we had friends in and I was so hungry. bad mistake. I ate a large piece of pappa johns pepperoni. at 1230 last night I started getting sick. sev e re nausea and chills. I mean shaking I was so cold. the diarrhea started at 230 and I was up until 4. up and down, up and down.
today has been stomach pain and passing orange and yellow oil. foamy bubbling crisco. greasy looking.
very sick to my stomach. low blood pressure and heart rate.
I will never ever touch pizza again. friends or not...
Posted by Keebler (Member # 12673) on :
- Had they been real friends they would have made a very distinct effort to procure a healthful meal (that is not poison to you) yet also delicious enough to be worthy of a gathering of friends. -
Posted by Lymetoo (Member # 743) on :
I can't eat it either. I sure hope you feel better soon. You really need to look into the mast cell problem and/or possible histamine intolerance.
It involves your exact symptoms, low BP included.
Posted by randibear (Member # 11290) on :
yeah well you know we all have friends who believe the old "well if you're not in a cast or hospital you ain't sick".
I get so tired of explaining lyme and now saying "look I only have half a colon. gimme a break for gosh sake."
jus down over this. ugh...I'm sick...
Posted by randibear (Member # 11290) on :
will do. never heard of mast cells.
Posted by Keebler (Member # 12673) on :
- I had that very same reaction - all you describe - just from gluten. Several times over the years. It took me so long to connect the dots, though. Even after I suspected gluten, there was one last time where I though I could let my guard down.
I thought I would die from the colon spasms, etc. Actually, looking back, probably had several of those very long nights where I thought I would die in the toilet. Since going gluten free, though, zero events like that. So glad.
You may also see a huge relief to say goodbye to gluten but it can take some time.
As for friends, they did sort of follow my lead, though. At first, when I would bounce in and out, I just was never as clear as I should have been with them. The celiac genetic test helped so much there -- very clear - to stay clear of it.
you might consider a genetic test for celiac so that you have a clearer picture.
there are several good articles with a Google search for:
"Gluten Recovery"
Slippery Elm in one of the articles - is one that tops the list as when made into a bit of a gruel, it nicely coats the GI tract lining. -
[ 02-27-2015, 06:48 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Enteric coated peppermint pills can really help calm down the colon spasms. Peppermint tea can help some but the pills are so much more effective as it prevents the peppermint oil from letting go to high up in the GI tract where it can be tender.
I think the peppermint also helps counteract some of the sausage & cheese oil reactions in the gut, too. -
Posted by Lymetoo (Member # 743) on :
I forgot about gluten ... not good at all. I can't even get away with gluten free pizza.
Posted by momintexas (Member # 23391) on :
Do you have your gallbladder?
Posted by randibear (Member # 11290) on :
no out in 07.
Posted by LisaK (Member # 41384) on :
are you sure it wasnt' that stomach virus going around????
I get sick every time I eat the combo of grains and cheese.
so pizza alwyas makes me sick- even gluten free like lymetoo said.
but I have had a virus that gave me same sx you wrote.
If I am ever desperate for food like that I pick the cheese off and only eat the cheese. that is the lesser of the two evils for me.
Posted by randibear (Member # 11290) on :
well I made a call to a specialist and he wants to see me today. wahooo..also his office is right next door to baylor hospital.
gosh i'm scared he's going to admit me. as soon as I started telling him my symptoms he said come at noon.
so we'll see. i've been up all night.
gosh I hope it's not the pancreas. please pray for me. I'm absolutely terrified
Posted by LisaK (Member # 41384) on :
praying for you!
__
Posted by momindeep (Member # 7618) on :
How are you Randi?
Posted by Lymetoo (Member # 743) on :
Keep us posted, randi.
Posted by Lymetoo (Member # 743) on :
Where's randi?
