Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 FREE email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity

How Long Did You Take To Be Symptom Free On Gluten Free?

8 posts in this topic

I suffered badly for 2 months prior to a blood test I had which came back equivocal for Coeliac. Unfortunately the TtG was just above normal but the Gliadin IgG was negative. However I was so keen to resolve my illness which consisted of the usual symptoms of bloating, flatulence, diarrhoea and cramps along with a few other peculiar ones like bad breath (really bad no just morning breath trust me), tongue ulcers, itchy skin and a peculiarly horrible 'hungry feeling' a lot of the time. That I quit gluten then and there and believed to notice a difference.

After 3 months I 'settled' down to just the typical symptoms of digestive problems (bloating, flatulence, diarrhoea) as well as bad breath and have as of now, 4 Months down the line from stopping gluten, remained at this point. No longer with stomach cramps, itchy skin and all those other peculiarities apart from bad breath which has remained. However what I have I feel is still significant to effect my way of life. I'm not sure if this is significant enough of an improvement to warrant the belief that I have Coeliac, surely things must have alleviated by now.

I guess my long winded question is the one that is the title, how long should it take for someone who has Coeliac to no longer experience symptoms so significant? I know it varies but just from your experience would be helpful to settle my mind as I am anxious I will not be getting better any time soon.


Any help or comments would really be appreciated and I'd be happy to give any more info.


Share this post

Link to post
Share on other sites

It took me about seven weeks to resolve digestive issues that only developed between my blood test and biopsy.  But, I already knew about my food allergies and intolerances.   Everyone is different -- it takes lots of time to heal.


Have you identified other possible intolerances?  Typically, because of intestinal damage, you temporarily can't digest milk (lactose).  


Share this post

Link to post
Share on other sites

Hi Fred,


Time to resolve symptoms and heal is extremely variable.  Up to 16 months is not unusual I believe.  That doesn't mean you won't improve over that time, but it may be a bit bumpy road too.  Symptoms may come and go.  Feeling good for a few days a month and getting sick again.  Eventually you should get to where the number of days in a month feeling good is more than the number of days feeling poorly.  Or you could just suddenly turn a corner and start feeling well all the time.  It varies an awful lot between different people.


Take a look at the tips below and try following them for a while.  It may be one or more of them will help you.  Patience with your body is very helpful when starting the gluten-free diet.  A simple diet is helpful also, as there are fewer variables to consider.


Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com

Newbie Info 101


Share this post

Link to post
Share on other sites

I feel mostly better at 14 months gluten-free. I tend to get the occassional set back for no apparent reason but it only lasts a short time rather than the old downward spiral of a few months.


I still get headaches for while on most days, and GI issues after some meals. BM's are still not great.


Bloating, gas, stomach pain after most meals, deep fatigue, arthralgias, hair loss, muscle cramps and migraines are all greatly improved.


As the others said, it can take a long time to get well. Sadly some symptoms are permanent and never improve if irrepairable damage was done. All you can do is wait and see what the gluten-free diet can do for you.


Best wishes.


Share this post

Link to post
Share on other sites

There are too many variables to put a definitive timeline on it. As others have said its wildly variable from person to person. It depends on age, how long you have been suffering from the symptoms, or maybe how long you have had silent symptoms.


Recovery depends on not just going gluten-free, but also in taking digestive enzymes, pro-biotics, having a rich and balanced diet without any processed foods and WITH excercise. Mental health has a role to play and support from loved ones contributes to recovery and well being.


Your ability to not accidentally eat gluten is a big contributor to recovery too... in the first months I was accidentally glutenating myself on average every 9 days - I would have recovered quicker had I not had accidents.Now I can go nearly 2 months between mistakes. I hope to have this up to 6 months at a time.


One thing for sure is to stick with it, paricularly if you have seen immediate benefits in the first weeks - that is a sign that gluten free must stay with you for life. 6 months should be the point where you revisit your symptoms... until then, chill out and concentrate on eating gluten free and staying healthy!


Share this post

Link to post
Share on other sites

I had some improvement almost immediately but other things took some time. Lots of ups and downs. It depends how bad off you were to start and how quickly you can adapt to the new diet. It's hard to look back for me - but it will get better for you. It takes some time to recover and heal. It took some time for my body to get back to itself. Its probably in the months for some symptoms to get better. (So if you are following the diet and still not there yet, that is normal) For me I am still not where I want to be but compared to where I was - almost hospitalized- I'm doing great. Hang in there! The first year is probably the hardest. Good luck!


