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