painful neuropathies, weight loss, malabsorbtion, yet it's all in my head they say

by Paul Porceddu
(Nashville, TN, USA)

It started 8 months ago.

I woke up with thrush (over a teaspoon full of curd scaped off my tongue after eating a pizza hut pizza the night before).

Little did I know that this would become the nightmare called my life. I couldn't get rid of the white tongue much even with a month of probiotics. I was initially scared of HIV as I had been researching unresolving thrush on the internet.

I was negative for HIV which admitedly I did obcess over. There was initial relief, but the symptoms persisted with the white tongue, and then I developed a strange white lacy looking plaque on the side of my tongue known as oral hairy leukplakia.

Again I combed the internet, and it said that it was highly suggestive of HIV infection. So then I had a PCR RNA test for HIV and it too was negative.

During this time, I had a few night sweats, and complete inability to sleep. I had voices in my head like a crazy person, then when I tried to calm myself down, which I was usually able to do with breathing exercises or thinking positive thoughts, I heard songs over and over in my head until they drove me crazy.

These were the early symptoms of this terrible disease, so I thought, until I later discovered that I must have had this my entire life and just now am realizing that those symptoms were due to the intense flare up that I was currently going through.

I have done intense research on this topic and am a physician as well, albeit a chiropractor, but we do have extensive knowledge of the body, in particular when dealing with the bodies coordinating functions as a whole.

I am sure that most of you sufferers of this relentless disease will have gone through the misery of medical doctors trying to chase all of the numerous symptoms that this disease causes until eventually, your family, friends and the medical doctors you have gone to tell you that is all in your head.

They told me that I was just trying to seek attention, or that I am a hypochondriac, or obcessive compulsive to name a few of the things that I was called. Unfortunately, I am obsessive compulsive and a bit of a hypochondriac (more now that this is happening to me) but these symptoms are also manifested in individuals that have been affected by glutens response in the brain.

My story is of an extreme life time case of undiagnosed celiac disease, until recently. At this moment I sit here having had every imaginable celiac related condition, as well as a case of refractory celiac disease and possibly even small bowel cancer (currently undergoing studies).

My wife wants to leave me, because the doctors tell her it is in my head since they can't figure it out.

Yet I continue to eat well while losing weight, and suffering mind bending pain from peripheral neuropathies (when one or both arms go completely numb with prickly pain that nearly paralyzes the limbs temporarily, along with leg paresthesias occasionally); bone pain, sometimes of incapacitating nature, to the point that is becomes nearly impossible to have a bowel movement due to severe low back pain; blurred vision, and many other symptoms which come and go.

I have however figured out how to keep many symptoms in check. Much of this has been from my schooling, continuing education, research, as well as trial and error.

So far the things that have helped me as as follows:

  • Strong digestive enzymes before each meal, as well as hcl if I am eating protein. I mostly now only eat vegetables, and occasional fruit, although the fruit has caused the candida to get worse occasionaly.

  • Vitamin B complex to reduce the amount or severity of the peripheral neuralgia attacks,

  • Magnesium for the heart as I am now having angina as well.

  • Calcium and vitamin D for the bone pain which is now under control.

  • Folic acid to hopefully help with the candida overgrowth and my low WBC count.

  • Beta Carotene to help with the blurred vision, which is now under control.

  • Also I take Zinc, Iron, and Vit. K along with probiotics.


All of these supplements are neccessay to increase the amount your body absorbs. In my case if I go 2 weeks without taking a fat soluble vitamin (A,D,E,K) I will develop severe symptoms of a deficiency state. If I go just 2 days without the water soluble supplements I suffer severe malabsorption syndromes related to those vitamins.

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Copyright© 2007. Please note I am not a doctor, just a fellow sufferer of coeliac disease.
Therefore no information on this site should be taken as medical advice.
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