Fainting and blackouts

[KaysMomma]

We were told not even two weeks ago my daughter (12 y.o.) had the highest celiac level her family doctor has ever seen. I don't know the number and can't get the lab results for a couple days. It will be a few weeks before she sees the g.i. doctor. We started a g.f. diet right away. After a week we went out to eat with friends. She ordered what we thought was safe. Apparently it was not. About 20 or 30 min later she was having hot flashes, her stomach swelled noticeably. She was shaking violently and crying. She didn't know what was wrong but just kept saying she didn't feel good. The episode lasted maybe 2 or 3 minutes.  She told me later while my friends and I were trying to calm her and determine whether I needed to call an ambulance that she was blacking out but could still hear. Her stomach continued to bother her later. So I'm pretty terrified and we won't be eating out any time soon but I'm curious what reasons celiac disease lands people in the hospital for? I understand loss of fluids and electrolyte imbalance but is fainting an emergency?  Has anyone else experienced an episode like she had? Perhaps it wasn't gluten related at all.

[trents]

Perhaps it was something else besides gluten, especially if she has never had this kind of reaction when consuming gluten previously. Her reaction sounds like anaphylaxis. Having said that, most celiacs will tell you that once they have been off gluten for a significant period they lose all tolerance to it and getting "glutened" makes them quite ill. But I would think it would take longer than two weeks off of gluten to get that kind of response to being glutened.

Please hear me now! Did the doctor who ordered the antibody tests not warn you that going off gluten before all testing is complete will likely sabotage the test results? The Mayo Clinic guidelines for the pretest gluten challenge before an endoscopy/biopsy is the daily consumption of two slices of wheat bread (or the gluten equivalent) for at least two weeks leading up to the day of the biopsy. If you go off gluten before testing is complete, the inflammation ceases and the villi that line the small bowel begin to heal. The biopsy is looking for damage to the villi.

[Jays911]

58 minutes ago, KaysMomma said:

We were told not even two weeks ago my daughter (12 y.o.) had the highest celiac level her family doctor has ever seen. I don't know the number and can't get the lab results for a couple days. It will be a few weeks before she sees the g.i. doctor. We started a g.f. diet right away. After a week we went out to eat with friends. She ordered what we thought was safe. Apparently it was not. About 20 or 30 min later she was having hot flashes, her stomach swelled noticeably. She was shaking violently and crying. She didn't know what was wrong but just kept saying she didn't feel good. The episode lasted maybe 2 or 3 minutes.  She told me later while my friends and I were trying to calm her and determine whether I needed to call an ambulance that she was blacking out but could still hear. Her stomach continued to bother her later. So I'm pretty terrified and we won't be eating out any time soon but I'm curious what reasons celiac disease lands people in the hospital for? I understand loss of fluids and electrolyte imbalance but is fainting an emergency?  Has anyone else experienced an episode like she had? Perhaps it wasn't gluten related at all.

Might be gluten ataxia. Hang in there. 

[KaysMomma]

7 minutes ago, trents said:

Perhaps it was something else besides gluten, especially if she has never had this kind of reaction when consuming gluten previously. Her reaction sounds like anaphylaxis. Having said that, most celiacs will tell you that once they have been off gluten for a significant period they lose all tolerance to it and getting "glutened" makes them quite ill. But I would think it would take longer than two weeks off of gluten to get that kind of response to being glutened.

Please hear me now! Did the doctor who ordered the antibody tests not warn you that going off gluten before all testing is complete will likely sabotage the test results? The Mayo Clinic guidelines for the pretest gluten challenge before an endoscopy/biopsy is the daily consumption of two slices of wheat bread (or the gluten equivalent) for at least two weeks leading up to the day of the biopsy. If you go off gluten before testing is complete, the inflammation ceases and the villi that line the small bowel begin to heal. The biopsy is looking for damage to the villi.

The ordering doctor simply said absolutely no gluten. I did ask the g.i. office when they called to schedule and they said that since they had not seen my daughter yet that we should follow her primary care doctors directions. I was skeptical to start g.f. as I have read the guidelines you were referring to. However, we have been struggling for an answer of some sort for a while and getting rather nervous.  She has had other shaking spells but not so violent. Lots of pain, headaches, skin issues and such but it was also occurring with other foods. Allergic to everything except food. All progressively getting worse. We have accepted she has celiac even without a biopsy and my husband refused to let her keep eating gluten while knowing it was damaging her. Hopefully her g.i. doctor understands. 

