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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? - 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
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TexasJen

Follow-up labs - Accurate???

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Here's an interesting article from Gastroenterology this month......

http://www.gastrojournal.org/article/S0016-5085(17)35624-X/pdf

"This meta-analysis demonstrates the limitations of celiac antibody testing as a surrogate marker for mucosal recovery in persons with celiac disease on a GFD."

"Recommendations to monitor tTG and/or EMA anti- bodies endure because there are no other validated sensi- tive measures that predict mucosal recovery."

 

 

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I have read that article.  While, true, testing for antibodies seems to be better than nothing.  I have read the DGP may be better for monitoring the gluten free diet, but who knows if that is still true or not?  Endoscopies are invasive and not cost effective for constant follow-up care.  

I would like to see more studies about healing outcomes for celiac disease.  Most information is based on clinical observation and just plain guessing.  While my hubby can take a hit that lasts a week, I go down for months!  I am assuming that there are variations of celiac disease, like diabetes.  You just have to find what works for you as an individual.  Follow the basic gluten free diet, but modify it for your personal level of sensitivity and accompanying food intolerances.  I wish there was a meter for my sensitivity.  I can sure identify which carbohydrates can spike my blood sugar.  Those carbohydrates that affect me do not necessarily affect other diabetics.  

I am approaching five years of being gluten free.   I am constantly debating on whether I should get another endoscopy.  (My GI just said to email him directly and he'll squeeze me in within days).   But what will the results reveal?  That I keep making mistakes, am getting cross contamination from hidden sources, that I have refractory celiac disease or lymphoma or I am doing a good job?  I have chosen to move forward, stick to the diet and just simply live and enjoy my life.   

Of course I say this after coming down from a six month bad stretch (tooth infection, flu, colds, daily hives, antibodies raised for both Hashi's and DGP).  Life has been good for the past month despite my family's crazy schedule.  I am going to take it!  

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I think, at least from my personal experience, that these tests are accurate if you were diagnosed including blood work that was positive.  All of the tests on my panel were positive by large numbers at diagnosis and over the next year, they went to very low normal for the ranges given.  My GI symptoms were gone by then and the lingering neuro ones took longer to heal but they did. I would assume in a highly symptomatic Celiac, that resolution of symptoms, normalization of the blood work and weight gain would indicate healing.  Whether I am 100% healed or not doesn't matter as my health is far better today than it was in my youth.  I have not developed any more AI diseases than the 4 I already have and I call that a big win.

I think doctors do not take into account enough symptom resolution, weight gain for the skinny Celiac's or weight loss for those on the opposite end of the spectrum, as important markers for healing.  I am not even sure if it is totally necessary for a person to heal 100% as there is overlap in the small intestine and nutrients are absorbed not in just one place, making it a brilliant design, when you think of it.  If your health has improved dramatically on the gluten-free diet, along with the other things mentioned, then consider yourself healed well enough that you've regained your health back.  Repeat endoscopy's are really for those still having problems.

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Yes!  The designer did a good job with the human body. It never ceases to amaze me.

I am certainly not advocating for follow up endoscopies. I posted it only for information.

For me, I see people advocating for followup labs if you are still having unusual symptoms to see if it could be the celiac. But according to this study, if the labs are negative, it might mean nothing. Your symptoms could still be from celiac even though the labs are negative.

I was diagnosed a year ago and have some residual symptoms (arthritis) and have some new symptoms (terrible reflux) and had assumed it probably wasn't the celiac since my labs are negative.  It only leaves me wondering if I am not doing a good enough job or if I have regular arthritis and the reflux is from something else.  It is frustrating to say the least.....

But, I can at least take this into consideration.....

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1 hour ago, TexasJen said:

Yes!  The designer did a good job with the human body. It never ceases to amaze me.

I am certainly not advocating for follow up endoscopies. I posted it only for information.

For me, I see people advocating for followup labs if you are still having unusual symptoms to see if it could be the celiac. But according to this study, if the labs are negative, it might mean nothing. Your symptoms could still be from celiac even though the labs are negative.

I was diagnosed a year ago and have some residual symptoms (arthritis) and have some new symptoms (terrible reflux) and had assumed it probably wasn't the celiac since my labs are negative.  It only leaves me wondering if I am not doing a good enough job or if I have regular arthritis and the reflux is from something else.  It is frustrating to say the least.....

But, I can at least take this into consideration.....

I did not discover or begin to have problems with dairy until 2 years post diagnosis, when I was doing relatively well.  It could be that I felt so bad in the beginning that I attributed everything to Celiac.  Kind of odd on the timing but after 12 years, I have accepted that I will never be able to eat ice cream or drink milk in anything milk based with out paying for it big time.  It no longer appeals to me. I guess it might be from long term undiagnosed Celiac and my villi haven't all completely healed, but I am healthy enough in every other way that I don't care. 

Arthritis is so common in so many, it could be just arthritis that you would have gotten anyway.  Reflux is tricky, though.  It can be from so many things and could be from a structural problem with the sphincter muscle. I hope you find the cause and put that one behind you.

 

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