Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Guest Robbin

Lister, I have taken prednisone on many occasions and I can honestly say even though there are side affects POSSIBLE-I always, always feel better after a couple of days on them. You are so worked up and nervous, it is no wonder your stomach is a mess. I would eat as much as possible the foods you can tolerate and see how you feel. Usually once the inflammation is under control, you can start healing. Just be sure to take the meds. exactly as you are prescribed and wean off slowly. There are a lot of people on here who care about you and you just need to relax and concentrate on one day at a time. You may have gluten intolerance, casein intolerance, and a host of others that a lot of us are discovering. Please do not think of "what ifs" - that will drive you nuts. Take care & know we all care {{{Big Hug}}}


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



Celiac.com Sponsor (A8-M):



  • Replies 411
  • Created
  • Last Reply
Lister Rising Star

is it ok for me to take my b12s while on these meds? i skiped my normal b12 vitemen today becasue i was not sure

gfp Enthusiast
man these pills are making my stretch marks show for some reason, they had finally died down

Its scar tissue... they are probably repairing it ....

is it ok for me to take my b12s while on these meds? i skiped my normal b12 vitemen today becasue i was not sure

I can't see why not.... ask the pharmacist of you prefer but I would personally keep taking them unless they say otherwise. If your Dr. knows about the B12's then he would have specifically told you but I honestly can't see why not...

but once im all healed up will the inflmation just come back? like is it chronic and only temporarly meds will work?? or is once the inflmation gone it stays away?

Who can say.... your Dr. obviously believes otherwise.

The idea is to let the body repair itself.... the med's are just to give it a break while it does this.

Its like if it repairs say 10 cells in a day .. at the moment you are repairing 10 then damaging 9 again and perhaps some days damaging 11 then repairing 8.... so its 3 steps foprwards and 2 back....

With the meds you will still only be repairing the same amount (well as your body is healthier you might repair faster but ...) Instead of repairing 10 and damaging 9 it will be repairing 10 and damaging 1-2...

how do i leave my stomic alone? should i start eating very very little for a few weeks? i dont quite understand how i take care of it?

You just give it easy to digest food and no irritants (or as few as you can)

Coffee, hot 'n' spicy ... alcohol (and nicotine) are irritants.

Anything with lots of water in it is usually easy to digest...

Zuccini, egg plant, cucumber (technically fruits) are all easy to digest...

Hard starchy foods are more work like corn, rice and perhaps potatoes...

A lot of people find a food combining diet easier on their stomach... (I do)

The theory is meats and protein rich foods like nuts need an acid environment to digest whereas vegetables need a less acid environment. It is suggested that by eating them together it kinds confuses the stomach...on how much acid to produce. While it can't digest everything it keeps making more acid = rumbling and stomach cramps etc.

A lot of people also debunk this.... personally I find it helps a lot.

You can get books or download from the internet lists of the different foods and you just try and eat them seperately...

10 yrs ago (having been biopsied for stomach cancer....ulcers and basically anything but celiac) I got put on a acid inhibitor which was then ranitidine and told it was for lfe.

A friend who's husband has Chrons recommended this diet. She did it herself and it has to be said she looked very healthy on it... she had convinced a few people to try it and they too all got healthier.

I was absolutely desperate so I tried it and it worked .....

The one I followed had gluten in it but I also found the book a bit "new world hippyish" but I was back in the UK for a short time and saw a TV audience show ... a bit like a watered down Oprah and the theme was diets.

They went through and blasted most of them... they had Dr.s in to blast them and then they came to this one and the Dr.s all blasted it.. no scientific evidence etc. ... then people who had done the diet all got up and started saying they didn't care... they were healthier than they had been ... they had lost/gained weight to a healthy weight etc. etc.

Non of the other diets had this sort of following... or convincing advocates... and one mentioned a different book that combined "food combining" with cycling "bad foods".

Bad foods were basically very starchy stuff like rice, corn and bread .(you were only meant to eat the same bad food once in 5 days maximum).. BUT he also advocated not eating wheat at all... if you could.