[trents]

I understand where you are at with this but don't be surprised if the biopsy results are inconclusive. I would hate to see it unfold this way because it would interject an element of uncertainty. Hopefully, the damage to the villi is significant enough that being off gluten for 3 weeks will not invalidate the biopsy. Your other option is just to forgo the biopsy. If her antibody tests numbers are really high there's not much doubt anyway that she has celiac disease. In the UK, it is common practice to forgo the biopsy if the tTG-IGA serum tests are 10x or more greater than normal.

[KaysMomma]

7 minutes ago, trents said:

I understand where you are at with this but don't be surprised if the biopsy results are inconclusive. I would hate to see it unfold this way because it would interject an element of uncertainty. Hopefully, the damage to the villi is significant enough that being off gluten for 3 weeks will not invalidate the biopsy. Your other option is just to forgo the biopsy. If her antibody tests numbers are really high there's not much doubt anyway that she has celiac disease. In the UK, it is common practice to forgo the biopsy if the tTG-IGA serum tests are 10x or more greater than normal.

Yes, my hope is that the specialist will be ok with forgoing the biopsy.  She has so many specific symptoms I would hate to put her through it. Hopefully we can just watch the serum levels fall over time. Thanks for your response. 

[trents]

If you don't want your daughter to go through with a biopsy, you can always veto (tactfully, of course) what the doctor wants. The doc may agree to regular antibody testing, say every 6 months or yearly to check healing progress and compliance with the gluten free diet. If her antibody levels are quite high that certainly seems like a reasonable course of action.

[RMJ]

Scientists are starting to study what causes rapid and severe reactions to gluten in some with celiac disease, and one possibility is cytokine release. 

Here is a fairly readable paper that explains it:

Patient factors influencing acute gluten reactions and cytokine release in treated coeliac disease

I hope your specialist accepts symptoms and blood tests to diagnose and that you quickly learn how to avoid gluten contamination.

[KaysMomma]

23 minutes ago, trents said:

If you don't want your daughter to go through with a biopsy, you can always veto (tactfully, of course) what the doctor wants. The doc may agree to regular antibody testing, say every 6 months or yearly to check healing progress and compliance with the gluten free diet. If her antibody levels are quite high that certainly seems like a reasonable course of action.

Thanks for the idea. I've been trying to formulate in my head how to do that without insulting him.

[knitty kitty]

Getting an endoscopy with biopsies (with or without gluten before hand) may be beneficial as it would provide a baseline with which to compare future results.  It would give an idea of how much damage has been done, and be preventative for other possible problems.  

Do have your daughter's vitamin and mineral deficiencies addressed as part of proper follow up care for Celiac people.  And do get checked for Celiac Disease yourself and your husband because Celiac Disease is genetic.  

The Autoimmune Protocol diet is wonderful for healing. The AIP diet was developed by a doctor with Celiac and has been scientifically shown to promote healing.

Hope this helps!

[KaysMomma]

28 minutes ago, knitty kitty said:

Getting an endoscopy with biopsies (with or without gluten before hand) may be beneficial as it would provide a baseline with which to compare future results.  It would give an idea of how much damage has been done, and be preventative for other possible problems.  

Do have your daughter's vitamin and mineral deficiencies addressed as part of proper follow up care for Celiac people.  And do get checked for Celiac Disease yourself and your husband because Celiac Disease is genetic.  

The Autoimmune Protocol diet is wonderful for healing. The AIP diet was developed by a doctor with Celiac and has been scientifically shown to promote healing.

Hope this helps!

I will definitely look into the diet. We plan to get tested, as well as our boys. Thank you!

[sensitive celiac]

19 hours ago, KaysMomma said:

We were told not even two weeks ago my daughter (12 y.o.) had the highest celiac level her family doctor has ever seen. I don't know the number and can't get the lab results for a couple days. It will be a few weeks before she sees the g.i. doctor. We started a g.f. diet right away. After a week we went out to eat with friends. She ordered what we thought was safe. Apparently it was not. About 20 or 30 min later she was having hot flashes, her stomach swelled noticeably. She was shaking violently and crying. She didn't know what was wrong but just kept saying she didn't feel good. The episode lasted maybe 2 or 3 minutes.  She told me later while my friends and I were trying to calm her and determine whether I needed to call an ambulance that she was blacking out but could still hear. Her stomach continued to bother her later. So I'm pretty terrified and we won't be eating out any time soon but I'm curious what reasons celiac disease lands people in the hospital for? I understand loss of fluids and electrolyte imbalance but is fainting an emergency?  Has anyone else experienced an episode like she had? Perhaps it wasn't gluten related at all.

