Do You Just Feel Sick?

[TTNOGluten]

In the wake of getting my gallbladder out a few days ago I am still pretty sore and feel rotten. Even prior to that though one of things that I just keep searching for an answer for is this feeling of just feeling sick. It is truly hard to put into words, maybe a feeling of some bloating, combined with malaise, through in a little nauseaa and fatigue, as well as just feeling uncomfortable in my own skin.

It is truly hard to describe to someone. I told my wife it is that feeling that you get when you feel like you are getting the flu or strep throat or some type of infection without all the other symptoms. You just feel like gickkk!!!!!

I keep looking and seerching for an answer for this, that there has to be some other source of this other than celiac dz. Maybe this is what I should expect, maybe this is the face of celiac, either way I hate it. It is stripping me of my life, my muscles ache, I have little motivation do anything and it is just draining me. The only thing I get peace from is sleeping, but then I have to wake up again and face it tomorrow.

I am strictly gluten free, it is constant. I have vit. levels check as well as other labs all of which are normal. I just cannot escape this constant yuck feeling in my gut and throughout my body.

Am I normal?

is this the face of celiac??

does it get better and when?? I have been gluten free nearly 4 months with no improvment

Please help with any of these answers???

[IrishHeart]

I am sorry you are feeling so poorly and I imagine you are pretty fed up right now. Don't blame you one bit. I had all these symptoms myself and about 3 dozen more. Just awful, I know.

Post-surgery will make you feel lousy, so that may take a few days to wear off. You had anesthesia and believe me, in a leaky gut situation, where your body is really messed up already from the celiac--well, it will take a bit to rebound. I have had a few minor surgeries this past year and the anesthetics make us feel "off",

Drink a LOT of water to push it through you. If you do not take probiotics already, now is the time to start. Get some Culturelle OTC. Take it every day with big glass of water and it will repopulate your gut.

If you are eating dairy products, it may be your problem, too. Take it out of your diet for a few months and see if that helps. Many celiacs have secondary lactose intolerance--and it is often temporary--- until the villi heal.

Make sure your Vit, D, B-12 and Folate levels are where they should be as those contribute to malaise and fatigue and nausea. Folate deficiency especially made me nauseous and "limp" and feeling like I was dragging my butt around. Cleared up with prescription supplementation. Those 3 are the ones that most often occur in malabsorption, along with iron deficiency.

That said, I can honestly say it took me several months --

(now, do you want the truth about how many? --if not, cover your eyes and go to the next line ---- 10 months)

before I stopped feeling like Crap every single day. I listened to the wise people on here and my doctor --who said "It takes time and it is not a linear healing path. Your body is trying to right itself." They were right. After being ill and in constant agonizing pain for 3 1/2 years, I just wanted it to happen quickly. But the body does not work that way. I was UN-DXed for most of my life--it will take a long time to recover.

I vowed to remain patient, even though it was very difficult.

But it Happened!!! I lived in hell for so long and when I started to realize that I was coming out of the gluten stupor, my energy was picking up and I was no longer short of breath and the constant GI symptoms were disappearing and now, my muscle mass is returning --well, I see what celiac IN REMISSION feels like. I still have a long way to go, but I am better each month that passes.

I asked the same questions you asked on here, frightened that it was not working, that I was never going to be normal again in this lifetime. This disease tried to kill me and I am able to tell you now that I am no longer the sick woman I was for years--and that is just amazing.

The face of undiagnosed celiac is not pretty, but the face of celiac--in remission--is as healthy as can be if you follow the gluten free diet and take care of yourself.

You are recovering from surgery (one that I had BTW -- 26 years ago when they cut a 7 inch scar down the middle--ugh!) and it takes it out of you, especially since you are still RECOVERING from celiac malabsorption.

Give yourself a break,hon...you need some rest and some TLC. Take care and try to relax, if you can.

Get those probiotics on board and eat plainly for a few days until the anesthesia gets out of your system.

Let us know how you are doing.

Best wishes,

IH

[GFinDC]

We are all individual and have our own road to follow. some people get better on the gluten-free diet right away and have few other problems, Others it takes longer and some develop other food intolerances along the way.

I wonder what your doctor told you about recovery for gall bladder surgery? I've read on here about people having on going symptoms for 6 months or so after gall bladder surgery.

[TTNOGluten]

Frustration, I really do try to stay optimistic and realize that surgery recovery takes some time. I guess what I am perplexed by is how far to keep pushing. do I accept how I feel(lousy) even before the gallbladder surgery with this constant malaise, or keep looking for additional answers. Seems hard for me to believe that all of this is related to Celiac, especially as of 4 1/2 months I never had a GI problem ever. and now blam all of the sudden I am overcome with feeling lousy, and it all started after a course of strep throat and taking some Antibiotics, instantly!!

