Tanzanite

I've been doing a lot of reading about it and apparently 96% of those with celiac are undiagnosed/misdiagnosed. That ia a huge amount. A lot of people have no symptoms. You need to be eating 0.3g of gluten per kg of bodyweight per day for a positive blood test if you have celiac disease for at least 6 wks.

I eat under half that which is why my blood test was a weak positive.

For me the EDS and ANS problems are genetic but all these autoimmune disorders that keep coming out, especially recently and my lactose intolerance I've had for years seem to be connected to the celiac. I do have the classic celiac stool, I thought for years it was IBS and was told so. I had never been tested for celiac before. I do feel sad that no one tested me for it before (they tested for Crohns and colitis though) as maybe a lot of my illnesses could have been avoided. Though I have heard in some people, things like thyroid antibodies and Sjogren's syndrome can reverse once on a gluten free diet. I have my fingers crossed I'm one of them!

I just thought this info may help some people as so many go undiagnosed. It's now thought 3 in 100 people have it and possibly even more.

If anyone wants to read more on it, these books are very good: Dangerous Grains and Celiac disease a hidden epidemic.

Hmm, so why have some UK scientists found changes in the blood something connected to genes and are developing a blood test to diagnose it and have trialled the use of Beta Interferon to cure it with some success?

Yet this article says it can't be found in the blood.

I should have added, there are many people who have negative blood tests, yet a positive biopsy. Other's have the opposite, yet can still have celiac. A lot depends on the person looking at the biopsy and also they may miss it if there's only slight damage to the intestine or it's only just starting and there's no damage to show yet etc.

I have just had a positive test for Celiac/Coeliac (sp depending on where you are in the world!) disease and going to be doing further testing shortly.

I was interested to come across the list of symptoms below which includes Central nervous system and Autonomic nervous system. Does anyone think it could all be connected? The symptoms of celiac seem so familiar to how a lot of us have felt for years and with nervous system problems being connected as well as collagen disorders it seems too much of a coincidence.

Any thoughts?

List of symptoms associated with Celiac Disease (also known as Celiac Sprue and Gluten Intolerance):

Lassitude (a term describing a feeling of tiredness, weakness or exhaustion)

Inanition (exhaustion, as from lack of nourishment)

Depression

Fatigue (often chronic)

Irritability

Fuzzy-mindedness after gluten ingestion

Dental enamel defects (lots of dental cavities due to weak enamel)

General malnutrition with or without weightloss

Any problem associated with vitamin deficiencies

Diarrhea

Constipation

Lactose intolerance

Flatulence

Anorexia

Nausea

Vomiting

Burning sensation in the throat

Abdominal pain and bloating

Borborygmi (audible bowel sounds)

Abdominal distention

Steatorrhea (fatty stools that float rather than sink)

Foul smelling stools

Bulky, greasy stools

Anemia (iron deficiency)

Hemorrhagic diathesis (bleeding disorder)

Osteoporosis/osteopenia (bone loss or thinning)

Bone pain (especially nocturnal)

White flecks on fingernails

Short stature (due to slow growth)

Arthritis

Rheumatoid arthritis

Arthralgia (pain in the joints)

Tetany (spasms and twitching of the muscles)

Parasthesia (abnormal or impaired skin sensation including burning, prickling, itching, or tingling)

Amenorrhea (absence of menstrual bleeding)

Delayed puberty

Infertility

Impotence

Cheilosis (inflammation, cracking and dryness of the lips)

*Angular cheilosis (specifically cracking in the corners of the lips)

Glossitis (swollen tongue)

Stomatitis (any form of inflammation or ulceration of the mouth, such as mouth ulcers, cold sores, thrush, etc.)

