI Dr will take my daughter or I. I can't put us back on gluten because part of my many symptoms included seizures....

Anyway, I would check with both docs before deciding for sure!

Share this post


Link to post
Share on other sites
thanks for the info. I am an RN and feel that based on my history and her bloodwork, there may be no reason for the biopsy. Is there another disease that would cause a postive ttg? (her level was really borderline but she has basically stopped growing at 8 years old).

Also, what about the lotions and shampoos - any insight?

One of the major problems with the blood tests and biopsies is that they are not 100% accurate.

Especially in children! Most test negative until the damage is severe. Unfortunately the labs are known for not being very accurate either.

My children were all tested traditionally-bloodwork/biopsy. My son was negative at 10 yrs old..much, much worse at 17 and hugely positive! When his son showed horrible symptoms at a year old the pediatrician did the blood work which was negative. Again, horrible symptoms...pediatrician said he believed that the child had it...he is now gluten free and great.

I went thru Enterolab for myself. I trust their results as well.

My eldest daughter cannot use certain skin care products. She has Celiac and what seems to be a soy intolerance. We believe that the skin issues have to do with the soy though. The rest of us do not have issues with skin care products.

Ironically, I too am an RN. I think that it makes it worse when dealing with our families. We know too much and when you mix that with emotion....

Best Wishes, Paula

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,780
    • Most Online
      4,125

    Newest Member
    Starets
    Joined
  • Forum Statistics

    • Total Topics
      112,054
    • Total Posts
      956,606
  • Who's Online (See full list)

  • Forum Discussions

    The EMA test is the most expensive of the celiac blood tests because it is not machine run, but done by humans.  A lab mistake could have been made.  With negative genes, the rest of the panel and symptoms eliminated, chances are you do not have celiac disease, but you can always get retested in six months, if you have symptoms or think celiac disease could be an issue.   Making dietary changes can have adverse reactions to anyone.  Consuming too much of a good thing can easily make you sic
    Hey there ! hope all is well for you.  I’ve been struggling with all sorts of tenidinitis and vertigo issues so I haven’t been on the computer much, but I would love any advice if possible. I have been on a very strict gluten free diet for 6 or 7 months. Still have low iron and just got results back. Would love your opinion. I prepare all food myself except once where I was likely glutened. I am seeing haematologist next week, but I was wondering what you think. Parasites have been eliminat
I found this on celery allergy: https://www.mayoclinic.org/diseases-conditions/food-allergy/symptoms-causes/syc-20355095  
  • Blog Entries

  • ×
    ×
    • Create New...