Posted by randibear (Member # 11290) on :
I got to see a pa. wanted to see my gastro but they said absolutely no way until the end of april. so I took the noon appt.
she took all my symptoms and said didn't sound like pancreatitis to her. I asked about passing orange mucous with bubbles in diahrrea but she said oh that could be ibs.
sudden change in bp down to 100 over 68. she wasn't concerned about that either.
back and shoulder blade pain, stomach pain...etc no comment.
they did take bunches of blood and said they would do a cat scan. she gave me 40 mg of nexium and bentyl before every meal.
said she doesn't think it's liver spleen or pancreas but ibs and having part of the colon removed
anyway I got home about 3. couldn't believe my scripts would not be ready until 8 at night.he said he would go get them. thank heavens.
overall I'm disappointed. she said norco or vicodin for pain but if it gets truly bad go to er.
pat on head...lol...and come back in a month. I asked about an upper scope but she said it would dependon ct scans. "no use in doing unnecessary testing." duh..
when I had bcbs and tricare for life I never had a problem getting tests. now I have to beg for even a blood test
so right now i'm waiting for them to call for the cat scan.
all in all...disappointing...
Posted by Keebler (Member # 12673) on :
- Sorry the care is so disappointing. They'd rather push pain pills than figure out the cause, it sounds like. And to say "oh, it could be IBS" and just drop that is just very bad medicine. IBS is a set of symptoms, not a cause.
CELIAC TEST, celiac test, where for art thou?
So, it seems no one even mentioned gluten as a very likely culprit? Not one word about a genetic celiac test? If that is the case, they are not at all doing their jobs.
Were you able to ask them about it?
Celiac really needs to be figured into the possibilities. But you don't have to ride along with their ineptitude on this. You could explore the best genetic celiac tests and make sure that is done as soon as possible.
It just seems ridiculous that not one doctor / PA has brought this up. Beyond ridiculous, actually. It's negligent. It may not be but it really needs to be determined one way or the other - even if there are other factors.
If they aren't going to do this, you can take the reins on this matter. Please. I just can't emphasis how very important this one question about CELIAC ? is to the symptoms you've been having with food for a long time.
And not just around food. If celiac is on the scene, every function / process / organ of the body can be affected.
Another matter: being without a gallbladder can still set you up to have some very bad reactions to certain kinds of fats / oils or the way they are prepared. It also seems they are overlooking telling you what can be done to help with digestion of such.
Also consider that some pizza places may not use "real" cheese at all. -
Posted by Tincup (Member # 5829) on :
Shame on ME!!!
I saw the title to your post and thought to myself- I can make it through all these TBD's and meds and such, but if I couldn't eat pizza it would be time to end it all. And I laughed.
SHAME SHAME on Tincup!! Bad bad!!!
I had no clue this delightful food, its like heaven to me, could really make someone so ill. I can't say why, but if I am feeling poorly and nothing else is working I eat pizza and for some reason I feel much better. ????
Of course it MUST be Pizza Hut pizza and ONLY Pizza Hut pizza. I won't even think of eating a different kind. I treat myself to one every three months and LOVE it!
You all have taught me something today, for sure. I am so sorry you all suffer with this situation. I will be much more understanding of it from now on.
Many wishes you can get feeling better soon Randibear.
PARASITES could also be connected. Parasites do travel with lyme and more and more LLMDs are finging that lyme treatment can be more successful if parasites are first addressed.
GMO foods that destroy the GI Tract; Gluten; Dairy. Detail on all this.
The GMO documentary here shows with a camera inside the gut, what GMO foods can do. It's amazing.
Also see the video on what happens with Ramen noodles. This information can be life-saving. But no doctor is going to take your hand and skip with you to a viewing room. We have to learn for ourselves, and look beyond their limited scope (in a couple different meaning of that word).
Now, it could be all of these things: gluten; Sherr's article, parasites and even food additives, GMO foods. It really could be any or all. But it is up to us to start sorting out some of the variables - your typical doctor is just not educated in any of this, usually. -
Posted by Keebler (Member # 12673) on :
- To help relieve pain / gut spasms: Enteric coated peppermint capsules / tablets can be fabulous. Really. -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Keebler:
CELIAC TEST, celiac test, where for art thou?
