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

Newly Diagnosed, Very Sick 1Yo

Ginkgo100

Recommended Posts

Ginkgo100 Rookie
Ginkgo100
Posted

At his 12-month well-child visit, my son (the youngest of 3 boys) turned out not to be a well child

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

Celiac.com Sponsor (A8-M):


seezee Explorer
seezee
Posted

There's a pretty good book by Dana Korn called Raising Our Celiac Kids that you may want to try.

It sounds like they diagnosed your son and just sent you on your way. Where we go they have training by the nutritionist for the family on this. We took an hour long training where the nutritionist explained ways to have a shared kitchen or not, how to read labels. Are you seeing a pediatric GI doctor for follow-up care? Where we go they have you meet with the GI doctor regularly to check in to make sure your child is growing/healing. They check for vitamin deficiencies and other symptoms. I am not sure where you live but there are a number of celiac specialists and centers around. My daughter had issues with Vit. D deficiency that they treated w/prescription supplements.

My daughter took close to two years to really get better, but she started gaining weight and feeling better in about two months.

Ginkgo100 Rookie
Ginkgo100
Posted
  • Author

There's a pretty good book by Dana Korn called Raising Our Celiac Kids that you may want to try.

It sounds like they diagnosed your son and just sent you on your way. Where we go they have training by the nutritionist for the family on this. We took an hour long training where the nutritionist explained ways to have a shared kitchen or not, how to read labels. Are you seeing a pediatric GI doctor for follow-up care? Where we go they have you meet with the GI doctor regularly to check in to make sure your child is growing/healing. They check for vitamin deficiencies and other symptoms. I am not sure where you live but there are a number of celiac specialists and centers around. My daughter had issues with Vit. D deficiency that they treated w/prescription supplements.

My daughter took close to two years to really get better, but she started gaining weight and feeling better in about two months.

Actually, it's not as bad as I guess I made it sound. He's seeing his regular pedi every week right now, plus we're following up with his pedi-GI doc from the hospital this coming week. We met with a nutritionist before we left the hospital and my pedi gave me a referral for another nutritionist consult. We live in Houston, which has the world-renowned Texas Medical Center, so I'm sure I can find some celiac experts around here.

Yesterday after I posted this, he had his weekly follow-up with the regular pedi, and he lost a few MORE ounces. :( The hopeful thing is that the pedi thinks it may actually be that he just caught a diarrhea virus (it's going around the family) with bad timing. And that would make sense, because this week the diarrhea is more watery, less gooey/fatty. He DOES seem to be feeling better: less cranky, and the developmental milestones that sort of stalled have been progressing again this week. (He learned to walk at 10 months, but he never got good at it; he had 1 word at 11 months, but had not had any other speech development. This week he's walking everywhere, used his first baby sign, and said "mama" this morning!) So I am hoping that is all it is.

Oh, and we're also having the 3yo tested. He's always had mild to moderate diarrhea. The 6yo, I am not worried about, because he has no symptoms, is not genetically related and is not even Caucasian (the race most prone to celiac). (Yes, we adopted him.) And I will definitely check out that book, thanks for the tip!

Robyn

seezee Explorer
seezee
Posted

Phew.

It sounds like your baby is getting better. It does take time to heal and we found out when my daughter was in fourth grade so babies probably get better faster.

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.