Jump to content
  • Sign Up
  • Join Our Community!

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

marciab

Am I Screwed ? Longtime Undiagnosed Celiac

Rate this topic

Recommended Posts

Hi All,

I was hoping to see my question answered in the other post about being normal, but I didn't see what I was looking for. So here goes..... What are my chances for getting cancer (stomach, intestinal, etc.), from living with undiagnosed and therefore untreated celiac for who knows how long?

I am 50 and have diverticulitis, colon polyps, erosive gastritis, hiatal hernia and have been disabled with CFIDS and Fibro since 1990. On top of feeling crappy most days, I always have some new medical problem to deal with.

My mother died in 2001 from liver cancer which no one caught until the tumor was 5 centimeters because they just kept telling her that she had a stomach virus. And by then it was too late.

I'm leary about asking my doctor because I'm afraid I'll be seen as being over dramatic. But after what happened to my mother, I really don't want to wait too long.

What do you think ? What would you do ? thanks marcia

Share this post


Link to post
Share on other sites
Guest nini

Marcia, if you are on the gluten free diet, after a while your risk of cancer should return to that of the average population. With a family history though, I would ask your Dr. about it, and I don't think you are being overly dramatic, just pro active in your health. Good luck with it and keep us posted!

Share this post


Link to post
Share on other sites

Thanks. I like the idea of being pro active. I hope my doc looks at it the same way. I'm embarrassed to call them at this point cause they know my voice. They are supportive, I am just overly sensitive from years of being considered a hypochondriac.

I was hoping that since my stomach problems, the pain, bloating, "D" and "C" go away if I am careful of what I eat, then chances are I don't have anything to worry about.

What do u think ? Marcia

Share this post


Link to post
Share on other sites

I think pro-active is the way to go here, too. I'm only 43, I'm not a celiac (have Gluten Ataxia), but when I had my endoscope, they also did a colonoscopy. I only had 2 polyps, and they removed those. If you know you have them, I think it's time that they go bye-bye. They are the precursor to colon cancer. Mine were non-precancerous, which was good, but it also means that I'll have to have a scope more frequently, and certainly not wait until I'm 50. I think if you present your conditions and symptoms in an organized, focused format, the doctor won't have a reason NOT to listen to you and not to take you seriously. I'm sending good luck your way, and praying for you . . . hugs, Lynne

Share this post


Link to post
Share on other sites

Thanks ... I know the colonoscopy report said that the two polyps biopsied were not malignant. I'm not sure if he removed all that he saw. I was just in shock that he found anything. That was in Aug 2004 and I am not due to get another colonoscopy until 2007, so that sounds promising.

There are so many parts to the digestive system, how would they check them all ? Is there a blood test ? marcia

Share this post


Link to post
Share on other sites

i think i read that an adult celiac, after they have been on the gluten free diet for (either 2 or 5 years) anyway.....their risk of other diseases is supposed to return to normal. i think for a child, their risks return to normal alot sooner.

christine

Share this post


Link to post
Share on other sites

Well, as far as cancer goes, there have been some studies in the area with people having cancer verses celiac patients with cancer. There are several websites where some of the research has been posted, one such website is located at: http://www.nutramed.com/celiac/celiacrefcancer.htm

Know your disease and know your option and find a doctor who understands this disease (not an easy thing in some regions).

As for hope, keep your chin up! I will be 40 in April and have suffered from the disease for as long as I can remember, at very least since the age of 5. I only found out a few weeks ago that I am positive for Celiac Disease, so I have suffered for over 35 years. Like you, my medical history reads like a long list of "sickly".

I have thyroid Disease, liver disease, rheumatoid arthritis, have broken many bones in my body, torn muscles, tendons and the like in accidents others would not have been injured in. I have the typical complications like osteoporosis, suffered from miscarriages, even had a hysterectomy at age 25 in my doctors attempt to cure me of all my pain, seizures, I stopped growing at age 12 and on and on the list goes.

I can tell you that I was partially gluten-free prior to DX as I simply knew that certain foods didn't make me feel so sick. I have been totally gluten-free for two weeks only and am already realizing relief in my trips to the bathroom and arthritis pain. I think the rapid result in this area was that my diet was mostly (not fully) gluten free prior to dx.

Anyhow, there are lots of books in the Universities medical library and most of these schools will allow you to visit their libraries for the day with identification to do research. I even hired a med student to translate the "lingo" that I didn't understand for the price of $25 per day (3 hours) so that I knew better in some of the studies what was going on and being spoken about.

Deborah

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...