I can live with the diagnosis, I just can't live with feeling this sucky all the time, I guess if there were some change with all the scarifices I have made with diet, doctors visits, and now surgery I would have some peace of mind, but it seems no matter what I do from a gluten free standpoint, it simple flat out doesn't improve, even though they tell me my celiac labs from 4 weeks ago are back to normal?? What gives? that would lead me to believe to I should be back to normal, I have done the diet and stick with it religiously without cheating yet still feel horrendous.

Sorry to vent, I guess you just get tired of feeling tired and sick. I sure admire the folks on this web page who are able to stay so positive about feeling so lousy, I am unfortunately not one of those people. I feel like my life is taken away, I want it back!! I have two great kids, and a job and wife, that I need to uphold and right now, it seems like everyday is a constant struggle to manage anything. Yuckkkkk!!!!!!!!

anyone else who feels this way?? feel like I am going nutso with this!!!

[IrishHeart]

and now blam all of the sudden I am overcome with feeling lousy, and it all started after a course of strep throat and taking some Antibiotics, instantly!!

BINGO!! And there it is!

So glad you mentioned this!! I am betting this it your problem.

When someone tells us their celiac panels are good ---but they started having a problem when this happened:(fill in the blank)--- THAT is the almost always the culprit. You are correct--it is NOT because you are not complying with the diet.

Antibiotics not only knock out the "bad bugs" but they also deplete the good bacteria in your gut! This is why I am telling you--take some probiotics. Please, trust me on this one. Been there/done that. Messed me up big time-- and this was before I knew all the stuff I know now. Docs will never tell you to follow a course of antibiotics with probiotics! (just ridiculous! )

Here is WHY celiac guts need probiotics:

Open Original Shared Link

Get yourself some Culturelle probiotics. Take one --with a big glass of water--on an empty stomach in the AM and one at bedtime. Do that for a week, then just take one a day. Give it a few weeks. My GI doc highly recommends it and I tell it to everyone else. It works. IMHO

If you STILL do not feel better, then please, tell your GI doctor your concerns.

I felt as lousy as you did, honest, (like, I might as well jump off a cliff bad) but balancing the gut is key. I felt many times that I would never feel well again in this lifetime. It was HELL. And now, it is not!

But I await you coming back in a few weeks (or earlier) to say you feel better.

Irish

[TTNOGluten]

I did start a Probiotic called ultimate flora, states it is both gluten and dairy free containing 30 billion active cultures per capsule. I have thought this from the word go, that my flora is way out of whack, weird that no matter what I do, I just can't seem to get to feeling better. I don't know this kinds from any other, other than they appear safe and gluten free. I know there are many such as culturelle and align, etc. don't know if any are better than others, or what the deal is with my guts and feeling so lousy.

I literally can eat anything, as simple as homemade chicken rice gluten free soup, and within minutes I feel nausea, instant excruciating neck and back pain, this crawling feeling inside, and feel like I just want to die a million deaths. Then after that passes I am left with constant back ache, stomach quesiness, and epigastric discomfort and very frequent belching, and often bloating. This is daily for almost 5 months. It gets so bad, that the only thing I can do is scream or feel like crying out.

[IrishHeart]

I did start a Probiotic called ultimate flora, states it is both gluten and dairy free containing 30 billion active cultures per capsule. I have thought this from the word go, that my flora is way out of whack, weird that no matter what I do, I just can't seem to get to feeling better. I don't know this kinds from any other, other than they appear safe and gluten free. I know there are many such as culturelle and align, etc. don't know if any are better than others, or what the deal is with my guts and feeling so lousy.

I literally can eat anything, as simple as homemade chicken rice gluten free soup, and within minutes I feel nausea, instant excruciating neck and back pain, this crawling feeling inside, and feel like I just want to die a million deaths. Then after that passes I am left with constant back ache, stomach quesiness, and epigastric discomfort and very frequent belching, and often bloating. This is daily for almost 5 months. It gets so bad, that the only thing I can do is scream or feel like crying out.

Wow, I am not sure then what else to suggest. I know that the last thing anyone wants to hear is "just be patient" when you feel so bad. I did not like hearing that either. I cried every day for many months-between the GI tract pain and the joint & nerve pain, I was miserable.

I wonder if now that your gallbladder is out that it might start to correct??

It took me weeks post cholecystectomy for me to "be all right" again.

I have my fingers crossed for you, hon. I feel your anguish in your words here and I pray for your recovery.

[TTNOGluten]

I am sorry Irish Heart, when I said I started the probiotic, I meant I just started it a couple of days ago, and I do realize that gallbladder healing is not instant. I guess you just think after suffering for so long that you are going to go through this big ordeal like surgery and bango everything is going to be normal again and on with life like I used to be.

You and I sure sound like we have had similar symptoms. I did talk to PCP and he is going to look at my back again as well where my spine pain is. You know that is the crazy thing about this disease, not knowing if one thing like my back is related to it or not?? So when do you stop looking and chasing all these symptoms?? honestly if I could just get rid of the back and rib pain, and the nausea/upper belly pain, I think I would feel like a million bucks. I am dying to get out and go for a run/ lift weights do anything just to feel healthy again. I sure miss that stuff, and not doing it makes me feel even more like a slug!

