Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Are You All Doing On Your Recovery?

megsybeth

Recommended Posts

megsybeth Enthusiast
megsybeth
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

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.  :)

GottaSki Mentor
GottaSki
Posted

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.

  • 4 weeks later...
norman516 Rookie
norman516
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748
    tdouglas2901
    Newest Member
    tdouglas2901
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.