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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.

Symptoms...possible Gluten Issue?
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8 posts in this topic

Hello....I'm new here and wondering if anyone could give me some input. Over the last 6 months I've had some really strange symptoms develop. All previous doctors have dismissed me because all tests come back normal, but I finally saw a new functional MD who is looking into a gluten sensitivity. I know I don't have full blown Celiac because my endoscopy biopsies and Celiac basic blood test were negative.

 

Do any of these symptoms sound like possibly a gluten issue?

 

-Frequent, excessive burping/belching (but no heartburn or reflux, just burping)

This is my worst symtpom. 6 months ago out of nowhere I became nauseas and started burping. It got to be 100 tims a day. Decrease a little. I burp on an empty stomach also, and with ANYTHING I eat or drink (even water). Other doctors say I am swallowing air (I'M NOT). I wouldn't wake up one day and start doing that after 31 years of not! What I don't understand, even if it is a gluten issue, is why WATER would make me burp.

 

-Weight loss, can't gain

-Very bad muscle twitching

-Blurry vision

-Lack of energy

-Feel foggy

-Slight hand tremor

-One and off mild nausea (but no vomiting).

 

I have had TONS of medical testing done (endoscopy, ultrasound, ct scan, h.pylori testing, blood work, barium swallow....) all normal.

 

Does this sound like anything gluten related??

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Hi and Welcome to the Forum!

 

Your symptoms do sound like potential gluten issues... however every symptom of Celiac or non-Celiac gluten intolerance have other possible causes.  The good thing is that it sounds like you had thorough testing for Celiac which is an important first step.  Were you consuming gluten when you had the tests done?  I ask because if you were not consuming gluten then the tests are completely invalid.

 

Aside from additional testing for other ailments that your doctor may suspect, you can go gluten free and see if your symptoms go away.  If they do, reintroduce gluten back into your diet and see if your symptoms return.  If they do then you can be pretty confident that you have non-Celiac gluten intolerance - in which case you need to go 100% gluten free for life.  There's no other reliable way to know if you have NCGI.

 

The diagnosis process can be frustrating but the good news is that if it is NCGI then the fix is relatively simple... go gluten free and you'll heal and feel better.

 

Good luck!

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Hi! Thanks for replying. My dr ran some gluten blood tests last week and it was more than the standard Celiac panel. I can't remember exactly what it was though, I wonder why he ran it...can you detect possible issues through blood work even if it's not full blown Celiac?

Can symptoms of a gluten sensitivity just seem to appear overnight?

And does the belching make sense to you? I told my dr what didn't make sense to me is that if the belching is from a gluten problem, why do I have to burp no matter what I eat or drink (including plain water)? And it's literally every time I ingest anything within a minute. It's really disturbing. Could gluten problems really do that?

Sorry...very new to all of this and would really appreciate your expertise!

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Hi! Thanks for replying. My dr ran some gluten blood tests last week and it was more than the standard Celiac panel. I can't remember exactly what it was though, I wonder why he ran it...can you detect possible issues through blood work even if it's not full blown Celiac?

 

A: There are multiple types of antibodies made by the body.  The full celiac panel includes tests for them.  It would be wise to get a written copy of the tests results for your records.

Can symptoms of a gluten sensitivity just seem to appear overnight?

 

A: Yes, symptoms can appear suddenly.

And does the belching make sense to you? I told my dr what didn't make sense to me is that if the belching is from a gluten problem, why do I have to burp no matter what I eat or drink (including plain water)? And it's literally every time I ingest anything within a minute. It's really disturbing. Could gluten problems really do that?

 

A: Yes, gluten symptoms can cause random seeming belching and gas in the stomach and intestines also. You may have an irritated digestive system and that can cause bacteria to get out of control.

Sorry...very new to all of this and would really appreciate your expertise!

 

Hi, dmarie, welcome to the forum! :)  Some answers to your questions in red.

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What GFinDC said.  :)   Keep in mind that many of the issues caused by Celiac are actually caused by the malabsorption that results from Celiac.  So you're basically a starvation victim because you haven't been absorbing nutrients out of your food.  So pretty much anything that can be caused by a nutrient deficiency can be caused by Celiac.

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What GFinDC said.  :)   Keep in mind that many of the issues caused by Celiac are actually caused by the malabsorption that results from Celiac.  So you're basically a starvation victim because you haven't been absorbing nutrients out of your food.  So pretty much anything that can be caused by a nutrient deficiency can be caused by Celiac.

Hi NoGlutenCooties....thanks for your replies! I appreciate it. I'm really new to even the idea of having a gluten issue, so I know nothing.

 

To answer your questions from earlier, yes, in the fall when I had my Celiac biopsy and blood test, yes I was consuming gluten, and it was negative for actual Celiac. Anyways, with my new doctor, I just got some new blood work back. I'm still negative for Celiac, but apparently I have a gene (DQ8?) that my doctor said makes me at risk for "celiac permissive gluten intolerance". He is suggesting that I try a 3-month trial of being gluten-free. Do you know much about these genes?

 

I think I said before that one of my most annoying and intense symptoms is crazy belching. It's been difficult for me to understand some things about this and I wonder if you can shed some light on this for me. I keep thinking that if it were a gluten issue, I would have lots of burping while eating things with gluten. But...I have the burping ALL the time (even on empty stomach when I wake up in the morning), and it's also worse when I eat or drink anything...things even without gluten (like water). I feel like everything I put inside me is so quickly turned into gas that comes right back up.

 

Does that really sound like it can all be caused by a sensitivity to gluten even though it doesn't seem related at all to WHAT I eat? My doctor sort of explained it but I had a hard time explaining. I guess I don't understand how drinking water can create gas that has to come up in burps. It seems so weird.

 

I'm just really desperate to try and understand this. I wouldn't even mind if I have to give up gluten forever...I just want some answers!

 

Anyways, again I'd love your insight! Thank you so much.

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Well... not having the gene can rule out Celiac.  Almost.  There are a couple of people who don't have either of the known "Celiac genes" but have still tested positive for Celiac.  Having one or more of the genes does make you more predisposed to getting Celiac.... but about 30% of the population has at least one of the genes.  And only about 1% actually have Celiac.

 

The 3-month trial is not a bad idea.  If it is gluten-related, you could have non-Celiac gluten intolerance and there is no test for that.  With NCGI you get to experience all of the wonderful symptoms of Celiac but without the actual villi damage.  If your symptoms go away on a gluten free diet and then you reintroduce gluten and have a reaction then you'll know you have either Celiac and they missed it or you have NCGI.

 

As for the constant burping thing... that's a new one on me.  I just wouldn't be at all surprised if it were gluten related.  Seems like Celiac can cause just about anything.

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Thanks :)

 

It's driving me crazy to not have a real diagnosis or answers. I'm going to submit a post about this odd symptom and see if I can hear if anyone else had a similar experience....so just ignore my repeat questions :)

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    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
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