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

Weird Withdrawal Symptoms?

momof4gf

By momof4gf
in Coping with Celiac Disease

Recommended Posts

momof4gf Rookie
momof4gf
Posted

I'm new to the gluten free thing and was wondering if anyone has heard of this - I started my 8-year-old daughter on a gluten free diet 2 months ago because of positive IgG and IgA antibodies on a finger prick test done by a homeopath. She responded really well with much better behavior, less irritability, and fewer stomachaches and headaches. However, a couple weeks into the diet all of her eyelashes fell out and she started complaining of blurry vision. I took her to the eye doctor today who said her eyes look perfectly healthy but no matter what prescription she used, she could not get my daughter to see better than 20/60. The doctor is very concerned and wants her to see a neuroopthamologist?? She also thinks we should discontinue the gluten free diet and see if her eyesight improves. I have 3 other children who also had positive antibodies and have been on the diet and I wanted to start all of them on gluten again and see a pediatric gastroenterologist for a more definitive diagnosis. Has anyone ever heard of anything like this?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Could your DD have gotten glutened? I ask because getting glutened messes up my vision for a while. Has your regular doctor, her ped, done vitamin and mineral panels on her? She may need some supplements. I doubt being on the diet is messing her up but she may be very sensitive to CC and reacting to that. Have you deglutened the kitchen? New toaster, cutting board etc?

momof4gf Rookie
momof4gf
Posted
  • Author

Thanks, ravenwoodglass, I don't think she was glutened - I have tried to make our entire kitchen gluten free since all my children showed to have antibodies - new toaster but not cutting boards, guess I should replace those too! I only bring gluten free food into the house now. I was just wondering if because she probably still had gluten in her system at 2 weeks on the diet if it could be causing the problem?? I have not done a nutritional panel on her but she does have an appt with a GI doc next month so I will ask her about that. Also, since I'm new I'm not familiar with all the lingo - what is CC?

SGWhiskers Collaborator
SGWhiskers
Posted

I would get a second opinion about taking her off the gluten-free diet.

Also, Celiac is associated with many autoimmune conditions. A friend of mine's teenage son lost all his eyelashes then eyebrows, then eventually patches of hair. He and then his whole family were eventually diagnosed with multiple autoimmune disfunctions at the same time. he did not have vision problems though. I'm not aware of a direct link between alopecia areata and Celiac, but they are both autoimmune. IF that is what daughter has. Is the eye discomfort causing her to rub her eyes so much the lashes fall out? I would be most worried about the vision.

Another thought. You said that even with correction, the doctor could not get her vision past 20/60. What about taking her to a pediatric optholomologist. She's not that young, but maybe someone who works with kids all day has some tricks to get a better response from her.

I wish you the best trying to figure this one out. It looks like a tricky one.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks, ravenwoodglass, I don't think she was glutened - I have tried to make our entire kitchen gluten free since all my children showed to have antibodies - new toaster but not cutting boards, guess I should replace those too! I only bring gluten free food into the house now. I was just wondering if because she probably still had gluten in her system at 2 weeks on the diet if it could be causing the problem?? I have not done a nutritional panel on her but she does have an appt with a GI doc next month so I will ask her about that. Also, since I'm new I'm not familiar with all the lingo - what is CC?

CC is cross contamination. For example eating something like FF that are gluten free but cooked in the same oil as onion rings would CC the frys.

If she is only two weeks into the diet she is still healing. You note she has an appointment with the GI in a month, do be aware that if you are looking for testing for celiac she needs to still be eating gluten for testing. Being gluten free will cause a false negative on testing and those are common enough, especially with young folks, even on a full gluten diet.

If she is already diagnosed I would not put her back on gluten. That was very poor advice. Being gluten free would not cause the issues with her eyes. And yes she most likely does still have antibodies floating around in her system. Plus even a small amount of gluten will flare those antibodies into action.

Also is she in school? Are they aware of her need to be gluten free? Some of the products used in arts and crafts as well as snacks etc can be an issue in school.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,204
    • Most Online (within 30 mins)
      7,748
    Sarahmegan
    Newest Member
    Sarahmegan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.