So, it seems no one even mentioned gluten as a very likely culprit? Not one word about a genetic celiac test? If that is the case, they are not at all doing their jobs.
Were you able to ask them about it?
Celiac really needs to be figured into the possibilities. But you don't have to ride along with their ineptitude on this. You could explore the best genetic celiac tests and make sure that is done as soon as possible.
It just seems ridiculous that not one doctor / PA has brought this up. Beyond ridiculous, actually. It's negligent.
- That's how today's GI doctors operate, Keebler. They NEVER mention diet, gluten, dairy .. nothing. They act as though what we eat has no affect on our gut.
Even if they got brave and tested for celiac, I doubt they would find it. They don't even do the testing right.
So .. it is up to US to figure it out. That's how I operate anyway!
Posted by Keebler (Member # 12673) on :
- Randibear,
you can "go" gluten-free right now. It's a good bet that you'd see some relief soon (although it could take a few months to see the full benefit).
Just ordering food that seems gluten free is not enough though, so be sure to refer back up to the "excitotoxin" thread for the gluten / celiac links that detail what being gluten-free really entails.
You don't need a test before dropping gluten. And, as TuTu says, most doctors do the tests wrong.
That's why I stress a genetic test. And your being gluten free for a while prior will not make a difference in accuracy for a genetic test. But it would for an upper GI scope - but it's often not a reliable test, anyway.
I'm not the only one to have had an upper GI scope done with the sheer purpose of celiac diagnosis that was done wrong in various ways. It was "negative" but wrong.
Other tests were "negative" too . . . but after more suffering a wise doctor finally suggested a genetic test. It could not have been more clear: celiac was definite. Finally, it all made so much sense.
And, being gluten free does not mean giving up flavor or delicious foods. Not at all. There are ways to get the real flavor from real foods without the gluten and without any additives, too. -
Posted by randibear (Member # 11290) on :
I've had celiac, chrons, you name it, all tests. negative.
oh and to top it off I'm passing red diarrhea and . the water is pink... the pain has moved to lower left...the area where I had the colon surgery.
my gosh what else can go wrong???
I hate to say this but sometimes I want to go to sleep and not wake up. oh I'd never do anything but I get so tired of all this.
Posted by Keebler (Member # 12673) on :
- So sorry to hear this. You likely won't read this until you return from the E.R. - or maybe even tomorrow after getting some rest.
The E.R. is where I assume you will go. I do hope you are treated there correctly. "passing red diarrhea" with pain at just a few months-old surgical site certainly is more than a red flag for anyone.
Good luck. Take care. -
Posted by Keebler (Member # 12673) on :
. . . There are 79 conditions associated with bleeding, diarrhea and pain or discomfort . . .
See list, with a link for each consideration. -
Posted by LisaK (Member # 41384) on :
In my extensive record of dr visits I must say (sorry!) that it never ends well when I see a PA. never ever ever.
they act like they know what drs know, but they do not. it's like going to a barber to get a high fashion haircut. it just doesn't end well 99.9% of the time.
sorry you are going through this Randi.
I really feel for you. gi issues are not fun at all.
I am hoping you find relief asap.
Posted by momindeep (Member # 7618) on :
Randi...I will be seriously praying for you...what would we do without you?...we love you here.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Keebler:
You don't need a test before dropping gluten. And, as TuTu says, most doctors do the tests wrong.
That's why I stress a genetic test. And your being gluten free for a while prior will not make a difference in accuracy for a genetic test. But it would for an upper GI scope - but it's often not a reliable test, anyway.
- But you can show NO problem with DNA and STILL not be able to tolerate gluten.
Randi.. I do hope you will go to the ER if this does not let up SOON.
Posted by randibear (Member # 11290) on :
passing blood today too.
Posted by Keebler (Member # 12673) on :
- Good point that TuTu posts. I was lucky in that after many different failed gluten tests (and false assurances by ignorant doctors), a wise doctor lead me to the genetic test that was very definite.
