• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Are You All Doing On Your Recovery?
0

4 posts in this topic

Hi Everyone,

 

I thought it might be nice to post how we're doing, especially those of us newlyl diagnosed. I haven't posted here much lately because DS and I are both well on our Gluten free way but this board was so great for me when I was first getting tested, diagnosed and dealing with symptoms that I wanted to report back. I think I've had celiac for about thirty years but it was never caught. It was only after my son started showing classic signs that I read about symptoms and realized my canker sores and infertility actually meant something. I tested positive on both blood panel and endoscopy. DS, 4, has had all the classic symptoms like small stature and finally this summer months of HORRIBLE diarrhea. But blood tests were all negative except DGP IGA and endoscopy (more than 8 samples from duodendum) was negative, reviewed by UCSD pathologist and GI and confirmed negative. Still gluten free and I tell people he has celiac's disease so they respect the diet more. Also, he has the same "low risk" DQ2 gene I have. Personally I think in ten years we'll have much better tests so we won't have to mess around with these gluten challenges and other nonsense. Clearly gluten's not for us, so the diagnosis doesn't matter as much.

 

As for me, the first few months were hard in some ways. Lots of pain, lots of D, which I hadn't had before or hadn't noticed. But I was a lot happier and remain so, higher energy, fog lifted. I also had canker sores for most of the first few months but now they seem to be gone. I had another blood test a couple weeks ago and don't recall levels but TTG IGA still high but Endo thinks that's ok . I'm starting to feel what I think is normal, but I'm not sure I would know normal! My big issue, I'm gaining weight. I was never too thin but I could always eat whatever I wanted. I'm still struggling not to do that anymore. Even though the hunger is gone that I had when malnourished, I just want to eat a box of cookies, damnit! Also my "clumsiness", which I guess was gluten brain dammage, is much improved. The other day I ran into a door and my husband asked me if I'd been glutened, he was so surprised to see me clumsy again.

 

My son is doing really well, no more D. Improved appetite. Growing like crazy. I'm not sure about total growth but at one point he grew 1/2 an inch in ten days. Therapists (occupational, he has motor delays), speech and teachers all say his attention is improved and he's talking more at school. He's definitely getting stronger and more muscular. He's also doing so well with the diet. This is a very immature, impulsive child but he's able to talk about what foods have gluten and about how they give him diarrhea. Of course he also makes recommendations to others which are pretty funny. Jane's sick? Oh, maybe she should go to her doctor so she can tell her which foods will make her feel better.

 

I know I'm very lucky, and so many of us here are suffering much worse symptoms and slower recoveries, but for our family, we are so thankful for the gluten free diet. I guess the way I see it is that I'm not unlucky to have "gotten" celiac disease. I'm so lucky to have been given a treatment. I have to cook a little more often than I'd like to. Miss some of those Trader Joes quicky dinners and takeout, but I know something about my body that is so important and I can help my little boy. So I'm very thankful.

 

Best of luck on your recoveries.

-Megan

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Thank you for dropping in and sharing your progress, Megan.  So glad you and your son are both doing well.  The newbies on the board need to hear stories like yours.  :)

0

Share this post


Link to post
Share on other sites

This is wonderful news Megan!

 

Thank you for updating your family's progress -- it really is great to hear from folks that are improving :)

 

PS..took me a bit longer but I am improving each day and am healthier than I was 20 years ago.

0

Share this post


Link to post
Share on other sites

How long was it until you started gaining weight and until your son started growing? 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,339
    • Total Posts
      935,556
  • Member Statistics

    • Total Members
      64,996
    • Most Online
      3,093

    Newest Member
    Gfjeschef
    Joined
  • Popular Now

  • Topics

  • Posts

    • Spicely Organics lab certifies all their spices gluten-free. The turmeric and curry powder they have is safe, also Thai Kitchen Curry Paste is certified Gluten free....I like you do not trust the normal curry powders or most blends with it.
    • In 1978 Virginia Slims' magazine advertising spouted "You've Come A Long Way Baby". Well, in 2011 "WE" celiac/DH people can express those same words when talking about how far we have travelled since I was diagnosed as a brittle celiac/DH person 16 years ago. If the people with peanut allergies can become well known, so can celiac people! DID YOU KNOW: That 16 years ago gluten free foods were difficult to find, and upon finding the small frost-bitten white-gummy loaf of bread, which was even more expensive than it is today, one had to scrape it off the roof of your mouth with your tongue and chew! View the full article
    • I would be willing to bet that nothing changed in that product except the label.  A bunch of companies seemed to have decided that they need to put "May contains allergens " on the everything to be safe.  But I wouldn't buy it any longer.    
    • If you want testing for celiac you will have to go back on gluten for 2 to 3 months for the blood test. There is a chance that your biopsy will be positive but if not then a challenge is in order. It would be a good idea to have your son tested also to keep him safe in school etc. He would need to do a challenge also if his ped agrees to test. It sounds like the wooden items your father made have great sentimental value. Perhaps you could clean them very well and then give them a sanding. That might make them safe for use.  
    • I've assumed for the last 8 years that I have gluten intolerance, or NCGS as I see it's now called. I thought that I had testing done (blood tests) that indicated I did not have celiac disease, and proceeded to follow a gluten free diet, most of the time. I've had gluten different times for different reasons, mostly because I started thinking "This can't be true. I should be able to eat my delicious home made bread!" and I suffered the consequences. Mostly pain in my neck and upper back, burning between the shoulder blades, also bloating and cravings for sugar and junk food. Each time, it took longer to recover from having gluten in my diet. The last time was over the holiday season last Christmas. Now I'm having pretty persistent symptoms, with the addition of occasional severe epigastric pain. So, off to the doctor I went to get this severe pain checked out. I found myself having an EGD a few days later, and when I woke up from my propofol induced stupor, there was the nice gastroenterologist telling me that he'd done biopsies to check for h. pylori AND CELIAC. I was floored. He didn't know I'd been gluten free. He did find mild gastritis and reflux, and no sign of hiatal hernia, which is what I really thought I had. I've looked through all my test results from the last 10 years, and can find nothing about testing for gliadin antibodies, or any of the tests mentioned here for gluten issues. I did have allergy testing done that was negative for wheat but I know that's not the same thing. I'm assuming that my biopsy will be normal, but that would be meaningless because I've been mostly gluten-free. The only times I've had gluten since January is maybe five times when I've had a couple of croutons on my salad at Olive Garden, or had an egg roll or wonton soup. If it's positive, then I know I've not been as vigilant about eliminating gluten as I should be, and I will have to stop using my wooden spoons (that my Daddy made) and my wood cutting boards (that my Daddy made) and throw away my favorite plastic spatula. My wooden cooking things were in use long ago, when I was still cooking wheat pasta, etc. So I know they are contaminated. My husband is telling me that there can't be enough gluten in those utensils to make a difference, but I've always worried about it a little bit. My Daddy can't make me any more things to replace the ones I have... I think right now that maybe the best thing for me would be to actually have a formal diagnosis, because that would make it easier for me to stick to the gluten free business. Right now it's too easy to let it slide, and to let people convince me that it's OK "just this one time". But - I'm wondering if there are any drawbacks that I am not aware of, and if anyone here knows please tell me what they are! If the biopsy is negative, then is there another test that can be done to make sure I really don't have celiac? I really need to be sure because I have two children. One of them has anti thyroid antibodies (I have Hashimoto's thyroiditis) and that son also has alopecia areata and psoriasis. He is gluten free along with me.  
  • Upcoming Events