Symptoms Stretching Back Almost A Year To The Day, Feedback Would Be Much Appreciated As Im At A Total Loss

[Luke Galway]

For the last year I have been experiencing all kinds of weird symptoms that seem to flare up on and off. It all started when i thought i had a bad virus with extreme fatigue being the symptom, following this i mildly improved but with symptoms i had never had before - Muscle Twitching, Pins and Needles, Severe headaches, Swollen ankles, Diarrhea, Stomach Bloating, Chest Pain, Muscle aches, Brain Fog, and the most worrying symptom of all muscle loss/atrophy.

A few months after this my overall tolerance for daily activities hit an all time low, after just a few hours on my feet i would be exhausted and the following days my muscles would ache for days as if id completed a marathon. Since then my symptoms somewhat improved with my tolerance for daily activity became stronger but at the same time still having strange symptoms. The symptoms that really worry me are the muscle twitching and sudden muscle loss I have been experiencing. The muscle loss seems to happen in fits and start where my tone/definition seems to almost disappear and slowly come back in the weeks following these spells and this has been the cycle over the last year.

I have had all sorts of blood work done which have came back normal including a celiac test although i know there are a few.

I have also had Nerve Conduction Test which came back normal.

I think basically what im asking is if anyone has experienced any similar symptoms to mine as i have read of people with celiac having peripheral neuropathic symptoms before.

Feedback would be greatly appreciated.

[Bubba's Mom]

For the last year I have been experiencing all kinds of weird symptoms that seem to flare up on and off. It all started when i thought i had a bad virus with extreme fatigue being the symptom, following this i mildly improved but with symptoms i had never had before - Muscle Twitching, Pins and Needles, Severe headaches, Swollen ankles, Diarrhea, Stomach Bloating, Chest Pain, Muscle aches, Brain Fog, and the most worrying symptom of all muscle loss/atrophy.

A few months after this my overall tolerance for daily activities hit an all time low, after just a few hours on my feet i would be exhausted and the following days my muscles would ache for days as if id completed a marathon. Since then my symptoms somewhat improved with my tolerance for daily activity became stronger but at the same time still having strange symptoms. The symptoms that really worry me are the muscle twitching and sudden muscle loss I have been experiencing. The muscle loss seems to happen in fits and start where my tone/definition seems to almost disappear and slowly come back in the weeks following these spells and this has been the cycle over the last year.

I have had all sorts of blood work done which have came back normal including a celiac test although i know there are a few.

I have also had Nerve Conduction Test which came back normal.

I think basically what im asking is if anyone has experienced any similar symptoms to mine as i have read of people with celiac having peripheral neuropathic symptoms before.

Feedback would be greatly appreciated.

Have you had vitamin/mineral level blood tests? Sometimes a deficiency shows up with those, and supplements can help a lot.

Celiac blood tests have a 20-30% false negative. Why not try going gluten-free and see if things improve for you? The neurological symptoms of Celiac seem to be slower to go away, so be patient.

[Luke Galway]

Have you had vitamin/mineral level blood tests? Sometimes a deficiency shows up with those, and supplements can help a lot.

Celiac blood tests have a 20-30% false negative. Why not try going gluten-free and see if things improve for you? The neurological symptoms of Celiac seem to be slower to go away, so be patient.

Hey, thanks for the reply. I've had my vitamins checked yes, they all came back normal. I think I had a calcium reading that was a little low but that's all. I'm currently in the process of having all my blood work retested, sort of just starting a fresh. After I have these results back I think i will go gluten free and see if theirs any improvement. The thing that's really puzzling me is the fact my symptoms seem to wax and wain in severity especially with my muscle tone/definition it seems to be okay for a few weeks then suddenly I have loss of muscle tone/definition again which slowly returns over weeks and it's been the same cycle over the last year, but hey thanks for the reply anyway it's much appreciated and i'll keep you posted.

[Flav]

Hey, thanks for the reply. I've had my vitamins checked yes, they all came back normal. I think I had a calcium reading that was a little low but that's all. I'm currently in the process of having all my blood work retested, sort of just starting a fresh. After I have these results back I think i will go gluten free and see if theirs any improvement. The thing that's really puzzling me is the fact my symptoms seem to wax and wain in severity especially with my muscle tone/definition it seems to be okay for a few weeks then suddenly I have loss of muscle tone/definition again which slowly returns over weeks and it's been the same cycle over the last year, but hey thanks for the reply anyway it's much appreciated and i'll keep you posted.

Luke. Yes i have the exact same thing happening to me. Im currently on a gluten free diet for two weeks and while there have been a few good days i have definately still had waves of symptoms. I get the dizziness and numb arms with tingling. I have lost ten poinds, especially in my waist, and have lost much muscle strength. Some days i caan lift a decent amount and two days later i cant lift a fraction of it. My dr is no help and right now im jist treading water hoping to really feel better from my gluten free diet. Unfortunately it doesnt deter my frequent worry since i still dont have any kind of answer.

Keep us posted on your progress but i suggest seeing how a gluten-free diet works for you

[Kamma]

There is a growing body of evidence that some people react to gluten but don't develop the celiac aspect of the disorder. This is especially true for the people who are affected neurologically and antibodies are attacking the Pukinje cells in the cerebellum part of the brain. Traditional testing will not catch these people as the tests are designed for celiac antibodies of ttg2 IgA. England Coealiac.Org states that people affected neurologically will primarily have an increase in antibodies connected the ttg6. However this test is not commercially available as of yet. In addition, Dr. Fassano (one of the lead US celiac researchers) says that it's common for people with gluten sensitivity to have intestinal symptoms like bloating and gas, but test negative on the ttg IgA or have a clean biopsy.

At my worst, I couldnt get off the couch I was so drained and lethargic. When I did I usually couldn't walk straight because of the ataxia.

Research Dr. Marios Hhadjivassiliou out of Sheffield UK. He is one of the pioneers of gluten ataxia and neurological manifestations of celiac and Dr. Fassano out of the University of Maryland.

For an overview from a competent and trustworthy person, you might want to check out Jane Anderson's writings for about.com. She was a science/medical reporter and was diagnosed with celiacs in 2003. She spends alot of time researching the published articles and interviewing key researchers and then presents this material back at about.com. She has some wonderful, up to date stuff on gluten sensitivity, not just celiac.

Here's the link:Open Original Shared Link