Please be aware that celiac and gluten exposure can cause seizures. I had it happen for about 10 years, with grand mal seizures, and with doctors denying thr possibility, before it was proven in a seizure lab by having me purposely eat gluten to start a seizure that could be recorded. Even after the proof, I had doctors denying the possibility. I now have them under control by a strict gluten free diet that is based on I do not eat anything prepared outside my kitchen unless it is from a store and either marked gluten free, the manufacturer says it is gluten free in writing such as on their website, or it is an item like fresh fruits and veggies. Even meat, if processed in the store where they also create and handle stuffed meats or breaded meat, is not safe unless you speak with the meat manager.

If I do go to a restaurant or get together, I either eat first or bring my own food, or I order a beverage that is sealed in a bottle or can, as drinks are often dispensed with shared delivery, like a gun, and can be cross contaminated.

What you describe sounds like possible absence seizures. Please do not ignore them. They can progress as mine did.

[KaysMomma]

18 minutes ago, sensitive celiac said:

Please be aware that celiac and gluten exposure can cause seizures. I had it happen for about 10 years, with grand mal seizures, and with doctors denying thr possibility, before it was proven in a seizure lab by having me purposely eat gluten to start a seizure that could be recorded. Even after the proof, I had doctors denying the possibility. I now have them under control by a strict gluten free diet that is based on I do not eat anything prepared outside my kitchen unless it is from a store and either marked gluten free, the manufacturer says it is gluten free in writing such as on their website, or it is an item like fresh fruits and veggies. Even meat, if processed in the store where they also create and handle stuffed meats or breaded meat, is not safe unless you speak with the meat manager.

If I do go to a restaurant or get together, I either eat first or bring my own food, or I order a beverage that is sealed in a bottle or can, as drinks are often dispensed with shared delivery, like a gun, and can be cross contaminated.

What you describe sounds like possible absence seizures. Please do not ignore them. They can progress as mine did.

Thank you for the warning.  I am calling g.i. today to ask for a quicker appointment. She woke me up lastnight broke out all over in hives and itching. Nausea again and said she was shaking on the inside but I couldn't see it visibly this time. The only possible thing I could think of was a few bites of canned chicken which had modified food starch. According to celiac.org that should be safe but maybe not. 

[sensitive celiac]

Cross contamination is often a possibility. Either from purchased foods, going out to eat, or from mistakes in your home, like shared condiments or even dish towels that might have wiped gluten hands or counters.  My GI didn't do a thing to confirm or deny seizures. I went to a neurologist, and he sent me to a seizure lab.  They took my seizure free time as no seizures, til they provoked it with gluten. 

[Patty harrigan]

I have passed out twice after eating out. I have been gluten free for about 12 years and had no intestinal  reaction to gluten until I became gluten free. My reactions to accidental glutening has become progressively more severe. I started vomiting and shaking with cold for hours. The last 2 times I was glutened I went unconscious. I was thoroughly tested at Harvard for food allergies that might have developed but all was negative. The doctor treating me advised me never to eat anything prepared outside my own kitchen. I followed his advice and have never had another reaction. That’s been 3 years. I too bring food or eat first and I live in fear of it ever happening again. I even carry my own small kitchen when I visit my grandkids. Terrible way to live. It is very common for reactions to get worse the further away from eating gluten you go. I was told this by Dr Peter Green form Columbia University Celiac Center.

[Jays911]

2 minutes ago, Patty harrigan said:

I have passed out twice after eating out. I have been gluten free for about 12 years and had no intestinal  reaction to gluten until I became gluten free. My reactions to accidental glutening has become progressively more severe. I started vomiting and shaking with cold for hours. The last 2 times I was glutened I went unconscious. I was thoroughly tested at Harvard for food allergies that might have developed but all was negative. The doctor treating me advised me never to eat anything prepared outside my own kitchen. I followed his advice and have never had another reaction. That’s been 3 years. I too bring food or eat first and I live in fear of it ever happening again. I even carry my own small kitchen when I visit my grandkids. Terrible way to live. It is very common for reactions to get worse the further away from eating gluten you go. I was told this by Dr Peter Green form Columbia University Celiac Center.

