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One Week gluten-free, Feeling Worse - Tell Me It Gets Better

WestCoastGirl

By WestCoastGirl
in Coping with Celiac Disease

Recommended Posts

WestCoastGirl Apprentice
WestCoastGirl
Posted

Talk me off the ledge.

 

I am 1+ week gluten-free and 1 week dairy free.

 

And honest to God. I get cramps and D with EVERYTHING I eat.

 

Rice? D. (So I stopped rice.) Cantaloupe? D. Home made soup with well-washed vegetables? Cramps and D. This morning I had eggs and a few well washed strawberries (the eggs were in a dedicated pan, I bought it knew for going gluten-free) and I had D. Following: cramps all day. ALL DAY. They still haven't stopped.

 

It's getting so that I'm afraid of eating anything at all. I can't stand this ongoing pain. What the heck?? I'm about to cook myself some soup because I might just fall over if I don't. I don't relish the reaction I know is coming. :( Worse cramps (since they haven't stopped yet).

 

I'm starting to get scared that I have intestinal cancer or something. Absolutely nothing I eat is staying where it should without pain and D.

 

Somebody please tell me this is normal...

 

ETA: I am eating NO gluten-free "substitutes" right now (gluten-free goodies/baked goods/rice noodles) and am not eating any potatoes, rice or corn, including corn syrup, glucose syrup ingredients. Basically I am eating: eggs; vegetables; fruit; nuts; very occasionally, a few semi-sweet chocolate chips as a treat. No cereals, gluten-free breads, gluten-free cookies or gluten-free noddles, no nightshades (no tomatoes, eggplant). No dairy products of any kind, including whey additives. Actually, I'm really not eating additives at all as I'm eating/making everything fresh. No gluten, dairy or corn in my medications or supplements. No soy.

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shadowicewolf Proficient
shadowicewolf
Posted

Talk me off the ledge.

 

I am 1+ week gluten-free and 1 week dairy free.

 

And honest to God. I get cramps and D with EVERYTHING I eat.

 

Rice? D. (So I stopped rice.) Cantaloupe? D. Home made soup with well-washed vegetables? Cramps and D. This morning I had eggs and a few well washed strawberries (the eggs were in a dedicated pan, I bought it knew for going gluten-free) and I had D. Following: cramps all day. ALL DAY. They still haven't stopped.

 

It's getting so that I'm afraid of eating anything at all. I can't stand this ongoing pain. What the heck?? I'm about to cook myself some soup because I might just fall over if I don't. I don't relish the reaction I know is coming. :( Worse cramps (since they haven't stopped yet).

 

I'm starting to get scared that I have intestinal cancer or something. Absolutely nothing I eat is staying where it should without pain and D.

 

Somebody please tell me this is normal...

 

ETA: I am eating NO gluten-free "substitutes" right now (gluten-free goodies/baked goods/rice noodles) and am not eating any potatoes, rice or corn, including corn syrup, glucose syrup ingredients. Basically I am eating: eggs; vegetables; fruit; nuts; very occasionally, a few semi-sweet chocolate chips as a treat. No cereals, gluten-free breads, gluten-free cookies or gluten-free noddles, no nightshades (no tomatoes, eggplant). No dairy products of any kind, including whey additives. Actually, I'm really not eating additives at all as I'm eating/making everything fresh. No gluten, dairy or corn in my medications or supplements. No soy.

Have you replaced any scratched pans, wooden spoons, etc? That might be an issue there.

 

Again, its only been a week. It could very well be that those foods are not necessarily giving you the issues, rather your body is going through a withdrawl period from gluten.

WestCoastGirl Apprentice
WestCoastGirl
Posted
  • Author

Yup. :) Dedicated (new) pan and pots, dedicated cooking utensils (also new), dedicated dishes. I will hang in there...thanks for your answer...

tommysmommy Newbie
tommysmommy
Posted

Wow, gluten and dairy together - you are a brave one! Ledge talk down time. It sounds to me like you are experiencing something that not everyone goes thru but plenty do - it's called gluten withdrawal. Google it (you may also find it under wheat withdrawal). Wheat/gluten can act like an opiate and when you eliminate it, some people go thru a rough time - basically your body is in a crisis mode and needs to re-regulate itself. My husband experienced it with serious brain fog and joint pain, everyone is different. IF that is what is happening to you, the good news is....it should end very soon! Some good probiotics would help and a bland diet for now. Get past this rough patch and things will improve quickly!! I'm no expert, just living the life. If it doesn't pass soon, call your doctor.

squirmingitch Veteran
squirmingitch
Posted

Great big hugs ((((((((((((((HUGS))))))))))))))))))))))

 

Okay, breathe, just breathe. Your body is going through massive changes & it can be really wonky for (I hate to tell you this) months. You're probably going to go through gluten withdrawal & that's no fun at all --- been there, done that. 

