Adult daughter with autism, epilepsy, new diagnosis celiac disease

I am so sorry to hear that your daughter (and you) have been through so much!

It sounds like your daughter is in the process of being evaluated for gluten sensitivity/ Celiac Disease. Were these the only blood tests ordered to screen for Celiac? Some doctors only order these as they are known to be very accurate but there are others that can aid in getting a better picture. Here is the list of the entire Celiac panel that is often run by gastroenterologists:

Celiac Serology:
1. IgA antibody
2. Antigliadin Antibody IgG
3. Antigliadin Antibody IgA
4. Tissue Transglutaminase Antibody
5. Immunoglobulin A level

If any combination of the these tests come back indicating a possibility of Celiac Disease, the next step in making a diagnosis is often an endoscopy and small bowel biopsy to determine if there is damage to the villi that absorb nutrients.

Celiac Disease has over 200 symptoms, many of which would not send you to a gastroenterologist right away, but more likely other specialists. So when it comes to symptoms, anything is possible, although many doctors are truly unaware of this. I experienced episodes of paralysis and other neurological issues as well as Hashimotos before being diagnosed with Celiac Disease (my young daughter as well). It took twelve years for my diagnosis after my first onset of paralysis, likely because of the seeming lack of GI involvement (though I had severe intestinal damage).

In terms of the dietary requirements of a person with Celiac-- yes, it can be tricky, especially when living with others who are eating gluten, but it's not impossible. If your daughter is diagnosed with Celiac, there are different ways to do it depending on how her living situation is set up and how much space she has. With a diagnosis, she would be set up with a dietician who would (hopefully) be able to work with you both and her care team in her home to help make accomodations for her. There are also many YouTube videos that share how to set things up in a shared (gluten/Celiac) living space. It would be a learning curve for all but not impossible.

I hope this helps to answer some of your questions and that you find answers to your lingering questions, about your daughter's health, very soon!

Thank you so much for your reply!
Since she is nonverbal this is all very hard, I did find out too her seizure drugs can be a causative factor, not sure if they caused the original damage but who knows? Did it lead to volvolus and then her sigmoidectomy? Maybe, if small intestine was getting damaged..
I'm just so upset, thankfully we have a GI appt but sometimes she won't go, but maybe a video will work..
She'd have to be under general of course for biopsy and then those drugs are awful for her
After 50 days in hospital in late 2024 she won't even get out of car at hospital or imaging places..
Seems with enough positive test results and yes, her PCP did do all those, couple very abnormal igabeliw 15 and igG high at 164,so pretty definitive,why would she need biopsy,?
Taking her off trial of 4 months estrogen) thought might help if shes in menopause,50 now, made things worse) also messed with her seizure drug too, waiting on lab results .. no reply from neurology about questions of seizure med causing the celiac..
She's been just hard to manage all week, won't even get dressed, literally naked, ( all women, staff carehome)
Has to be fed just to get meds, food in
Her PCP out for 2 weeks who normally answers emails so another problem 😢
Thank you for letting me vent
Maureen, Lisa's mom

My 50 year old nonverbal autistic daughter, epileptic, sigmoidectomy 12/ 24 ,was just tested, dx celiac, also iga deficiency dx ,so many new diagnoses!Maybe the surgery triggered the celiac as symptoms, behavior much worse after but also my research shows lamictal for seizures can lead to iga deficiency !I know I need to copy this to autism, epilepsy, gi support groups , she is nonverbal too, her new diet very hard for her to understand. And she lives in 6 bed residential home so trying to get everyone on board about the food is very hard..If mentors could please post to other groups I would so appreciate it!thank you !

@minajo Welcome to the autoimmune diseases support group. And that you have posted on several other groups in hopes that you will reach the right people. The one question I have is are you working with a good dietician? Have you maybe found someone in your neighborhood or church who HAS celiac disease and could help you in person? We’ll hope that someone comes along soon to give you some answer .

@minajo, I added your discussion to the related groups of Autism, Autoimmune, Digestive Health and Epilepsy.

You may also be interested in joining this discussion group:
- Any parents caring for adult children? Let's share https://connect.mayoclinic.org/discussion/any-parents-caring-for-adult-children-lets-share/

I can imagine that managing your daugther's diet, helping her understand what to avoid and ensuring that her carers follow the plan is a real challenge. You can't be everywhere. Would it help to have visual guides? Like a poster of pictures of the favorite foods she can eat?

Thank you, yes, we have print out for day program, carehome has a nurse checking on things, she has her own pantry now, very hard for her to understand group outings when she can't have familiar foods, but this has to happen..
Right now, less than 2 weeks in, she's very restless, has insomnia, her autistic behaviors have increased so hoping as her system settles down she'll feel better
She has some good people in her " village"
Thanks to all for any suggestions!!

We are waiting for appointment with dietician, seems it has to be office appt tho I'd prefer carehome visit but insurance doesn't cover, actually celiac isn't covered by Medicare nor Medi Cal but she has kidney stage 3a so that does qualify her, but what a travistry that celiac isn't!! Especially with her many disabilities..
I've found Celiac Foundation a great resource with print outs and many in community saying which stores have g/f so things are happening,!
Thank you