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

Ugh Displaced Mind


Lister

Recommended Posts

lorka150 Collaborator

choose a fruit with a lower GI, as your body might be unable to digest high GI fruits right now.


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



Celiac.com Sponsor (A8-M):



  • Replies 411
  • Created
  • Last Reply
gfp Enthusiast
desided to switch the chips in my diet for something else, figured hmm grapes are good and good for you well i guess iwas wrong.. i cant eat grapes everytime i do my stomic goes into major pain

A lot of anything isn't usually good!

When I ws a kid I used to love fresh peas from the pods (well I still do) and my mom would buy a pound at market and an hour later my stomach would be ... well you get the picture !

Fruits are good but they also pass through you.... I was eating loads at one point in a not too disimilar situation to you and it took someone else to point out ... of course you have D and stuff.. anyone would eating that amount of fruit ....

Worrying about stuff is a surefire way to loose lots of weight and also give you D and stomach probs.

Celiac is a real problem because the symptoms are very similar to lots of serious stuff... before I was diagnosed I had lost an unhealthy amount of weight .(and I was starting off on the lower side of obese).. was convinced I had stomach cancer or something.... ... worry more, loose more weight, more pain....

Lister Rising Star

dx apointment in 1 hour, im neveris, i hope we get to the bottom of stuff, without to much bad news.. more scared then i am neveris really

see im wierd, i dont have d at all only had it for the first 2 weeks of getting sick, and that was because i had the flue also.. the only celiac signs i had was my huge huge stomic and then the damage they found from the upper gi they did. and i dont eat obsessive amounts of anything i try to keep it alternated so i wont get leaky gut. i havea food jurnal i will post entrys in a few days on my blog but im out of town after tonight for a camping trip

jerseyangel Proficient
dx apointment in 1 hour, im neveris, i hope we get to the bottom of stuff, without to much bad news.. more scared then i am neveris really

Hi Lister--

Don't be nervous--use your nervous energy to make a list of all your concerns--that way, you will remember to ask the doctor about all the things that have been bothering you.

Good luck with your appt--let us know how you did :)

penguin Community Regular
i have the prilosec, but im not taking it until i go to the doctor anyways, it says on the package dont take if you have unexplained weight loss, and thats the whole reason the dx wants a apointment with me on monday so i figure i should wait until he figures out the weight loss

as for breathing exerisis yes i know some but they hurt me to do, whenever i exhale deep it drives my stomic crazy

I'm sure your dr already answered this, but they put warnings like that on OTC meds so that so that people don't self-diagnose when they have something life threatening going on. Your dr. told you to take it, so you can disregard the bit about weight loss. Also, prilosec is used for gastritis as well as reflux and heartburn. The burning stomach you describe sounds a lot like gastritis, and it really does help.

Lister Rising Star

well im back

good news:

text book blood presure

my weight is perfect for my hieght but it will become a consern if i continue to loose 10 pounds a month

bad news:

im not celiac, im not gluten intolerant-

he says that he is almost positive i have a minor form of ulceritive colitis (yah maybe i will get colon cancer when im older just like the rest of my family :( )

he says that ulceritive colitis can be uproared by sertain foods and that wheat/milk seem to definatly be 2 of them and to still avoid them as i have been, but also other foods will upset it as well

i have to make a apointment with a gastrointolagist to get some form of scope done (not a colonoscopy its a smaller form were they dont go in as far) and they will take biopsis to see if i do have colitis or not, if i do then boom yay a diagnosis even though i would not be that happy with that one since it leads to colon cancer and that is one of my bigist fears.. he is putting me on predisone for 2 weeks anyone know if this is gluten-free before i start taking it. he wants to see if it helps and if it does then he will be basicaly positive its colitis anyways i gtg ready for a camping trip

queenofhearts Explorer

Sounds as though you're getting closer to getting some answers, Lister, that's wonderful! I can understand your worry about your family history, but I'll bet your relatives weren't as aware as you are of how to stay healthy. If you know what's going on & take care of yourself, you'll be in much better shape.

Leah


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
well im back

good news:

text book blood presure

my weight is perfect for my hieght but it will become a consern if i continue to loose 10 pounds a month

bad news:

im not celiac, im not gluten intolerant-

he says that he is almost positive i have a minor form of ulceritive colitis (yah maybe i will get colon cancer when im older just like the rest of my family :( )

he says that ulceritive colitis can be uproared by sertain foods and that wheat/milk seem to definatly be 2 of them and to still avoid them as i have been, but also other foods will upset it as well

i have to make a apointment with a gastrointolagist to get some form of scope done (not a colonoscopy its a smaller form were they dont go in as far) and they will take biopsis to see if i do have colitis or not, if i do then boom yay a diagnosis even though i would not be that happy with that one since it leads to colon cancer and that is one of my bigist fears.. he is putting me on predisone for 2 weeks anyone know if this is gluten-free before i start taking it. he wants to see if it helps and if it does then he will be basicaly positive its colitis anyways i gtg ready for a camping trip

So glad your getting closer to some answers. The prednisone should help a lot. The best way to check if it is gluten-free is to call the pharmacist and have them check. If the doctor gave you samples they will still check for you just give them the manufacturor off the label. I am glad to hear you are going to continue avoiding gluten. Hope you feel better soon.

