Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac disease & seizures

Sarah Lee in OZ
 Share

Recommended Posts

Sarah Lee in OZ Newbie
Sarah Lee in OZ
Posted

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

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
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 Veteran
GFinDC
Posted

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 Grand Master
knitty kitty
Posted

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

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.