Well I got much much better... with little hickups every 5 days.(or so).. and when I cut out wheat as much as I could it suddenly struck me... its the freakin wheat. I had actually heard of celiac disease... but that was about it and I was certain I didn't have that... I was just a bit sensitive to wheat... :ph34r: however I cut out all non hidden gluten and did the diet ... and I really really improved.

To cut a long story short my mom started getting the same symptoms... to be honest she had always knocked my "wheat thing" ... and even been quite cruel accusing me of attention seeking (I once missed a flight because I was literally doubled over in pain and the pilot refused to fly me... (ironic I was flying back from Africa for a endoscopy!!) etc. etc. so after she had finally been referred to a physchiatrist for hypochondria and the Dr. had exhausted almost every last test known I managed to get her to suggest a IgA., IgG screening ....

Her Dr. laughed in her face (she didn't realise what the tests were for) and told her she was just mentally ill and nothing wrong with her except attention seeking and Munchausen... but he did run the tests.

He didn't actually apologise.... :ph34r: but when he did get the results he sent her for a biopsy and this was very postive....

Lister Rising Star

dont think the pills are working yet if at all, i thought they where yesterday but i woke up today and since the second i woke up my stomic is hurting growling and gnawing :(

__

so if the pills let me heal and it still takes small steps back and then heals and takes steps back once im off the meds would it not go back to healing less and damaging more? whats the point of the pills then?

queenofhearts Explorer

It's to give you a chance to heal, Lister, don't you want that? Try not to let your mind spiral into worries about the future. Let the meds do their work. It's not instantaneous, but you will get results. Then with luck your body will achieve a balance so that healing begins to predominate over inflammation. It's like getting a jump start. Your own healing will take over eventually.

Lister Rising Star

oh ok, i took it the wrong way, i thought it ment that it jump starts the healing until you stop taking them and then the infection starts to take back over the healing,,, so it jump starts the healing permanetly?

queenofhearts Explorer

That's the idea. Give it a chance!


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



Celiac.com Sponsor (A8-M):



Lister Rising Star

oh on a plus side i slept like a baby last night i was in a deep deep sleep and i can say honestly today is the first day in 5 months i have woken up not incrediably tired and it feels good, just wish my stomic would shut up

queenofhearts Explorer
oh on a plus side i slept like a baby last night i was in a deep deep sleep and i can say honestly today is the first day in 5 months i have woken up not incrediably tired and it feels good, just wish my stomic would shut up

That is an extremely good sign. Real rest will help you heal much faster. Your stomach will get the message soon!

Lister Rising Star

ummmm meds are doing bad things, my bms are back to how they where when i was first sick, like there are small black chunks in them and little red specks of stuff should i worry?

CarlaB Enthusiast

Keep taking your meds!! I've been gluten-free for 8 months, my body still does weird things, too. It's normal for us ...

Lister Rising Star

the black stuff just makes me really nervis and the smell of my bms has changed back to that scary smell

CarlaB Enthusiast

Mine goes back to a pretty scary smell ocassionally, too. :blink: Sometimes the healing process seems to backtrack. Keep taking the meds, then call your doc about it on Monday if the black is still bothering you. Maybe your system is just detoxing more crud out of it.

Lister Rising Star

ugh these pills suck so far. my stomic just attacked me farely bad, i was just laying there and it kept making a really really loud squirting noise with pain :( gah wtf these pills are making me worse

CarlaB Enthusiast

Give them time. Remember, you're not doing as badly as you think you are. Didn't your doc tell you he was surprised you were able to work? Well, you are working. You are healing!!

Lister Rising Star

doctor never said it was a surpise that i could work..?

CarlaB Enthusiast

Oh, I thought you mentioned that a while back ... that he was surprised at how well you were doing and that you were working fine and everything ... I must have misunderstood a comment ...

