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

What Questions Should I Be Asking?

momto3

Recommended Posts

momto3 Newbie
momto3
Posted

Long story, but I will try to keep as short as I can.

My youngest is currently 20 months old. About 7 months ago, we noticed that he was breaking out in a bright red rash on his legs, back and belly. Pediatrician diagnosed atopic dermatitis and prescribed steroid creams. Those helped, but he was still breaking out on back, belly and face. I started keeping a food diary, and I made a connection between wheat products and the rash/hives. Poor kid would scratch until he bled!

I put him on a gluten-free diet. Pediatrician did allergy panel (all negative) and Celiac (negative but had been gluten-free for at least 2 weeks). We noticed on gluten-free diet that he had a positive change in bowel habits, was gaining weight after slipping at 15 mo well check and was less irritable (even extended family noted that).

Saw an allergist this week, skin test only showed tree nut allergy (whole other issue). Did another blood panel for allergies and Celiac. Allergist said why not do it even though he's been gluten-free for 6 months.

All this time, we've been thinking wheat allergy. The pediatrician didn't think it was Celiac, but the allergist said with the symptoms and negative allergy results, maybe.

We go back in a month to talk to the allergist about the blood tests and game plan. I'm thinking and hoping to go to a gastroenterologist to get some kind of actual diagnosis one way or another, although I dread putting him on wheat just for testing.

Sooooooo....... What kinds of questions should I be asking right now? I thought Celiac was off the table, now it's back on. Does this sound familiar to anyone? What should I be noting that will help out?

Any pointers appreciated!

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

Celiac.com Sponsor (A8-M):


mommy2krj Explorer
mommy2krj
Posted

False negatives for Celiac run really high in children so young.

I would ask them to

 

A) Give you a copy of the tests they've already run. Doctors...for whatever insane reason...don't always (or rarely I've found) run the full Celiac panel. If they've only run two tests...they haven't run them all. Someone much more familiar with all of this than I am will probably come along and give you the full list of the tests...there are 4 of them.

 

B)  Ask the allergist if, when you put your child back on wheat (because yes, you'll have to and for quite a while too) if he breaks out in the rash again if they will do a biopsy of the skin around the rash (the clear skin...from what I understand that is where you have to biopsy) to see if it is a Celiac related rash DH (there is a forum here all about this rash, those are the initials because damned if I can spell the names right!)

mommy2krj Explorer
mommy2krj
Posted

Umm...sorry I forgot the capital B and the ) make that smiley. I wasn't really meaning to put that there!

nvsmom Community Regular
nvsmom
Posted

Welconme to the board.  :)

 

Mommy2krj is right, false negatives are common in toddlers. Being gluten-free could have affected his results on the first test, and most likely would on the second. kids seem to heal faster than adults and their autoaintbodies seem to often disappear faster.

 

If you decide to retest for blood work, your son will have to eat gluten for 2 or 3 months to get an accurate test.  :( This is the full celiac panel:

  • ttG IA and tTG IgG
  • DGP IgA and DGP igG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG

The first three tests indicate there is ongoing damage to the villi. The DGP tests are thought to be the best tests to run on kids. The EMA is in advanced cases of damage and is rarely positive in young kids.  Total serum IgA is a control to make sure you make enough IgA for the other tests to be accurate;5% of celiacs are deficient in IgA. the AGA tests show sensitivity to gliadin and are thought by some to work for both celiac disease and non-celiac gluten sensitivity (NCGS).

 

If you can get a doctor on board to test for deramtiitis herpetiformis (DH) you could arrange to biopsy the area AROUND the rash once it reappears and is active. i don't know as much about DH testing as many others, you might want to check the DH forum on how to test for DH. Some are diagnosed that way.

 

If a gluten challenge is too much for your little guy, please let the doctor know. There are many adults around here who couldn't get through a two/three month gluten trial... it wasn't worth the suffering for them. some doctors will worl with that.

 

Best wishes in whatever you decide to do.

momto3 Newbie
momto3
Posted
  • Author

Thank you! Extremely helpful! I like going in to the doctor and being able to ask good questions.

Archived

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

Go to topic listing

  • 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. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,466
    • Most Online (within 30 mins)
      7,748
    Mike G Army EOD
    Newest Member
    Mike G Army EOD
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.