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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Diagnosed, Now Do I Worry About Other Stuff?
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I was diagnosed with Celiac about a month ago via blood work only.

 

I've been reading up a lot on recovery and getting a bit concerned about healing. I have scheduled follow up blood work for about 3 months from now and the doctor will review at that point. I'm also meeting with a nutritionist next week. I'm still getting bouts of diarrhea about once a week, although overall I'm starting to feel better and my BMs are looking so  much better these days for the most part.

 

Do I need to request any follow up testing in regards to cancer, or other possible problems? I didn't get the endoscopy pre-diagnosis, and I'm not adding gluten back in at this point in order to test, but should I request one down the line to confirm I'm healing? Or is a change in the ttg or DGP enough? I'm scared I could have other problems (cancer) that no one ever caught, even if it's precancerous. I'm reading all these articles on how people with celiac might never heal.  I'm 33, I just want to take all the precautions I can.

 

Also considering giving up dairy, as I'm fearful that could be the reason behind my weekly diarrhea episodes, or it could be glutening, or just plain healing, I don't know....Is it normal to get diarrhea weekly if I'm only about a month into eating gluten-free?

 

thanks in advance!

 

Ami

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Whoa!  Slow down and take it one step at a time!  You've only been gluten free for a month.  It takes awhile for your body to rid itself of the lingering antibodies (I read somewhere that the antibodies have a half-life of 3 to 4 months).  It also takes some time to heal, start absorbing nutrients again, and use those nutrients to start making all the repairs.  In my opinion, 3 months for follow-up bloodwork is asking a bit much.  I think the typical timeframe is 6 months. 

 

Still having symptoms only one month into gluten free is not uncommon.  In fact, often the symptoms get worse before they get better.  That said, dairy is a common culprit for continued issues.  You could try not eating dairy for a few days, then eat it, and see if there is a correlation with the diarrhea.  Also, make sure you are 100% gluten free.  Go through all of your food, supplements, etc. one more time - read every label carefully.  Stick to whole foods for the first 6 months or so - no processed crap.  And don't eat out either - not forever, just for the first 6 months or so.  Just so you know that you are 100% gluten-free and not getting any cross-contamination. 

 

If your symptoms don't go away significantly after 3 - 6 months, then you can pursue other tests for other possible ailments.  Yes, it's true that some people never really heal - but that's rare.  And you're way too early in the healing process to be worrying about that!

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Good Morning Ami!

 

It is still very early for you.  Take these first few months to learn how to live completely gluten free - ingesting mostly whole foods and limiting even the labeled gluten free items to treats, rather than staples.

 

Removing dairy for the first 3-6 months is a good idea.  Be sure to trial it down the road as most folks are able to tolerate it after their digestive tract has healed.

 

Testing at 3, 6 and 12 months is standard protocol...then annually thereafter -- depending on how high your antibody numbers were and other factors, it can take some time to get completing within "normal/negative" ranges.

 

Hang in there :)

 

PS...no rush, but you should have a bone scan at some point...celiac can cause early osteoporosis -- the good news is bone is replaced within the body so if you eat clean and exercise consistently the new bones will be stronger...this happened with me...my last scan wasn't perfect, but was far better than the scan at diagnosis.  Of course age and length of time you had active celiac all plays into the bone issue.

 

PSS...there is absolutely no "normal" timeline that symptoms improve or disappear -- we are all different.

Edited by GottaSki
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Ami - I did the same thing wanting to be sure to care about my body and catch problems before they snowballed. This went on far too long and I didn't want that to happen again! Stay on this lily pad for a while. It's big. In the beginning, the learning process is steep. Healing did take place although, I was unable to realize it at first. I'm 17 months into it and it's still slow progress for me but when I look backward, I can see how far I've come (which is a good ways). Make sure you go through your kitchen with a fine toothed comb. I saw more improvement without the processed foods. I also was glutened a lot eating out in the beginning and I've put that on hold (unless I feel particularly lucky/risky). I would have saved myself loads of frustration had I done that earlier on in the process.

I eliminated dairy and eventually as it became more evident, other things that bothered me. Sometimes I react to grains, sometimes I don't. That target keeps moving and so I keep it limited.

I too was frightened by what I read in the beginning. It was overwhelming.

Hang in there!

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:) Don't you wish healing would be instantaneous like every seems to think it should be?  ;)

 

There are a few things you could check. Like Lisa said, a bone density scan can be helpful for some if their disease affected their bones. Nutrient testing can help you pi-point what areas will need some help until you are better. Calcium, magnesium, iron, ferritin, B12, D, A, zinc, copper, and.... I think I'm forgetting something, anyway, those can all be checked. Hypothyroidism is more common among celiac than the general population so if you have any symptoms of hypothyroidism at all, you should be tested. TSH, free T4 and free T3, and TPO Ab are a good place to start.

 

About 50% of celiacs are lactose intolerant at diagnosis.  Once healed, many celiacs regain that ability to eat dairy - the norm seems to be about 6 months.

 

Give yourself time. Healing takes a while and backsliding is quite common in the first 6 months. I can honestly say that some of my symptoms became quite bad again at 3 months gluten-free, but it really did start to sort itself out after that first 6 months.  As for bathroom issues, my C did not improve at all until I was gluten-free for well over 6 months. Waiting isn't fun, but sometimes that's all we need to do.

 

All that being said, if you suspect a more sinister health problem has cropped up, based on symptoms and not just stats for untreated celiacs, by all means get it looked into as soon as possible. If there are no symptoms, try not to worry as your health is on the upswing now.  :)

 

Hang in there.

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Whoa!  Slow down and take it one step at a time!  You've only been gluten free for a month.  It takes awhile for your body to rid itself of the lingering antibodies (I read somewhere that the antibodies have a half-life of 3 to 4 months).  It also takes some time to heal, start absorbing nutrients again, and use those nutrients to start making all the repairs.  In my opinion, 3 months for follow-up bloodwork is asking a bit much.  I think the typical timeframe is 6 months. 

 

Still having symptoms only one month into gluten free is not uncommon.  In fact, often the symptoms get worse before they get better.  That said, dairy is a common culprit for continued issues.  You could try not eating dairy for a few days, then eat it, and see if there is a correlation with the diarrhea.  Also, make sure you are 100% gluten free.  Go through all of your food, supplements, etc. one more time - read every label carefully.  Stick to whole foods for the first 6 months or so - no processed crap.  And don't eat out either - not forever, just for the first 6 months or so.  Just so you know that you are 100% gluten-free and not getting any cross-contamination. 

 

If your symptoms don't go away significantly after 3 - 6 months, then you can pursue other tests for other possible ailments.  Yes, it's true that some people never really heal - but that's rare.  And you're way too early in the healing process to be worrying about that!

You may be able to have the endoscopy without adding gluten back, especially since you've only been gluten free for a month (my endoscopy was a couple months after going gluten-free and still showed extreme damage and confirmed celiac disease) - contact a G.I. doctor and see what they have to say about it.  Also, given all the vitamin deficiencies we celiacs suffer from, probably worth an appointment with an endocrinologist -- I had to be on prescription level Vitamin D for almost 2 years.

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