Jump to content

  • 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):

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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,119
    • Most Online (within 30 mins)
      10,442
    coeliacmamma
    Newest Member
    coeliacmamma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      New diagnosis

      By Russ H · Posted

      Hello, and welcome to the forum. Getting use to gluten-free eating is a struggle, but it is worth it. Your daughter should begin to feel much better and the fatigue will fade but it can take some time. I am sure you will get lots of suggestions from forum members - we have a few from the UK. I am a bit pushed for time just now but will come back later. Russ
    • Ginarwebb
      Test interpretations

      By Ginarwebb · Posted

      thank you so much for this information .. if I'm reading the results correctly I believe the range was  <15.0 Antibody not detected > or = 15.0 Antibody detected
    • coeliacmamma
      New diagnosis

      By coeliacmamma · Posted

      My 16 year old has just been diagnosed with coeliac, she loves food and is now struggling with the diet. She has a variety of different co editions and thos one just tops the list, she is a musical theatre student at college and loves what she does but fatigue gets in way alot of the time, are there any good amd tasty meals I can k make that will help?  Thanks for reading.
    • BelleDeJour
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By BelleDeJour · Posted

      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
    • Scott Adams
      Skin issues

      By Scott Adams · Posted

      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
×
×
  • Create New...