Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Am I Still Healing Or Is It Cc
0

42 posts in this topic

I am still having symptoms after being gluten-free for almost a month.  I don't know if it's still the healing process or if I am getting CC.  Let me give a little history and hopefully someone can help.  Before my biopsy I had sever abdominal pain, belly burning all the time, chronic diarrhea (15-20 times a day), extreme exhaustion, unexplained body aches.   After biopsy found out I have Celiac plus Microscopic Colitis.  My dr then ordered blood work Celiac Panel, I get the results next week when I see him.  The day after my blood work I started my GFD.  My pain is lower most days I would say around 2-4 before it was 10+, only going to bathroom 3-6 times a day, but still feel run down, body aches not as bad, once in awhile still have belly burning like this morning for instance.  I am very careful in preparing my food.  All my gluten-free food is separate from gluten food.  I do all my own cooking.  I want to share my process to see if I am overlooking something and getting CC.  For starters I live with my husband and his parents and I am the only one on GFD.  Before touching food I clean down all counters and stove.  I use all glass cookware however it is shared by everyone in the house, but I pre-wash before using.  We have a dishwasher so all dishes and cooking utensils go in there.  I wash my hands a million times when handling food.   I do have my own cutting board and colander.  I never cook my food while others are cooking theirs.     I can feel a difference in my body but I wonder if I am getting CC because some days my symptoms are worse then others.  Any advise will be greatly appreciated.  

 

  

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi niese

 

This probably takes more time than one month. I myself have been gluten free for 8 months and things have not resolved themselves completely yet, though I am improving.

 

Your blood levels have probably not normalized yet, that means theres still an infection going on in your body.

0

Share this post


Link to post
Share on other sites

Maybe it could be either one.  I think I had both the first 2-3 months.  Do keep improving your care (What you have done sounds good!), and keep on doing it for longer.  Things should get better over time.  If they continue over more time, there is more one can do.  There will be bumps, turns, and up hills in the meanwhile.  Some of these, one can never figure out.  Some you will.

 

D

0

Share this post


Link to post
Share on other sites

Hi niese

 

This probably takes more time than one month. I myself have been gluten free for 8 months and things have not resolved themselves completely yet, though I am improving.

 

Your blood levels have probably not normalized yet, that means theres still an infection going on in your body.

That makes sense thank you

0

Share this post


Link to post
Share on other sites

Maybe it could be either one.  I think I had both the first 2-3 months.  Do keep improving your care (What you have done sounds good!), and keep on doing it for longer.  Things should get better over time.  If they continue over more time, there is more one can do.  There will be bumps, turns, and up hills in the meanwhile.  Some of these, one can never figure out.  Some you will.

 

D

Thank you, you said if this continues there is more one can do, like what?

0

Share this post


Link to post
Share on other sites




There are many more things that you can do, but one month isn't a long time.  You most likely need to give it more time. 

 

You ask what more one can do.  Some of these apply to a few celiacs.  Some of these apply to hardly any celiacs.

You can change any dishes that might have gluten stuck in scratches or cracks.

You can check toiletries, lotions and soaps for gluten.

You can eliminate all gluten from the house.

You can not cook any gluten containing food.

You can make sure your husband and children brush their teeth before kissing. ..brush their teeth and wash their faces.

You can eliminate all grains.

You can eliminate all processed foods.

 

I hope that you feel better soon.

 

You could read through the super sensitive celiac section to get an idea of what some celiacs do in the way of extra precautions.

1

Share this post


Link to post
Share on other sites

It took 9 months for me to reach some level of predictability. 18 to feel stable.

You'll get there. Don't assume you're doing anything wrong... It does take time.

1

Share this post


Link to post
Share on other sites

There are many more things that you can do, but one month isn't a long time.  You most likely need to give it more time. 

 

You ask what more one can do.  Some of these apply to a few celiacs.  Some of these apply to hardly any celiacs.

You can change any dishes that might have gluten stuck in scratches or cracks.

You can check toiletries, lotions and soaps for gluten.

You can eliminate all gluten from the house.

You can not cook any gluten containing food.

