But it’s hard to extrapolate from your case. For one, there’s no way of knowing how accurate your diagnosis is, or how many of those thousands of people who have self-diagnosed with Celiac disease actually have it. It’s difficult to diagnose without a bowel biopsy, and many people might just prefer to go on the diet. It’s also, as you know, underdiagnosed – with many cases taking 10 years from the onset of symptoms to diagnosis.

I don’t think people make up itches. But there are many possible causes. Celiac is one.

This is where we have a MAJOR issue in Australia, working with a doctor or doctors is just NOT happening!

I can tell you that the National Health & Medical Research Council have informed me that they acknowledge Morgellons disease as an unexplained & debilitating skin condition. However, they have examined the information currently published in peer reviewed journals and has concluded that, at present, there is insufficient evidence to enable the NHMRC to advise medical professionals and the Australian comunity. However, the NHMRC will continue to monitor the literature and may decide to issue advice when more information is available.

There is a complete break down in communication.

I am receiving no treatment, no investigations, nothing. I have tried, believe me I have tried. You just have to look at me to know there is something very wrong. As for the blue & black thorns in my tummy, I guess that isn’t enough scientific evidence of something!!

I was diagnosed qualitatively with anxiety; depression; chronic fatigue; and hypochondria. I was also hospitalized twice for “dehydration and unknown stomach virus.” They offered a lot of long-term medications designed to make me feel happy, and they were intent on removing pieces of my immune system one by one (tonsils, adenoids, etc) despite the fact that not a one of them tested for any sort of immune disease.

I should have also noted that of the diagnosed 3% of the expected Celiac population, about one-third to one-half are self-diagnosed.

There’s no financial incentive. Period. The medical industry sucked tens of thousands of dollars out of my family and my insurance company, and they never offered anything more than “happy pills” and surgery to remove the most aggravated tissue of the month.

Yet there is no pharmaceutical cure, there is no surgery – only dietary modification. In two months, I started eating twice as many calories and yet I lost 50 lbs and stopped sleeping 16-18 hours a day. People I had known my whole life could hardly recognize my new appearance and attitude.

If I had just listened to the doctors, I fear that I would just be another mentally-medicated “crazy” person with a “made-up itch.”

I know the itch. I know that feeling like something is crawling underneath your skin and if you could just dig a little deeper… if you could just draw out the small white fibers and granules maybe you could get some relief. The feeling of waking up in the middle of the night because you need a back-scratcher or the sigh of satisfaction when the itch is replaced by the dull irritation of a newly broken scab.

There was a while I feared there was some parasitic infection – not because someone put the idea in my head but because my intuitive imagination needed an explanation of the crawling and burrowing feeling.

My dermatologist diagnosed me with “some kind of dermatitis” and handed me a bottle of topical steroids (his words in quotes, not mine). I’ve tried the pine tar, the coal tar, calamine, astringents, citrus extracts – there were many sources of temporary help but none would last.

The Stats
The good news for me is that I can put a name on it and it is getting better. The condition is called “dermatitis herpetiformis,” and its an auto-immune response to a protein found in 97% of pre-packaged food. Celiac Disease is the name of the root condition, it is a body’s rejection of wheat gluten, one of the most omnipresent protein sources in our diet. The World Health Organization estimates this reaction affects 1 in 100 people – and thusly Celiac Disease is included on their list of diseases that should be screened for universally in any given population.

Are you still scratching? Consider the odds:

U Chicago estimates 1 in 100 Americans, or ~3 million people have Celiac Disease.

1 in 10 patients with Celiac Disease will present with Dermatitis Herpetiformis – an intensely itchy skin condition that results in small white granular IgA and sebum eruptions from swollen pores. That’s 300,000 Americans.

U of Chicago also estimates that only 3% of all Celiac sufferers in America have been diagnosed! For the 300,000 people itching because of gluten, 291,000 have not been diagnosed properly.

And besides the itch…

The symptoms of untreated Celiac Disease include: fatigue; brain-fog/confusion; sleeplessness; digestive problems; anxiety; paranoia; signs of malnutrition in the hair and nails and teeth; and co-morbidity rates surge with diabetes, immune arthritis, lupus, and lymphomas.

Some gluten-free food for thought.

For those who suffer……….boost your immune systems. The fungus eats the nutrients that would help it to regenerate itself. Purchase inexpensive diatomaceous earth (be sure it’s foodgrade). Taken daily, the metals in your body will adhere to it and it’s removed through the bowels. Rid your body of parasites. Hulda Regehr Clark’s book, A Cure for All Cancers gives an herb/tinctures 10 day cleanse – 3 items, it’s easy. Take krill oil supplement to nourish your brain to reduce the fog. Our bodies have also been robbed of potassium – a natural supplement will do……..better yet, eat a banana. Drink filtered water, avoid junk and fast food. Keep moving. These things will keep us strong. Trust your most primal instincts. You know what’s going on. Keep fighting the good fight! Peace and renewed health to us all.

I don’t know what is the cause of your health problems. I don’t know what the causes of the other Morgellons patients’ health problems are. I don’t pretend to know, and I never have.

This site is about examining if Morgellons is a distinct disease, and if the fibers have anything to do with health problems. I look at the evidence and the claims presented, and I offer analysis, and I present new evidence, and related work.

Since this site began two years ago, I’ve had the following text on it:

The Evidence Indicates:
1. The fibers are environmental and unrelated to any illness
2. Morgellons is not a distinct disease
3. People who think they have “Morgellons” probably have a mixed variety of physical and/or mental illnesses.

I understand that some people who think they have Morgellons also think that I am “dismissing” their problems. Nothing could be further from the truth. Having observed for several years, I am acutely aware of the very real suffering that these patients have. They are certainly suffering. The physical symptoms are real. They do have itching, they do have sores and other skin problems. They do find fibers on their skin.

I want these people to improve, to get well. I think they can do this best by working with their doctor to find a set of treatments that works best for them. I feel that the actions of the MRF are getting in the way of effective doctor-patient parternships, and hence denying these patients the care they so desperately need.

I do NOT know what is wrong with you. But neither does the MRF.