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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.

Gluten Sensitivity?
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6 posts in this topic

I was wondering if some members here are gluten-sensitive, but don't have celiac?  I am feeling confused today.  My stomach dr tested me for celiac, said it was a low positive so had me get more bloodwork to check other markers for celiac.  I did have an endoscopy before this, but I don't think he was even thinking about celiac then, so I don't think did biopsies for it.  I just saw a rheumatologist too, and she is thinking it's probably gluten, so having me go gluten-free for 3 months and seeing me again in October.  She also did a bunch of other bloodwork and has some other thoughts in mind if it turns out to not be gluten.  Well, my stomach dr just called me and the other bloodwork he did is negative so he said I don;t have celiac disease.  He did say I could continue going gluten-free to see if I have a sensitivity towards it, and if I feel better in a few months, great, stick with it.  But if I don't feel any better in a few months, no need to stay with it.  

Not that I wanted celiac, but I just want answers, and at least if it's gluten, that gives me a plan to get better - just go gluten-free. Now I feel all up in the air again. Has  anyone had chronic fever with gluten sensitivity? I've had a fever since February.  And is it okay to be here on this message board if I am just gluten-sensitive, but don't have celiac? 

 

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You could get another endo with the doctor looking for celiac if you haven't gone gluten free yet. If you have given up gluten already then keep off it and listen to your rheumatologist and when you go back in 3 months have her rerun the test that was positive to see if the levels are going down.

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On 7/17/2017 at 3:11 PM, ravenwoodglass said:

You could get another endo with the doctor looking for celiac if you haven't gone gluten free yet. If you have given up gluten already then keep off it and listen to your rheumatologist and when you go back in 3 months have her rerun the test that was positive to see if the levels are going down.

Thanks for that advice.  I have been gluten-free for two weeks now.  Although about half way through, I accidentally had a small amount of gluten (hubby put some seasoning on his chicken that neither of us had checked the label, and come to find out it had wheat in it... and I ate some leftover the next day for lunch, not realizing he had even put different seasoning on his).  

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You are entirely welcome here! We have & welcome both celiacs as well as non celiac gluten sensitives (NCGS). We recommend NCGS people follow the same strict gluten free diet as us celiacs do. There is research being conducted on NCGS but we don't yet know enough about it to determine if it causes some permanent damage somewhere in the body so better safe than sorry as the saying goes.

Check out our Newbie 101 in the Coping section.

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Hi Lily,

I'm NCGS. I solve murders loosely related to the US Navy in a variety of sunny locations with the help of a bunch of wisecracking workmates. It's a tough job, a typical case takes 48 minutes to crack.  Oh who am I kidding, that's NCIS. I'm living gluten free without a diagnosis. Keep this between ourselves but I've been here for a couple of years now and no-one's chased me away yet.  So you're very welcome here.

On 7/17/2017 at 5:53 PM, LilyR said:

Has  anyone had chronic fever with gluten sensitivity?

That can be assocatied with celiac: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4599687/ and as always you can find people on this forum over the years who have reported similar:

 

On 7/17/2017 at 5:53 PM, LilyR said:

Not that I wanted celiac, but I just want answers, and at least if it's gluten, that gives me a plan to get better - just go gluten-free.

Well that could still be a workable plan. You just may have to do it without the reinforcment of a diagnosis to keep you on the straight and narrow. My advice would be to keep a food diary for these trial months on the gluten-free diet. Note what you eat, when and how you feel. This can help you track any reactions to the diet and this could form the evidence you weigh up when the trial period is at an end. I can tell you from personal experience that testing negative for celiac does not neccesarily mean that gluten isnt playing havoc with your body. 

Best of luck! :)

 

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13 hours ago, Jmg said:

Oh who am I kidding, that's NCIS. I'm living gluten free without a diagnosis. Keep this between ourselves

Bwahahaha!

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