Level (100) Pain, Not Going To The Doctor Immeditely. Bad Call?

[casuallythere]

Hello,

This post is on the behalf of someone else that I know. This person has experienced Level (100) pain almost to where they will pass out. Happens around 2:00 A.M. in the morning. They say that it is like a bowl movement trying to pass through their system and once it passes they feel relief. Remember I am saying Level (100) pain with two (00) zeros. Not just Level 8 or Level 10 but Level (100).

This person works from home and has created an unrealistic climate for their condition. My thought process is that if they had a normal job to where they had to drive somewhere back and fourth having severe IBS Attacks like this; they would have been taken to the ER via an Ambulance.

Do you not believe this to be true or am I missing something?

Facts:

1. This person has been diagnosed with Celiac Disease via Blood Test only and has not gone through the required Biopsy. (Their Choice, refusing Biopsy)

2. This Level (100) pain IBS Attack has happened a hand full of times

3. This person has been adhering to a strict Gluten Free Diet

4. Normal Abdominal Ultrasound

5. Normal Colonoscopy with 1 non-cancerous Polyp

6. Does have Confirmed Diverticulosis

This person has set an appointment to see a GI Doctor that thinks his/her situation is kind of blown out of control and does not take him/her very seriously. Their appointment is set for end of this month. My thought process is that this person should go to the Emergency Room right away and get this figured out (Now)!

Questions:

1. What is worst case scenario here? What could they have?

2. What is best case scenario here?

3. Should they go to the Doctor now? Emergency Room or wait for their appointment at the end of the month?

4. One of his/her Doctor's thinks it my be an extreme/severe case of Anxiety? Could this actually be? I highly doubt it. He/She has been prescribed Anxiety Medication. I hope this is not overshadowing a bigger problem.

5. Am I being unreasonable asking this person to take this more seriously? Or am I putting unwanted pressure on this person? I care about this person.

Please Advise. Any help would be greatly appreciated. This person is stable at the moment however, he/she is dealing with the Flu.

Thanks!

 

 

[ch88]

2 hours ago, casuallythere said:

1. What is worst case scenario here? What could they have?

The friend should go to see a doctor, or go to the emergency room ASAP. Even if it is a digestive problem it shouldn't be ignored. Maybe its an infection? Damaged intestine? Leaking intestine? Cancer? A problem with a blood vessel? Maybe it is a heart attack if its chest pain? We aren't doctors so we really have no idea. The extreme pain though is a big warning sign of something and should be taken very seriously. 

 

[Ennis-TX]

A better description could help with identifying it IE location, does pressure hurt more, do certain positions alleviate it.  I would say go to the ER and have it checked if it happens again. Repetitive or long-lasting pain should be addressed immediately. The worse case could be cancer, appendicitis, pancreatitis, blocked duct, issues with gall bladder, ulcers, of course, many of these would have been ruled out with the ultrasound. I assume the pain passed?  OR it could be something minute like a trapped gas bubble in the upper intestines, cramping, or a flare of another GI issues like UC, Crohn's, etc.

[ravenwoodglass]

Being awoken in the middle of the night by extreme pain and the need to have a bowel movement is not IBS. According to my GI that is a hallmark sign of celiac. IMHO the first thing that he/she should do is call their doctor and order a repeat panel. They don't have to wait for another attack or for an appointment. Gluten can be sneaky and your friend may have gluten getting in somewhere. It wouldn't be a bad idea to ask the GI doctor's office to put them on a cancelation list if they can get in on short notice. 

If they do have another attack it wouldn't hurt to go to the ER to be on the safe side if it happens before he/she can get into the doctor.

[Fenrir]

I'm no Dr. but if you have pain that wakes you at night that's something that should be treated or evaluated immediately. Extreme abdominal pain can be a sign of many things including bowel obstruction (can happen with extreme constipation), UC or any number of things that are potentially fatal. 