Share this post

Link to post
Share on other sites

I felt an immediate huge improvement just eliminating cereal and bread.  As time went on, I kept reacting to things and I kept learning about which additional things I needed to eliminate from my diet.  I learned that I was sensitive to much lower levels of contamination than typical and I learned a lot more about what to eliminate.  After about a year I was able to be symptom free.  At 6 years now, it is still a challenge to find enough food to be able to be symptom free.  Previously safe food changes sometimes and becomes unsafe and the only way to find out is by eliminating things one at a time until I find the right one.  What a pain.  It is worth all the effort though.  I'm doing much better.  


Share this post

Link to post
Share on other sites

I'm not a diagnosed with Celiac but believe I am gluten sensitive.


I felt a difference in a matter of days in regards to headaches, muscle tension & stiffness in my back, stomach rumbling, flatulence, loose stool (love saying that). I gave up eating wheat in an attempt to lose weight, it didnt occur to me that it was causing so much many of 'small' health related problems. I gave it up on sunday night and on thursday I realised "why the h*ll do I feel so good and so awake???" lol

Joint pain lasted longer and got a bit worse actually before it got better. It was gone after about a month or so.


Since it takes such a short time to feel better I am conviced I'm only sensitive to it, rather than Celiac. 


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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • turkey
      Turkey is gluten-free as long as it is not stuffed. You can make a good gluten-free stuffing using gluten-free bread. Dry the bread first and add what ever spices or veggies you wish, but cook it in a separate baking dish because stuffing the bird with it can cause bacteria to breed. And gravy must be thickened with corn starch or potato starch instead of wheat flour.
    • turkey
      so you can't even cook without stuffing inside turkey and not get gluten? Sorry I'm not familiar with turkey and wondering if I can have it while rest of family gets stuffing? In other words is turkey gluten free?
    • Numbness, Tingling in limbs & Joint Aches
      Hi Ender, Although you didn't get a complete thyroid panel, from what I see you are hypothyroid.  Most Dr's only care about TSH and yes yours is in the range, but when mine is that high I get terrible joint aches.  I feel best with mine around 1.  Your free T4 isn't just a tad low...most people feel best with it around 50% of the range.  I think you could benefit from some thyroid replacement medication.  You should also get a full thyroid addition to what you've had done a free T3, TPOAB and TgAb.   The last 2 are antibody tests.  Hashimotos is found fairly frequently with celiac.   Low vitamin D can also cause aches.  It would be really good to have your levels checked again.  Until you are healed you may not absorb it well enough so it's good to keep supplementing.  It took me a year and a half gluten free to get mine to an acceptable level for my Dr and he's keeping me on 2000 daily for maintenence.  For the numbness and tingling my Dr had me add magnesium as I was having horrible tingling in my feet and my B12 was good.  I have to say it has helped a lot. I hope you are able to get this figured out...I would definitely start with a complete thyroid panel and recheck of Vitamin D.  Here's a bit of reading on thyroid stuff if you have time.  Hugs!
    • Positive & Increasing TTG -- questions re: testing & history
      I'm a 31-year-old high school teacher (currently on disability) who has been dealing with 4 years of major gastrointestinal problems, which resulted in major surgery for a rectal prolapse & redundant colon last August, prior to which I had lost about 20 pounds. The source of all my gas, bloating, distention & diarrhea has remained basically unexplained though ("lets trust the surgery resolves your obstructed defecation and in turn your gas... d'oh it made both  worse"  ) , and my symptoms have only gotten significantly more severe since surgery. I'm facing a permanent ostomy. I've also, for the first time in a lonnng time, been eating a lot of gluten every day... primarily out of depression and (misguided?) attempts to gain weight and keep stool soft. I've been typically slightly underweight for 10+ years. Suffered anorexia for a period 10 years ago, and since recovering have "naturally" maintained a low weight and low-wheat lifestyle (I've always been put off by heavy wheat items like bread, sandwiches & pasta, *shrug*). As a child I had crazy severe & unexplained constipation issues. I've also had strong teeth discoloration & marked enamel defects (& two missing adult teeth(?)) since childhood. Depression & anxiety have been longterm issues. I have osteoperosis, which was perviously explained by me being anorexic from 19-22. Everything changed 4 years ago upon the onset of all my (severe) classic-IBS symptoms (gas/bloat/d+c). On a low-gluten diet, TTG bloodwork came back "low-positive" repeatedly. A biopsy showed no damage, but my gluten intake at the time was limited to 2 cookies a day, or occasionally 2 cookies and a piece of pizza. Would this have been enough to show damage? I trialled going gluten-free for a few months, and didn't find a ton of relief... so assumed I was just FODMAP intolerant... however I was eating lots of oats and lactose that whole time, which I have subsequently identified as major triggers... not to mention just lots of gluten-free junk food. Wheat was obviously a significant gas trigger since this hit, but that seems typical for gut illness in general. Since my major surgery and the continuation and worsening of symptoms, I've connected with an internist who has again and again pushed me towards eating wheat as a method towards weight gain and healthy non-anxious eating. I also found that a high-wheat diet would provide the proper consistency (i.e. very loose diarrhea every day) to allow colorectal function (the surgery I had went very poorly and caused major obstructed defecation). I have not had success gaining weight, and have found my digestive system feeling assaulted like never before 24/7 by bloating, gas and discomfort, despite a relatively low-residue diet and constant elimination. My appetite has never ever been worse. I just had a fourth TTG test, and after this high-gluten diet I am now testing POSITIVE as opposed to BORDERLINE. Questions: 1) I suspect my first biopsy's gluten challenge wasn't quite heavy enough in terms of gluten content (couple cookies a day). Thoughts? 2) Could being underweight alone cause an elevated TTG? How about simply having colorectal surgery? "IBS" or the supposedly non-pathogenic gut bacteria blastocystis hominis which I've been diagnosed with? I haven't been diagnosed with any other autoimmune condition, and I'm so confused. So far everyones just shoving the TTG off on IBS/anorexia, which doesn't make sense to me at all. 3) I really don't know what to do right now. I'm 20 pounds underweight, in digestive hell, with most of my medical support still suspecting I'm merely acting anorexic. I most assuredly am not. They want to put me on a tube. I would really like to get off the gluten in order to ease my system and gain weight, as I'm clearly reacting to it and have been deluding myself for the past year trying to recover from this surgery, but I'd also *REALLY* like some diagnostic confirmation so my doctors & family all stop looking at me like I'm crazy, and that so I can act with appropriate caution/freedom in my dietary future. 4) Do my childhood experiences line up with any celiac sufferers? I've heard about enamel defects, but missing teeth or crazy constipation? Obviously osteoperosis could connect, and doesn't *really* line up with my anorexia considering I was already fully grown. 5) Is there any way to get EMA/HLA blood tests done in Canada (BC)??? It's really frustrating that my only chance for any confirmation is waiting months and months here for another biopsy, especially considering how dire the need to improve my digestion is ASAP. I imagine if I could get an EMA test & it came back positive I would just take that as my confirmation and be able to move on with confidence here. 6) Is it common for celiac sufferers to find themselves reacting to FODMAPS and/or histamines in foods while they're  still maintaining a gluten-filled diet? Gluten definitely isn't my *only* trigger right now, and that's probably a primary reason I haven't been led to eliminate it at. Sorry for all the talk & questions, but I'm in an incredibly challenging place right now, my head is just swimming and swimming, and any thoughts would be greatly appreciated!   Bloodwork Current, after six months of a heavy-gluten diet = Tissue Transglutaminase Ab IgA ---18.0 ---- <12.0 U/mL = normal
      POSITIVE -Probable celiac disease but this should be confirmed with a small bowel biopsy. [Tested by a multiplex flow immunoassay
      (BioPlex) method.] 

      6 months ago = Tissue Transglutaminase Ab IgA ---13.0 ---- <12.0 U/mL = normal
      BORDERLINE - Borderline anti-tTG. Suggest repeat if clinically indicated.Consider the possibility of celiac disease - a small bowel biopsy may be required. [Tested by a multiplex flow immunoassay
      (BioPlex) method.]

      2012, prior to negative biopsy = Tissue Transglutaminase Ab IgA ---24.0 ---- <20.0 RU/mL = normal
      Weak positive anti-TTG. Consider the possibility of celiac disease - a small bowel biopsy may be required.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Members