Possible Celiac With A Slew Of Symptoms

[Rob-A]

Hi everyone,

I'm a 28 year old male with a history of Eosinophilic Esophagitis and Barrett's Esophagus. I also have a whole slew of other symptoms that might be related.

Joint pain in my neck, back, jaw, elbows, wrists, hands, knees, ankles

Eye pain (like the muscles get inflamed)

Mucous membrane inflammation

Extreme headaches (I've been diagnosed with atypical migraines)

Muscle pain and trigger points in my neck and upper back (Physiatrist and PT can't figure out why they keep coming back)

Unexplained stomach pain (My GI had every test run including and MRI w/ contrast with no clear idea what was wrong)

Flutter/rumble feeling in my stomach/intestines

Flatulence

Abdominal cramping

Diarrhea

Muscle weakness

Peripheral neuropathy (in my fingers mostly)

Obesity

Brain fog

Sores on my scalp, feet, arms and in my mouth

I've been tested for everything under the sun and everything comes up negative. It was interesting to find the EE because I went into GI with horrible belching and stomach cramping that I got after eating a huge stack of pancakes. My GI doctor, who is a leading researcher in EE could not find a cause, even after allergy testing and biopsies.

I went on a raw vegan diet after being diagnosed with Barrett's and everything resolved. So much so that my last EGD showed no signs of EE or Barrett's and all of my esophageal problems had resolved. Well I went off the raw vegan stuff and back to the SAD (Standard American Diet) and that's when the horrible joint and muscle pain started. It was so bad that I went to the ER several times because I thought I was having a heart attack. I was referred to a Physiatrist who sent me to PT for the neck pain. It was about this time that I started noticing that the pain was tied to my diet. I have tested it several times by going gluten free and feeling great. I then eat some gluten and within an hour or two my joint pain is so bad I feel like my body is on fire.

I'm getting ready to go back to my GI because my dysphagia and esophageal spasms have returned. I'm expecting to find that the EE has come back as well. I want him to test me for celiac, but I don't know what to ask for. I'm assuming he knows what to do, but I want to be prepared. Any help would be appreciated.

Thanks,

Rob

P.S. Another thing that makes me suspicious of celiac is an old gene study that was done on me about 10 years ago that showed I had HLA B8 and CW7, which I have read can put you at risk for celiac. I'm sure there have been more recent breakthroughs in this field, so I don't know if this is still used.

[Skylark]

Hi, Rob

You sure sound celiac, or at least gluten intolerant to me.

If that genetic test was HLA-DQB8, you do have a gene that increases risk for celiac. I don't know what CW7 means. What you need to ask for is a celiac panel. It should include anti-gliadin IgA and IgG (often abbreviated AGA), tissue transglutaminase IgA and IgG (abbreviated TTG), and ideally deamidated gliadin peptide IgG, a new and very sensitive test. Your doctor might also order anti-endomysial IgA, another autoimmune test. You need to have been eating gluten for about 2 months to get positive results. It takes a while for the antibodies to make it to the bloodstream, if they do at all. The other thing that can be done is an intestinal biopsy to look for villous atrophy.

If you get negatives on the test, don't sweat it. The tests are looking in your blood for something that is happening in your joints, nerves, and gut so they're not that sensitive or accurate. Your elimination and challenge diet is unquestionable evidence that you're gluten sensitive. Once you get tested, you'll probably want to go completely gluten-free again.

[Rob-A]

Hi, Rob

You sure sound celiac, or at least gluten intolerant to me.

If that genetic test was HLA-DQB8, you do have a gene that increases risk for celiac. I don't know what CW7 means. What you need to ask for is a celiac panel. It should include anti-gliadin IgA and IgG (often abbreviated AGA), tissue transglutaminase IgA and IgG (abbreviated TTG), and ideally deamidated gliadin peptide IgG, a new and very sensitive test. Your doctor might also order anti-endomysial IgA, another autoimmune test. You need to have been eating gluten for about 2 months to get positive results. It takes a while for the antibodies to make it to the bloodstream, if they do at all. The other thing that can be done is an intestinal biopsy to look for villous atrophy.

