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

Pandas

sugarsue

Recommended Posts

sugarsue Enthusiast
sugarsue
Posted

Just wondering if anyone here has any experience with the autoimmune disease PANDAS with their children. Both my girls may have it and I am curious to talk to anyone who has children with this and gluten issues.

Thanks.

susan

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

Celiac.com Sponsor (A8-M):


Pattymom Newbie
Pattymom
Posted

Yes, My 13 ds has PANDAS. His OCD started when he was 7, responded very well to CBT. Some social anxiety started to reemerge last spring, and following antoher strep throat infection this winter, the OCD came back in gangbuster form. He has been gluten free only since this Feb--his anxiety did improve some off gluten, but it didn't go away, He just began medication a few weeks ago b/c he wanted it.

Interestingly, he had lots of constant complaints of stomach aches, and gassiness when he was younger. When we started really talking about the OCD and treating it, he virtually stopped complaining about belly pain--I had assumed that it was caused by anxiety, though at that time, I had also started a elimination diet and cut our wheat ( not gluten) for a while, We hve only entered the gluten free world n earnest almost 5 years ago when dd #2 was born. I am the onl one officially diagnosed with celiac at this point, though the whole house is gluten free, and only one dd, 10, and my husband ever eat i outside of the house. She also has anxiety and selective mutism, which has made a lot of progress hrough some good software and treatment, though no traceable PANDAS diagnosis.

We do definetely see and increase in anxious behavior with gluten ingestion, though it, alas, did not cure ths issues.

Patty

sugarsue Enthusiast
sugarsue
Posted
  • Author
Yes, My 13 ds has PANDAS. His OCD started when he was 7, responded very well to CBT. Some social anxiety started to reemerge last spring, and following antoher strep throat infection this winter, the OCD came back in gangbuster form. He has been gluten free only since this Feb--his anxiety did improve some off gluten, but it didn't go away, He just began medication a few weeks ago b/c he wanted it.

Interestingly, he had lots of constant complaints of stomach aches, and gassiness when he was younger. When we started really talking about the OCD and treating it, he virtually stopped complaining about belly pain--I had assumed that it was caused by anxiety, though at that time, I had also started a elimination diet and cut our wheat ( not gluten) for a while, We hve only entered the gluten free world n earnest almost 5 years ago when dd #2 was born. I am the onl one officially diagnosed with celiac at this point, though the whole house is gluten free, and only one dd, 10, and my husband ever eat i outside of the house. She also has anxiety and selective mutism, which has made a lot of progress hrough some good software and treatment, though no traceable PANDAS diagnosis.

We do definetely see and increase in anxious behavior with gluten ingestion, though it, alas, did not cure ths issues.

Patty

Patty, thank you for your response! We have been helped so much by going gluten free but it has not solved all of our issues either. Tonight I am thinking one has pandas but my highly gluten intolerant dd, I just don't know. I don't see as much up and down with her so she may just have her issues that will hopefully continue to improve as she gets older. I just have to wait to get the test results and see what happens.

Susan

swalker Newbie
swalker
Posted

I suggest "Brain Allergies" by William Philpott. He is a practicing Psychiatrist that cured a variety of mental differences by elimatinating foods and/or environmental stimulants (like natural gas, mold etc).

Keeping a detailed food and behaviour diary may show some associations. Being that PANDAS seems to come on after an infection, I'd suggest probiotics as well to make sure they have lots of healthy flora. Specific blood testing for nutritional deficiencies may be very helpful too.

  • 1 year later...
Isabel's Mom Newbie
Isabel's Mom
Posted

Just wondering if anyone here has any experience with the autoimmune disease PANDAS with their children. Both my girls may have it and I am curious to talk to anyone who has children with this and gluten issues.

Thanks.

susan

Hi. My daughter has celiac disease and has been gluten free for a year and a half. She had strep throat 3 weeks ago and today I believe we figured out that she has Pandas. I have been online all day trying to find out everything I can about Pandas and would love to talk to you about what you have found out to date. Thanks for any help.

Cathy

Roda Rising Star
Roda
Posted

I can tell when my boys have a strep infection by their behavior. My youngest (almost 6) is on an antibiotic right now for strep. He had a slight sore throat about 5 days before I took him to the ped and the day I took him the only thing that was off was his "melt down" he had had that morning. Low and behold he had strep. He is on day 8 of his antibiotic and he had another "melt down" this morning. He threw himself on the floor and was having a temper tantrum. He woke up this morning fine and what set him off was his not wanting to wear his sandals. He has become rather fixated on his "sandals" and shoes in general over the last several months. I don't know if it could be PANDAS but his behavoir is definately not normal when he has strep.

Dixiebell Contributor
Dixiebell
Posted

Mystery Diagnosis had an episode on not to long ago called 'troublesome child' and they found out the child had PANDAS. If I am not mistaken, I think he had strep in his brain.

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

Celiac.com Sponsor (A8-M):


  • 3 years later...
surviormom Rookie
surviormom
Posted

Yes, My 13 ds has PANDAS. His OCD started when he was 7, responded very well to CBT. Some social anxiety started to reemerge last spring, and following antoher strep throat infection this winter, the OCD came back in gangbuster form. He has been gluten free only since this Feb--his anxiety did improve some off gluten, but it didn't go away, He just began medication a few weeks ago b/c he wanted it.

Interestingly, he had lots of constant complaints of stomach aches, and gassiness when he was younger. When we started really talking about the OCD and treating it, he virtually stopped complaining about belly pain--I had assumed that it was caused by anxiety, though at that time, I had also started a elimination diet and cut our wheat ( not gluten) for a while, We hve only entered the gluten free world n earnest almost 5 years ago when dd #2 was born. I am the onl one officially diagnosed with celiac at this point, though the whole house is gluten free, and only one dd, 10, and my husband ever eat i outside of the house. She also has anxiety and selective mutism, which has made a lot of progress hrough some good software and treatment, though no traceable PANDAS diagnosis.

We do definetely see and increase in anxious behavior with gluten ingestion, though it, alas, did not cure ths issues.

Patty

How did you get through anxiety and selective mutism?

kareng Grand Master
kareng
Posted

How did you get through anxiety and selective mutism?

We hasn't been on the forum for a few years so you might not get an answer.

Archived

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

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


  • Member Statistics

    • Total Members
      132,397
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.