You can make sure your husband and children brush their teeth before kissing. ..brush their teeth and wash their faces.

You can eliminate all grains.

You can eliminate all processed foods.

 

I hope that you feel better soon.

 

You could read through the super sensitive celiac section to get an idea of what some celiacs do in the way of extra precautions.

 

Thank you very much for the info

0

Share this post


Link to post
Share on other sites

L-Gluitamine is thought to help with intestinal healing early on.

1

Share this post


Link to post
Share on other sites

L-Gluitamine is thought to help with intestinal healing early on.

I am taking that been on it for about week now.  Was hard to find a gluten free one in my area but I finally found one. 

0

Share this post


Link to post
Share on other sites

Hello. I'm new to this site. This is my first post. I've been gluten free for 13 months. It took me almost 3 months until my stomach got under control. It felt like it was never going to feel better at first. So, hang in there. A lot of other things cleared up during those first few months such as migraine headaches, arrhythmia (atrial flutter), rash, adult acne, hypoglycemia, dizziness, constant fatigue, weakness, and muscle twitches. Now, I can say that I actual feel like a normal person. Howerver, if I get glutened, the symptoms are really terrible and can last for 10 days or more. The terrible stomach burning starts a few hours after being glutened, then nausea, dizziness, foggiest, and weakness. It makes it impossible to exercise. The reason I'm describing all this is because right now I'm experiencing them. I must have eaten something yesterday that had gluten in it. Does anyone have some ideas on how to relieve some of the symptoms of glutening? I hate the suffering. Thanks!

0

Share this post


Link to post
Share on other sites

Hello. I'm new to this site. This is my first post. I've been gluten free for 13 months. It took me almost 3 months until my stomach got under control. It felt like it was never going to feel better at first. So, hang in there. A lot of other things cleared up during those first few months such as migraine headaches, arrhythmia (atrial flutter), rash, adult acne, hypoglycemia, dizziness, constant fatigue, weakness, and muscle twitches. Now, I can say that I actual feel like a normal person. Howerver, if I get glutened, the symptoms are really terrible and can last for 10 days or more. The terrible stomach burning starts a few hours after being glutened, then nausea, dizziness, foggiest, and weakness. It makes it impossible to exercise. The reason I'm describing all this is because right now I'm experiencing them. I must have eaten something yesterday that had gluten in it. Does anyone have some ideas on how to relieve some of the symptoms of glutening? I hate the suffering. Thanks!

It would be good to start your own post, so as to not slip through the cracks.

 

Welcome:

D

0

Share this post


Link to post
Share on other sites

 

I've read in many books and articles that L-glutamine is helpful in cell renewel and protecting the mucosal layer of the gut. It definitely helps me with muscle repair as I do not get nearly a sore as I wouldhave  after a workout when not taking it.

 

I have to disagree.

 

http://www.webmd.com/vitamins-supplements/ingredientmono-878-GLUTAMINE.aspx?activeIngredientId=878&activeIngredientName=GLUTAMINE

 

http://www.umm.edu/altmed/articles/glutamine-000307.htm

 

http://aminoacidstudies.org/l-glutamine/

0

Share this post


Link to post
Share on other sites

I've read in many books and articles that L-glutamine is helpful in cell renewel and protecting the mucosal layer of the gut. It definitely helps me with muscle repair as I do not get nearly a sore as I wouldhave  after a workout when not taking it.

 

I have to disagree.

 

http://www.webmd.com/vitamins-supplements/ingredientmono-878-GLUTAMINE.aspx?activeIngredientId=878&activeIngredientName=GLUTAMINE

 

http://www.umm.edu/altmed/articles/glutamine-000307.htm

 

http://aminoacidstudies.org/l-glutamine/

 

The link I gave above from the University of Chicago Celiac Disease Center says this: 

"What do you think of using L Glutamine to help heal?

We do not recommend this product because no benefits from it have been documented in rigorous, evidence-based research."

 

None of the links given in your post are to rigorous, evidence-based research.  If you have some, I would like to see them, and I would send them off to Chicago so that they could make changes to their FAQs.