Extreme pain without being exposed to gluten isn't normal for celiac disease. 

[casuallythere]

All of you, thank you very much for this information thus far. However, I did learn something today. I did not know this but this person was only 99.99% Gluten Free. He/She occasionally in rare circumstances would allow themselves to eat for example soy sauce from a restaurant that contained wheat. This is bizarre to me because I thought we had this conversation many times that he/she was 100% Gluten Free. Especially since they have experienced Level (100) Pain before.

Can this actually happen? I mean if you eat just a tiny (Fraction!) bit of Gluten you can experience such pain?

I mean this person watches their diet like a hawk. Soup, vegetables, cooking from their home because he/she works from home. I mean their environment is essentially the perfect survival environment for this condition. Hand crafted by he/she perfectly.

Please Advise. Thank You.

[ravenwoodglass]

Yes this can happen. What you described is what I go through with even the tiniest amount of gluten. The only difference is I will bleed for a few hours afterwards now. Just this pain alone is enough to make me extremely cautious. It can be so bad that it feels like I am going to pass out. I make sure to bring a phone into the bathroom with me when it happens and have awful thoughts of being found days later dead sitting on the toilet with my head resting on the sink and my pets chewing on my ankles.

There is nothing you can do for your freind other than encouraging them that hard as it is he/she has to be more cautious. When you have celiac even a little can hurt and they are keeping the antibodies active. Those antibodies can attack any organ in the body including the brain. Do encourage them to come here and post with any questions or even just read. They are not alone in that many celiacs have a difficult time with their diagnosis and realizing that celiac isn't just a matter of changes in diet but also big changes in many aspects of their lives. Those changes can be dealt with and folks here can help.

[Ennis-TX]

2 hours ago, casuallythere said:

All of you, thank you very much for this information thus far. However, I did learn something today. I did not know this but this person was only 99.99% Gluten Free. He/She occasionally in rare circumstances would allow themselves to eat for example soy sauce from a restaurant that contained wheat. This is bizarre to me because I thought we had this conversation many times that he/she was 100% Gluten Free. Especially since they have experienced Level (100) Pain before.

Can this actually happen? I mean if you eat just a tiny (Fraction!) bit of Gluten you can experience such pain?

I mean this person watches their diet like a hawk. Soup, vegetables, cooking from their home because he/she works from home. I mean their environment is essentially the perfect survival environment for this condition. Hand crafted by he/she perfectly.

Please Advise. Thank You.

Residue from a glass used by a gluten eater, flour dust on veggies, a tiny bit of residue in a scratch on a pan....these can make is deathly ill. Everyone is different on how severe the body reacts, and sometimes it can be worse than others.  Fact is with celiac your body treats gluten like a foreign invader or a germ...but goes a bit ape sh1t and tosses the whole house (body) trying to kill it. Often the intestines get the brunt of it, for me, it will also attack my nervous system and brain. Others it can go to the skin via DH, I have heard of it causing kidney failure in one person. There is a high risk of collateral damage and secondary conditions with each exposure, this needs to be considered. I ended up with allergies to corn and whey after some exposures. Several other foods make me sick now also, and I have issues digesting most meals. I developed Ulcerative colitis and had to give up all carbs, sugars, fruit or risk detention, pooping blood, and spiking glucose. We have had others end up various intolerances IE Nightshades (potatoes, tomatoes, peppers), garlic, onions, soy, peanuts etc. Not saying it will happen but your friend needs to learn to play it 100% safe or risk ending up on a more restricted diet, brain damage, organ failure, or other Autoimmune conditions. 

Soy sauce is no excuse, they make gluten free stuff, and EVEN soy, and gluten-free sauces like Coconut Secret Aminos, Teriyaki Sauces. 

[Fenrir]

Even a small amount can cause severe pain. I have been gluten-free for 5 years, I react to gluten a lot more harsh now than I did before. I do on a rare occasion get glutened and it’s horrible, I will be in bed for a couple of days with pain and nausea and have reflux for a month.

