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):

Could The Fog Be Lifting?


fkewatson

Recommended Posts

fkewatson Rookie

Hi - it's been a long time since I've posted anything, but we think we may be beginning to see the first benefits of being gluten-free with my 4 year old son (whom I need to mention has severe verbal apraxia and is completely non-verbal). It was 11 weeks this past Tuesday and this week has been amazing. He has begun to initiate going to the potty (he has been fully trained for some time now but we would have to take him - he would just hold it until we did). Now this week he is going into the bathroom and taking care of business on his own. His stool has begun to normalize (from chronic steatorrhea, not diarrhea) and he has become more responsive and focused. He is able to regulate his actions better in preschool (i.e. he is sitting for longer periods of time before getting up and wanting to run or wander around, and is giving me more verbalizations. There are other things that I can't even think of to mention right now - but it just seems like the "brain fog" that I hear people talk about is finally lifting. Poor little guy - he was on gluten his whole life up until 11.5 weeks ago and if not for the grace of God we still wouldn't know (the genetic Celiac test came back as "normal", but about 13 weeks ago a wonderful doctor took it upon herself to have an HLA expert read the results and she interpreted it as him having the genetic profile for "non-Celiac gluten sensitivity". So we went on the diet and my goodness, it appears it might be working!

Does his new behavior sound like it could be the gluten-free diet is beginning to pay off here on the fringe of the 3 month mark?

Am I hopefully in for bigger and better treats as the weeks go on?


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

I am so happy for you with the progress your son has made - that is just wonderful.

Have you also eliminated dairy? You might also do that as a lot of these kids cannot handle dairy & I would not add in soy, no one needs soy or dairy...

be sure to watch for cross contamination, now that he has been gluten-free for 3 months, he is probably going to be more sensitive to gluten now...

I am so excited for you, keep us posted!!!!

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...