Lister Rising Star

ok now im really confused and mad about these pills and can hardly wait until monday to call up the doctor. So i was talking with my girlfriends grandma and she started to go off about the pills they put me on. saying that they are extreamly harsh and that they can burn physical holes thru your stomic and should only be taken if really needed, well the doc gave me these without having any form of diagnosis he just gave them to me with a chance that they may help with something.. so if these pills are so seriuse shouldnt he be a little more against just handing them out all willy nilly, i dont even have symptoms of anything these pills treat besides slight mucus in stools i dont have diaherea and that is the number 1 symptom for anything he could possible be thinking of treating with these, hes a fricking crackpot

and these pills are making me so fricking tired i can barely function

Am i wrong here or dont these pills sound like the wrong idea i meen these are raeally dangeriuse

Lister Rising Star

im ready to quit the pills but i cant because of the fact you gotta ween off of them, so i have to wait tell monday to talk to the doc, i really think he did a bad move by puting me on them

Lister Rising Star

anyone that has taken predisone before, what was the mg pills suscribed to you? mine are 10 mg i was wondering if this is a very low dosage (maybe the doc was not insane) or if this is the normal (wtf was he thinking) the more i keep taking these, the more i keep hearing from people about how dangerise and bad they are for you, i am supposed to take my next 2 pills (20mg total) in 5 minutes but i almost want to skip them because of this, i know i will take them because its dangeruse to just completly stop, but i really dont want to and i feel these are a really really bad idea, i dont want to go to sleep and end up in a coma or something i meen sheesh these pills may as well be cyanide

queenofhearts Explorer

Lister, I haven't taken this myself, but please don't freak out about the meds, I really think you should stick with them for a bit. Your doctor did NOT prescribe "cyanide". The symptoms you have been suffering need to be addressed. Who has been telling you that the meds are poison? All the messages here have been positive. Patti & Ravenwoodglass were helped by them--I feel sure they will help you too. Please take your next dose on schedule.

Leah

gfp Enthusiast

Lister, all you have done is freak out over every symptom.

The amount you are worrying about everything anyone would be ill.

Nor is being perpetually worried going to help the healing process WHATSOEVER.

If you can't control this constant freaking out yourself then you are going to need some professional help.

i feel these are a really really bad idea, i dont want to go to sleep and end up in a coma or something i meen sheesh these pills may as well be cyanide

hes a fricking crackpot

and these pills are making me so fricking tired i can barely function

He sounds like a pretty good MD....

WORRY is what is making you so freakin tired! WORRY and STRESS.

ugh these pills suck so far. my stomic just attacked me farely bad, i was just laying there and it kept making a really really loud squirting noise with pain sad.gif gah wtf these pills are making me worse

Er, you got stressed and your stomach reacted. ???

the black stuff just makes me really nervis and the smell of my bms has changed back to that scary smell

Scary smell? What it smells like a tiger.. tiger's are scary.... poop smells bad.. not scary.

but since going gluten free i have close to 150 pounds i was around 278-285 and now im 160- this weight loss happend in less then 4 months of time. is this normal after going gluten free?

Its completely normal for someone stressing out over nothing.

im so close to giving up on the diet and just eating normal i almost dont care if i do get sick again hey atleast then i would loose the rest of my stomic and probably die off of this crappy planet and stupid life.

gah should not have read all of that i desided to look up Zollinger-Ellison syndrome, and now im scared crappless, i hope i dont got that jeesus canceres tumors and crap omg...... but when i googled Zollinger-Ellison syndrome it was talking about knawging pain in upper abdomen and that is what i have ahhhhh ok i wont try to get worked up over this without having the apointment on monday first

the more i read the more i get scared, i dont know what i have i match all the symptoms for petic ulcers, zollinger ellison syndrom, and stomic cancer now im crying because i dont even see how a doctor will be able to figure it out- i just made myself really upset....... im gonna go lay down im tearing up

Then quit reading....

ravenwoodglass Mentor

Lister stop talking to other people about the pills and just take them.

I second what GFB said big time. You are worrying yourself sick over nothing. And you are making every possible side effect show up becasue you are worrying about it. You need to stop looking up diseases over the internet and perhaps start talking to your doctor about seeing someone who can teach you how to relax and think constructively instead of panicing over every little thing.