Also keep in mind that it takes up to 3 hrs for food to get into your small intestine where it causes the problem. So if you eat something with gluten at noon, it might be three before you react. Some people make the mistake of eating questionable things and when they don’t get sick immediately they figure it’s OK to eat it.

Bottom line is if you are diagnosed celiac no amount of gluten is healthy for you.

[ravenwoodglass]

7 hours ago, Fenrir said:

 

Also keep in mind that it takes up to 3 hrs for food to get into your small intestine where it causes the problem. So if you eat something with gluten at noon, it might be three before you react. Some people make the mistake of eating questionable things and when they don’t get sick immediately they figure it’s OK to eat it.

 

Celiac is an autoimmune disease the reaction and symptoms are caused by the antibodies flaring. Because of this for some the time frame from exposure to symptoms can vary. Some get hit with obvious symptoms right away but for some the timing might be longer. In my case that gut wrenching pain and the D show up 3 days later. I do have neuro symptoms that show up within hours that let me know I am in for a rough week or two. Joint and muscle pain hit after the D. The difference in time between symptoms and injestion can be so varied from person to person that keeping a food diary for what we ate and drank and where, along with when we have symptoms, can be helpful in figuring out what our own pattern is. That can be quite helpful in letting us know what we need to avoid and even if we might have other intolerances.

[Fenrir]

Sure it can take longer but generally you don't know right away with Celiac disease.

It's 3 hrs only the clock for me. If I get glutened i’ll get nauseous right around 3 hrs later then probably throw up. 

[ravenwoodglass]

5 minutes ago, Fenrir said:

Sure it can take longer but generally you don't know right away with Celiac disease.

It's 3 hrs only the clock for me. If I get glutened i’ll get nauseous right around 3 hrs later then probably throw up. 

Just curious, how long do you have symptoms after you get glutened? I'm asking because I wonder if your bodies quick reaction and causing you to vomit might lessen the length of time you have symptoms?  I have never thought to make myself throw up when the first symptoms show up. I wonder if it might make the night I have three days later easier. I would try anything as those nights, even though few and far between, are scarey as heck. I know it wouldn't entirely stop the reaction but lessening the severity would be nice.

[Fenrir]

I generally still feel pretty sick afterward. I get bad crapping and reflux plus headaches. It can take a few days for all of the nausea to go away and I will have reflux for a month sometimes.

I do think throwing up on purpose would help much and not advisable.

[ravenwoodglass]

34 minutes ago, Fenrir said:

I generally still feel pretty sick afterward. I get bad crapping and reflux plus headaches. It can take a few days for all of the nausea to go away and I will have reflux for a month sometimes.

I do think throwing up on purpose would help much and not advisable.

I think you are undoubtably right. Thanks for replying.

[cyclinglady]

@Fenrir—nice to hear from you again!  

 

[notme]

your friend should definitely see a doctor.  period.  that amount of pain = he/she needs to rule out things that others have suggested.  diverticulosis <sp) is the 'diverts' that exist and will get seeds and stuff stuck in the holes then get infected.  my brother has this and the doctor gives antibiotics (which wrecks his gut flora)- less, though, since he was diagnosed with celiac and adheres strictly to gluten-free diet.  so, they should check that, as well...

funny thing - i had been having the exact thing happening every now and again.  the last time my husband was home and he rushed me to the e.r. (i was crying bc pain was so bad.  i don't cry.  he knows this.)  they did bloodwork and a c.t. scan - everything ok.  sent me home with a pocket full of scripts and i followed up with my g.i. doc.  he said either i got glutened OR i had an intestinal spasm.  made sense to me - i was nauseas and puking, nothing could move, i couldn't even keep water down!)  one of those magical drugs (i don't take the others he gave me - don't need 'em) was called dicyclomine - it's an anti-spasmodic.  at the first sign of it, i try to drink a ton of water and sometimes i can get it to move along.  but, i have the dicyclomine that i will take and it works like a charm, just makes me really sleepy and my day will be spent close to the bed and bath (not beyond <haha see what i did there

ask your friend if, after these episodes, their stool looks bright yellow (like you could see it from outer space) bc my g.i. doc told me that your body will try to make soft stool to try to move things past the spasm. 