Purpura (purple or red spots on your skin caused by bleeding under the skin, more common in elderly)

Follicular hyperkeratosis (corns, calluses, plantar warts, psoriasis, nail fungus)

Atopic dermatitis (a tendency towards allergies and a predisposition to various allergic reactions)

*Scaly dermatitis (inflammation of the skin, includes dandruff and topical allergic reactions)

Hyperpigmented dermatitis (can't find the definition, must have something to do with the color of the rash?)

Alopecia areata (loss or absence of hair, leaving the skin looking and feeling normal)

Edema (accumulation of serum-like fluid in the body tissues)

Ascites (accumulation of fluid in the peritoneal cavity-the space between the abdominal wall and the organs)

Selective IgA deficiency

Seizures, with or without occipital calcification

Hepatitis (inflammation of the liver, may be acute or chronic)

Dermatitis herpetiformis (skin rash characterized as intensely itchy skin eruptions like red bumps and blisters. Burning, stinging and itching is very bad. It appears in groups around the body, most often on the head, elbows, knees, and buttocks, much like the lesions of Herpes which is why the name is herpetiformis-meaning "like herpes". Must be diagnosed by a doctor. Only occurs in celiac patients.)

Liver disease

Xerophthalmia (an eye disorder which causes the conjunctiva and cornea to become abnormally dry)

Night blindness (inability to see well in dim light)

Thyroid disease

Unexplained neuropathic illnesses, including ataxia and peripheral neuropathy

*Peripheral neuropathy (disease, inflammation and damage to the peripheral nerves, which connect the central nervous system to the sense organs, muscles, glands, and internal organs. Damage to sensory nerves may cause numbness, tingling, sensations of cold, or pain, often starting at the hands or feet and moving toward the body center. Damage to the nerves of the autonomic nervous system may lead to blurred vision, impaired or absent sweating, headaches, episodes of faintness associated with falls in blood pressure, disturbance of gastric, intestinal, bladder or sexual functioning, including incontinence and impotence. In some cases there is no obvious or detectable cause)

*Ataxia (incoordination and clumsiness, affecting balance and gait, limb or eye movements and/or speech, making one appear as if they were drunk)

Dementia

Diabetes mellitus type 1

Sjogren's syndrome (eyes, mouth, and vagina become extremely dry)

Collagen disorders

Down syndrome

IgA neuropathy

Fibrosing alveolitis of the lung (body produces antibodies against its own lung tissue, creates a dry cough and breathing difficulty upon exertion)

Hyposplenism, with atrophy of the spleen (underactive spleen)

Pancreatitis (inflammation of the pancreas)

Lymphoma (any group of cancers in which the cells of the lymphoid tissue multiply unchecked)

Leukopenia (abnormal decrease in white blood cells, often reducing immune system function)

Coagulopathy (blood clotting disorder)

Thrombocytosis (low blood platelets/damaged platelets, causing large amounts of bruises due to uncontrolled bleeding under the skin)

Melanosis (black or brown discoloration of the colon, usually due to chronic constipation)

Erythema nodosum (red-purple swellings on the legs and sometimes arms, with fever and joint pain)

In children:

Failure to thrive

Irritability

Paleness

Fretfulness

Inability to concentrate

Emotional withdrawal or excessive dependence

Nausea

Pale, malodorous, bulky stools

Frequent, foamy diarrhea

Wasted buttocks

Anorexia

Malnutrition:

*With protuberant abdomen (with or without painful bloating)

*Muscle wasting of buttocks, thighs, and proximal arms

*With or without diarrhea

(as well as any number of the above diseases and disorders)

Additional information:

Reactions to ingestion of gluten can be immediate, or delayed for days, weeks or even months.

The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease.

Flop: I read on the hypermobility syndrome website he had now retired!

He is such a nice man. He came all the way to me at my home from London (few hours drive away) because even my local specialist wouldn't come and see me , it was/is impossible for me to go out. He said my stretchmarks were the worst he'd seen in EDS (over an inch wide!) and he took photos of them! I always wonder if they're hanging up on his office walls! lol

I never had cracking joints or anything until around the age of 11. I used to get what they called 'growing pains' and apparently that is EDS. I've always had problems with autonomic dysfunction/POTS but it was milder back then and only now can I look back and think, oh yeah, I had it all along!