You need to take the pills, they are not some deadly poison and will help if you give them a chance. We can't hold you down and force you to take them, it is your choice whether you want to take them and get better or not take them and continue to feel bad.

By the way if you decide you want to comepletely quit the diet go right ahead, but be aware that I, for one, had daily cramps, mucousy bloodly D and extreme pain in every part of my body for 15 YEARS so if you think that not doing the diet will let you commit suicide through dietary poisoning it will take many, many painful years to do so.

Incidentally the only things that gave me any relief during those 15 years were the prep for a coloscopy and PREDNISONE.

Lister Rising Star

when i was having the painful squirt noises yestrday i was not freaking out i was chilling watching a movie with my girlfriend and my stomic just started to act up, im not freaked out, and i have been taking my pills everytime im supposed too, i did talk to my doc about the fact of how tired i am and he said he wants me to come in for bloodwork for anemic to make sure but he thinks its because of my work hours and how early i have to get up mixed with the meds. i dont really know if the meds are helping me out though, i meen the knawing pain has left me alone since i started but instead i get like major heart burn in the morning from the second i wake up for like 2 hours and just general gastral pain all day, but imeen i guess its not as bad as it was. Only thing that still conserns me (not worry just consern) is the black stuff that has shown up again and the smell of hay that comes with it. not freaking out over it or anything just conserns me. anyways back to my movie (inside man with denzel washington dang its good movie)

queenofhearts Explorer

I agree, Lister-- your anxiety is making you sicker. Have you spoken with your doctor about this, or seen a psychologist? Mind you I'm not saying you are imagining your pain-- but the digestive system is very sensitive to nervous disturbance. Even the healthiest person has experienced "butterflies in the stomach" or in a terrifying moment being "scared s$#&less"-- in someone with inflamed intestines, these symptoms are magnified. You would do yourself a world of good by learning relaxation techniques, guided visualization, yogic breathing. I suspect you would also profit from anti-anxiety meds but given your fear of meds, I'd start with the others.

Leah

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,300
    • Most Online (within 30 mins)
      7,748

    Liss28
    Newest Member
    Liss28
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I completely understand the frustration of finding reliable gluten-free ingredients—it's exhausting when trusted products disappear or companies don't respond to safety inquiries. For teff flour in bulk, check out Azure Standard or Bulk Foods; both often carry gluten-free grains in larger quantities and clearly label dedicated facilities. For soy flour, Anthony's Goods tests for gluten and offers bulk options, though always verify their current certifications. For beans, peas, and lentils, Palouse Brand is a great choice—they're GFCO-certified and transparent about their farming practices. As for lentil elbow macaroni, Explore Cuisine offers similar pastas, though cross-contact policies vary. When companies don't respond, I lean on third-party certifications (GFCO, NSF) or stick with brands like Jovial or Edward & Sons that prioritize allergen safety. It's a constant hunt, but hopefully these leads help! Have you tried local co-ops or ethnic markets for teff? Sometimes they stock bulk African or Indian brands with clear labeling.
    • Scott Adams
      Beans in desserts are a fantastic way to add moisture, structure, and protein while keeping recipes gluten-free. Black bean brownies are a classic, but other beans like adzuki and pinto can also work well—adzuki beans are naturally sweet and often used in Asian desserts, making them great for cookies or cakes. Lentils, especially red lentils, blend smoothly into batters and can replace flour in recipes like blondies or muffins. Since you’re allergic to chickpeas, you might try navy beans or cannellini beans for a milder flavor in vanilla-based desserts. For less crumbliness, blending cooked beans into a paste helps bind the dough, and adding a bit of xanthan gum (if tolerated) can improve texture. If you’re experimenting, start with recipes that replace half the flour with bean purée before going fully flourless. Have you tried using aquafaba (bean liquid) as an egg substitute? It works wonders in gluten-free baking too!
    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
×
×
  • Create New...