definitely they should go to the doc to rule out other potential separate problems, but this is something i really never heard of and it helps not to panic when i know what to do about it.  i hope they get some relief.  you are a good friend.  everybody forgets but i'll quote dr. fasano: "your digestive system is a VITAL ORGAN."  and if ya had a heart attack, ya wouldn't put off prioritizing the problem.  it's the same with your guts.  you need them!!  every.  day.

good luck

[frieze]

On 3/13/2019 at 7:30 PM, notme! said:

your friend should definitely see a doctor.  period.  that amount of pain = he/she needs to rule out things that others have suggested.  diverticulosis <sp) is the 'diverts' that exist and will get seeds and stuff stuck in the holes then get infected.  my brother has this and the doctor gives antibiotics (which wrecks his gut flora)- less, though, since he was diagnosed with celiac and adheres strictly to gluten-free diet.  so, they should check that, as well...

funny thing - i had been having the exact thing happening every now and again.  the last time my husband was home and he rushed me to the e.r. (i was crying bc pain was so bad.  i don't cry.  he knows this.)  they did bloodwork and a c.t. scan - everything ok.  sent me home with a pocket full of scripts and i followed up with my g.i. doc.  he said either i got glutened OR i had an intestinal spasm.  made sense to me - i was nauseas and puking, nothing could move, i couldn't even keep water down!)  one of those magical drugs (i don't take the others he gave me - don't need 'em) was called dicyclomine - it's an anti-spasmodic.  at the first sign of it, i try to drink a ton of water and sometimes i can get it to move along.  but, i have the dicyclomine that i will take and it works like a charm, just makes me really sleepy and my day will be spent close to the bed and bath (not beyond <haha see what i did there

ask your friend if, after these episodes, their stool looks bright yellow (like you could see it from outer space) bc my g.i. doc told me that your body will try to make soft stool to try to move things past the spasm. 

definitely they should go to the doc to rule out other potential separate problems, but this is something i really never heard of and it helps not to panic when i know what to do about it.  i hope they get some relief.  you are a good friend.  everybody forgets but i'll quote dr. fasano: "your digestive system is a VITAL ORGAN."  and if ya had a heart attack, ya wouldn't put off prioritizing the problem.  it's the same with your guts.  you need them!!  every.  day.

good luck

perhaps spasm of sphincter of Oddi?  check out lavender oil and peppermint oil.

[casuallythere]

Hello Everyone,

Thank you for all of the invaluable information. It has helped my friend tremendously.

I have another question.

Their condition has constituted a living arrangement unlike one that I am used too and I am wondering if this is normal or not. He/She works at home and does not travel. If he/she rarely does travel it is an insane and obscure way. They bring absolutely everything, basically bringing their house with them. Not to mention having a toilet in the vehicle, a small one that fits into a van.

This person recently told me that their life is pretty much over, and they are just surviving. He/She has good copping mechanisms and wants to live; but barely it seems. They went to a Doctor and was subscribed some anxiety medication but he/she does not want to take it because of the fear of the side effects. Also they were instructed to go see a psychologist but the psychologists are backed up for months and months because it seems like everyone has problems in this world. So they are not going.

My main question is... Is there person living normally giving the circumstances or should they be trying harder to live with their condition? I mean it even seems like some of you have more difficult situations than this person. Do you hide in your house or do you go outside? I do not mean to be rude however, I am just trying to get realistic answers because this person pretty much stays at home 24/7 except to go to the grocery store or run small errands.

He/She does exercise pretty religiously with some home gym equipment.

Please let me know what you think.

