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

Recommended Posts

momof4gf Rookie

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

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

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

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

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.

  • 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. - McKinleyWY replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Accuracy of testing concerns

    2. - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Scott Adams replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Low iron and vitamin d

    4. - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Healthy Gluten Free Foods low sugar that you found?

    5. - Scott Adams replied to lizzie42's topic in Traveling with Celiac Disease
      1

      Trip to Anaheim/Disney

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

    • Total Members
      133,244
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • McKinleyWY
      I sure appreciate the information. I knew there had to be gluten consumption for the blood test, but I did not realize that also applied to biopsies. Thank you so much for that nugget of knowledge. I look forward to learning more as I dive into this website and the collective knowledge, experience, and wisdom from those who have gone before and/or those who are just beginning the journey like me. Marilyn 
    • Scott Adams
      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in foods. I encourage everyone here who is affected by celiac or gluten sensitivity to read the announcement and submit their own suggestions — real lived experience matters and can influence policy changes that benefit the whole community.
    • Scott Adams
      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also commonly reported in celiac kids and can be related to slow healing, reflux, motility, or even low iron itself. It sounds like the supplements are clearly helping, which is reassuring, and ongoing monitoring with her doctor can help determine when (or if) doses can be reduced as absorption improves. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. This article has more info:    
    • Scott Adams
      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those with whole foods can help you feel more “normal” without triggering symptoms. Subscription boxes can be hit or miss, so checking labels carefully and using them as an occasional supplement—rather than a staple—often works best.
    • Scott Adams
      This article is a few of years old, but my still be helpful.  
×
×
  • 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.