Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

AIWS and celiac

Shaa

By Shaa
in Related Issues & Disorders

Recommended Posts

Shaa Newbie
Shaa
Posted

I have celiac and Alice in Wonderland Syndrome and was wondering if anyone else with celiac has this as well? Just wondering if they were related...

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Some reading on it.

 

Posterboy Mentor
Posterboy
Posted

Shaa,

I did not have those symptom's but I like GFinDC wanted to provide you a good thread that might help you and some other research that might answer your question.

See this active thread that Healthy Squirrel is dealing with similar issues but not AIWS pers se....but neurological issues ...she/they have  had a hard time figuring out ...but now they have an idea of what is going on . . .and it is not all in her mind.

I also did some research to see if AIWS was related or occurred in Celiac disease and I didn't not see a direction connection....but sometimes AIWS can occur in those with SIBO or someone who has Lyme disease or EBV.

Here is some research that list common causes of AIWS maybe some of them will strike you.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4302569/

they conclude noting/quoting

"Cases of AIWS with the use of montelukast,[10] a mast cell stabilizer, are described. Moreover, the association with Lyme disease, mononucleosis and H1N1-influenza infection are known.[11,12,13,14,15] Further studies concerning this association are yet not ruled out.

In general, the treatment plan consists of giving migraine prophylaxis, (anticonvulsants, antidepressants, calcium channel blockers and beta blockers). Following a migraine diet regimen affords immense relief."

I hope this is helpful but this is not medical advice.

Posterboy,

ch88 Collaborator
ch88
Posted

I used to get Alice in Wonder Land syndrome on occasion. Mostly I think it was a dreams or when I was waking up or going to sleep. I would imagine a finger which was absurdly huge like a mountain and a bicycle that was like made out of toothpicks. The combination of the two was very nightmarish. Also it was accompanied by sound that was to low pitched and slow. If I watch videos on youtube played back at a slow speed that is somewhat similar to my experience. It gives me a uncomfortable feeling. I also once got it during the daytime for a brief period of time. I haven't had that happen in a few years and I suspect it was linked to gluten cross contamination.

I didn't have AIWS very often before I went gluten free (only a couple times when I was dreaming, going to sleep or waking up), but things do look a lot different now then they did before. Before houses looked big and pain and imposing. Now they appear intricate, extremely stylized, detailed and doll house like. I have gotten used to the change but was quite an experience for the first few weeks after going gluten free. How peoples faces appeared to me also changed a whole lot after I went gluten free. I think my mind is processing a lot more information at once now than it was able to do before I stopped eating gluten.

Archived

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

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


  • Member Statistics

    • Total Members
      127,739
    • Most Online (within 30 mins)
      7,748
    Klsdurbin
    Newest Member
    Klsdurbin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Gluten Free Daily Vitamins for Kids w/ Celiac

      By Scott Adams · Posted

      I haven't heard of them before, but a significant portion of dietary supplements are produced by a handful of large contract manufacturers. These companies have the facilities, expertise, and certifications to produce supplements at scale, making them attractive partners for brands that don’t have their own manufacturing capabilities. I doubt Forvia manufactures them directly, so it is hard to know if they are just doing clever marketing to a certain malabsorption crowd, or they actually have unique product.
    • Scott Adams
      Not sure if this is Celiac or just a gluten-free intolerance

      By Scott Adams · Posted

      That’s an interesting observation! The timing you mention does raise questions about the relationship between modern wheat varieties and the emergence of Non-Celiac Gluten Sensitivity (NCGS). Norman Borlaug’s work on high-yield, disease-resistant wheat during the Green Revolution significantly increased global food production, but it also led to changes in the composition of wheat, including higher gluten content to improve baking qualities. While NCGS was formally recognized as a condition in the 2010s (https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-10-13 and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820047/) , it’s important to note that the awareness and diagnosis of gluten-related disorders have evolved over time. Some researchers suggest that modern wheat breeding practices, along with changes in food processing and gut health, may contribute to the rise in gluten sensitivity. However, the exact mechanisms behind NCGS are still not fully understood, and it remains a debated topic in the scientific community. It’s also worth considering that increased awareness and improved diagnostic tools have played a role in identifying conditions like NCGS that may have existed but were previously unrecognized. The interplay between genetic, environmental, and dietary factors makes this a complex issue, and more research is needed to fully understand the connections.
    • Scott Adams
      Trader Joe's strikes again

      By Scott Adams · Posted

      Here is a recent reply to a Celiac.com email asking for comment about gluten contamination detected in their bakery products: You can read more about it in this thread:  
    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

      @Marie70, it is very important that your daughter not begin experimenting with eating gluten free until all testing for celiac disease is complete. Doing so will invalidate the testing. Normally, the testing involves two stages. The first stage is blood antibody testing as per the article linked by Scott above. As you can see from the article, there are a number of tests that can be ordered when diagnosing celiac disease but most physicians will not order a complete panel. At the very minimum, your daughter should request two antibody tests, "total IGA" and "tTG-IGA". The tTG-IGA is considered the centerpiece of celiac disease testing but if total IGA is low (i.e., if she is IGA deficient), this will result in an artificially low tTG-IGA score and possibly a false negative. Many general practitioners are not very knowledgeable about celiac disease testing so we have found we have to be a little assertive in order to get proper testing done. I don't know under the relational circumstances how much input you will have with your daughter about these things but I thought I'd pass the info on to you anyway. The second stage of celiac disease testing involves an endoscopy with biopsy of the small bowel lining which is then sent to a lab for microscopic analysis. This checks for damage to the small bowel lining and is confirmation if any of the blood antibody tests are positive. It is also considered to be the gold standard of celiac disease diagnosis. Again, should her antibody testing be positive, your daughter would still need to be consuming gluten until after the endoscopy/biopsy is complete.
    • Klsdurbin
      Did I outgrow celiac

      By Klsdurbin · Posted

      No!!! Celiacs disease does not go away. You can’t outgrow it, and if all proper diagnostic procedures (blood test and endoscopy) were followed when you were 8, it’s almost impossible to be mis-diagnosed.    stoms and reactions to gluten do change over time, but the fact you have celiacs does not.    I think that a lot of people misunderstand that the goal to managing your celiacs is to eventually test negative for celiacs. This does not mean it went away, it means that your gluten-free diet is working and you’re no longer producing the anti-bodies that will wreak havoc on your health.    if you can access the medical records from when you were 8 and have a GI doctor review them, I would highly recommend you do this. 
×
×
  • Create New...