Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Not Sure What To Do

hpymomof3

Recommended Posts

hpymomof3 Rookie
hpymomof3
Posted

My daughter was diagnosed with gluten intolerance a few months ago. She has had severe insomnia for a year and a half. The doctor thought that there was a good possibility that she was gluten intolerant. We did testing through Enterolab and she came back positive but her score was only an 11. Prior blood tests came back negative. The gene workup also showed that she has genes for gluten intolerance and for Celiac disease. Other than the insomnia she has no other symptoms. Her stomach is fine and she has never had trouble eating certain foods. She has been gluten free for 4 months and she hasn't had any improvement.

We have seen a few other specialists to try to help her with the insomnia. Everyone we have talked to says that you need the biopsy to confirm gluten intolerance. On the other hand, one of our doctors feels that the stool test is more accurate. My daughter is miserable being on a gluten-free diet. She also seems a bit malnourished now that she has been gluten free since she is a picky eater and it is difficult to find foods that she likes to eat that are gluten-free. She was never malnourished before but now that she is gluten-free the tests show that she is.

Is it true that she needs to be back on gluten for the biopsy test to be accurate? I hate to put her back on gluten if it will set her back more but it has been 4 months and we haven't had any improvement anyway. On the other hand, it seems senseless for her to be off gluten if it isn't helping.

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

Celiac.com Sponsor (A8-M):


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

      EGD with flatten mucosa

      Welcome to the forum, @HeloIP! There are some other diseases, some medications (NSAIDs, olmesartan) and even some other food protein intolerances (the dairy protein casein) that can cause flattened villi in the duodenum but the most likely cause is celiac disease. Your GI doc may want to run some blood work to check for antibodies that are specific...
    2. HeloIP
      - HeloIP posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      EGD with flatten mucosa

      For years, I’ve had intermittent gut symptoms that included abdominal pain, fatigue, bloating, and gas. I did not have significant diarrhea. A few days ago, I had a EGD that revealed gastritis and mucosal flattening in the duodenum. I’m waiting on the results of the biopsy now. I feel that celiac disease is what has been my problem for years. I’m almost afrai...
    3. Joel K
      - Joel K posted a topic in Meet Up Room
      0

      Caribbean Sailing with Celiac

      Greetings! I would love to get a group going with fellow sailors with celiac disease who would be interested in chartering a sailing yacht down in the Caribbean perhaps a few times a year. Most likely in the US and/or British Virgin Islands, though other islands may also be considered. Doesn't have to be the same people and doesn't have to be only...
    4. Joel K
      - Joel K posted a topic in Board/Forum Technical Help
      0

      Forum Rules

      Greetings! I'd like to post a request for interest in an event I'd like to set up. But before I do, I'm wondering what the rules for posting in the forum are. Is there somewhere on this site where the rules for posting in the forum or in meetup groups are located? Thanks in advance.
    5. MelissaClinPsyD
      - MelissaClinPsyD replied to MelissaClinPsyD's topic in Coping with Celiac Disease
      4

      Refractory Coeliac Disease research to reduce anxiety

      There is no minimum time since diagnosis of refractory coeliac disease to be eligible for this research. The research is a feasibility study for people with refractory coeliac disease since there is currently no psychologically based intervention tailored for refractory coeliac. The aim of this research is to provide therapeutic support that is not routinely...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,490
    • Most Online (within 30 mins)
      7,748
    Henahp
    Newest Member
    Henahp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      EGD with flatten mucosa

      By trents · Posted

      Welcome to the forum, @HeloIP! There are some other diseases, some medications (NSAIDs, olmesartan) and even some other food protein intolerances (the dairy protein casein) that can cause flattened villi in the duodenum but the most likely cause is celiac disease. Your GI doc may want to run some blood work to check for antibodies that are specific to celiac disease as a follow-up so, in case he/she does, don't start a gluten-free diet until that blood draw is done.
    • HeloIP
      EGD with flatten mucosa

      By HeloIP · Posted

      For years, I’ve had intermittent gut symptoms that included abdominal pain, fatigue, bloating, and gas. I did not have significant diarrhea. A few days ago, I had a EGD that revealed gastritis and mucosal flattening in the duodenum. I’m waiting on the results of the biopsy now. I feel that celiac disease is what has been my problem for years. I’m almost afraid they’ll tell me the test is negative and then I’ll be right back where I started. Any insights on these findings would be helpful. Thank you.
    • Joel K
      Caribbean Sailing with Celiac

      By Joel K · Posted

      Greetings! I would love to get a group going with fellow sailors with celiac disease who would be interested in chartering a sailing yacht down in the Caribbean perhaps a few times a year.  Most likely in the US and/or British Virgin Islands, though other islands may also be considered.  Doesn't have to be the same people and doesn't have to be only experienced sailors.  But everybody would have to be willing to share in the charter, provisioning, and running expenses, in participating in sailing the yacht, and sharing in the work of living on board for a week or two at a time.  This would be a good opportunity to travel safely, foodwise, as all food on board would be provisioned as gluten free.  Of course, I realize many with celiac disease concurrently have additional food interaction issues and we would have to plan around these as well.  But the main concern and commonality among all hands is celiac disease.  We might have some meals ashore as well, and so planning the restaurants out would certainly be a part of our discussions on the trip. The modern yachts will range from 40 to 60 foot long and we'll have berths for six to ten persons, including myself.  Since chartering is such a big deal in the Caribbean, we will need to reserve a boat well in advance.  So firm committment to the venture would need to take place early once the process begins -- often up to a year in advance.  I will have more details once we get some interest. I am a retired ship captain after 48 years at sea, having sailed also in many traditional and modern schooners and a few yachts.  I last chartered a 52 foot sloop out of Road Town, Tortola, in the BVI in April 2025, and am course certified in ASA-101, 103, & 104.  My USCG Master license for Oceans was finally retired in 2022 and no longer active.  I live in Manchester, New Hampshire and work as a Myoskeletal Alignment Therapist with a clinic in Bedford, NH. If you have any interest in chartering with me, please let me know.
    • Joel K
      Forum Rules

      By Joel K · Posted

      Greetings! I'd like to post a request for interest in an event I'd like to set up.  But before I do, I'm wondering what the rules for posting in the forum are.  Is there somewhere on this site where the rules for posting in the forum or in meetup groups are located? Thanks in advance.
    • MelissaClinPsyD
      Refractory Coeliac Disease research to reduce anxiety

      By MelissaClinPsyD · Posted

      There is no minimum time since diagnosis of refractory coeliac disease to be eligible for this research. The research is a feasibility study for people with refractory coeliac disease since there is currently no psychologically based intervention tailored for refractory coeliac. The aim of this research is to provide therapeutic support that is not routinely offered at gastroenterology clinics thus encourages people to maintain wellbeing in consideration of having symptoms despite a gluten free diet. Hope you gain further clarity and some relief following your endoscopy!
×
×
  • Create New...