It may be for you, too and it would be important to do that. Still, as TuTu points out even a genetic / DNA celiac test can fail to be detect celiac.
Celiac is high on the list for cause of bloody diarrhea, and it can cause so many serious issues, even death. Even if not celiac, or if it's is in your DNA but not able to be detected by the less than perfect testing, there can still be serious reactions to gluten.
I just wish I had known this so many years before I just happened upon someone who knew not to rely on the previous series of tests that were so very wrong.
Really, our bodies provide so many clues that some lab tests just can't always. Dairy also should be considered. Everything that was in that pizza should be considered, actually.
But gluten and dairy are the most logical places to begin as this has been a pattern for you for years, these food related symptoms.
Becoming gluten-free could be life saving for you. Even a trace (yes, a trace . . . I know . . . but still, life matters more than care in food selection).
While there are still certainly health matters on my plate, I can tell you that becoming gluten free did save my life. I had so many experiences very similar to what you describe over time - and all the misdiagnoses (IBS, etc.) from damage that gluten had caused.
Going gluten-free gave me back my entire GI tract, helped reduce body pain and helped my brain & mood to a substantial degree. Had I not gone gluten-free, I know I would have ended my own life as it was just too horrible of an existence to continue.
And I'm not alone with such good outcomes from becoming gluten-free. Even for those without celiac, there are some who have improved in really cool ways. -
Posted by Keebler (Member # 12673) on :
- randibear,
we must have been writing at the same time. Sorry to see that you posted: "passing blood today" -
Please keep us in the loop after you get a doctor's consult on this. I sure hope they can settle this down for you.
Take care.
[ 03-05-2015, 02:40 PM: Message edited by: Keebler ]
Posted by lpkayak (Member # 5230) on :
I hope shes at er...this is scarey
Posted by LisaK (Member # 41384) on :
__
What about possible Krohn's disease?
__
Posted by Lymetoo (Member # 743) on :
Does sound like Crohn's .. and many with Crohn's have gluten intolerance.
Posted by randibear (Member # 11290) on :
I called the drs office. they said it was just irritation from the laxative. I told them it was bright red bloody clumps that were so big they stayed at the bottom of the toliet. left abdomin is extremely sore. if I keep on bleeding, heck with em I'm going to er.
I'm beginning to hate doctors.
the ct scan office never called so I called them. never heard of me and said no order received. called dr back and they swear it was sent on tuesday. they are going to resend it so next week I should get scan. also blood work not in yet.
could be weather. I've had no mail for three days. hope it will run today.
you know if I'd done this I would have been fired.
[ 03-06-2015, 01:52 PM: Message edited by: randibear ]
Posted by coffee71 (Member # 17467) on :
I was experiencing same symptoms as yours.
I stopped eating bread and pizza several years ago after one crazy incident with bagel.
One late afternoon I eat a bagel and next day I woke up swollen, joint pain, barely moving. I thought it was some reaction on medication but my LLMD was certain this was "bagel" reaction.
I had same episodes before this one but was never able to connect them with eating bread.
All my test for gluten sensitivity, crohn's disease, mastcell disorder came back negative.
I am currently going trough similar frustration because I am constantly thirsty, drinking a lot of water, have seen few doctors but all tests are coming back negative. Hormones and kidneys are fine, just feels like never ending cycle.
I hope you get mail soon. Hugs.
Posted by Keebler (Member # 12673) on :
- randibear,
It is rather astounding that passing clumps of blood clots is not taken more seriously.
Certainly hope this settles down over the weekend. Seems it's sort of just up to you now to patch the leak, so to speak.
Slippery Elm bark powder, made into a gruel can be very soothing the entire GI tract. Your closest natural foods store will carry that and their wellness person can tell you how to mix it.
It's saved my bacon a few times with serious colon issues.
Any market that carries SLIPPERY ELM POWDER would also have some good SALVES such as from HERB PHARM with goldenseal and other herbs, natural oils to help soothe the outer tissue.
