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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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10 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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On 7/19/2017 at 5:19 PM, Jmg said:

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.

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:

 

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! :)

 

Thanks for all that info and the links.  It would be such a relief if I could know what is causing the fever, and that maybe it will go away as I stay gluten-free.  Both my gastro dr and rheum dr said to still stay gluten-free even though I apparently don't have celiac.  They are saying to give it 2-3 months to see how I feel then.  My fever has been down to around 99.9 the past two days, instead of over 100 and 101 like it's been since February.  That is the most exciting thing so far.  My stomach is not as severe or bad, but certainly not great, and I don't feel out of the woods at all concerning that yet.  I still hope to feel a lot better as more time goes by without gluten....I hope.  I seem to get bloat and also discomfort in my ribs more in the evening, even if I ate the same thing at lunch.   I started a food journal.  I guess I need to keep being patient. My rheum dr wants to see the journal in October when I see her again. She said she loves detective work.  It sounds like we all need to become food and symptom detectives when dealing with this.  Now if we could only get an NCIS episode where they investigate how gluten can "murder" our stomachs, and figure out a cure for gluten issues, besides going gluten-free.  It actually hasn't been too bad so far, other than foods that you are iffy or unsure about with all sorts of weird ingredients listed in it.  The internet and this site here helps a lot with some of that.  Luckily there is a whole lot we can still eat, but corn and corn products are an iffy for me too at the moment, and my dr suggested trying to avoid soy, and that xanthan gum, and a few things like that. Only thing that has shown in my bloodwork so far is chronic inflammation that may mean an underlying autoimmune disease.  Ya, I've been hearing "it seems like something autoimmune" for the past few decades.  It'd kind of be helpful to figure out exactly what.  I'm so tired of being tired.  I am sure you all can relate to that.  You just want to wake up and feel good.  

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5 hours ago, LilyR said:

Only thing that has shown in my bloodwork so far is chronic inflammation that may mean an underlying autoimmune disease.

I look back at photos from a few years ago now and can see the inflammation in my face. I spent decades with my body fighting constantly without my really being aware. Freaked me out when I realised!

Few things to think about:

Try to treat these next months as a special case. Dial your diet back and eat really basic and simple. I lived on omelettes filled with veggies, huge green salads with olive oil and cider vinegar as dressing and a very simple evening meal with maybe some meat and rice. I ate as little processed foods as I possibly could. So try and avoid sauces, anything in a box really. 

Your aiming to help your body heal and to reduce the amount of ingredients going in to the basic safest foods. Eat clean and healthy and avoid any possible gluten source. Spend a bit of time learning about hidden sources of gluten too. This thread will help:

 https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

Final point. You may like me eventually have to live life without gluten and without the comfort of a diagnosis that says precisely why. This is not always easy, but what you learn about your body in the next 3 months of this trial could help you to do this. Keep the diary, note your reactions and hopefully when you see the Rheum in 3 months you'll have conducted your own science experiment and have the data you need to make a good decision.

Best of luck :)

Matt

 

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On 7/17/2017 at 11:53 AM, 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. 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? 

LilyR,

jmg has given you good resources/links.

I used to have constant issues with ear infections that went away when I went gluten free.

And recurrent bronchitis they I never have now.

NCGS can cause low grade inflammation that you don't realize at the time . .. till you stop eating gluten.

That said have you been checked for a UTI infection.  It is not uncommon to have low grade fevers when you have one.

My friend at work recently had a bad spell of health and the only symptom she complained about before coming down with a bird flu virus was a low grade persistent fever (not for a few months but for a few years).

The last time I had bronchitis before it became pneumonia I had a low grade fever in the few months before my pneumonia diagnosis.

Keep looking is my advice to you.  Low grade fevers are fighting off an infection . .  sometimes we don't know why until other symptom's present themselves.

I do know that when I went gluten free most of my chronic health issues got better.  I can only assume it (gluten) was triggering inflammation in my body.

I hope you find out what is the cause of your fever and that being gluten free helps it.

****** this is not medical advice

just some of the ways going gluten free helped me and some possible other causes of a low grade fever that have happened to myself or others that I know of.

posterboy,

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2 minutes ago, Posterboy said:

And is it okay to be here on this message board if I am just gluten-sensitive, but don't have celiac? 

Why yes it is!

jmg and myself are NCIS, I mean NCGS specialist/experts or is it NCGI people ourselves.

posterboy,

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