• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Am I Still Healing Or Is It Cc
0

Rate this topic

42 posts in this topic

Recommended Posts

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.  

 

  

Share this post


Link to post
Share on other sites
Ads by Google:
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.

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

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

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?

Share this post


Link to post
Share on other sites
Ads by Google:


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.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


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

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. 

Share this post


Link to post
Share on other sites


Ads by Google:


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!

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

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/

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.

Share this post


Link to post
Share on other sites


Ads by Google:


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.

  • Upvote 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.

  • Upvote 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.

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..... ;)

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 :)

Share this post


Link to post
Share on other sites


Ads by Google:


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.

  • Upvote 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.  

  • Upvote 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

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.  

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

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
      108,139
    • Total Posts
      939,873
  • Member Statistics

    • Total Members
      66,123
    • Most Online
      3,093

    Newest Member
    TracyDG
    Joined
  • Popular Now

  • Topics

  • Posts

    • I think she wants you to be strictly gluten free and heal.  Not give you things to patch up the damage you are causing by not getting your antibodies down and healing.   I am sure  she expected that you would take your diagnosis seriously and eat gluten-free.  4 months after your diagnosis, your antibodies would have gone down better.  But you weren't eating gluten free.  Eat gluten free. Take your supplements.  Read about the correct way to get your iron up - B12, vitamin C, don't take with calcium foods, etc  
    • Hello! I'm hoping to get some advice from y'all about iron IV infusions. First, some background: I was diagnosed with celiac disease at the beginning of June this year (2017).  I had labs done in March and my serum ferritin was 5 ng/mL. Hgb was 11.1, which isn't all that low, but is still flagged as below the normal range. I took 325 mg ferrous gluconate supplements daily for two months, and when my ferritin was rechecked, it was down to 4. The doctor ordered a celiac antibody panel and all of the levels were high. Confirmed with endoscopy at the end of May. A month later, I left for a 2-month study abroad program in France (aka the land of bread and pastries). After returning to the US at the beginning of August, I finally went gluten-free.  At the beginning of September, I returned to my University. Almost immediately, I realized I was really tired and was having a hard time making it through the day without a nap. I finally had a follow-up GI appointment around September 20th with the PA of the doctor who performed my endoscopy (not the same doctor from March). During the appointment, I asked her what we would do if my labs showed an iron-defiency. She told me that we would either do oral supplements or IV infusions, depending on whether or not she thought I'd absorb the supplements. When the lab results came in on the online patient portal, she made no comment on any of the iron-related results, just sent me a message that my antibody levels were still quite high, that I needed to keep up a strict gluten-free diet, and that we would recheck everything in six months. My ferritin was down to 3, Hgb was 10.3, iron saturation 6%, etc.  I was concerned about those results, so I called the PA's nurse and left a voicemail asking what the plan was for getting those levels up and got a portal message back from the PA saying that my hemoglobin was slightly low and will get better over time as I cut out all the gluten in my diet, but that I can start taking supplements if I want to speed up the process. I know that the Hgb still isn't that low, but it seems like the ferritin level is more serious. I went back for an appointment with the doctor who first found the iron-deficiency back in the spring and she seemed a lot more concerned. When I brought up IV iron therapy, she seemed to think it was a good idea. However, she's a primary care physician through my school's clinic, so she can't give me infusions. She called the PA with the intention of finding out whether or not she would change her mind about infusions, and had no luck. Interestingly, the PA's nurse informed her that they don't expect me to be able to absorb the supplements right away, and would consider IV infusions after I've been gluten-free for another six months.  I've done a bit of research on the IV infusions and it seems like I fit the criteria. Based on my antibody levels, I'm clearly not able to absorb iron any better than back in the spring, when the oral supplements did nothing for me. I understand that once my intestines heal more, I'll start being able to absorb iron better and should be able to boost my levels with oral supplements. However, I feel like I need a solution that will help me much sooner. I have a very demanding course load this semester and I'm constantly exhausted. I fall asleep doing homework at least twice a week. My grades are suffering, my mental health is suffering, and my relationships are being tested. I still don't have an explanation for why the PA doesn't think IV infusions are appropriate and I don't understand it. I really don't know what to do next because I'm afraid if I try to talk to the PA again, she'll get annoyed. I know that was super long, so for anyone still reading, thank you for bearing with me!! Now for the questions: 1. Do you think iron IV infusions in the near future would be a reasonable treatment for me? 2. Do you have any advice on how to make them happen? And if you have any other advice that's relevant to my situation, I'd love to hear it!   Thanks so much, Sofie
    • I can tell you that last week, I picked up and delivered 30 boxes of Costco pizza to a hungry marching band.  I lived!  Seriously, just wash your hands after handling.  Ennis is right.  Do not take a big sniff of the boxes in case there is any residual flour.  It took days for my van to air out and I did lay some old beach towels to protect my interior as normally, gluten is not allowed!  
    • I just found a nicer compilation of her work, much easier to understand. She also makes the connection between Sleep apnea, vit. D and the gut. Maybe you will enjoy it too:  https://www.vitamindwiki.com/Handout+on+Vitamin+D+(Hormone+D)+and+sleep+-+Gominak+2012 She mentions autoimmune diseases in general but not Celiacs. But I think it all connects and makes sense.  You are right, no matter how a post is, someone might read it. I did. 
    • i looooove nuts.com.  i've already ordered all my nuts, etc, for holiday baking from them.  if you order (i think it's 65 bucks) enough, you get free shipping.  the nuts are so pretty, not all busted up and stuff.  they send you a little sample with your order (this time it was goji berries) also, i got pepitas and sweet rice flour.  they have added alot of new products.  i highly recommend them
  • Upcoming Events