Celiac disease & seizures

[Sarah Lee in OZ]

11 days ago my son (19yrs) had 3 grand-mal seizures back-to-back minutes after eating a slice of pizza which shut his body down and he had to be put on life support for nearly 3 days. He had 2 more seizures when he first arrived at hospital. He was unable to breathe on his own during this time and his kidneys had shut down.  HE was life flighted to one of the top epilepsy centres in the nation University of Kansas Medical Hospital In Kansas City, where upon arrival he had another seizure. They performed  Several MRIs, Along with cat scans, & an EEG. They found Nothing. After coming out of his comatose state, 2.5 days later, with the ability to breathe on his own It still took a couple more days for his kidneys to heal. 6 days after he almost died they released him from the hospital with the diagnosis of epilepsy & placed him on 1000mg of Keppra. The only thing he had eaten while at the hospital was a little fruit. The day after he returned home I cooked him up a big pot of chicken noodle soup. Minutes after eating it he went into seizures and was rushed by ambulance back to the hospital, he had another one on the way to the hospital. This seizure left him almost blind for 4hr.s. Afterwards he felt fine. The next day at the hospital I brought him some tacos and within minutes he had another seizure, then another one. The next day they placed him on an EEG for 24 hours and determined he suffered from "PRES" (white matter vasogenic edema affecting the posterior occipital and parietal lobes of the brain predominantly.). So what causes "PRES" ??? The docs don't know. My theory is it is a Autoimmune disease. Most likely CELIAC DISEASE. Here is why

1. I carry the DNA to increase the risk of developing CELIAC DISEASE 

2. He caught Mono the end of his sophomore year 

3. Always suffered from weak teeth, no enamel 

4. Abdominal pain

5. Weak bones (2 breaks his Jr. year.)

6. Extreme diarrhea 

7. Constipation 

8. Insomnia 

9. Fatigue... always tired but kept pushing

10. Extreme night sweats 

11. Depression 

12. Anxiety 

13. Panic attacks 

14. Malnutrition 

15. Seizures 

The doctors are blowing my theory off. And setting up an appointment with GI months down the road. I have changed his diet into a gluten free diet and no seizures in 4 days, but that might be because of his seizure medication 

1250mg of Keppra x2 daily & 100mg of Vitpat x2 Daily

How do I find out if the diet is helping.

And if the meds are not needed than are they harmful.  

How to I get a doctor to take me seriously??? 

Please help,

Sarah Lee in OZ

 

 

[trents]

1 hour ago, Sarah Lee in OZ said:

11 days ago my son (19yrs) had 3 grand-mal seizures back-to-back minutes after eating a slice of pizza which shut his body down and he had to be put on life support for nearly 3 days. He had 2 more seizures when he first arrived at hospital. He was unable to breathe on his own during this time and his kidneys had shut down.  HE was life flighted to one of the top epilepsy centres in the nation University of Kansas Medical Hospital In Kansas City, where upon arrival he had another seizure. They performed  Several MRIs, Along with cat scans, & an EEG. They found Nothing. After coming out of his comatose state, 2.5 days later, with the ability to breathe on his own It still took a couple more days for his kidneys to heal. 6 days after he almost died they released him from the hospital with the diagnosis of epilepsy & placed him on 1000mg of Keppra. The only thing he had eaten while at the hospital was a little fruit. The day after he returned home I cooked him up a big pot of chicken noodle soup. Minutes after eating it he went into seizures and was rushed by ambulance back to the hospital, he had another one on the way to the hospital. This seizure left him almost blind for 4hr.s. Afterwards he felt fine. The next day at the hospital I brought him some tacos and within minutes he had another seizure, then another one. The next day they placed him on an EEG for 24 hours and determined he suffered from "PRES" (white matter vasogenic edema affecting the posterior occipital and parietal lobes of the brain predominantly.). So what causes "PRES" ??? The docs don't know. My theory is it is a Autoimmune disease. Most likely CELIAC DISEASE. Here is why

1. I carry the DNA to increase the risk of developing CELIAC DISEASE 

2. He caught Mono the end of his sophomore year 

3. Always suffered from weak teeth, no enamel 

4. Abdominal pain

5. Weak bones (2 breaks his Jr. year.)

6. Extreme diarrhea 

7. Constipation 

8. Insomnia 

9. Fatigue... always tired but kept pushing

10. Extreme night sweats 

11. Depression 

12. Anxiety 

13. Panic attacks 

14. Malnutrition 

15. Seizures 

The doctors are blowing my theory off. And setting up an appointment with GI months down the road. I have changed his diet into a gluten free diet and no seizures in 4 days, but that might be because of his seizure medication 

1250mg of Keppra x2 daily & 100mg of Vitpat x2 Daily

How do I find out if the diet is helping.

And if the meds are not needed than are they harmful.  

How to I get a doctor to take me seriously??? 

Please help,S

Sarah Lee in OZ

 

 

Sarah, welcome to the forum!

I strongly suspect you are correct in concluding your son has a problem with gluten, either celiac disease or gluten sensitivity. I would not wait for the appointment months away. I would pick up a home test kit for about $100 USD. https://www.imaware.health/at-home-blood-test/celiac-disease-screening. Unfortunately, many doctors are still very unaware of gluten-related diseases.

[GFinDC]

I think it would be good to ask his doctor to draw blood for a full celiac disease test panel now.  If you wait until you get one in the mail the antibodies may not show up by then.  Celiac disease antibodies decline after we stop eating gluten.  If he is not eating gluten now, then there may be no point in doing any celiac disease testing as it sound like it would be dangerous for him to consume any gluten.

Usually the requirement is to eat gluten daily for 2 weeks before an endoscopy and 8 to 12 weeks for the blood tests.  Generally the blood tests are done first and then an endoscopy is scheduled.

[knitty kitty]

Sarah, welcome to the forum!

I agree with @trents and @GFinDC, the time to do Celiac panel blood tests is now before his antibodies decline.

The symptoms you listed, particularly 4 and 6 through 15 inclusive, are symptoms of vitamin deficiencies, specifically Vitamin B1 Thiamine.

Celiac Disease causes malabsorption which results in malnutrition.  It's rare to have just one vitamin deficiency, but thiamine deficiency symptoms usually show up first because thiamine cannot be stored for long.  You can get a thiamine insufficiency in as little as nine days.

I've included some research articles and studies that may help you find answers for your son.

"How Can Something As Simple As Thiamine Cause So Many Problems?"

http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

And...

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

"Epileptic manifestations and vitamin B1 deficiency"

https://pubmed.ncbi.nlm.nih.gov/2044623/

And...

"Wernicke encephalopathy"

https://radiopaedia.org/articles/wernicke-encephalopathy?lang=us

And...

"Posterior reversible encephalopathy syndrome and Wernicke encephalopathy in patient with acute graft-versus-host disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6545363/#!po=22.9167

 

My doctors blew me off, too.  They are not trained to recognize vitamin deficiencies.  They missed obvious signs of vitamin deficiencies in me and threw pharmaceuticals at me.  I was sick because I was deficient in vitamins and minerals.  I was not sick because of a deficiency in pharmaceuticals.  I had developed Wernicke's and Pellagra.  I had seizures.  Supplementing with High dose Thiamine (allithiamine and benfotiamine), Niacin and other vitamins and minerals saved me.

Please continue being a wonderful advocate for your son!  Keep us posted on your progress.  

Hope this helps.

Kitty