 

2 minutes ago, Patty harrigan said:

I have passed out twice after eating out. I have been gluten free for about 12 years and had no intestinal  reaction to gluten until I became gluten free. My reactions to accidental glutening has become progressively more severe. I started vomiting and shaking with cold for hours. The last 2 times I was glutened I went unconscious. I was thoroughly tested at Harvard for food allergies that might have developed but all was negative. The doctor treating me advised me never to eat anything prepared outside my own kitchen. I followed his advice and have never had another reaction. That’s been 3 years. I too bring food or eat first and I live in fear of it ever happening again. I even carry my own small kitchen when I visit my grandkids. Terrible way to live. It is very common for reactions to get worse the further away from eating gluten you go. I was told this by Dr Peter Green form Columbia University Celiac Center.

I started falling last year. Diagnosed with Gluten ataxia. Have your magnesium levels been checked? Once my docs got my magnesium addressed, no more falls. Also, look into GliadinX or it’s competitors. They prevent cross contamination for me. Makes eating out much safer. Blessings. 

[Patty harrigan]

This was not dizziness or falling. I was laying on a gurney in the hospital one time and the other I was laying on the floor vomiting. This was a severe reaction to cross contamination that started 2-3 hrs after eating out. I go into shock.

[knitty kitty]

Thought this article would be of interest here...

Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/

 

[KaysMomma]

On 8/30/2022 at 7:51 PM, Patty harrigan said:

I have passed out twice after eating out. I have been gluten free for about 12 years and had no intestinal  reaction to gluten until I became gluten free. My reactions to accidental glutening has become progressively more severe. I started vomiting and shaking with cold for hours. The last 2 times I was glutened I went unconscious. I was thoroughly tested at Harvard for food allergies that might have developed but all was negative. The doctor treating me advised me never to eat anything prepared outside my own kitchen. I followed his advice and have never had another reaction. That’s been 3 years. I too bring food or eat first and I live in fear of it ever happening again. I even carry my own small kitchen when I visit my grandkids. Terrible way to live. It is very common for reactions to get worse the further away from eating gluten you go. I was told this by Dr Peter Green form Columbia University Celiac Center.

Thanks for sharing your experience.  May I ask, when you pass out do you wake up on your own? Does it constitute an e.r. visit?

[Patty harrigan]

9 hours ago, KaysMomma said:

Thanks for sharing your experience.  May I ask, when you pass out do you wake up on your own? Does it constitute an e.r. visit?

I have gone to the ER as my brother, who is an ER doctor, felt I should be monitored. I passed out while there. The ER staff had no idea what to do other than give me sofran to stop the vomiting. I went unconscious while there and they actually thought I fell asleep. The  other time I was in a car driving, pulled over and passed out. I wake up on my own but it was absolutely terrifying. After the vomiting stops, I get so cold that I have to be wrapped in heating pads and blankets. It is bone- breaking, shivering, bordering on convulsions. Then it all just stops and I go into a depression that last for months. All I do is cry. Now, I am absolutely not a depressed person. It’s been 3 yrs since my last reaction as I don’t eat out or eat food that myself or my husband have made and I am happy, healthy and get up every morning eager to face the day. I live in a prison of sorts but there is nothing worse than being glutened. Nothing.

[knitty kitty]

On 8/30/2022 at 6:51 PM, Patty harrigan said:

I have passed out twice after eating out. I have been gluten free for about 12 years and had no intestinal  reaction to gluten until I became gluten free. My reactions to accidental glutening has become progressively more severe. I started vomiting and shaking with cold for hours. The last 2 times I was glutened I went unconscious. I was thoroughly tested at Harvard for food allergies that might have developed but all was negative. The doctor treating me advised me never to eat anything prepared outside my own kitchen. I followed his advice and have never had another reaction. That’s been 3 years. I too bring food or eat first and I live in fear of it ever happening again. I even carry my own small kitchen when I visit my grandkids. Terrible way to live. It is very common for reactions to get worse the further away from eating gluten you go. I was told this by Dr Peter Green form Columbia University Celiac Center.

 

2 hours ago, Patty harrigan said:

I have gone to the ER as my brother, who is an ER doctor, felt I should be monitored. I passed out while there. The ER staff had no idea what to do other than give me sofran to stop the vomiting. I went unconscious while there and they actually thought I fell asleep. The  other time I was in a car driving, pulled over and passed out. I wake up on my own but it was absolutely terrifying. After the vomiting stops, I get so cold that I have to be wrapped in heating pads and blankets. It is bone- breaking, shivering, bordering on convulsions. Then it all just stops and I go into a depression that last for months. All I do is cry. Now, I am absolutely not a depressed person. It’s been 3 yrs since my last reaction as I don’t eat out or eat food that myself or my husband have made and I am happy, healthy and get up every morning eager to face the day. I live in a prison of sorts but there is nothing worse than being glutened. Nothing.

This sounds like Refeeding Syndrome.  

