Jump to content
  • Sign Up
  • Join Our Community!

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

kaka

New Member Here - Advice Appreciated!

Rate this topic

Recommended Posts

Hi Everyone,

I'm absolutely delighted to have found this board but please bear with me as I'm just learning about this coeliac business. Breifly this is my story: Went to the doctor last October with loads of symptoms (Brain fog,rhinitis etc) and blood samples were taken. Now i'm not sure of the results but I know that one sample showed a very high level of something - think it might be some kind of antibodies. Whatever it was, my level was 33, and the upper level of normal is 10 (are you still with me!!) Doctor suspected that I might be coeliac and arraned for a biopsy. Meanwhile I went on a strict gluten free diet and felt much better.

Anyway I went for a biopsy 2 weeks ago and the results were normal. Doctor doesn't know what to think and now neither do I!!

I was wondering if my strict diet ( For 3 months) could have shown a positive biopsy result? I just feel a bit bewildered - sounds strange but I really would like a 'label' for this

Any advice appeciated

Thanks

kaka

Share this post


Link to post
Share on other sites

If you were on a gluten free diet for 3 months the biopsy was useless at that point. Damage would not be visible after a strict gluten free diet. The only way to have a chance of coming back positive on the biopsy would be to go back ON gluten for several months and even then the biopsy is a "hit or miss"....so may still come back negative even if you have Celiac. You should find out exactly what test was taken for Celiac that came back high. Some tests are more specific than others. If it was tTG than its very likely you have Celiac....its the most specific test. If its Anti-Gliadin IgG than that would be the least specific for Celiac. Either way you either have Celiac or gluten intolerance and the treatment is the same....a strict gluten-free diet.

Share this post


Link to post
Share on other sites

Thanks foryour speedy answer Rachel. I've just phoned my doc and the high level (33)was IGA Tissue Transglutinaminase. Maybe we use different terms here in Scotland(!!) - is that the same as tTG or IgG ??- I'm not sure but any clarification would be much appreciated

Thanks again

kaka

Share this post


Link to post
Share on other sites
Guest cassidy

Kaka,

My question is, if you have been gluten free for 3 months, have you noticed a difference with your symptoms? If you feel better then that is what is important. My tests came back negative but I feel so much better. In the beginning I wanted "to know for sure" but now I'm just happy that I feel better.

Share this post


Link to post
Share on other sites
Guest nini

being on the gluten free diet even for several weeks prior to your biopsy, would still skew the results. Even if there was previously damage to be detected, it may have significantly begun to heal, or they didn't take enough samples and just got an area with no damage.

With your high 33, you do at the very least have a gluten intolerance, which IN MY HUMBLE OPINION is the same thing as Celiac, only difference being that you don't have proven damage to the villi... Either way the gluten free diet is the only treatment AND I would say treat it as Celiac...

I never had the biopsy, never will... I started the diet the day I had my bloodwork drawn. If I had waited one more day I may have been dead... I was that sick... anyway. I'm almost 3 years into this, 100 pounds lighter (YAY ME!) and healthier than I have been my entire life.

You'll get the hang of the diet easily enough and depending on how ill you were before, it may take you a while before you really notice an improvement... it was a good 6 months for me before I really felt much better... still have ongoing stuff from going undiagnosed for so long but that's another story for another day.

Share this post


Link to post
Share on other sites

kaka--my girls had tTG levels of 18 and 22, and ? (don't know the other one) the 2 that had biopsies: one was negative and the other was iffy. when i asked the doc about no damage, he said they probably did have damage because of their numbers. since your numbers are alot higher than my girls' , i would guess they just didn't hit the right spots with the biopsy

christine

Share this post


Link to post
Share on other sites

Kaka,

tTG is actually the same as Tissue Transglutinaminase. Its just alot easier to type. ;)

If yours was positive than you have Celiac.

Share this post


Link to post
Share on other sites

Thanks you all so much for your answers. I really do feel so much better gluten free, and strangely think I am beginning to lose weight (fantastic). I think you're all correct in that it doesn't really matter what the biopsy results were and to be honest I wonder why I was bothering so much that the result was inconclusive - I FEEL so much better on the new diet so I'll continue on it.

I think I wanted a 'label' for some sad reason!!

I love this board and will continue to visit to pick up tips etc, we are still in the dark ages about coeliac in Scotland!!

Thanks again

kakaxx

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

    • April 17, 2019 Until April 27, 2019
      0  
      April 17-27, 2020   For the past few years many of you have asked us to arrange a River Boat Cruise that will allow us to visit Amsterdam's famous Keukenhof Gardens at its prime time of the blossoming of the millions of Tulips and Hyacinths - alongside the windmills of the Netherlands.  With the participation of a minimum of 20 persons we have arranged an All-Inclusive Cruise from Antwerp to Amsterdam.  This cruise will not be offered to the public until January, 2019 and always sells out quickly.   THERE WILL BE NO MONEY REQUIRED NOR COMMITMENT FROM YOU until we have all the final costs and details.  If you are at all interested check out our website for as many of the details that we have as of this time.   We need your request to be placed on a list of interested participants so we can present that number to Uniworld to show we have the sincere interest in this All-Inclusive Bob & Ruth's Gluten-free Cruise.   PLEASE CHECK OUT OUR WEBSITE FOR THE DETAILED INFORMATION THAT WE HAVE AS OF THIS TIME.   http://bobandruths.com
    • April 24, 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
    • May 04, 2019 Until May 05, 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 
       
×
×
  • Create New...