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):

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

  • 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
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down...
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest ...
    3. Peace lily
      - Peace lily commented on Scott Adams's article in Latest Research
      2

      New Study Reveals How the Immune System Learns Which Foods Are Safe to Eat

      Hi everyone well I don’t understand totally,I look for gluten-free only. I seem to be super sensitive. I had a problem the other day don’t know why it happen . I’m the only that handles my food . My husband has pancreatitis he’s fine with me cooking gluten-free I’ve tried doing both it doesn’t work for me strictly gluten-free kitchen. But he can actu...
    4. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Super Sensitive People
      11

      Celiac flare years after diagnosis

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am...
    5. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      4

      Skin issues

      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,061
    • Most Online (within 30 mins)
      10,442
    Francisco1007
    Newest Member
    Francisco1007
    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

    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      Thankyou I did find out the Infectious disease is the route to go rather than dermatologist. I did reach out to two major hospitals and currently waiting on approval for one of them in Infectious Diseases to call me. I also did have implants ( I didn't know and sense not properly in my medical. Neither did surgeon)in 2006 and there was a leak 2023 during the same time I was dealing with covid, digestive issues, eyes and skin.Considering I " should  be fine" not consuming gluten/wheat, taking vitamins for sibo and STILL feeling terrible.It has to be parasites. I also take individual eye drops prescribed, could there be an issue there? Anyways my pcp thinks I need therapy because again they don't acknowledge my digestive issues because in my records it shows im fine, hintz the reason I had to go back to bay area hospital:(  I thought skin issues maybe sibo related but I feel and have seen and seriously trying not to think about it because it's disgusting. 
    • Aretaeus Cappadocia
      Zaalouk moroccan eggplant salad

      By Aretaeus Cappadocia · Posted

      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
×
×
  • Create New...