Symptoms...possible Gluten Issue?

[dmarie725]

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??

[NoGlutenCooties]

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!

[dmarie725]

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!

[GFinDC]

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.

[NoGlutenCooties]

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.

[dmarie725]

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.

[NoGlutenCooties]

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.

[dmarie725]

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