[GFinDC]

I don't know if you have tried this or not, but Betaine HCL might help. Betaine HCL can help if you have low stomach acid, which is not unusual. Your stomach acid does a lot to protect your body from unwanted bacteria and critters that like to set up shop in a juicy, food filled soup (stomach contents). H.pylori is a bad one that actually decreases stomach acid prodcution. Raising your stomach acid can sometimes kill of a bunch of unwelcome invaders. Another thing is pro-biotics, that actually help your system with digestion.

You also might want to consider other possible food intolerances besides gluten. Other foods can cause plenty of problems for people. Really everything we eat / drink has to be considered as a possible problem and not just accepted as being ok because it isn't gluten. And then it still takes time.

I can tell you that it has been a long road for me also, over 4 years now since starting the gluten-free diet. I don't think I'll ever feel completely right but I do have some pretty good days now. But compared to before gluten-free I feel 10 times better. The hidden gluten thing still gets me sometimes but not as often. Also I figured out most of my food intolerances and eliminated those foods and am doing a lot better because of that. Plus I am mostly a meat and veggies eater now to control carbs and keep my blood sugar stable. That helps too.

Doctors don't have much to say when it comes to actually living sucessfully with celiac disease, we have to figure it out ourselves. But we can do that even if it takes a little while.

[IrishHeart]

I am sorry Irish Heart, when I said I started the probiotic, I meant I just started it a couple of days ago, and I do realize that gallbladder healing is not instant. I guess you just think after suffering for so long that you are going to go through this big ordeal like surgery and bango everything is going to be normal again and on with life like I used to be.

You and I sure sound like we have had similar symptoms. I did talk to PCP and he is going to look at my back again as well where my spine pain is. You know that is the crazy thing about this disease, not knowing if one thing like my back is related to it or not?? So when do you stop looking and chasing all these symptoms?? honestly if I could just get rid of the back and rib pain, and the nausea/upper belly pain, I think I would feel like a million bucks. I am dying to get out and go for a run/ lift weights do anything just to feel healthy again. I sure miss that stuff, and not doing it makes me feel even more like a slug!

I hear ya! I feel "useless" not being able to do things I used to.

If only we could just rebound that quickly. Sorry, Kiddo.

My back and neck pain is EXCRUCIATING and I have seen orthopedic doctors, neurologists, rheumatologists and spine specialists. I have horrible SPINE pain.

YEARS of testing, MRIs and THOUSANDS OF DOLLARS. ALL before DX. No answers.

I do have some osteoarthritis and a few discs generating, osteopenia, but it DOES NOT EXPLAIN the level of pain I have. Or the neuropathy.

Their conclusion BEFORE my DX? I don't know.

Their thoughts AFTER DX?--oh, it's probably from the celiac.

Give it time.

That was hard to hear. I wanted a CURE ...NOW!!

IMFLAMMATION = pain. In the gut, the bones, the joints, the muscles and the tissues.

Bone, joint, muscle pain is COMMON in celiac. It diminishes in time.

I had that awful rib cage pain, too...and last week, when I was accidentally CCed, it came right back.

I always say to my hubby, IF I COULD just get rid of the *&^%! pain, I'd be right as rain. I want to go back to the gym, ride my bike, swim, dance do yoga. But my muscles are weak and my back hurts so bad and my bones ache. It sucks. Walking up and down my driveway is my exercise. Months ago, I could not do it without gasping for breath. Now, I do it for 20 minutes. Baby steps. I stacked wood yesterday! yaaay me! A year ago, I needed help getting dressed. See what I mean? It's damn humbling to be so weak and in pain--and I get that you're a man with family. I do.

It gets BETTER. I promise.

Not to be too much of an educator here, but have your read the many things that happen in celiac? What malabsorption DOES?

Do you understand that this destruction went on inside you for a long time and it does not just go away? It takes AT LEAST 6 months to heal your intestines, maybe 2 years. Just because the antibodies are down, it does not mean all is well down there.

Can you sit in a warm bath? Epsom salts? Have a massage?

I am in PT and have MT and they HELP a lot!

Try to calm your body down. Take the probiotics.

Eat PLAINLY. Too much fat after a gall bladder operation is murder to process. !!

Chicken, turkey, potatoes, rice, leafy green veggies...no spicy stuff.

No coffee or booze. No dairy. Just for a few weeks. See how it goes.

You might have rebounded faster once Dxed, if not for the gall bladder and the use of antibiotics. They put a huge glitch in the works, but you'll get past this.

Wish I could wave a magic wand for you For me. For all who suffer.

But the bottom line is: It takes time.

Hang in there. Do see your PCP and let me know what he says.