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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.

Did This Happen To Anybody Else?
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6 posts in this topic

I'm a possible Celiac victim (no blood work before gluten-free). When I first removed Gluten, I felt AMAZING for a few days, but then regressed into my former symptoms. In the two months since, I've felt what I perceive to be a steady recovery, but without any jumps like that which occurred right off the bat. 

 

Is this immediate recovery followed by only gradual improvements a common experience?

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Could it be you are getting gluten from cross-contamination?  Did you clean your kitchen well?  Do you have people in your house that are still on the gluten, making it in your home? It's every where, can be in toothpaste, hair product, makeup, lip balms, pet foods, the most innocuous places.  Your significant other could also be getting you if they eat gluten and don't brush their teeth.

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Yes. Everyone is different. Some take months to years to heal. Good luck!

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Yes and no for me. I had a whole list of 40-50 symptoms that went away completely when I went gluten free, some taking days to ease up, others slower and taking weeks to disappear completely.

But it took me a couple months of having some of my pains and some other odd symptoms not ease up, and at times to be worse, for me to figure out that I must also have vitamin deficiencies. Got tested, and sure enough, I had some major ones. Treating them did knock my other major symptoms out.

And I found that I had some new food intolerances that I hadn't had before going gluten-free, so a few more foods were removed from my diet.

 

But I still have odd issues arise from time to time. Some of it I know is related to the damage that gluten did to various organs that is never going to heal. Some of it I still don't understand and continue to do research all of the time, hoping to avoid major problems in the future.

I think one of the things that I have learned through this process is how much I still don't know simply because I haven't stumbled upon the information yet, and how much the medical community still doesn't know because so little research has been done in this area.

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Hi Sidelined.

 

I'm assuming you've seen your Doctor for a look at your symptoms, you may also want to consider a gluten challenge to do blood testing and endoscope.  You could have any number of issues going on and not necessarily Celiac.  You don't want to leave a medical issue untreated and you also would not want to undertake a medically necessary diet if not diagnosed with Celiac.

 

Good luck with what you decide.

 

Colleen

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I had the same thing happen. I felt good for a week and now, for the past month, I have felt terrible. I haven't been able to socialize, work or do anything because I'm super exhausted, nauseous and weak. The doctor keeps telling me to be patient. It seems like I get a tiny bit better every week but not a lot. How long before I will feel back to normal??

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    • Hello and welcome I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.  A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.  Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.  You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.  If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer. Best of luck!   Further reading https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/
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