Lister Rising Star

yeah its gluten-free i asked her yay. but im slightly confused the dx told me it was a 2 week pill course, but on the pill bottle it says its a 18 day course, also the dx put 36 pills on the form but thats not as many as its said is needed for 18 days, so if he wanted me to take it for 14 days why did he subscribe enough for 23 days? should i call him tomorrow or just follow the pill bottle

Lister Rising Star

wow the more i read about these pills, the less i want to take them, they can kill you if you quit them to fast wtf

gfp Enthusiast
wow the more i read about these pills, the less i want to take them, they can kill you if you quit them to fast wtf

So can water!

jerseyangel Proficient

Lister

Please relax, and take the prescription as directed. They will bring down the inflammation in your intestines and hopefully make you feel much better.

Years ago, before I (or any of my doctors, evidently) knew about Celiac, I took steroids--pills and injections--and they really did make me feel better.

Your face may get puffy/more round looking--don't panic! That will go away after you stop taking the drug.

Just take it as directed--taper off--and you'll be fine.

ravenwoodglass Mentor
wow the more i read about these pills, the less i want to take them, they can kill you if you quit them to fast wtf

Lister please take these without fear, they really will help. Take them exactly as prescribed, many times the dose is tapered starting out with more of the med at first. They will help with the inflammation and the side effects are only a problem with long term use, which is not what you are looking at. There are times when you see effects like a facial rounding as another poster pointed out but this would only be seen if you were taking them for an extended period of time. Predinose was a 'miracle' drug for me even before diagnosis with celiac and was for years the only drug that would halt my skin problems and even the 2 week course would give me relief for up to 3 months. They will help a lot and you need to jsut bite the bullet and start the course.

jerseyangel Proficient

I only put the reminder about the face rounding out there because it would happen to me even with a short course of the pills.

I know Lister gets worried about things easily, so I thought I'd let him know that this is nothing to be alarmed about. :)

Lister Rising Star

so i just got back from camping so now its time to start the meds, one consern i have about them though, is that it says it weakens your immune system.... ummm i really dont like the sound of these pills

Lister Rising Star

i really do not think i should take those meds.. they sound awful, and what if i dont even have anything they treat then that would be even worse for me then not taking them right? the pills scare me i dont wanna weaken my immunse system...

side note ( went camping at the most masquito infested place ever) withen the first 2 days everyone had over 8 bites besides me i made it out with not even one bite :) )

queenofhearts Explorer

Lister, right now your immune system is attacking you, so weakening it a little might be a GOOD thing... & if you are able to eat a healthy diet that will definitely make you less susceptible to illness. I'm a little meds-averse as you seem to be, but in this case, I think you stand to gain much more than you might lose. Please give them a try.

side note ( went camping at the most masquito infested place ever) withen the first 2 days everyone had over 8 bites besides me i made it out with not even one bite :) )

I've noticed too that I get far fewer bites since going gluten-free. I used to be a total mosquito magnet, now I'm just average or even less. I noticed this right away after going gluten-free-- never in my life had other people in a group been bitten before me until I changed my diet.

jerseyangel Proficient

Lister,

I can't believe you haven't started your meds yet!

A lot of us care about you on here--we wouldn't tell you that these are a good idea for you unless we really meant it.

I've personally taken those pills--they provide a lot of relief when taken exactly as directed. It's just one course--the serious conplications come into play over the long term--not the week or two that you are talking about.

Start them--you wanted your doctor's opinion, and this is what he told you to take--it's a reasonable thing. Just enough to calm your system a bit by taking down some of the inflammation.

ravenwoodglass Mentor

I second what Patti said big time. They are going to reduce the inflamtion in your system and will help you more than you could know. They are not a disease specific drug they help with many conditions where inflamation is present. If your doctor had prescribed these for a long term like 6 months or so there might be cause for concern but you were prescribed a short course. They will help you need to take these. Sorry if I seem to be nagging about this but it is only cause we care about you. PLEASE TAKE THE #*#* PILLS.