0

Share this post


Link to post
Share on other sites

Considering that the U. of Chicago has stated erroneous information regarding hidden sources of gluten, and they are as mainstream medical as it gets in the US, they wouldn't agree with taking any supplements unless they did research on their own.  There is very little research on supplements because the AMA want people to take FDA approved drugs only...that the medical community and pharmaceutical companies make lots of money off of.  Supplements are often out of their reach and they don't like that.  Lots of people take L-Glutamine for healing and it has helped many, but not all people. Mainstream meds are the same way...they don't help everyone and the only way you are going to know is doing a trial run. L-Glutamine is safe, so doing a trial run is not dangerous and may end up helping someone in the long run.  Many MD's around here recommend it to their patients....real MD's, not the phoney kind.

1

Share this post


Link to post
Share on other sites

Guess this conversation has turned into L-Glutamine, didn't mean to cause an issue just wanted some advise on if I was still going through healing process or if it could be CC.

1

Share this post


Link to post
Share on other sites

I am still having symptoms after being gluten-free for almost a month.  I don't know if it's still the healing process or if I am getting CC.  Let me give a little history and hopefully someone can help.  Before my biopsy I had sever abdominal pain, belly burning all the time, chronic diarrhea (15-20 times a day), extreme exhaustion, unexplained body aches.   After biopsy found out I have Celiac plus Microscopic Colitis.  My dr then ordered blood work Celiac Panel, I get the results next week when I see him.  The day after my blood work I started my GFD.  My pain is lower most days I would say around 2-4 before it was 10+, only going to bathroom 3-6 times a day, but still feel run down, body aches not as bad, once in awhile still have belly burning like this morning for instance.  I am very careful in preparing my food.  All my gluten-free food is separate from gluten food.  I do all my own cooking.  I want to share my process to see if I am overlooking something and getting CC.  For starters I live with my husband and his parents and I am the only one on GFD.  Before touching food I clean down all counters and stove.  I use all glass cookware however it is shared by everyone in the house, but I pre-wash before using.  We have a dishwasher so all dishes and cooking utensils go in there.  I wash my hands a million times when handling food.   I do have my own cutting board and colander.  I never cook my food while others are cooking theirs.     I can feel a difference in my body but I wonder if I am getting CC because some days my symptoms are worse then others.  Any advise will be greatly appreciated.  

niese....1 month is not nearly enough time to see resolution of symptoms, plus you have the added problem of Microscopic Colitis.  This occurs often with Celiac Disease.  The hallmark of MC is diarrhea and it takes a long time for this to resolve sometimes.  I know people with MC and they told me it took months of using an anti-diarrheal to see results.  Your whole intestinal tract is inflammed, in your case, and that is going to make recovery slower.

 

I would not cut out other gluten-free grains for now because they provide nutrients (if done correctly) and you do not know if you need to. When first diagnosed, go gluten-free and maybe dairy free at first.  If you cut out too much, it will make it harder to pinpoint the culprit or if it is just lots of inflammation.  If your weight is a problem (low) from all that diarrhea, then I would eat some grains to keep weight on.  Having both of these issues may make for a longer recovery so you may have to be more patient.  Do they have you on an anti-diarrheal?  You should be taking one because when you have MC, your body cannot pull water from your waste as your large intestine is too inflammed and the diarrhea will continue.  I am so sorry you are feeling poorly but it will get better, I promise.  It sounds like you are trying hard to not cc yourself and your system sounds good so I really think it's a question of time with recovery.

0

Share this post


Link to post
Share on other sites

Guess this conversation has turned into L-Glutamine, didn't mean to cause an issue just wanted some advise on if I was still going through healing process or if it could be CC.

You did not cause any issue, niese.  Don't worry about it!

