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

Cause For Celebration!

Rebecca's mom

Recommended Posts

Rebecca's mom Rookie
Rebecca's mom
Posted

Hi all,

I don't usually "start" posts, but I just had to share this with people who would understand. Our youngest daughter was diagnosed 1 year ago with Celiac Disease. Her tTG number was >100, as was her anti-gliadin number. She had Borderline Stage IV damage to her intestines. She had NO symptoms - none. The only reason that her celiac disease was "caught" is that she has the most awesome pediatrician.

You see, Rebecca has Down syndrome. Her pediatrician has a step-daughter who also has Down syndrome, and her mother had recently been diagnosed with celiac disease. After their daughter started to have the same symptoms, they had her tested, and she also had celiac disease. Since her dad wanted to know if he needed to do anything different for a child with DS who has celiac disease, he started researching it, and discovered that people with DS have a 1-in-8 chance of developing celiac disease in their lifetime.

Because this pediatrician has a special place in his heart for kids with Down syndrome, he has about 30-40 kids with DS in his practice. He took it upon himself to screen each of them when they came in for their well-child checkup. That is how we found out that Rebecca has Celiac Disease.

Well, we had another blood test run a couple of weeks ago at Rebecca's latest well-child checkup, and I am thrilled to report that her tTG number has gone down to 6!!!!!!!!!! We thank God each and every day that this wonderful pediatrician literally saved our little girl's life. She is doing so well, and we know that a gluten-free diet has a LOT to do with that.

Anyway, I just wanted to share our happy news with all of you. I appreciate you taking the time to listen -

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted

Oh Teresa, what a great story!! I'm so happy that Rebecca is healing and that her Celiac Disease was caught. What an amazing doctor. :D

Thanks for sharing!

Rebecca's mom Rookie
Rebecca's mom
Posted
  • Author

Thanks so much! Yes, "Dr. Frank" is a pretty special guy. Thanks to his decision to test his DS patients, not only have we been able to educate a lot of families in our local Down syndrome group, we have been able to "catch" a lot of children who aren't in our doctor's practice who might not have been tested otherwise. We have also had several parents (mostly moms) who have read about the symptoms, gone in for testing, and discovered that THEY have Celiac Disease!

I keep telling everyone who will listen that "A kid with Down syndrome saved my life", because as a direct result of Rebecca's diagnosis, I started on a GFD. I tested negative for celiac disease, but I had a rash that had been hanging on for 3 years - it cleared up almost immediately. It turns out that I had DH all this time - it didn't ever itch, so my dermatologist never thought to test it! I recently found out that I am the parent who passed along the Celiac gene to our daughter.....

In the past year, I have lost almost 40 pounds without even trying. I have been fighting my weight for most of my adult life, and for the first time, I KNOW that I am going to lose most, if not all, of it, and keep it off for good. If it hadn't been for our daughter coming into our lives 8 years ago, none of this would have happened. We have been so incredibly blessed!

Jestgar Rising Star
Jestgar
Posted

What a great story. It feels good to know that there are good things in the world, too. Thank you for sharing that.

ang1e0251 Contributor
ang1e0251
Posted

Thank you for sharing your insperational story! My husband works with mentally handicapped some of whom have Down's. Because of my diet he knows exactly what to do for them. It's such good knowledge to have that your child had no symptoms and still was positive for celiac disease. It justifies the testing for family members. I get no response when I tell my family to be tested. Maybe her story will move them.

RollingAlong Explorer
RollingAlong
Posted

What a wonderful story. I wonder if each of our doctors knows how many celiacs are in their practices - and statistically, how many they should have.

happygirl Collaborator
happygirl
Posted

This may be one of my absolute favorite posts that I have ever read on this board. I'm happy you took the time to "start" the thread and share your wonderful story. Your daughter is lucky to have you as her mom.

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

Celiac.com Sponsor (A8-M):


Gfresh404 Enthusiast
Gfresh404
Posted

That's awesome! I love to hear stories about good doctors since you always hear so many stories about how awful doctors are.

Archived

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

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


  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748
    westman3d
    Newest Member
    westman3d
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.