If you get negatives on the test, don't sweat it. The tests are looking in your blood for something that is happening in your joints, nerves, and gut so they're not that sensitive or accurate. Your elimination and challenge diet is unquestionable evidence that you're gluten sensitive. Once you get tested, you'll probably want to go completely gluten-free again.

Thank you for the reply. I spoke with my GI doctor today and he told me that they tested me for Celiac/Sprue last time, but it was negative. I'm thinking that this was due to my gluten-free diet and this time should be more accurate. I've been eating as much gluten as I can and I'm in almost constant pain because of it. Hopefully it's worth it. I should be having an EGD within a month and blood work probably sooner than that.

[IrishHeart]

Hi everyone,

I'm a 28 year old male with a history of Eosinophilic Esophagitis and Barrett's Esophagus. I also have a whole slew of other symptoms that might be related.

Joint pain in my neck, back, jaw, elbows, wrists, hands, knees, ankles

Eye pain (like the muscles get inflamed)

Mucous membrane inflammation

Extreme headaches (I've been diagnosed with atypical migraines)

Muscle pain and trigger points in my neck and upper back (Physiatrist and PT can't figure out why they keep coming back)

Unexplained stomach pain (My GI had every test run including and MRI w/ contrast with no clear idea what was wrong)

Flutter/rumble feeling in my stomach/intestines

Flatulence

Abdominal cramping

Diarrhea

Muscle weakness

Peripheral neuropathy (in my fingers mostly)

Obesity

Brain fog

Sores on my scalp, feet, arms and in my mouth

I've been tested for everything under the sun and everything comes up negative. It was interesting to find the EE because I went into GI with horrible belching and stomach cramping that I got after eating a huge stack of pancakes. My GI doctor, who is a leading researcher in EE could not find a cause, even after allergy testing and biopsies.

I went on a raw vegan diet after being diagnosed with Barrett's and everything resolved. So much so that my last EGD showed no signs of EE or Barrett's and all of my esophageal problems had resolved. Well I went off the raw vegan stuff and back to the SAD (Standard American Diet) and that's when the horrible joint and muscle pain started. It was so bad that I went to the ER several times because I thought I was having a heart attack. I was referred to a Physiatrist who sent me to PT for the neck pain. It was about this time that I started noticing that the pain was tied to my diet. I have tested it several times by going gluten free and feeling great. I then eat some gluten and within an hour or two my joint pain is so bad I feel like my body is on fire.

I'm getting ready to go back to my GI because my dysphagia and esophageal spasms have returned. I'm expecting to find that the EE has come back as well. I want him to test me for celiac, but I don't know what to ask for. I'm assuming he knows what to do, but I want to be prepared. Any help would be appreciated.

Thanks,

Rob

P.S. Another thing that makes me suspicious of celiac is an old gene study that was done on me about 10 years ago that showed I had HLA B8 and CW7, which I have read can put you at risk for celiac. I'm sure there have been more recent breakthroughs in this field, so I don't know if this is still used.

Hi Rob,

Your "slew of symptoms" sound much like mine. That burning joint and muscle pain and weakness, those trigger points that keep coming back after treatment? Yup, that's me! Makes my life hell--and has for 3 years. I feel as if I am on fire, too! Agonizing pain. PT, MT, acupuncture, chiro... NOTHING has helped. My physiatrist is stumped too. Told me I "may have to live with it ". I do not accept that. (Plus, this was before my diagnosis) But the latest PT --who is "gluten savvy" ---says the inflammatory response from the gluten and the leaking gut causes "dumping" into the tissues and is likely keeping the muscles/joints in pain.

I am wondering...how long were you gluten free before you felt the pain come back?

Frankly, your positive response to being gluten-free sure speaks volumes! You should stick with it. And your experience gives me great hope that eventually, my pain will subside someday too.

Good luck and please keep me posted on your progress!

Ginny