Am I Still Healing Or Is It Cc

[niese]

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.  

 

  

[funkflex]

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.

[1desperateladysaved]

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

[niese]

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

[niese]

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?

[dilettantesteph]

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.

[pricklypear1971]

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.

[niese]

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

[nvsmom]

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

[niese]

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. 

[Lori S.]

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!

[dilettantesteph]

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

 

There is no evidence for that: Open Original Shared Link

[1desperateladysaved]

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

[nvsmom]

There is no evidence for that: Open Original Shared Link

 

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.

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

[dilettantesteph]

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.

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

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.

[Gemini]

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.

[niese]

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.

[Gemini]

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.

[Gemini]

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.....

[designerstubble]

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

[IrishHeart]

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.

[niese]

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.  

[niese]

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

[niese]

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.  

[IrishHeart]

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?

 

 

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