Refeeding Syndrome occurs when malnourished people take in too many carbohydrates which causes an electrolyte imbalance which can cause a sudden drop in blood pressure (fainting), feeling extremely cold and not being able to warm up, convulsions, seizures, loss of consciousness and deep, dark depression.  

I've experienced this.  My doctors didn't recognize thiamine deficiency.  

Thiamine deficiency figures in here because thiamine is needed to turn carbohydrates into energy for the body.  Thiamine can be depleted rapidly with vomiting and diarrhea. 

A gluten free diet can be deficient in thiamine.  Gluten containing products are required by law to be enriched with thiamine while gluten free facsimile foods are not.  Preservatives can deplete thiamine in processed foods.  Caffeinated beverages, tea and coffee all deplete thiamine.  And add in malabsorption caused by Celiac Disease.

Here are some articles.  See if your symptoms match.

https://www.medicalnewstoday.com/articles/322120

And...

Refeeding syndrome: what it is, and how to prevent and treat it

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

And...

Life-threatening onset of coeliac disease: a case report and literature review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7223027/

And...

Refeeding syndrome in adults with celiac crisis: a case report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791168/

And...

Nutritional management of celiac crisis in an elderly adult: A case report of the rare presentation of celiac disease in a 75-y-old woman

https://pubmed.ncbi.nlm.nih.gov/32599449/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Discuss this with your doctors!  

[KaysMomma]

3 hours ago, Patty harrigan said:

I have gone to the ER as my brother, who is an ER doctor, felt I should be monitored. I passed out while there. The ER staff had no idea what to do other than give me sofran to stop the vomiting. I went unconscious while there and they actually thought I fell asleep. The  other time I was in a car driving, pulled over and passed out. I wake up on my own but it was absolutely terrifying. After the vomiting stops, I get so cold that I have to be wrapped in heating pads and blankets. It is bone- breaking, shivering, bordering on convulsions. Then it all just stops and I go into a depression that last for months. All I do is cry. Now, I am absolutely not a depressed person. It’s been 3 yrs since my last reaction as I don’t eat out or eat food that myself or my husband have made and I am happy, healthy and get up every morning eager to face the day. I live in a prison of sorts but there is nothing worse than being glutened. Nothing.

My goodness! No wonder you are so careful with your food. I'm glad your doing well for so long.  I'm hoping, ofcourse, that my daughter doesn't have another blacking out episode but it does make me feel a bit better to know you didn't have to have life saving efforts taken.

[sensitive celiac]

On 8/24/2022 at 2:13 PM, KaysMomma said:

We were told not even two weeks ago my daughter (12 y.o.) had the highest celiac level her family doctor has ever seen. I don't know the number and can't get the lab results for a couple days. It will be a few weeks before she sees the g.i. doctor. We started a g.f. diet right away. After a week we went out to eat with friends. She ordered what we thought was safe. Apparently it was not. About 20 or 30 min later she was having hot flashes, her stomach swelled noticeably. She was shaking violently and crying. She didn't know what was wrong but just kept saying she didn't feel good. The episode lasted maybe 2 or 3 minutes.  She told me later while my friends and I were trying to calm her and determine whether I needed to call an ambulance that she was blacking out but could still hear. Her stomach continued to bother her later. So I'm pretty terrified and we won't be eating out any time soon but I'm curious what reasons celiac disease lands people in the hospital for? I understand loss of fluids and electrolyte imbalance but is fainting an emergency?  Has anyone else experienced an episode like she had? Perhaps it wasn't gluten related at all.

Possibly she had a seizure?  I didn't land in the hospital for it, but it took many years of ER trips before I got put in an epilepsy clinic. They said it wasnt possible and had that look on their face that said they were laughing at me. My doctor wouldn't let them release me until they tested until they checked for gluten.  They decided that was the cause.  I had been careful of gluten before that, but the diagnosis caused me to stop eating outside my house. I will go out and either eat ahead and order a soda brand I know is safe, or take my food.  No seizures since doing that.

[Val R]

Hi, did you ever figure this out? Should I be concerned? I pass out, like out cold every time I get contaminated. out like a light for 2-3 hrs then fog, heat ache and join pain for 2-3 days. It is aweful! Let me know, thanks!😊

[Patty harrigan]

All the doctors I have seen think it’s a vasovagel reaction. I only eat food prepared in my own kitchen so I have not been glutened for nearly five years. It’s a hard way to live but passing out while behind the wheel is not ok by any stretch. And BTW, I’m only out for a very short time. Going out for a few hours must be very very scary!