Lister Rising Star

alright i will start them tomorow..

i have one consern unrealted to the pills, i went to the bathroom today and again i had mucus " this is happening less often as it used to but still sometimes" now this mucus like substance that came with the normal stuff was floating at the top of the water and had obveiuse red blood in it, is this a worry? or nothing? it was small but i meen red makes me worry

queenofhearts Explorer
alright i will start them tomorow..

i have one consern unrealted to the pills, i went to the bathroom today and again i had mucus " this is happening less often as it used to but still sometimes" now this mucus like substance that came with the normal stuff was floating at the top of the water and had obveiuse red blood in it, is this a worry? or nothing? it was small but i meen red makes me worry

From what I understand, the red is actually less worrisome, usually the result of hemmorhoids or fissures rather than something deep in the colon. This is probably irritation near the surface.

I am so glad you are going to start your meds!

gfp Enthusiast
From what I understand, the red is actually less worrisome, usually the result of hemmorhoids or fissures rather than something deep in the colon. This is probably irritation near the surface.

I am so glad you are going to start your meds!

Red isn't bad.... if its red the haemoglobin is fresh... which means its pretty close to the exit sign...

If you have lots of D its not abnormal...

The mucous is undigested fat....you need to reduce that inflamation....

If a Dr. prescribed water it would have warings that exceeding the recommended dose could kill you.

Don't work yourself up over it.... check the fact sheet on ibuprofen or tylenol...its full of what might happen if you take them everyday in excess. its good to read them but take it with a grain of salt....

Haven't taken those myself but if the people who have told me then I'd take them not question...

And I'm someone who has refused all antibiotics for probably 10 yrs!!! (I honestly don't remember when its so long ago)

Lister Rising Star

i have c not d is the red still normal? its not alot of blood just blotchs in the snot stuff.. the only reason i did not start my meds yet is because i did not want to start them while camping and either a. have a bad reaction to the meds and 2. it says it makes you really hungry and thirsty and i had minimal food to pack for the trip, anyways i start them tomorrow, i hope they dont work though, because if they dont then it meens i dont have colitis

im really scared.. i almost do not want to know what is wrong i meen gah i wish there was something less seriuse i could look forward to maybe getting diagnosed with but so far the only posibiltys i see is

chrons, ulceritive colitis, cancer

..... none of those are good things in any way, i was reading about ulceritive colitis and how about 50% of people eventually have to have there colon removed and about 32% eventually get colon cancer.......... ahhhhhhhhh

well i had 2 stress free days but now im back into stress gear...... i wish my apointment was sooner i want answers and i want this all fixed before it gets worse or whatever ....... i want to cry, why is it taking so long to figure this all out its been like 5 months now so whatevr it is, is just getting worse (even though i will say my side is way way way way way less sensative then it was 5 months ago, originaly the doctor could barely push his hand on my side now he can pound on it before it starts to hurt me

ravenwoodglass Mentor
i have c not d is the red still normal? its not alot of blood just blotchs in the snot stuff.. the only reason i did not start my meds yet is because i did not want to start them while camping and either a. have a bad reaction to the meds and 2. it says it makes you really hungry and thirsty and i had minimal food to pack for the trip, anyways i start them tomorrow, i hope they dont work though, because if they dont then it meens i dont have colitis

im really scared.. i almost do not want to know what is wrong i meen gah i wish there was something less seriuse i could look forward to maybe getting diagnosed with but so far the only posibiltys i see is

chrons, ulceritive colitis, cancer

..... none of those are good things in any way, i was reading about ulceritive colitis and how about 50% of people eventually have to have there colon removed and about 32% eventually get colon cancer.......... ahhhhhhhhh

well i had 2 stress free days but now im back into stress gear...... i wish my apointment was sooner i want answers and i want this all fixed before it gets worse or whatever ....... i want to cry, why is it taking so long to figure this all out its been like 5 months now so whatevr it is, is just getting worse (even though i will say my side is way way way way way less sensative then it was 5 months ago, originaly the doctor could barely push his hand on my side now he can pound on it before it starts to hurt me

I am glad you are starting them tommorrow but would have felt better if you said today, why wait. If they work that does NOT mean you have colitis or chrons it just means you have inflamation that it helped to get rid of. They will also help to 'jump start' the healing process for your celiac. When I took them before I was diagnosed with celiac they helped even though I was getting up every day with D, having D at times throughout the day and being woken up every night by more cramps and D (That was my life for at least 5 years). This was while I was still injesting gluten. The relief I got for a lot of symptoms including my moods and joint pain made me love taking them. They will help you feel better. Wishing you a good nights sleep and I hope you have started your prednizone by the time you read this. ((((((((hugs)))))))

Lister Rising Star

its prednisone that im taking is that the same? im just confused as to how to take them, the bottle says for 18 days and tells you how many to take each day, but the doctor said i was taken it for 2 weeks not for more then 2 weeks?? what do i do?

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

    2. - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

    3. - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

    4. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

    5. - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,444
    • Most Online (within 30 mins)
      7,748

    Squirrel75
    Newest Member
    Squirrel75
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.