Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Rate this topic

Recommended Posts

OK guys, so I'm a newer member here, and I've seen a few posts here and there regarding this topic, but I wanted to put it up for discussion here in one place...

I've been gluten free for one week at this point. I have not really seen any major changes yet. I feel pretty good and maybe some of the brain fog has lifted. I haven't broken out in any skin rashes in this time. But what I can say for certain is that I haven't noticed a huge change in the gastro symptoms. I am still using the bathroom a few times of days, sometimes it's urgent. I still get a little bloaty and gassy in the evenings. Those have always been my biggest symptoms. I don't want to be outwardly graphic, but where else can I be totally honest about this stuff?

I was diagnosed with Crohn's disease about 14 years ago, and was medicated for that during this time period. Now we are fairly certain that I've had Celiac instead the whole time. If that is the case, there is probably significant damage to my small intestine. Those poor little villi have a lot of healing to do.

So here is my question... when can I expect to start seeing real changes in my day-to-day symptoms? I've seen some people posting about how as soon as they stop eating gluten it's like they've stepped into a brand new body within a day or two. Now after a week, I am a bit disappointed to not see more positive results. I would say that it could take up to a month for me to really start seeing the good in this, but I just wanted to put the question out there.

What have been all of your experiences in this area?

Thanks again guys... this is a wonderful forum for us to be sharing such valuable information.

Share this post


Link to post
Share on other sites

Hi and welcome. I think the consensus is 18 months for most people to heal years of damage. Aren't you so glad you asked :lol:

Sorry, couldn't resist. It does tend to take awhile because there are usually secondary issues like vitamin and mineral deficiencies and things like arthritis and what not caused by the Celiac. I saw a difference in the gastro issues after a few weeks, but building up my iron and B vitamin reserves took nearly a year.

Once I went gluten-free I realized there were other allergies at work and I've been weeding stuff out of my diet ever since. The neurological or psychological issues that resulted from the gluten have taken longer to resolve, and after a year gluten free most of those are starting to fade. I still have bad days there, but they're much fewer and farther between. I also have nails that don't break and splinter now.

The way I look at it, my diet before was providing a constant source of gluten, meal after meal, day after day. Once I cut all the gluten out I was able to figure out what else was bothering me because I don't eat most other things daily. It was like turning off the white noise machine and suddenly being able to hear everything else my body was saying about what I was feeding it.

OK guys, so I'm a newer member here, and I've seen a few posts here and there regarding this topic, but I wanted to put it up for discussion here in one place...

I've been gluten free for one week at this point. I have not really seen any major changes yet. I feel pretty good and maybe some of the brain fog has lifted. I haven't broken out in any skin rashes in this time. But what I can say for certain is that I haven't noticed a huge change in the gastro symptoms. I am still using the bathroom a few times of days, sometimes it's urgent. I still get a little bloaty and gassy in the evenings. Those have always been my biggest symptoms. I don't want to be outwardly graphic, but where else can I be totally honest about this stuff?

I was diagnosed with Crohn's disease about 14 years ago, and was medicated for that during this time period. Now we are fairly certain that I've had Celiac instead the whole time. If that is the case, there is probably significant damage to my small intestine. Those poor little villi have a lot of healing to do.

So here is my question... when can I expect to start seeing real changes in my day-to-day symptoms? I've seen some people posting about how as soon as they stop eating gluten it's like they've stepped into a brand new body within a day or two. Now after a week, I am a bit disappointed to not see more positive results. I would say that it could take up to a month for me to really start seeing the good in this, but I just wanted to put the question out there.

What have been all of your experiences in this area?

Thanks again guys... this is a wonderful forum for us to be sharing such valuable information.

Share this post


Link to post
Share on other sites

i had the exact querry a week ago too and i know all our bodies will take different lengths of times to heal particular things and in particular ways, I just want to let you know that going gluten free will def see positive results. I've bee gluten free now for only 3 and half weeks and the past week my gastro symptons have really eased off and more or less stablised (no more 'D', running to the loo 6 times a day, stomach aches) I'm touching wood as its too good to be true but i can honestly say i'm feeling like a new person. Before my diagnosis, I was off work feelin totally burnt out and had suffered for 6 months if not more but i was still eating gluten (unknown to be the damage it was doing). Going gluten free will def help your symptons and your villi will heal in time. It may just take a bit longer if you've suffered for a few years but it'll happen. My best wishes

Share this post


Link to post
Share on other sites

Thanks so much for your feedback and for sharing your experiences.

I wanted to bump up this thread to see if anyone else has some comments for me. I still haven't noticed much of a change and i'm getting impatient. however, it is still just short of 2 weeks, so i need to be more patient.

Share this post


Link to post
Share on other sites
OK guys, so I'm a newer member here, and I've seen a few posts here and there regarding this topic, but I wanted to put it up for discussion here in one place...

I've been gluten free for one week at this point. I have not really seen any major changes yet. I feel pretty good and maybe some of the brain fog has lifted. I haven't broken out in any skin rashes in this time. But what I can say for certain is that I haven't noticed a huge change in the gastro symptoms. I am still using the bathroom a few times of days, sometimes it's urgent. I still get a little bloaty and gassy in the evenings. Those have always been my biggest symptoms. I don't want to be outwardly graphic, but where else can I be totally honest about this stuff?

I was diagnosed with Crohn's disease about 14 years ago, and was medicated for that during this time period. Now we are fairly certain that I've had Celiac instead the whole time. If that is the case, there is probably significant damage to my small intestine. Those poor little villi have a lot of healing to do.

So here is my question... when can I expect to start seeing real changes in my day-to-day symptoms? I've seen some people posting about how as soon as they stop eating gluten it's like they've stepped into a brand new body within a day or two. Now after a week, I am a bit disappointed to not see more positive results. I would say that it could take up to a month for me to really start seeing the good in this, but I just wanted to put the question out there.