Avoiding gluten & dairy may be of some help, too. As if either are even partly involved, damage will keep happening to the intestine lining until exposure is avoided.
You've likely looked over all the Rx you take in case any can cause this.
Aspirin, I assume is not on your list since you've had gut issues for a long time -- as it could cause this kind of internal bleeding, too. If you are taking anything else with aspirin IN it, that, too, could be the main cause. -
Posted by randibear (Member # 11290) on :
they prescribed bentyl, miralax, and nexium.
the bleeding has eased a bit but I'm awfully sore.
dang ct scan office has not called me back.
Posted by Lymetoo (Member # 743) on :
Bentyl can be constipating.. so they give one drug to counteract another. Doctors are so clueless.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by coffee71: [QB] I was experiencing same symptoms as yours.
I stopped eating bread and pizza several years ago after one crazy incident with bagel.
- So how are you feeling now, coffee?
Posted by Keebler (Member # 12673) on :
- coffee,
I deleted earlier response to you.
Glad that TuTu posted that excerpt from your post as I had misread it, thinking you went back to gluten because of negative tests. Seems you knew that those tests can miss it.
So glad to see [sounds like] you are staying gluten-free after that bagel was the wake up call several years ago.
You say that you were "never able to connect them with eating bread" that could be because gluten is hidden in so many things, even many lip balms, lipsticks (and anything that goes on our lips is food, really, as it gets into our system).
Gluten is not just in wheat but also in barley, kamut, spelt and rye.
Hope your gut is better for the change. -
Posted by LisaK (Member # 41384) on :
I thought rye had no gluten????
The last time I ate a whole piece of pizza I ended up in ER the next day.
not something I want to relive, but I can eat spelt with no problem.
but, when I eat any grain along with cheese, that is a stomach killer for me!
and cheese on it's own doesn't do much to me.
chemistry I guess.
I hope you find answers soon Randi!!!!!!!
Posted by Keebler (Member # 12673) on :
- Yes, Lisa . . . important to know that Rye has gluten. Sorry. And spelt. A gluten free diet is about much more than avoiding wheat. That was a huge wake-up call but it does get better after learning the basics.
And spelt may seem to cause you no apparent issues but unless you can work a full load, exercise, go out now and then and have a full life relatively pain free and full of basic enery, it's really hard to say it's causing no problem.
Even if it appears to not affect your gut (but I thought you have posted of gut issues) . . . the gluten in spelt can also be ever as much destructive in quiet ways - to the brain & nerves, mood, pain, etc.
You've posted of tinnitus. Gluten in those who can't "do" can amplify tinnitus, too, due to the nerve damage it can cause anywhere in the body.
Before I had the genetic celiac testing I knew wheat caused me trouble and I though I could "do" spelt because it did not have me double over in pain from my belly.
But, after while, there was a direct correlation to seizures for me. Good thing I learned to avoid all gluten, not just wheat. And so glad to have this information. My life is a far better quality minus the gluten destruction from so many angles.
Most common names for gluten containing grains: Wheat, kamut, farro, emmer, spelt, barley & rye.
Hence, anything with even a trace of barley malt or barley anything (in so many packaged products).
"Natural Flavors" can sometimes be hidden gluten (and is also often hidden MSG]
Google "HIDDEN SOURCES OF GLUTEN" for other major eye openers. And be sure to look at all the main search returns for some lists have a couple items the others do not.
Lip balm was a surprise to me but it makes so much sense to be sure lip balm / lipstick is also certified gluten free.
Some Vitamin E can be, too, some say - if it's pressed from wheat germ. The celiac and gluten education sites can offer more insight. -
Posted by Lymetoo (Member # 743) on :
Don't forget OATS!!! Oats contain gluten.
SOME oats are gluten free, but many with gluten intolerance will still react to them.
Keebler, it is a great idea to do genetic testing, I have started that process but with many other symptoms and tests I just put that issue on back burner.
