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

Frustrated With Results, Where Do We Go From Here?


Pennyb

Recommended Posts

Pennyb Rookie

This is my first post, but I have been monitoring this message board for about a year and have found it very helpful.

My 15 year old daughter was diagnosed with Celiac March 2006. Positive Intestinal scope and positive blood tests. She has been on a gluten-free diet since the diagnosis. She tries to be very careful with her diet, as she is very sensitive. She improved after starting the diet, but has been increasingly sick since November 2006. She made it to 3 days of school between Thanksgiving and Christmas. We thought she was continually getting the flu and every other virus that circulates. She would go to school for a day and be out sick for four days. We have tried half days of school, because she doesn't have the energy to make it a whole day, but this hasn't worked well either. We figured with the immune system being weak that it makes sense that she catches everything that comes around, but now are questioning when it will end.

She has tried L-Glutamine, Digestive Enzymes, and Probiotics, but these don't seem to make her better or worse. She is continually in pain and having stomach cramps. We had a sonogram of the abdomen last week, and also a HYDA Scan on her gall bladder. We are meeting with a surgeon tomorrow to discuss the results and look into removing the gall bladder. There is history of gall bladder problems on both sides of the family.

Personally, I don't think that her problem is from food at this time, (I may be wrong), but she hasn't eaten anywhere but at home for a long time. And is living on mostly hamburger, eggs, vegtables, rice & Chicken.

Any comments or suggestions would be appreciated.

Penny


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



Celiac.com Sponsor (A8-M):



Nic Collaborator

Could it be an intolerance to something else (eggs, dairy, etc.)? My son was diagnosed almost 2 years ago. Last school year (which was within his first year of diagnosis) he caught everything that came his way. I think I even posted on here my concerns asking if anyone else saw this with their children and is it immune system related. Good luck, sorry can't offer more.

Nicole

chrissy Collaborator

have you done follow-up blood work to make sure her antibody levels have dropped?

Ursa Major Collaborator

Unfortunately, she could also be intolerant to all lectins (gluten is one of them). Rice and eggs produce symptoms almost identical to being glutened for me. I seem to be able to tolerate some yogurt finally, but no other dairy.

Check out my lectin link in my signature for more information on lectins. It would be a bummer, but better than being sick all the time.

Pennyb Rookie
have you done follow-up blood work to make sure her antibody levels have dropped?

We've had 4 different sets of blood tests in the last 2 months and everything comes back normal.

Penny

TCA Contributor

Have you eliminated all lotions, soaps, makeups, etc. that might not be gluten-free? We ran into something similar with my daughter. She was doing great going gluten-free, then started having problems again suddenly. I had boughts some curel lotion that had Oats in it to keep by the kitcen sink. I was going through reciepts one day and noticed I had bought it about the time she started having problems. After discovering this, I went through the entire house and got rid of everything with gluten and she's done well ever since.

Another train of thought might be to get allergy testing done. Just a thought....

Good luck and Welcom!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,763
    • Most Online (within 30 mins)
      7,748

    Donna Williamson
    Newest Member
    Donna Williamson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      For back pain, I take a combination of Cobalamine B12, Pyridoxine B 6, and Thiamine B 1 (in the form Benfotiamine), which have an analgesic effect.  These three B vitamins together work way better than those over the counter pain relievers.  Theses are water soluble B vitamins that are easily excreted via the kidneys if not needed.  Thiamine will also help the nausea. Interesting Reading... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/#:~:text=Some of these processes include,Analgesics
    • knitty kitty
      @stephaniekl, welcome to the forum, Is your daughter taking any nutritional supplements?   Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.   I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies.  Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system.  Thiamine helps the immune system fight off viruses like those tick borne illnesses.   Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine. Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.   Keep us posted on your progress! Interesting Reading... The importance of thiamine (vitamin B1) in humans https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].
    • trents
      Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while? I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.
    • stephaniekl
      We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.   We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses.  Thanks for your help! 
    • RMJ
      A much better suggestion than that of the new doctor!
×
×
  • 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.