Low iga results and aed

Hi, @minajo - I added your discussion here to Digestive Health, as well.

Thank you, I need help from all!! So difficult trying to get Drs to communicate with each other, I'm trying to do as much research as I can..
Thank you!!!!

@minajo
I'm not familiar with the difficulties you face but it seems most reasonable to change AEDs to allow the body to build up the igA levels. That seems better than treating complications. But I'm very knowledgeable about this subject. Does your daughter actually have signs of Celiac?
Take care,
Jake

Hello Jake
Well being that she's nonverbal we must go by her behaviors( profound autism) and always know if she's in pain behavior escalates
After the sigmoidectomy from volvolus late 2024 she has had many episodes of no stools for 2-3days, gets lactulose tho on miralax 2x day..
Sometimes abdomen gets slightly distended( unlike before sigmoidectomy when she was VERY distended)
and always has a lot of gas
Her sister who has ehlers danlos syndrome ( not a autoimmune disease) suggested the celiac panel
The tests that came out abnormal point to celiac but with her aversion to any building that looks medical doing endoscopy a huge difficult test and if serology point to celiac and treatment removing gluten ,seems doing diet changes could be very simple, does she need gluten to survive, course not!
She could still have some post op complications like strictures, adhesions but again that's difficult, needs IV, being restrained, exposure to radiation
It's all very, very hard and today she's doing the genetic testing that can rule out celiac, couple other tests, some for malabsorption so I'm waiting anxiously , but end result , change diet, see if behavior changes..
Also I researched her seizure med and lamictal can lower
Iga levels too so that in question, since low iga causes upper respiratory and g.i. illnesses
Changing seizure meds difficult too!
Gastro Dr is okay with changing diet tho I know she wants procedure ..
Well that's the sad story and in meantime this innocent girl suffers and cannot verbalize so I just see her deteriorating
It of course complicated things as she's in ( great) 6 bed group home and needs order to change diet!
Thank you for reading, reaching out
Sincerely maureen, Lisa's mom

@jakedduck1
I reread my post to you.
Iwas supposed to say "I'm NOT very knowledgeable on this subject.
Sorry about that,
Jake

No worries, anyone on this group who know anything about gluten free is a good support person as we will most likely start g/f after the latest genetic tests come back , hoping her dr accepts her disability, will go by the serology results without a biopsy!. Especially too, fast food choices as her carehome goes once a week on a outing and does lunch at several, particularly McDonald's , which as I noticed doesn't do many choices with their nuggets, breaded, french fries, no dedicated fryer, so gonna be bit difficult.
Thanks all for help!

@minajo
Hi Maureen,
I'm so sorry to hear this news about your daughter.
You are correct, Lamictal can lower IgA levels. Here is what I found about it:
Immunoglobulin A deficiency following treatment with lamotrigine — PubMed
https://pubmed.ncbi.nlm.nih.gov/27396372/
I'll also share my own experience. I noticed my stomach would get swollen every time I ate gluten after starting anti-seizure medications, so I eliminated it from my diet for a trial period of one month back in 2021. I felt much better and had fewer seizures. But because of the holidays, I went back to eating gluten and the symptoms and seizures returned. This convinced me to cut it out for good. It ended up reducing my seizures by about 60% over several months.
That said, I know your situation is more complex, since you're working toward an actual celiac diagnosis rather than general sensitivity.
If it's ever useful for comparison, I also found this piece interesting, though it reflects one doctor's perspective:
Epilepsy & Gluten Sensitivity — David Perlmutter, M.D.
https://drperlmutter.com/epilepsy-gluten-sensitivity/
Did I understand correctly that Lisa's gastro doctor is open to changing her diet, but would still prefer to also do the endoscopy?
I truly look forward to hearing how Lisa has done on her testing.
Chris