Jump to content
  • Join Our Community!

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

Rate this topic

Recommended Posts

Hey all. New kid on the block here. You're my last hope!

I have been suffering for many years with gi distress, but in 2005 when my 38 year old sister died of breast cancer, my gi problems hit an all time high (chronic stomach pain, constipation, explosive belching, 24/7 heartburn, bloating/stomach distension). I have had colonoscopy, upper endoscopy, celiac blood work, cat scan, ultrasound. My endoscopy showed duodenitis and gastritis, but all other tests were normal. Until now.

My new doc had me do a stool test for gluten antibodies with Enterolab. The score was 63. Is this high?

Does anyone know what this means. Can I have celiac when all other tests are normal?

I'm very confused. I'm 5'6", 115 lbs. If I give up bread (and other gluten foods) I'll dry up and fly away.

PLEASE HELP!

Share this post


Link to post
Share on other sites
Hey all. New kid on the block here. You're my last hope!

I have been suffering for many years with gi distress, but in 2005 when my 38 year old sister died of breast cancer, my gi problems hit an all time high (chronic stomach pain, constipation, explosive belching, 24/7 heartburn, bloating/stomach distension). I have had colonoscopy, upper endoscopy, celiac blood work, cat scan, ultrasound. My endoscopy showed duodenitis and gastritis, but all other tests were normal. Until now.

My new doc had me do a stool test for gluten antibodies with Enterolab. The score was 63. Is this high?

Does anyone know what this means. Can I have celiac when all other tests are normal?

I'm very confused. I'm 5'6", 115 lbs. If I give up bread (and other gluten foods) I'll dry up and fly away.

PLEASE HELP!

Sorry I can't help with your Enterolab results (although I think it was good that the doctor is open and did suggest them). However, I just wanted to comment on the gluten free diet. If you are celiac or gluten intolerant the likelihood is that you will gain weight once you are rid of something that is irritating to your system. Also, I just yesterday read some medical documentation somewhere where they did a study and found that those that were overweight or obese even and were found to be celiac, actually gained even more weight on a gluten-free diet. So it can swing both ways.

Have you opted for the biopsy yet?

TracyB

Share this post


Link to post
Share on other sites
Sorry I can't help with your Enterolab results (although I think it was good that the doctor is open and did suggest them). However, I just wanted to comment on the gluten free diet. If you are celiac or gluten intolerant the likelihood is that you will gain weight once you are rid of something that is irritating to your system. Also, I just yesterday read some medical documentation somewhere where they did a study and found that those that were overweight or obese even and were found to be celiac, actually gained even more weight on a gluten-free diet. So it can swing both ways.

Have you opted for the biopsy yet?

TracyB

Thanks for your fast response TracyB. Biopsy is under consideration. I am so overwhelmed right now it's difficult to know what to do. I just want to be well. It seems like all of the traditional western medicine tests have given me nothing to work with. I'm thinking because the blood work was negative, the biopsy would also be negative. Do you know if one can be negative and the other positive?

Share this post


Link to post
Share on other sites

We would need to see the reference range for the Enterolab result.

Trauma and grief can certainly trigger all sorts of GI issues including Celiac and/or gluten sensitivity.

The proof is in the diet. So you can adopt a gluten-free diet and see if your symptoms go away.

I hope you feel better soon.

***YES. One can be POS and the other NEG.

Share this post


Link to post
Share on other sites

Some researchers are starting to think there are stages of celiac. You could be an early stage with antibodies but minimal intestinal damage. The positive antibodies sounds pretty definite, especially given your digestive problems.

You might have trouble finding enough starchy foods at first but you'll catch on fast. There are lots of breads, cookies, crackers, pasta... Keep reading this forum for brand names, recipes, etc. And you can still eat healthy fats--avocados, nuts, nut butters, etc. If you have celiac you'll absorb nutrients better once you are on the diet. You're not going to gain weight with chronic stomach pain and heartburn. Good luck.

Share this post


Link to post
Share on other sites

It definately sounds like you are one of us and the stool testing result bears that out. As others have said you may find that it is a lot easier to maintain your weight once you are gluten-free. If you plan on having a biopsy then please don't stop eating gluten until that is done or your chances of having a false negative will be very high. There are folks who have had a positive biopsy but negative blood work, we have a few on the board here. You can also be celiac even with a neg biopsy, you have 22 ft of small intestine and damage is often patchy and if the correct area is not biopsied or the slides are not read by someone familiar with the different stages of celiac damage they will be a false negative. After you are done with testing then you can and should begin the diet no matter what the results of biopsy and blood. The high rate of false negatives on blood almost killed me. They tested me repeatedly at one of the best hospitials in my state but never told me about the diet or even celiac just to be happy it was negative. If just one of those doctors had said to try the diet anyway when they first started to look for celiac my life now would be very different. Doctors often consider the diet a fate worse than death, so to speak, but in my personal experience the aftereffects of being misdiagnosed and the permanent damage done is far worse than the dietary restrictions. The diet is very doable although it does take some getting used to.

Share this post


Link to post
Share on other sites

Thank you SO MUCH for your responses. I'm very touched and really want to cry.

The more I learn about celiac the more I wonder if this has not been my problem for a very long time. I have been diagnosed with fibromyalgia and osteopenia at age 48. I am also wondering if celiac disease doesn't help explain my two daughters--one was born with a several anomalies including heart defect (she lived four months); my other daughter was born anancephalic (a condition where the skull never develops). Could celiac disease be the reason? I suppose it's useless to ask except to improve my health here and now.

I have implemented the gluten-free diet since last Friday and already feel a little better. Ravenwoodglass, you are right. I'm having trouble finding enough carbs. I thought I could eat oatmeal, but think I'm having trouble with that as well. Hopefully, as you say, I will catch on soon enough.

As for the biopsy, I can hardly stand the thought of a gluten binge in order to increase the chances of a positive test. So I'm still thinking about that. Any thoughts you can offer are much appreciated.

Thank you again everyone.

Share this post


Link to post
Share on other sites

Make sure that oatmeal is gluten-free....Bob's Red Mill....it must say certified gluten-free. Most oatmeals have gluten.

Share this post


Link to post
Share on other sites
Hey all. New kid on the block here. You're my last hope!

I have been suffering for many years with gi distress, but in 2005 when my 38 year old sister died of breast cancer, my gi problems hit an all time high (chronic stomach pain, constipation, explosive belching, 24/7 heartburn, bloating/stomach distension). I have had colonoscopy, upper endoscopy, celiac blood work, cat scan, ultrasound. My endoscopy showed duodenitis and gastritis, but all other tests were normal. Until now.

My new doc had me do a stool test for gluten antibodies with Enterolab. The score was 63. Is this high?

Does anyone know what this means. Can I have celiac when all other tests are normal?

I'm very confused. I'm 5'6", 115 lbs. If I give up bread (and other gluten foods) I'll dry up and fly away.

PLEASE HELP!

If you are Celiac and go on the gluten-free diet, you will start to absorb nutrients again and will gain weight. I never, ever got above 105 lbs and I am 5' 4". That was eating about 3-4,000 calories per day too. Once I went gluten-free, within a year and a half I was at my present weight of 112 pounds. I now have to watch my intake, like everyone else, but it is SOOOOOO worth it. I have never felt better in my life and have zero stomach issues now. You don't have to pig out on gluten-free bread, either, to gain weight....all you have to do is be able to absorb calories! Try the diet if Western medicine does not help you.

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

    • May 29, 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
    • June 01, 2019 Until June 02, 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 
       
    • July 07, 2019 Until August 03, 2019
      0  
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.


×
×
  • Create New...