 

You do have a seperate toaster, don't you?  That's a biggie..... ;)

0

Share this post


Link to post
Share on other sites

I am still having symptoms after being gluten-free for almost a month.  I don't know if it's still the healing process or if I am getting CC.  Let me give a little history and hopefully someone can help.  Before my biopsy I had sever abdominal pain, belly burning all the time, chronic diarrhea (15-20 times a day), extreme exhaustion, unexplained body aches.   After biopsy found out I have Celiac plus Microscopic Colitis.  My dr then ordered blood work Celiac Panel, I get the results next week when I see him.  The day after my blood work I started my GFD.  My pain is lower most days I would say around 2-4 before it was 10+, only going to bathroom 3-6 times a day, but still feel run down, body aches not as bad, once in awhile still have belly burning like this morning for instance.  I am very careful in preparing my food.  All my gluten-free food is separate from gluten food.  I do all my own cooking.  I want to share my process to see if I am overlooking something and getting CC.  For starters I live with my husband and his parents and I am the only one on GFD.  Before touching food I clean down all counters and stove.  I use all glass cookware however it is shared by everyone in the house, but I pre-wash before using.  We have a dishwasher so all dishes and cooking utensils go in there.  I wash my hands a million times when handling food.   I do have my own cutting board and colander.  I never cook my food while others are cooking theirs.     I can feel a difference in my body but I wonder if I am getting CC because some days my symptoms are worse then others.  Any advise will be greatly appreciated.  

I'm 8 months in, still having lots of troubles with diarrhea and loose bowels, stomach aches come and go now, at least they are not permanent! I share kitchenware too for occasional gluten foods, but really they are very occasional now... it took me 3 months to decide to 'mostly' ban gluten in my house... i couldn't cope from the stress of cc issues and basically just worrying about it every day!

I have seen improvement in other things, like neuropathy, migraines, skin & teeth condition, energy levels etc... 

The biggest lesson to learn, and perhaps one of the hardest for me... Patience and more patience... I reckon it took us all a looooong time to get so ill... It could take a while to get health back...  If there is ANY way of limiting gluten in the kitchen... do it! Even if you ask for one surface top to be yours only. It'll help. Stay strong! Get well soon :)

0

Share this post


Link to post
Share on other sites

It took me 6 months to start to see improvement and remission of bowel symptoms and nearly 15 months to turn a permanent corner.

 

This is not to say you will not heal faster, ok? It just sometimes takes (older) people longer because of extensive damage.

 

Do not despair, hon.  One month is just the beginning. You're doing everything RIGHT from what you describe here! :)

 

My celiac friend, Sherry who also has microscopic colitis benefited GREATLY from taking broad spectrum probiotics.(the MC developed after long doses of antibiotics) and this straightened out her gut flora. She is not living in the bathroom anymore.

 

I had the same situation and I had no good gut bacteria upon testing after my DX (this is nearly impossible, they told me)

probiotics made me right as rain.

 

It could help you, too. It certainly can't hurt. Just a suggestion.

Hang in there. Every day is a healing day.

1

Share this post


Link to post
Share on other sites

niese....1 month is not nearly enough time to see resolution of symptoms, plus you have the added problem of Microscopic Colitis.  This occurs often with Celiac Disease.  The hallmark of MC is diarrhea and it takes a long time for this to resolve sometimes.  I know people with MC and they told me it took months of using an anti-diarrheal to see results.  Your whole intestinal tract is inflammed, in your case, and that is going to make recovery slower.

 

I would not cut out other gluten-free grains for now because they provide nutrients (if done correctly) and you do not know if you need to. When first diagnosed, go gluten-free and maybe dairy free at first.  If you cut out too much, it will make it harder to pinpoint the culprit or if it is just lots of inflammation.  If your weight is a problem (low) from all that diarrhea, then I would eat some grains to keep weight on.  Having both of these issues may make for a longer recovery so you may have to be more patient.  Do they have you on an anti-diarrheal?  You should be taking one because when you have MC, your body cannot pull water from your waste as your large intestine is too inflammed and the diarrhea will continue.  I am so sorry you are feeling poorly but it will get better, I promise.  It sounds like you are trying hard to not cc yourself and your system sounds good so I really think it's a question of time with recovery.

Thank you for the info, I figured it was prob still the healing process.  Since I have a double whammy large and small intestine issues ur right I just need ride this out.  I can say yesterday was the first time in 2 months I was pain free, today different story but nothing I can't handle.  As far as the diarrhea its now just very loose BM down to 2-4 times day verses 15-20 times of watery diarrhea so looks like I am headed in the right direction.  I have started to notice alot of my symptoms are getting less.  

