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

Does This Sound Familiar

sugarsue

Recommended Posts

sugarsue Enthusiast
sugarsue
Posted

Does this behavior sound familiar to anyone? My 8 yr old dd is diagnosed gluten intolerant but she also is diagnosed with PANDAS (neurological reactions to strep infection). The PANDAS causes OCD and other intense behavior problems. She is undergoing some treatment for that and that, along with the gluten free diet have been what we have been doing to try to help her.

This can happen any time during the day but it is much worse at night. She will become worried that I am mad at her. Anything can trigger it. Then she will whine, plead, beg, cry "are you mad? don't be mad? you're mad right? Mommy, Mommy, Mommy, please, don't be mad" etc... and she won't stop. Nothing I do can get her to stop.

I am a mess from this. I can't even begin to explain how horrible it is to experience. I can't breathe, I need to get away, but she follows me everywhere with this. The more I try to get away, the worse she gets. She just won't stop. If I react, that's proof to her that I really am mad. If I don't react, she does not believe me that I'm really not mad.

I have been assuming all of her behavior issues are related to the PANDAS but recently I am wondering if this one is hidden gluten. I have allowed her to eat oats and other items that could have cross contamination, have not always checked her sauces at restaurants, etc. since she never had the gut reaction and is not diagnosed celiac. But recently she has had an obvious reaction to gluten that has made me wonder.

Of course I plan on tightening up her diet right away and see if it helps. I just thought I would come and post to see if this sounds like anything that anyone else experiences. I truly do not know how to handle this. My inability to help her, reason with her or just plain force her to stop is pushing me to the limit and I feel like I am going to lose my mind.

Susan

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

Celiac.com Sponsor (A8-M):


skigirlchar Newbie
skigirlchar
Posted

many post on here increased anxiety as a side effect to glutening.

for myself: the tighter i am w my gluten-free diet, the less i've experienced neuro issues such as vestibular migrains. when i do "cheat" i sometimes notice an increase of anxiety related behaviors such as increases in my need to make things work correctly (whether it's my finances, the laundry, or when moving getting things packed) and not "be a burden" on others. when i don't cheat i have no need to dwell on how my daily life may interact with others. i just do my thing.

lynnmb Rookie
lynnmb
Posted

This behavior is similar to what we have experienced over the years with our daughter who was recently diagnosed with Celiacs. She would have terrible outbursts that would start for no apparent reason and then they could last for up to an hour. She would follow me, yelling, chanting, crying etc if I tried to get away. She was inconsolable, would not respond to calm talking, yelling, comforting etc. I recently wondered if perhaps she was bipolar. It was exhausting for both of us. It occurred most often at night and in the mornings, before school, leading to many absences. I honestly feel that she felt so awful and tired from the undiagnosed problem that she was beside herself. This was a very typical behavior for her at age 7-10. We had some improvement as she got older, but the most dramatic improvement has been since we have gone gluten free. I wish you success with the gluten free diet, I know that it has resulted in marked improvement for our dauthter and our family in just one months time. Best wishes!

2sweetico Newbie
2sweetico
Posted

Dear Susan,

I'm fifteen years old and I was diagnosed a few months ago. My mom and I live alone and we are very close. She has been the best person for me through these tough times. I have many similar problems to your daughters and many symptoms stopped after I changed my diet. One of the most important foods to check are the sauces on food. Many sauces have gluten in them. Soy sauce is in a lot of things and it is not gluten free. Since she is so young, go buy some snacks and gluten free foods to replace rather than eliminate. They make a gluten free soy sauce and almost anything by Annie's is gluten free. Also, most meringues and macaroons are gluten free and even ice cream! You need to be there for her. I used to pass out in the bathroom and my mom would always come running. I would always cry because I didnt want her to worry or not sleep, but it made me feel so much better to know that she didnt mind because inside I was truly scared.

I hope that helps!

Jazmine

sugarsue Enthusiast
sugarsue
Posted
  • Author

Jazmine, thank you for your perspective as the child. That really helps. I want to be there for her and help her. It's just so hard to do when she feels bad and there is nothing I can do. I hope as she gets older it will get easier.

sugarsue Enthusiast
sugarsue
Posted
  • Author

This behavior is similar to what we have experienced over the years with our daughter who was recently diagnosed with Celiacs. She would have terrible outbursts that would start for no apparent reason and then they could last for up to an hour. She would follow me, yelling, chanting, crying etc if I tried to get away. She was inconsolable, would not respond to calm talking, yelling, comforting etc. I recently wondered if perhaps she was bipolar. It was exhausting for both of us. It occurred most often at night and in the mornings, before school, leading to many absences. I honestly feel that she felt so awful and tired from the undiagnosed problem that she was beside herself. This was a very typical behavior for her at age 7-10. We had some improvement as she got older, but the most dramatic improvement has been since we have gone gluten free. I wish you success with the gluten free diet, I know that it has resulted in marked improvement for our dauthter and our family in just one months time. Best wishes!

Lynn, this does sound very similar to my dd. I also have to worry about whether she is exposed to strep so this makes it so complicated. We have been gluten free for so long but really, probably too much of the little exposure. Thanks for the support.

sugarsue Enthusiast
sugarsue
Posted
  • Author

Skigirl, I find it very helpful to hear how gluten affects others to try to understand what she is going through. I am allergic to wheat so when I get it I itch. But I don't have the neurological stuff and it's so hard to understand. Do you do anything to help with your anxiety when you get glutened?

Susan

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

Celiac.com Sponsor (A8-M):


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):


  • 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.