You're doing right though judging by what you've said with the dedicated pans etc.... Try bone broth & bananas, sweet potatoes. Keep a food log to see what doesn't like you. And you'll most likely soon get lots of these foods back. But you're going to have periods where foods just don't like you no matter what. I'm so sorry you're suffering so but I PROMISE it WILL get better --- it WILL!

WestCoastGirl Apprentice
WestCoastGirl
Posted
  • Author

Oh gosh, thanks so much to both of you. I really needed to hear this!

 

I'll hang in!!

1desperateladysaved Proficient
1desperateladysaved
Posted

It gets better!  You are healing already, even if you can't feel it.  A larger variety of protein foods may help with repair, if You can.  I lived 30 years in fog and fatigue.  But the mind is clear and light now.  There is hope for you too!

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ItchyAbby Enthusiast
ItchyAbby
Posted

It does get better! Everyone told me this 6 months ago when I first went gluten-free and I just had to believe them. The first month or two were really hard and then I started noticing a few more good days here and there. Now at 6 months, I am feeling hopeful and the bad days are fewer and farther between.

 

Your body is working hard at healing right now. Time and patience ad more time and patience. You need lots of rest, lots of water and simple foods. I second the bone broth suggestion - make it with marrow bones and or chicken feet to get lots of gelatin for tissue repair! Drink a cup a day at least. Sweet potatoes, pears, bananas - soft foods might be best for a while. And maybe eat small amounts. You could try making some congee - it's really easy and nourishing. Are you taking a probiotic?

 

You are doing a good job from the sound of it. I know it's hard. I was there not to long ago (though with different symptoms) and I felt hopeless and scared. I just hung on to the words that people here told me. Time and patience. It will get better. Hang in there. *gentle hug*

WestCoastGirl Apprentice
WestCoastGirl
Posted
  • Author

Thank you. <3 I haven't made a bone broth. I am definitely going to make that. I've been making broths out of pieces of chicken, etc.

 

I haven't started a probiotic yet...I will go get some.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Whenever my body has gone into I-can't-eat-anything-leave-me-alone mode, I find that plain chicken broth really helps.  Sometimes with just a bit of salt in it.  I drink it like tea.

IrishHeart Veteran
IrishHeart
Posted

It gets better, I promise.

 

It is hard to believe when you feel so wonky, but it's true. It took me a long time to get there, but I am old

(well, in dog years anyway) and I was very ill at diagnosis.

 

Time is your ally. Patience is key. Tell yourself "Every day is a healing day!" when you wake up and when you go to bed.

Healing from celiac is the mother of all exercises in patience. But you'll get there!

 

Hydrate (people forget to do this, but if you have had  the big D all the time, your electrolytes are off. The hubs used to make me drink 16 oz. of water with salt and sugar mixed in. Worked like a charm) 

 

Take probiotics. Nothing like probiotics to get your good guy bacteria back up. Dr. Fasano calls it your microbiome. Healthy gut, healthy body and brain.

 

Culturelle (dairyfree) OTC has lactobacillis GG in  it. Backed by science. Great for stopping diarrhea. My GI doc recommends it.

 

Just try to relax, hon.....breathe slowly and deeply..Take walks. Do yoga.

Laugh...a lot.

Hang in there. ;) 

 

Wish I had a nickel for every pep talk I've given or received. I'd have ...er, um I don't know. I suck at math.

But I do know this: They were all right....I got better. And so will you, and soon, you will be the one

giving the pep talks. 

IrishHeart Veteran
IrishHeart
Posted

look.here's me.... cheerleading you on (GottaSki Lisa gave me those pink poms poms) True story!.

 

smileys-cheerleading-755332.gif

 

I put them on my bike. For real.

WestCoastGirl Apprentice
WestCoastGirl
Posted
  • Author

Ha ha, awesome!

 

Thank you, everyone!

gilligan Enthusiast
gilligan
Posted

I know exactly how you feel!  I posted something similar a few days ago.  I felt okay the first month or so, and now three months out, I feel awful! I have a 100% gluten-free kitchen, never eat out, and stick to fresh foods only.  I read and was told that bone broth is definitely the way to go.  You need to cook it much longer than you would expect - 24 - 36 hrs.  It will gel, an you'll be drinking much needed collagen for gut healing.  I was also told to eat bananas, but eat the ones that are spotty without any touch of green (green ones have too much starch and may bother you.  This seemed to help me quite a lot.

 

I've had the dehydration issues!  Make sure you avoid that!  Yikes!  I ended up in the emergency room.  I began drinking water to ward off the dehydration, and it upset my potassium level. I now drink twice as much as I normally would, but I drink gatorade, pedialite (yuck!), and water and tea with a little salt and sugar added.  ER nurse told me to eat juicy fruits each day, such as grapes, watermelon, kiwi, etc.  It is helping.  Good luck!  I can't wait for this to be over, and I know you feel the same way!

