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

Good News On My Son


cyberprof

Recommended Posts

cyberprof Enthusiast

I had my GI follow-up (yearly) today and my GI asked about my son. I was pleased that he remembered or at least that he had it in his notes. I explained that his blood test was negative, he hadn't gone into puberty at age 15, that he had the celiac gene and that as a result we had my son go gluten-free/dairy-free. Then I told the doc that my son, after being gluten-free/DF for 6 months went into puberty, the doc was really positive. He said that that was the best thing we could have done and said that celiac is a strong cause of delayed puberty and he thought it was very logical. This doc is the first one that hasn't rolled their eyes when I said we'd taken him gluten-free w/out positive test results (excepting enterolabs...). Even my son's pediatrician is skeptical and is just humoring me, I think.

I am most pleased that my son is having some progress, although he is still painfully thin. But he started growing in height again...he's 5'7" almost.

~Laura


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Really good news on both your son and your doc!

Darn210 Enthusiast

YaY Laura!! Glad you've got a GI "in the know". My daughter's got one, too. Seems like they're quite a rarity around here and I consider myself lucky.

. . . and your son gets to say 5'7' . . . my hubby is a hair past 5'9" and he tells everyone he's "about 5' 10" . . :P

Good luck with the weight gain . . . wish I could give him some of mine. :rolleyes:

cyberprof Enthusiast

Thanks Mushroom and Janet. I know that people here understand the frustration...

YaY Laura!! Glad you've got a GI "in the know". My daughter's got one, too. Seems like they're quite a rarity around here and I consider myself lucky.

. . . and your son gets to say 5'7' . . . my hubby is a hair past 5'9" and he tells everyone he's "about 5' 10" . . :P

Good luck with the weight gain . . . wish I could give him some of mine. :rolleyes:

Yes, Janet we joke saying that my son needs to gain the 30 pounds that I need to lose. He just this month got consistently over 100 pounds. He's been between 94 and 98 for 3 years. His doc says that's ok but I don't agree.

My GI doc is just ok, though, not perfect. When I was first diagnosed he said that because I didn't have visible villi blunting that I didn't have to be as strict. That was proved wrong as I got very sensitive as soon as I cut out gluten and now I react very strongly.

~Laura

ang1e0251 Contributor

Congrats on listening to your mother instincts to help your son. I think sometimes we get hung up on test results when our bodies are screaming at us. Your son is lucky you are looking out for him. There is another thread about breast tenderness where some posters said they increased in bust size after going gluten-free. They feel it was puberty finishing up with its job.

It seems every day I learn new things about this disease. I am thankful for celiac.com.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

    2. - MauraBue posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Have Tru Joy Sweets Choco Chews been discontinued??

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      how much gluten do I need to eat before blood tests?

    4. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

    5. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      7

      Awaiting dermatitis herpetiformis confirmation following biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,260
    • Most Online (within 30 mins)
      7,748

    MauraBue
    Newest Member
    MauraBue
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      The rate of damage to the villous lining of the SB and the corresponding loss of nutrient absorbing efficiency varies tremendously from celiac to celiac. Yes, probably is dose dependent if, by dose dependent you mean the amount of exposure to gluten. But damage rates and level of sensitivity also seem to depend on the genetic profile. Those with both genes HLA-DQ2 and HLA-DQ8 seem to be more sensitive to minor amounts of gluten exposure than those with just one of those genes and those with only DQ2 seem to be more sensitive than those with only DQ8. But there are probably many factors that influence the damage rate to the villi as well as intensity of reaction to exposure. There is still a lot we don't know. One of the gray areas is in regard to those who are "silent" celiacs, i.e. those who seem to be asymptomatic or whose symptoms are so minor that they don't garner attention. When they get a small exposure (such as happens in cross contamination) and have no symptoms does that equate to no inflammation? We don't necessarily know. The "sensitive" celiac knows without a doubt, however, when they get exposure from cross contamination and the helps them know better what food products to avoid.
    • MauraBue
      Help!  My 5 year old daughter just stopped eating dairy and gluten due to her EoE and Celiac.  Her favorite candy in the world is tootsie rolls.  I did some research, and it sounds like these are the only options for finding something similar, but I can't find them anywhere to actually purchase.  Have they been discontinued??  Does anyone have another recommendation for a gluten-free/DF tootsie roll option?
    • catnapt
      I wonder how long it usually takes and if it is dose dependent as well... or if some ppl have a more pronounced reaction to gluten than others   thanks again for all the great info    
    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
×
×
  • 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.