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 Test To Have Done First?

lorah322

By lorah322
in Dermatitis Herpetiformis

Recommended Posts

lorah322 Rookie
lorah322
Posted

My son has been gluten free for 3 years. This was on the recommendation from an occupational therapist. His stomach improved immediately. He used to vomit quite a few times during the year (non viral), and the rash on his elbows and knees disappeared. Since that time I feel I have done a lot of research on celiac, and wish I knew to have him tested before ever going gluten free, but at the time I just didn't know.

Fast forward to this year. In January I started letting him have food at birthday parties and whenever they brought special snacks into school for birthdays, fun Fridays etc. he seemed to do well, so we started eating out once a week and letting him have whatever he wanted. Now in the past 2 weeks I started giving him gluten everyday. My husband and I decided to have him tested for celiac. Now I am trying to figure out which dr to go to. I read that the internal biopsy can be done as early as 2 weeks on a gluten challenge. Blood tests need a lot longer time on gluten.. And can easily give a false negative. But what about dh biopsies? He has active lesions on his elbows that have returned because of the gluten. Can he be tested now?

Where do you recommend I start. I have the name of a pediatric GI (who does a lot of work with celiac kids), do I see his pediatrician first for a blood test, or try seeing a dermatologist to have the rash diagnosed?

The rash looks like it's getting worse and I've been keeping an eye on his knees. I feel like it's only a matter of time before his knees break out too.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

The general rule for a dh biopsy is to have been actively eating gluten for 2 months --- same as for blood panel but with dh, we tend to test false neg. on the blood work 60% of the time. The biopsy for dh has to be taken from clear skin ADJACENT to a fresh lesion NOT ON IT. The patient can't have had oral or topical steroids for 2 months prior.

 

If the Ped has experience with celiac you might start there but has he had experience with celiacs presenting with dh???? It's a different ball game. If the Ped will do a endoscopy but again, those with dh tend to have patchier damage so he may miss it. And I wouldn't count on the 2 weeks rule. The study I read was a very small study group. The problem is, if tested & it comes up negative then docs shut the door on the possibility of celiac disease. 

postepay Newbie
postepay
Posted

I don't understand if someone is intollerant to gluten shall he be forever ?

kareng Grand Master
kareng
Posted

I don't understand if someone is intollerant to gluten shall he be forever ?

 

If you have Celiac Disease - It is forever.

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. hjayne19
      - hjayne19 replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Insomnia help

      Hi @trents Thanks for the reply. I appreciate it. I have been on an iron supplement for 4 years. (Started at Ferratin at 6) and has always sat around 20-30s. I also have been a high level athlete so I’m sure that doesn’t help. I will sometimes get readings around 50 but haven’t stopped my supplement so assuming it can be from taking it the day befor...
    2. cristiana
      - cristiana replied to cristiana's topic in Related Issues & Disorders
      2

      Healthy diet leading to terrible bloating

      @trents - THANK YOU, that is a really helpful and interesting post. I have had fairly extreme symptoms. Being a veteran hypochondriac I've been imagining all sorts and what you say makes me think I've probably been up to my usual catastrophizing! That said, I foresee another colonoscopy appointment if things don't settle down soon., and if I have...
    3. trents
      - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Insomnia help

      Welcome to the celiac.com community, @hjayne19! Because of the damage done to the villous lining of the small bowel by celiac disease's inflammatory process, absorption of nutrients from our diet is generally compromised and over time it is typical for those with celiac disease to develop nutritional deficiencies. Your low ferritin is evidence of that...
    4. trents
      - trents replied to cristiana's topic in Related Issues & Disorders
      2

      Healthy diet leading to terrible bloating

      Making significant changes in our diets, even when it is in, what would we are told by the experts, a healthy direction, can be upsetting to our system until it adjusts. To make an analogy, it's like beginning an exercise regiment when we don't ease into it gradually. That's one thing that occurs to me as a response. And I think as we get up in years this...
    5. Scott Adams
      0

      Easy Gluten-Free Sweet and Sour Chicken: A Takeout Classic Made Safe at Home

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,934
    • Most Online (within 30 mins)
      7,748
    Lisan4g
    Newest Member
    Lisan4g
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi @trents Thanks for the reply. I appreciate it. I have been on an iron supplement for 4 years. (Started at Ferratin at 6) and has always sat around 20-30s. I also have been a high level athlete so I’m sure that doesn’t help. I will sometimes get readings around 50 but haven’t stopped my supplement so assuming it can be from taking it the day before.  Also get muscle twitches too which maybe is pointing to some other deficiency.    My magnesium vitamin B and D were all normal right before going gluten free but I’m also reading more about zinc and the different types of b vitamins that may affect some symptoms as well. So will have to look into that. When can iron stores expect to replenish? Does it take awhile? 
    • cristiana
      Healthy diet leading to terrible bloating

