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Michelle M...

Major Gi Symptoms A Must To Be Considered Sensitive?

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Can someone have a gluten sensitivity if the ONLY GI symptoms are bloating and occasional gas-i-ness? My doc just suggested I get tested due to chronic anemia and b-12 deficiency (despite plenty of dietary consumption of both - thinking malabsorption), major fatigue, fogginess-cognitive issues, low mood and bloating (6 months pregnant looking by end of day even though naturally thin). Does this seem to fit the bill for gluten senstivity?

Thanks.

Michelle

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Nope, major GI symptoms are not a must to be considered for Celiac diagnosis. . .some of us never had GI symptoms until after we went gluten free (there is some debate over whether we actually never had them or simply didn't notice them because they were what we considered to be normal). In fact, many celiacs with cognitive problems due to gluten present without significant GI symptoms. Trust your doctor - get the blood panels run at the very least. (And unexplained anemia and b12 deficiency are classic celiac symptoms, with or without GI involvement).

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No way!! I found out the hard way. My neurologist kept calling my gluten ataxia Celiac Disease. I had been given all three blood tests -- only had antigliadin antibodies (first "high", then "outrageously high"), as well as an endoscopy and colonoscopy. I wouldn't go gluten free because I kept saying "I DON'T have Celiac." It wasn't until my endocrinologist explained "gluten sensitivity" or "gluten intolerance" to me that I went gluten-free. In the meantime, the gluten was systematically destroying the cerebellum of my brain.


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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In my signature there's a link to "The Gluten File", click it and read up on the neurological symptoms. In fact, there are many ways that gluten can damage your brain, skin and perhaps other organs without every denting a villi in the process. So you'd end up with negative blood and biopsy but could definitely have other issues. That's why I think blood tests are so, so worthless.

Even a cardiologist is recommending to his patients to stop eating wheat.

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Michelle,

Some of us have classic celiac disease with major GI symptoms. Others have no GI symptoms whatsoever. But no matter what the symptoms, none of us can tolerate gluten. In fact, the majority of celiacs and gluten sensitive people do not exhibit classic celiac symptoms. What you're feeling certainly corresponds with gluten intolerance. You're GI symptoms may not be major, but I'm sure you're feeling awful anyway. You should definitely get tested. It seems like you have a pretty smart doctor. I hope you feel better. Good luck.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Thanks to everyone for their thoughts and the links to information.

I will be doing one of the Enterolab gene tests as soon as it arrives. Not sure if this is best diagnostic tool or not but it's what the dr. ordered. If I learn this has been my problem (for as long as I can remember) I'll be very relieved -- I'm sure going gluten free is not easy or convenient but much preferred to constantly being told I just need Prozac and to eat better to raise my iron, b12 and vit d levels. Frustrating because I eat more meat than a caveman and drink more milk than a calve and always have. If it's not gluten, then I'll explore dairy next.

M.

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Wow! Your doctored ordered a test from Enterolab. What's the deal? Are they legit then, or not. Our pediatric GI basically laughed at our Enterolab paperwork and said he did his training in Texas and they NEVER ordered anything from Enterolab. We asked if he thought it was a hoax. He repeated, I trained in Texas and we NEVER, NEVER ordered anything from Enterolab. On the flip side, our GP said he though Enterolab was legit and it was started by a doc who's daughter has Celiac. I don't know what or who to believe.

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No clue on the Enterolab being legit bit. The Dr. I'm working with seems pretty on the ball and committed to finding the "cause" of symptoms vs. just treating them. I trust her judgement and therefore will comply with her reco to get tested.

Rez, did your Enterolab paperwork show a positive result but you questioned it (or the Ped GI doc questioned it)?

Michelle

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I had myoclonus, ataxia, severe fatigue, brain fog and pain that started back in 1990. The myoclonus ataxia were just eliminated last year by getting the gluten out of my diet.

I was diagnosed with CFIDS / FM and told I would have to live with it ... You are lucky to have such an enlightened doctor...

I only had mild IBS from 1975 - 2004, then in 2005 I developed severe digestive problems.

I have not been tested. Long story. My GP diagnosed me as gluten intolerant based on results last year...

Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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