NoGlutenCooties Contributor
NoGlutenCooties
Posted

It seems to happen a lot that people feel better, for a week - or a month - or however long, and then BAM.  They feel like crap again for a short time, and then slowly get better for good.  I was just wondering... and this is just me with one of my weird theories because this is just how my mind works... if it has to do with the body thinking the antibodies are finally working.  Think about it from the body's perspective... it has been trying to kill this foreign invader (gluten) for years.  Nothing has worked.  Try as it might, the gluten keeps coming.  And then one day it doesn't.  The antibodies must be finally working, right?  So the body sends out one last charge of antibodies to finally kill what's left of the gluten.  Only of course... it can't... and just ends up making you sicker... temporarily.

 

It's a bit like dogs who bark at the mailman.  Why do they do that?  Because it works.  The mailman approaches the house... the dog barks... the mailman goes away.  The dog gets confirmation that their barking works... so every time they see the mailman they bark.

 

The body realizes the gluten is going away... which to the body is the confirmation that the antibodies must be finally working... so it generates more to finish the job.

 

I know... I sound like a crazy person, right? 

WestCoastGirl Apprentice
WestCoastGirl
Posted
  • Author

NoGlutenCookies, that's actually a fascinating theory. There must be *some* reason for the phenomenon, right? That's pretty interesting.

 

Gilligan, funny you should mention collagen, I actually started taking it in capsule form...but for vanity... :D (gettin' old)

IrishHeart Veteran
IrishHeart
Posted

 collagen, I actually started taking it in capsule form...but for vanity... :D (gettin' old)

 

I take collagen because my connective tissue, joints and hair were all damaged severely for years from undiagnosed celiac.

I had significant hair loss. (made me very sad)

It helps. Make sure you get the right kind with hyaluronic acid. 

squirmingitch Veteran
squirmingitch
Posted

It seems to happen a lot that people feel better, for a week - or a month - or however long, and then BAM.  They feel like crap again for a short time, and then slowly get better for good.  I was just wondering... and this is just me with one of my weird theories because this is just how my mind works... if it has to do with the body thinking the antibodies are finally working.  Think about it from the body's perspective... it has been trying to kill this foreign invader (gluten) for years.  Nothing has worked.  Try as it might, the gluten keeps coming.  And then one day it doesn't.  The antibodies must be finally working, right?  So the body sends out one last charge of antibodies to finally kill what's left of the gluten.  Only of course... it can't... and just ends up making you sicker... temporarily.

 

It's a bit like dogs who bark at the mailman.  Why do they do that?  Because it works.  The mailman approaches the house... the dog barks... the mailman goes away.  The dog gets confirmation that their barking works... so every time they see the mailman they bark.

 

The body realizes the gluten is going away... which to the body is the confirmation that the antibodies must be finally working... so it generates more to finish the job.

 

I know... I sound like a crazy person, right? 

Oh man, my hubs would love having a conversation with you. LOL! Actually, I would too, truth be told. We discuss things like this all the time. 

Yeh, & those dogs who bark constantly from the time their owners go to work until their owners finally come home.... well, it worked didn't it? They came home! 

I totally believe it's possible what you're saying about the antibodies doing one last big assault on the invader to make sure it's dead, dead, dead!

So tell me, I'm crazy too right? :lol:  :lol:  :lol:

IrishHeart Veteran
IrishHeart
Posted

ok.....You're both crazy...but I like that in a person!. :D

squirmingitch Veteran
squirmingitch
Posted

Smartass. :lol:

WestCoastGirl Apprentice
WestCoastGirl
Posted
  • Author

Ha! :P <3

NoGlutenCooties Contributor
NoGlutenCooties
Posted

:lol:

 

Isn't that a Billy Joel song??    You may be right... I may be crazy... but it just may be a lunatic you're lookin' for....

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Oh man, my hubs would love having a conversation with you. LOL! Actually, I would too, truth be told. We discuss things like this all the time. 

Yeh, & those dogs who bark constantly from the time their owners go to work until their owners finally come home.... well, it worked didn't it? They came home! 

I totally believe it's possible what you're saying about the antibodies doing one last big assault on the invader to make sure it's dead, dead, dead!

So tell me, I'm crazy too right? :lol:  :lol:  :lol:

 

:)   At least we're in good company!!

IrishHeart Veteran
IrishHeart
Posted

Smartass. :lol:

 

 

takes one to know one  :P

 

(and now, we have devolved into 5 year olds...) LOL

squirmingitch Veteran
squirmingitch
Posted

Once in a while acting like a 5 year old is good medicine for us along with the laughter being a 5 yr. old brings. Ah, to be 5 again!

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