      By cristiana · Posted

      @trents - THANK YOU, that is a really helpful and interesting post. I have had fairly extreme symptoms. Being a veteran hypochondriac I've been imagining all sorts and what you say makes me think I've probably been up to my usual catastrophizing!    That said, I foresee another colonoscopy appointment if things don't settle down soon., and if I have got diverticulosis I guess that is how they will find out. I've just checked some statistics and I had no idea until I googled the condition that such a large percentage of the UK population has diverticulosis, i.e. 50 per cent by the age of 50, and that diverticulitis itself - i.e.  inflammation of the diverticular - affects 5-25 per cent of the population.  Oddly enough I knew a young woman with it and she told me years ago that it felt like there was a baby's foot wedged into her stomach at times, just like when she was expecting a baby, and this is exactly how it feels to me at times (although I realise as a man you will not be familiar with this sensation!)   I also do have an umbilical hernia which I think plays me up. On your other earlier points - I have read elsewhere that sudden intake of fibre can cause a lot of discomfort.  It reminds me of the time I swapped a chocolate bar with a muesli bar with apricots in an effort to be healthy, and there was a stone in it which broke my tooth!  No pain no gain I suppose!  And re: new intolerances, that too is very likely.   I will start keeping a food diary and my husband has today bought me some peppermint tea, hopefully that might help disperse some of the bloating! Thank you.    
    • trents
      Insomnia help

      By trents · Posted

      Welcome to the celiac.com community, @hjayne19! Because of the damage done to the villous lining of the small bowel by celiac disease's inflammatory process, absorption of nutrients from our diet is generally compromised and over time it is typical for those with celiac disease to develop nutritional deficiencies. Your low ferritin is evidence of that. We generally advise those who have been newly diagnosed to invest in some high quality and high potency gluten-free vitamin and mineral supplements to address this. We're talking about more than a multivitamin. We usually advise B-complex, D3 (5-10k IU daily), zinc, and magnesium glycinate. In particular, magnesium can be helpful for sleep issues and the glycinate form is important as it is assimilates much better than a lot of common forms you see on supermarket shelves which are formulated more for shelf-life than the are for assimilation. Has your ferritin rebounded yet? You may also need an iron supplement if you aren't on one already. Do you have Costco stores near you? Costco's Kirkland Signature brand and Nature Made brand of vitamins and supplements are good quality, economical choices and will be labeled gluten-free on the packaging if they are.
    • trents
      Healthy diet leading to terrible bloating

      By trents · Posted

      Making significant changes in our diets, even when it is in, what would we are told by the experts, a healthy direction, can be upsetting to our system until it adjusts. To make an analogy, it's like beginning an exercise regiment when we don't ease into it gradually. That's one thing that occurs to me as a response. And I think as we get up in years this becomes more and more true. We become less adaptable to change. The other thing that occurs to me is that you may have added in things, that though they are nutritionally dense, may be things that you as an individual may have some degree of intolerance to. You mention nuts and citrus. Those are packed with nutrition but also high in histamines. And citrus is not only high in histamines but is also a histamine liberator. I know from personal experience there are some things I can eat occasionally, in limited amounts and I'm okay. But if I eat them too often or consume large servings they will give me an upset tummy or a migraine attack or both. And you might also look at the possibility that you have developed diverticular disease. Nuts and seeds are a no no for that I understand.
    • hjayne19
      Insomnia help

      By hjayne19 · Posted

      Hi! I am a recently diagnosed celiac and my first post here.    hoping for some help. I initially didn’t have any gastric symptoms before diagnosis. Mostly night sweats almost every night and bad insomnia. Sometimes 1-3 hours before falling asleep but mostly waking at 4 am and not able to fall asleep. I felt like a zombie. I have also had low Ferratin for years. Sleeping got a little better I also realized I wasn’t eating enough carbs after working with a dietician.    it’s been 3 months gluten free. I definitely am on the more sensitive side I would say. I get really bad panic/doom anxiety which was bad before diagnosis and has since improved but comes in waves. Now my insomnia has been bad again and looking for some advice. I try to keep a strict routine morning and night. But can’t seem to turn my brain off even though I’m exhausted.    Anyone else going through something similar? 
×
×
  • 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.