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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 FREE Celiac.com 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 Celiac.com Store.

Is There An 'average' Recovery Time?
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I was finally diagnosed with celiac disease on Feb. 3rd, 2010. To sum up my sad story I started getting headaches at age 7, but it was attributed to 'being too emotional'. Many other symptoms came and went over my teen and young adult years but nothing really terrible; I had a fairly normal life. Then at age 27 I became pregnant with my second child and was so ill I could hardly get out of bed for months. I slowly recovered over the next four years but never to my previous level of health. However I was told many times that there was nothing wrong with me and that it was all in my head. Maybe it was, because headaches continued to be a major problem!

For the last 10 years I just seemed to be going downhill until I could no longer work (or do much of anything) as of last April. The headaches were more or less continuous, I had bone pain, itchy skin rashes, depression, insomnia, asthma, and a whole bunch of other symptoms that seemed minor but together were enough to drive anyone nuts. I was at last given the blood test for celiac in October 2009 and then had to wait almost 4 months for the biopsy. (I'm in Canada...)

So as far as I know I've been totally gluten free for 11 weeks now, except for the amitriptyline my doctor prescribed that is not gluten-free. I had some of the medication left over from a few years ago so took a total of 5 pills (25 MG each) before going to get the new prescription filled and finding out that amitriptyline isn't safe. Those 5 pills together are about the size of a large pea, but I guess there was enough gluten in them to give me a 3 day, very bad, continuous headache and a lovely, lingering rash on both elbows.

Anyway what I need to know is if there is an 'average' recovery time once gluten free? When I saw my doc two weeks ago, he said that I should have recovered after one month and so I MUST HAVE DECIDED NOT TO GET BETTER. (Yup, my husband was there and heard it too.) I'm no doctor but surely this is an individual thing? So I would love to know the amount of time some of you folks took to recover, especially if you did take more than one month.

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your doc is a total ass. Some stuff took months to go away for me.

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Recovery time varies greatly from person to person. Factors include the age of the person, the length of time from onset to diagnosis, and the degree of damage to the villi. In my own case, I noticed some improvement within a week, but symptoms continued for 3-4 months. My villi were severely damaged.

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I second that sentiment, your doctor is an ass. :angry:

I've been gluten free since last summer and soy free since December and I'm still recovering and still trying to narrow down what other foods may be giving me trouble. While I feel so much better than I did before this is a process, an ebb and flow of progress and set backs.

Recovery time is so individual. There's another thread here that talks about how long you're down and out (binned I think was the term used) after getting glutened and you can see the responses vary person to person.

Do you have the option of seeing a different doctor? Perhaps one that specializes in celiac? Even if the wait time is long it will be worth it. I'm in the states and it took a good 5-6 months to see my new GI doc who specializes in celiac. It was well worth that wait to see someone is capable and qualified to validate my illness. You mean it's not all in my head? Wow! Thanks!

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I am non-celiac gluten intolerant.

I started feeling better right away, but not all the way. I go to the University of Chicago Celiac Center, and they explained to me that it can take many, many months for my gliadin level to come down, especially at my age (56). It is normal for some people to take a year or two to heal.

My gliadin level remains high -- after going gluten-free for many weeks, it actually went UP instead of down, which is also normal for many.

I will get tested again in a month or so and we'll see how it goes.

Healing, of course, does NOT mean you can eat gluten again, as I'm sure you already know, but I am mentioning it because there are a lot of folks out there who have uneducated doctors who tell them that, if they're very strick, once they're healed they can try eating gluten again. Just last week I spoke to a new member of my GIG group who told me her doctor had given her that advice. Augh!

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My dr said it depends on the stage, and with that could take 1 to 4 yrs to "fully" recover.

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My dr said it depends on the stage, and with that could take 1 to 4 yrs to "fully" recover.

I'm not a doctor, but I have read countless stories in the five years I've been on the board. I think this is accurate. Even if your symptoms seem to have completely disappeared, your body may still be healing hidden damage.

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I'm not a doctor, but I have read countless stories in the five years I've been on the board. I think this is accurate. Even if your symptoms seem to have completely disappeared, your body may still be healing hidden damage.

Thanks so much for the support and information. It's given me a lot to think about and a course of action; finding a more informed doctor!

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I would agree with everyone else that it varies for each person. I have been gluten free for 7 months and still am far from feeling 100%. I have seen many improvements such as less headaches, getting through the day without anti-diarrhea pills, less nausea, etc. I recently eliminated dairy products and am still trying to figure out what other foods might be making me react. I think it takes a lot of trial and error to figure our new bodies out!

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MoonWillow - Hi everyone! I had no idea that it could take so long to heal. I have been completely gluten-free for two months and I am still having symptoms. Mind you, I never got properly diagnosed, but I am 99.9% sure gluten has been my problem for years. I went gluten-free several years ago and felt great and much healthier than I had in a long time. Then 6 years ago, when I was pregnant with my son, I was so hungry all the time that I went back to eating bread products. What a mistake!!!! Even my son suffered and the doctors could not figure it out. I asked his specialist about gluten, but he brushed it off. I should have listened to my instincts. I only wish I had stayed off the gluten to begin with. Now the healing process is taking so long and I am still quite tired and malnourished. Some days are good though!! I am still in shock that it can take over a year to heal. Well, thanks to everyone for sharing your stories and informing me of the realities of this awful disease. BTW, my son has been gluten-free right along with me and he is doing great!!!

I would agree with everyone else that it varies for each person. I have been gluten free for 7 months and still am far from feeling 100%. I have seen many improvements such as less headaches, getting through the day without anti-diarrhea pills, less nausea, etc. I recently eliminated dairy products and am still trying to figure out what other foods might be making me react. I think it takes a lot of trial and error to figure our new bodies out!

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I would agree with everyone else that it varies for each person. I have been gluten free for 7 months and still am far from feeling 100%. I have seen many improvements such as less headaches, getting through the day without anti-diarrhea pills, less nausea, etc. I recently eliminated dairy products and am still trying to figure out what other foods might be making me react. I think it takes a lot of trial and error to figure our new bodies out!

Yes, so true chocolatequeen.

For me, it has been a MAJOR process of elimination (no pun intended! Ha!). Every week, I make more changes. Recently, it was going to a grain-free dog food.

Anyway, every little bit helps, thank goodness . . . and every step in the right direction is a step in the right direction.

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    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
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