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      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?  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
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Fred123

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

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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.

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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).  

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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.

 

http://celiacdisease.about.com/b/2009/06/17/when-celiac-disease-is-diagnosed-in-adulthood-intestines-dont-always-heal-completely.htm

 

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
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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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.

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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!

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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!

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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.  

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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. 

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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