What have been all of your experiences in this area?

Thanks again guys... this is a wonderful forum for us to be sharing such valuable information.

Gotta say - for my hubby it was a good 6 months before he see any improvement AND then some.

Of course there are some that feel instantly better - but not all I'm afraid :(

With my hubby I'm sure it's because he was a 'late diagnosed' (40 yrs) and there was ALOT of damage to undo.

Be patient!!! :)

Share this post


Link to post
Share on other sites

I was diagnosed in October and was on the diet for six weeks until they did the biopsy and it came back negative. During that time I kept waiting for the diarrhea, nausea and dry heaves, cramping and bloating to stop, but it never stopped. I was convinced the diet was not working and with the Biopsy being negative I called the Dr. that did the Biopsy and he said "Enjoy your Thanksgiving dinner with your family as you DO NOT have Celiac Disease."

So I went off the diet and within a couple of days my insides went into spasms and cramping that I can only describe as "devastating". My stomach literally sounded like two people arguing all day and all night long. There were noises coming from my stomach that sounded like a wounded animal.

That Gluten Free diet WAS working after all,,,,, I just wasn't patient enough.

When I went back to the Dr that origionally diagnosed me with Celiac, I told him what happened and he told me that the second battery of blood work had come back, and shows that irrefutably I have Celiac Disease.

So I have been back on the diet for about three weeks now and instead of going 20 to 25 times with a gallon of pure liquid coming out in one second, I'm down to 10 to 15 times a day with much smaller amounts of "oatmeal" like "D".

Also the severe cramping, bloating and abdominal pain is almost tolerable.

So YES the Gluten free diet sure works, but it's far from a miracle cure. From what I have read from some of the GREAT people on this site is "it's a process, and you have to have patience".

I hope this helps,,,,, from someone that understands what you are going through,,,,, and I apologize for being so graphic about the "D".

I hope you feel better soon.

Joe Hoffman

Share this post


Link to post
Share on other sites

I would like to add something here. Gluten is very tricky and it can hide everywhere. It would certainly expedite you healing time if you eliminate all possible exposure to gluten. This is a disease where the severity of the disease correlates with the exposure. I have found it almost impossible to be 100% successful in the beginning because there is just too much to learn with too many traps.

Stay at home and cook for yourself if possible. Keep your meals simple. Go dairy free until some healing has taken place. Make sure that your cookware is not scratched, new wooded spoons, new toaster and colander. Check your toiletries and your medications (vitamins) as they can hide hidden gluten....anything that can get into your mouth.

I recall it took me at least six months before I was comfortable to travel with confidence out of town and away from my designated stops. Two and a half years later, I consider myself in remission and life is good.

It wasn't always easy, but there is a light at the end of the tunnel.

Share this post


Link to post
Share on other sites

I agree completely with what momma goose said.

I was ill for about 20 years before being diagnosed. I noticed small changes at the beginning of the diet, but it was more like a rollercoaster than a consistant healing.

It took me a good 2 years before I considered myself to be in remission. I sort of turned a corner after about 18 months. Hang in there--it's worth it :)

Share this post


Link to post
Share on other sites

thanks guys! so just to respond to concerns, i'm fairly certain that i've eliminated all gluten from my surroundings. but hey, it's only been two weeks. i have prepared all meals for myself at home, including lunch at work and dinner. i've bought tons of gluten free snacks and have been munching happily on carrots and apples like a rabbit (which is hilarious b/c i am thin and pretty fit, and everyone at work is looking at me funny, hahaha, like why is he dieting???)

as far as home.... i've checked ALL products for hidden sources... i used paul mitchell tea tree shampoo and that had wheat in it, so i tossed it. all toothpastes, lotions, deodorants, soaps and shampoos currently being used are safe. i take centrum and nature's made vitamins which are both gluten free. i take nexium and pentasa, and both are gluten free. i have purchased new wooden spoons and a new saucepan for cooking my cream of rice cereal in the morning. i have a toaster oven and i've removed the rack and scrubbed the poop out of it with brillo. i have NOT however, purchased all new pots and pans and colanders. i've cleaned all pretty thoroughly though, and i didn't cook a lot of gluteny items in the previously, except for the one saucepan that i did replace. my frying pans had been mainly used for eggs in the morning and to sautee chicken and pork chops, which i am still currently doing. any stainless steel pans i feel safe with as long as i've cleaned them thoroughly with brillo. i doubt that any contamination from those sources would be hindering my progress. i think it's just that i have 14 years + of damage and my villi are finally awakening.

i have been using dairy sparingly, but i've thought about eliminating it for a while. but then i can't have my morning coffee with coffee mate!!!! lol. there are few joys that i have left with removing gluten and my coffee is one of them. and i just got the grainless baker gluten-free anisette biscotti..... SOOO yummy to dip in my coffee. just a side note.

thanks again for all of your stories. i am confident that this will become a very "doable" way of life. i'm traveling to key west for new year though, and that will be my first challenge away from home. i'm bringing lots of larabars and other gluten-free treats, but i think i'll be safe with grilled seafood and meats and plain salads.

:) joe

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 20, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
What are your iron results?  Was ferritin (iron stores) taken?  Are you actually anemic (low hemoglobin)?  The results you posted are your Immunoglobulins.  Looks like your IgE is high, but then it is Spring and allergy season is supposed to be pretty bad this year (at least in the US).  What riggers your allergies (e.g. cats, horses, mold, etc.)? Have other autoimmune issues been ruled out that could cause tendinitis or vertigo?    
  • Blog Entries

  • ×
    ×
    • Create New...