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

@minajo
Hi Maureen,
I'm so sorry to hear you're facing these additional challenges with your daughter right now.
Reading through your posts, Kerry's name came right to mind — she also has a son with autism and epilepsy, living in a special home, who dealt with GI issues if I can remember well. @keeg1010 , could you perhaps share some of what helped you navigate Keegan's GI treatment? I'd really appreciate it. 💜
On a different note, you also mentioned your daughter's 4-month hormone replacement trial (estrogen) seemed to make things worse, including her seizures. This actually connects to me — I have a history of catamenial epilepsy (seizures that fluctuate with hormonal cycles), and I was recently diagnosed with menopause too. My neurologist already advised me that, if I do start hormone replacement, pure estrogen should be avoided given my catamenial epilepsy, with progesterone added alongside it instead, since pure estrogen can sometimes worsen seizures in women with this kind of epilepsy.
Has your daughter ever been diagnosed with catamenial epilepsy? If not, this might be something worth raising with her neurologist, given what happened during the estrogen trial.
Sending you much strength during this challenging time. 🙌💜
Chris

@minajo I am so sorry to hear you and your daughter are struggling with so many issues. It's very difficult when your child is non-verbal. You have to be able to read their body language and know them like you know yourself so you can pick up when somethings off. I know you are waiting on an "official" diagnosis of celiac disease. You did mention your daughter was lactose intolerant when she was a kid? Did you have her on any special diet then? Has she been tested since? I know it's difficult having to implement a special diet in a residential home. How receptive are the providers? Has she ever had an endoscope?
My son Keegan is 28 now. He also has autism, cerebral palsy, is non-verbal, and was diagnosed with adult-onset Epilepsy. Growing up, he had many GI issues and still has a few but they are much improved. Growing up, Keegan's gastroenterologist performed an endoscope every year, for over 7 years. Keegan has intolerances to certain foods (not "true" allergies) but certain foods affected him and he had a leaky gut. Keegan's endoscopes showed GERD, gastritis, eosinophilic esophagitis, pancreatic insufficiency, a peptic ulcer, chronic constipation, and a "previous viral insult" to his small intestine that nobody could ever figure out. We had Keegan on a dairy, casein, wheat, gluten, soy, and corn free diet for 7 years. As he got older, his endoscopes were only showing reflux. We reintroduced foods, one a time, for 3 months at a time to see how he did and if he had any reaction. He's now able to eat most anything but it took a lot of time.
One thing you mentioned was your daughter has a recurrent cough and upper respiratory infections. When Keegan was younger, he had chronic "phlegm" and ear infections. We found out it was related to his dairy intolerance. Once we removed dairy, all those symptoms stopped.
I can't speak much on the estrogen replacement. It's a difficult situation you and your daughter are dealing with. As far as the providers in the home, do you have a good relationship that you can work together and create a diet that's appropriate for your daughter? I would also recommend talking with your GI about an endoscope, so you can see what's actually going on inside. If you do end up implementing a diet, I would make sure you have the providers journal what foods she has for breakfast, lunch, and dinner. That way, if she's having a reaction or her behavior is off, you may be able to pinpoint what's causing the issue.
I hope this has been helpful. Just know, you are not alone and you will always have support here.
Kerry

Thank you so much for replying!
So very much with our daughter, she did have biopsy at age 6 I think with no results but lactose intolerant so we did that.. years passed, dealing with periods etc.. but no awful diarrhea or gi symptoms
At age 32 first tonic clonic seizure, dr thought from sleep deprivation but she's never slept well..
Hospitalized, several times, scans, EEG etc
Put on depakote, major ammonia elevation, changed to Dilantin, for 12 yrs, behaviors often, saw epileptologist, changed to zonisamide, gained 24 #in year so pcp did tests, nothing abnormal, finally attributed to Zonisamide, changed to Lamictal, now I research and found dilantin and lamictal can cause iga deficiency which showed up testing for celiac
So now 2 new diagnosis
Carehome is 6 bed, 2:1 ratio and they started Lisa's own pantry, trying very hard to follow g/ f as after genetic DNA test showed positive, g. i. immediately put her g/f and I didn't put her thru biopsy as she's traumatized from 50 days in hospital with sigmoidectomy late 2024
Had rough 2 years, just a fluke we tested for celiac so going with the diet but 2 weeks in and her behaviors worse
Hoping as her body adjusts she'll feel better
So much more , just can't type it all but carehome is excellent, I'm there and at her day program a lot so I'm trying to get everyone on board but even weekend outings to fast food mean she brings her own lunch, so hard she's " low functioning" ,not understanding it all..
Another new journey:(
Thank you again!!