Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Healing Time?


njbeachbum

Recommended Posts

njbeachbum Explorer

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



VioletBlue Contributor

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.

amz Newbie

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

njbeachbum Explorer

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.

nikki-uk Enthusiast
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!!! :)

Joe Hoffman Rookie

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

Lisa Mentor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

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 :)

njbeachbum Explorer

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.