Jump to content
  • Sign Up
  • Join Our Community!

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

MSmo

Confusing Test Results

Rate this topic

Recommended Posts

I'm new to this so please forgive the long post. I'm having trouble getting a difinitive diagnosis but suspect that I am gluten sensitive. My trouble started with a rash in the winter of 2003. The rash was very, very itchy red bumps (not blistery). Over the course of the next several months I saw my family doctor (many times), two dermatologists, and an allergist and after getting nowhere, I ended up back at my family doctors office. I mentioned to him that my father has celiac disease (never diagnosed through any test but confirmed by diet, he had the typical symptoms which completely disappeared after going gluten free). He ordered the blood test for the anti-gliadin antibody and, lo and behold, the IgG test was elevated (38 units, Normal Range 0 – 19 units). The IgA test was within normal limits (8 units, Normal Range 0 – 19 units). He then sent me to the gastroenterologist who refused to do any testing because I didn't have any intestinal symptoms. He said the test must have been a false positive. Back to the dermatologist I went for a skin biopsy (another one, the previous biopsy showed a hypersensitivity reaction to something I was ingesting or inhaling), this time looking for DH. The biopsy was negative for DH. I did decide to go gluten free after the blood test results (May 2004) however, and the rash has disappeared for the most part. I'd just like to know for sure if I am truly gluten intollerant. The positive blood test and the family history certainly point that way. And the fact that the rash went away while on the diet. Now if I cheat even a little, my skin gets itchy but so far no rash has developed. Any advice or stories of similar experiences would be greatly appreciated. Thanks.

Share this post


Link to post
Share on other sites
Guest nini

The Dr. refused to do the test despite the family history and the blood test results??? Find a new GI. You do not have to have gastrointestinal symptoms to have Celiac. It is the most OBVIOUS symptom but not the de facto end all only one... this really irks me.

OR you can just assume you are based on your elevated levels and go ahead and stay gluten free. Just my .02

Share this post


Link to post
Share on other sites

Get a new GI doc that's for sure. That GI must not know about celiac and some people just don't get symptoms. How did he get to be a doctor with saying that. You should get a complete blood panel run on you.

Share this post


Link to post
Share on other sites

The GI docs attitude irked me as well. I had been on the diet for a couple of months when I saw him and he told me to go off of it, that I was torturing myself needlessly with such a restrictive diet. He said that if I had diarrhea and weight loss he would consider a diagnosis of celiac disease but not until then. From everything I've read, once you have the diarrhea, you've damaged your intestines. Why not embrace the diet now before the damage is done? I just wish there was one test that would indicate for sure that this is what I'm dealing with. It's not knowing for sure that bothers me. For now I'll remain gluten free so I don't itch!! Thanks all for your input!

Share this post


Link to post
Share on other sites

Well, I agree with the others about your doctor giving you false info. and basically blowing your chance for a diagnosis back then. I'm assuming you've been gluten-free for over a year now?? Tests would be pretty much useless now but since you did have positive IgG, family history and a positive response to the diet...I would just assume you're doing the right thing and stick with it. Its either that or go back on gluten for a few months.

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...