• Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Ladybug99

  • Rank
    New Community Member
  1. This is our very long back story and then can I get some advice? (This is long. For a summary skip to ***) My daughter will be 6 in April and she possibly has celiac. At about a year old she was diagnosed FTT. At that time we suspected celiac and at 18 months old we went through with a endoscopy/colonoscopy. It all came back negative. She wasn’t eating much gluten at the time. She’s always been small/low percentile and grows slowly. Around four years old we again suspected celiac/gluten sensitivity due to symptoms including: growth issues, blood in stool, abdominal pain, persistent low grade fever, some vomiting, joint pain, behavior issues. Labs were negative. We did the genetic test and she carries half of one of the genes. (1 in 200 chance to have celiac but GI wasn’t convinced) We went gluten free anyway and noticed a change in symptoms and she grew!! Went from below 10% to just about 20%. Although at the time I wasn’t convinced it was related to gluten (denial?) and slowly reintroduced gluten. She seemed to do okay. I am confusing myself on timing but at one point we also were experiencing a weird, bad rash. Almost like hives but definitely not hives. I thought it may have been related to gluten but never could confirm. Doctors thought she probably had a Mast Cell issue. This all just suddenly stopped on its own day. (Strange!) Now my son is being treated for short stature and possibly had growth hormone deficiency. Since my daughter hasn’t grown since that big spurt and is back down to the 3-5% we checked a bone age scan and she is pretty delayed. She’s almost 6 and her bones are about 3.5-4 year old. So we started the process to refer to endo for growth issues like my son. However one of the blood tests came back positive! It was the TTG IgG (but it was only slightly positive) The TTG IgA and IgA serum were both normal. ***So in summary: She has a half of one of the genes, a slightly positive IgG and decrease in symptoms/increase in growth when gluten free. Now for my question!! What would you do?! I feel like I have three options: 1. Assume mild celiac and go gluten free, follow growth and watch symptoms. 2. Head back to GI (for the third time) and consider a biopsy. 3. Continue endo referral to look into growth knowing they may bounce us back to GI anyway. And my last question: should we check her TTG EMA? Sorry I know that’s a lot but I would appreciate any advice or experience you may have!
  2. Ladybug99

    DH?? (Look like bug bites)

    Rash photos << uploaded via tinypic
  3. hello, my daughter is 4 and has been getting what I originally thought were bug bites for a few months now, and they are worsening with each exposure. She is very newly diagnosed and I'm still learning. I believe she gets these in relation to when she was getting "glutened" and they come for about 2 weeks. She used to just get one or so at a time but she currently has probably 30 "spots". They are ALL over her body including scalp, pubic area, buttocks, trunk, back, etc They start as raised, red round spots, then form more to like a blister (very hard to describe) then they kind of scab over and eventually go away (leaving a brown skin discoloration for a while) they didn't used to itch but they do now. they basically look like bug bites... Has anyone had a similar experience ??
  4. Hi- new here but have been reading a lot of posts (Long post, last two paragraphs have actual question) my four year old daughter probably has celiac but I don't know if I'll ever get a definitive diagnosis at this point. Backstory: growth Delays, GI issues and a few other symptoms as a baby/young toddler. Did not have blood work done but went straight to biopsy which was negative. Always still had suspicions that gluten bothered her. Started developing more symptoms around 3, by 3.5 they were pretty bad and her dr recommend eliminating gluten. (Blood in stool, rashes, low grade fever, joint pain, stomach pain and bloating, behavior issues) Everything cleared up quickly! Yay. Still had occasional gluten because I was under the impression it was "just an intolerance" and her symptoms kept up/got worse with each exposure. (Developed vomitting as most recent symptom) So I wanted to know if it was celiac. Can't do blood or biopsy since she's been mostly off gluten for months by this time. I really was hoping to have a concrete answer and diagnosis, So we did genetic testing recently. It came back positive for half of DQ2 (beta subunit). Her dr isn't giving her official diagnosis but says "she is at a fairly low risk" but with her symptoms doesn't that mean she has developed it??! Either way he says to keep her off gluten but I don't understand why he won't diagnose? Right now I am just telling people (besides family) that she has it because it's too hard to explain it all but do you think an actual diagnosis would be beneficial in any way? Should I push the issue with her dr?