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):

Need To Find A 'dr. House'


lauriel234

Recommended Posts

lauriel234 Explorer

My daughter, 19, has been sick since April. Her first symptoms were hot flashes, weight gain (now up to 50 lbs.), shortness of breath, not sleeping (have tried Ambien, Lunestra, Rozeram) even with the pills (currently waiting to get in sleep study). Additional symptoms now include: rapid pulse/heart rate (EKG normal) and chest pain. She's had many blood tests, which show low progesterone (took her off birth control pills, now hasn't gotten period in 2 months), high liver enzymes, low iron. Her body is not absorbing vitamins/minerals - very low in D, B12, folate, zinc, selenium. Currently taking these vitamins, plus probiotics & digestive enzymes to bring up levels. Has been tested for thyroid problems (blood tests normal), but still believe this is related to thyroid. She suffers from depression & chronic tension headaches & takes prozac and depakote.

Any suggestions/comments would be greatly appreciated. We're both running out of ideas and patience. Don't know what to do next.


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



Celiac.com Sponsor (A8-M):



georgie Enthusiast

Go to www.stopthethyroidmadness.com You should find most of your answers there. Go to the link that says 'site map' to be put to the second page with a whole page of links. Is she Celiac ? I was unsure if she was gluten-free or not.

ravenwoodglass Mentor

Is she gluten free? How much depakote is she taking? Are they testing her levels and doing other blood work at least once a month? When I was on it I was checked every 2 weeks. Have you checked with each refill that the depakote is gluten-free? With liver issues you need to think about a talk with her doctor to see if there is another med she can go on. Depakote has a lot of adverse effects and can be toxic especially with the liver and that could be contributing to the problems.

lauriel234 Explorer
Go to www.stopthethyroidmadness.com You should find most of your answers there. Go to the link that says 'site map' to be put to the second page with a whole page of links. Is she Celiac ? I was unsure if she was gluten-free or not.

yes, she is celiac. misdiagnosed for about 8 years. gluten-free since 2002.

lauriel234 Explorer
Is she gluten free? How much depakote is she taking? Are they testing her levels and doing other blood work at least once a month? When I was on it I was checked every 2 weeks. Have you checked with each refill that the depakote is gluten-free? With liver issues you need to think about a talk with her doctor to see if there is another med she can go on. Depakote has a lot of adverse effects and can be toxic especially with the liver and that could be contributing to the problems.

yes, she is celiac. gluten-free since 2002. she is taking 250 mg. depakote once a day. she was just tested a month ago & her levels were fine. now another doctor did more blood tests & levels were high. i don't know if both liver tests were testing for same things.

minton Contributor

Open Original Shared Link

try to get accepted here

lauriel234 Explorer
Open Original Shared Link

try to get accepted here

thanks for the info - very interesting


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.

  • 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. - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
      2

      Skin issues

    2. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    3. - trents replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    4. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    5. - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,046
    • Most Online (within 30 mins)
      10,442

    Urquhart
    Newest Member
    Urquhart
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
×
×
  • Create New...