I did some reading on gluten free diets but at that time going into details and with my lyme brain it was so overwhelming.
Farro- I just recall I still have a bag of farro which I opened few years ago and used only once. That one meal of farro caused same symptoms.
Oats- same problem. I replaced oats with buckwheat delicious
Posted by coffee71 (Member # 17467) on :
Lymetoo,
Since I gave up bread, pizza, pasta, oats I did not have episodes of stomach cramps, pain and diarrhea.
But few months ago I made a huge mistake by eating a peace of delicious cake that my co-worker made. Within 45 minutes I bent in half with horrid stomach pain, and next 3 hours were pure hell-going to toilet every 10 minutes.
Milk- can not tolerate, but plain yogurt and kefir do not give me any problems.
Dark chocolate- sadly it looks like I started developing reactions on it.
I noticed that my fibromyalgia and joint pain flare ups usually start with stomach pain.
For past two months I have been taking Cromolyn sodium - oral solution, comes in ampules which I dissolve in a glass of water and drink 30 min before meal. This medication works as anti-inflammatory and it was prescribed by cardiologist who treat my POTS.
It feels like it is helping, but the problem is to time it before the meal, so I am not 100% compliant with the therapy.
Knowing what food affects my symptoms and maintaining a proper diet is a must but there is always that ugly background of Lyme&Co.
I was tested positive AGAIN for Mycoplasam and restarted therapy for it, so it is very hard to judge what came first-symptoms flare up by food or bugs.
Randi, I hope you feel better.
Posted by lpkayak (Member # 5230) on :
Randi hasnt checked in in a few days...anyone in touch with her?
Posted by LisaK (Member # 41384) on :
keebler, I get what you are saying. I didnt' know rye had gluten. I am reading it- it says rye has a little bit and that it is not like the high pwered gluten that wheat has.
I only eat rye like 2x per year, so I am not worried about it.
there is just about nothing I am not allergic to or intollerant to, so I do what I can.
and btw, I was tested and neg. for celiac.
Posted by surprise (Member # 34987) on :
My take: if you tend to run on the constipation side, are already tipped there and then add
a wad of dough gluten with cheese, forget about it. You went too far. The passing blood is probably hemorrhoid or a fissure.
Furthermore no gallbladder, massive intake of cheese (fat) will do you in too, perhaps, if you've already been eating fats.
Liquid diet for a day or 2 to clear out, drink lots of water, broth. It bites, I know.
I had my GB out, maintained GF/CF, but on Christmas decided to wolf down Brie (hot gooey cheese) and boom! down went Fraiser (me)
Sealed it for me on the no cheese, ever.
Hope you feel better soon.
Posted by Keebler (Member # 12673) on :
- Lisa,
It's important to know that the amount of gluten is not necessary the issue with gluten, even a trace can do damage.
The tests can be inconclusive. And, I hear that you say you don't need to be gluten-free.
Still, for others then it's just important to know for those who do want / need to be gluten-free:
Rye, even twice a year can be a huge problem for someone with celiac, actually - and maybe for others, too. The brain can endure damage / changes for up to six months after even one exposure to gluten, even a trace.
For some scope on that, go to PubMed and search: gluten, neurological
It does not matter if there is "less" even a trace matters significantly.
Now, if you are not celiac but gluten sensitive, it's still not something worth risking. Tests don't tell us all we need to know.
And if there is any kind of gut issue or neurological matter at all, it's best to be on the safe side.
CARROWAY SEEDS are a nice way to get a hint of rye, though, without the gluten. You can cook with them . . . and there is a wonderful gluten free cracker by Mary's Gone Crackers that is Carroway and very much resembles the taste of rye. -
Posted by randibear (Member # 11290) on :
unfortunately when you've got part of a colon missing and have diverticulosis. it's all compounded
Posted by Lymetoo (Member # 743) on :
All the more reason to eliminate gluten from your diet .. completely.
Posted by Lymetoo (Member # 743) on :
![[group hug]](graemlins/grouphug.gif)