Thank you.

[Ennis-TX]

32 minutes ago, casuallythere said:

Hello Everyone,

Thank you for all of the invaluable information. It has helped my friend tremendously.

I have another question.

Their condition has constituted a living arrangement unlike one that I am used too and I am wondering if this is normal or not. He/She works at home and does not travel. If he/she rarely does travel it is an insane and obscure way. They bring absolutely everything, basically bringing their house with them. Not to mention having a toilet in the vehicle, a small one that fits into a van.

This person recently told me that their life is pretty much over, and they are just surviving. He/She has good copping mechanisms and wants to live; but barely it seems. They went to a Doctor and was subscribed some anxiety medication but he/she does not want to take it because of the fear of the side effects. Also they were instructed to go see a psychologist but the psychologists are backed up for months and months because it seems like everyone has problems in this world. So they are not going.

My main question is... Is there person living normally giving the circumstances or should they be trying harder to live with their condition? I mean it even seems like some of you have more difficult situations than this person. Do you hide in your house or do you go outside? I do not mean to be rude however, I am just trying to get realistic answers because this person pretty much stays at home 24/7 except to go to the grocery store or run small errands.

He/She does exercise pretty religiously with some home gym equipment.

Please let me know what you think.

Thank you.

................umm do I know you? LOL sounds like me, I hardly leave my house but to run errands, sell at markets, etc, and work out all the time. The toilet thing is something I have been dreaming of. HECK, I keep looking at a small camper so I can leave the house longer then 2-4 hours without worry of my intestines ruining the day. I dream of getting a food truck to work in WITH a bathroom so I can cook in my safe kitchen, and not worry about my UC or Celiac saying frack you go to the bathroom. (I might go once a day or 8 bouts of diarrhea)
I also would opt for a bed in case I get exposed to something and need to lie down as does happen, but I have corn and whey allergies that cause this.

I do not leave the house without days worth of meds, and a spare meal. If I travel for longer then a day I load up 1 bag of meds, 1 bag of cooking equipment, 1 for clothes, and load a 4cu/ft fridge full of food.

I have been traumatized to a PTSD level with gluten poisoning, allergic reactions, random bowel movements, not have meds and getting stuck places. It does make you a tad paranoid and you build your life around it.

[cyclinglady]

I think adults can live their life anyway they choose.  It sounds like this friend has been getting some medical care.  Unless you are are a very close friend, you should back off.  You could be arrested for stalking or harassment.  

I could be wrong, but this seems so strange.  We are here to give advice about living the gluten free lifestyle.  We can not offer advice about lifestyle choices or mental illness that is hearsay.  

Your friend is welcome to join celiac.com.  

[notme]

i use xanax for my anxiety - i can not and do not take the dosage on the bottle - i would be asleep all the time lolz - i just break off a little piece at a time, just to calm the jumpy guts.  there is a very real connection between your gut and your brain.  as for the isolation issue:  until you are somewhere away from your comfort zone and have a 'bathroom emergency' do not judge this person.  it's taken me literally years to be ok with going places, eating outside my house, being gone all day, eating and not immediately heading home.  baby steps was an understatement!  i am very proud to say we went:  shopping, to a home construction convention, and out to eat all on the same day last weekend.  a few years ago, i would have shopped on one day, went to convention on another, and to a restaurant on still another day.  if this person wants to take their time with dealing with their issues, you need to let them and be a good supportive friend

honestly, i didn't realize how 'safe' i had made my life until the first time i was floating in our river and i accidently floated into the channel, lolz FAR AWAY from the bathroom on the shore.  i realized i had NEVER floated out that far until that day!  after that, i deliberately tried to move out of my safe zone and try to be more 'normal'...  it's been slow going but i'm making really good progress.   i hope your friend does, too.  it does take time!  good luck and if they need some gluten-free support, send them to us.  they can also read the pinned post in the coping section of the forum, the newbie 101 thread.