1

Share this post


Link to post
Share on other sites

You did not cause any issue, niese.  Don't worry about it!

 

You do have a seperate toaster, don't you?  That's a biggie..... ;)

No seperate toaster yet but then again I haven't had bread in over 2 months, refuse to pay those high prices and I haven't had the energy to bake but when I do yes I will be getting one.  My thought is to get a toaster oven however I just know it will be used for gluten food but I figured its easier to clean it out before I use it, any thoughts on that

0

Share this post


Link to post
Share on other sites

It took me 6 months to start to see improvement and remission of bowel symptoms and nearly 15 months to turn a permanent corner.

 

This is not to say you will not heal faster, ok? It just sometimes takes (older) people longer because of extensive damage.

 

Do not despair, hon.  One month is just the beginning. You're doing everything RIGHT from what you describe here! :)

 

My celiac friend, Sherry who also has microscopic colitis benefited GREATLY from taking broad spectrum probiotics.(the MC developed after long doses of antibiotics) and this straightened out her gut flora. She is not living in the bathroom anymore.

 

I had the same situation and I had no good gut bacteria upon testing after my DX (this is nearly impossible, they told me)

probiotics made me right as rain.

 

It could help you, too. It certainly can't hurt. Just a suggestion.

Hang in there. Every day is a healing day.

thank you, I haven't started a probiotic but I am looking into that it seems I really need.  

0

Share this post


Link to post
Share on other sites

thank you, I haven't started a probiotic but I am looking into that it seems I really need.  

 

 

That friend I mentioned above also had C.difficile and after taking all the antibiotics, then the MC raged and she was a mess. My intestinal tract was inflamed from mouth to rectum and I believe the probiotics helped reduce the inflammation and get the bowels regulated. I had bowel issues for my entire life. Not any more.

Again, just a suggestion.

 

Maybe this will shed more light?

 

 

http://thefooddoc.com/probiotic_facts

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,641
    • Total Posts
      921,558
  • Topics

  • Posts

    • They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)
    • Gracey, It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.   So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.   Hugs!  
    • I don't do grieving, bad enough for something that's been taken away in the past but to know my future is pretty much gone now just feels too much. The only time I've forgot about the unfolding nightmare was during my hour or so of sport so need to cling onto that at the moment or I fear going to a very dark place indeed. Yup that SCD site is terrifying, still can't make up my mind if they're giving out useful information to genuinely help people or using scare tactics to sell their books etc. 
    • I agree with all the advice you have been given.  It is excellent!   I just want to add that things will get better.  There is a huge grieving process to go through.  Do not fight it.  You have a right to grieve as your health and lifestyle will change, but you will adapt!  Exercise gently until you feel a bit better.  There is plenty of time to exercise hard later.  Taken this advice from a gal who just rode 40 miles (no biggie you say) this morning  on her bike through the Santa Ana winds (better known as the Devil's winds!).  But I am three years into my recovery.  I took it easy the first six months because I was anemic.  I teach few exercise classes, bike, swim and run and I am in my 50's.   The SCD website?  It can scare the (bleep) out of you.  There was one point that I took from the site and that was to stick to whole nourishing foods.  No rocket science -- just common sense.    
    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... The doctors didn't diagnose this at all, Google did. If I trusted in the health professionals I'd be blaming the symptoms all on stress and having counselling for it whilst the fire raged on inside me due to a clinical condition they'd missed. Just glad one of doctors agreed to run the test on second time of asking to keep me quiet as much as anything. Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. In the nicest possible way the vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually. With the biopsy and gluten from what I read the villi take a long time to heal up so they'd still see that. With the blood test result as definitive as it was surely the disease is pretty much confirmed? How can it heal enough for non eating gluten to throw a biopsy result yet on the flip side take over a year to heal (that sounds like the best case scenario time-wise from what I've read). Not suggesting anyone is wrong for one second but need to understand how that works with what's going on inside to make any sense of this situation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,644
    • Most Online
      3,093

    Newest Member
    Jross69
    Joined