That's ok, I know what you mean about making you feel not so alone with the bad treatment from the so called medical profession. Mine is such a long story it could probably fill a book! (I'd like to write one actually!) Even though I have seen a psychiatrist and psychologist in the past and they both said all my problems were physical and not mental I still had huge problems with Dr's. I only see one unless I absolutely have too, which is not ideal as I have a lot of things that need to be sorted. I research and do as much as I can myself. I have diagnosed everything myself then sought out the top specialist if I can to confirm.

Something is very, very wrong in the medical profession when so many have to do this.

I'm no stranger from the medical profession lying to each other and to me! lol I've been through **** with Dr's. Verbally abused, neglected etc etc. Did you say to the psychiatrist that EDS is a genetic condition? They obviously don't know anything about it.

I expect that was him. He diagnosed my EDS and Autonomic Dysfunction, he said the two go together.

Hi Becca,

UK here too.

I feel your pain, I have had things like that and worse happen to me. It took 27yrs to diagnose me. I was terribly ill and still am severely ill. Nowadays, I diagnose myself and then find the top person to confirm it. Otherwise I'd still be in limbo.

It's a shame you couldn't have seen Prof Grahame before he retired, he's such a nice man and doesn't think it's psychiatric. Prof Mathias has apparently taken over for EDS now Prof Grahame has retired.

Where abouts are you, I may be able to give you some help with names of Drs and specialists. PM me if you'd like.

I just came across something in a magazine I was reading the other day, where it said that food that seemed to go through very fast can be down to Microscopic colitis. Worth checking out.

It's called Nystagmus and I get it too.

First off, try to relax as it wont help matters, stress does make POTS worse. I know, easier said than done but if it is POTS it's not life-threatening just life disrupting.

I remember how scared I was for 6mths when I went through an awful time with it when it first became bad but try to relax a little.

You can have high BP with it, that's not unheard of.

You need to try and get them to do a tilt table test which is what they should do to test for POTS.

I'm sure the others can give more info too and maybe even point you in the right direction of a Dr who knows more about POTS. Also look on the Pots place website as there is a list of Dr's there.

Good luck and hope you start feeling better soon.

I used to never sweat a few years back when my pulse was always 62bpm and I felt freezing all the time despite being wrapped up in thick fleece PJ's, a thick fur blanket, a thick duvet and the heating on!

These days a/c on 24/7 even in winter unless it's less than 5c, feel boiling hot all the time and the sweat just keeps on coming until it almost drips off me. I don't even need to do anything to sweat loads. I use the strongest antiperspirant I can get, it's meant to last 5 days between uses and it only reduces it a little. It's horrible.

Have you had any tests for things like Coeliac (Celiac) Disease?

I am very gassy full stop due to various stomach things but if I try and do anything I end up getting windy stomach pains, botty burps and quite often a full blown stomach upset along with the tachy, adrenaline surge, heavy feeling, weakness, shaky, breathing problems etc etc.

It is exhausting because we have to raise our arms up to wash our hair and that makes the heart beat harder and faster. I cannot compromise on showers- it is very rarely that I won't have one. luckily, my university room has a walk in shower with a fold down seat, so that if I feel myself starting to go funny, I can sit down. I sometimes have to when I'm doing my hair. Have you tried getting a seat in the shower? I find that when i'm bad, standing up is murder. you could always try washing your hair in the bath by just lying back - I have done that , too at home, but moving from supine to sitting up in the bath can be really, really hard, especially if you are very dizzy.

A month without a shower is something no one should have to suffer. Can someone help you shower- a close friend or a relative? failing that, in the UK at least, if someone is fundamentally unable to maintain their own bathing and washing needs, then social services are obliged to carry out an assessment and help them to do it.

Social services gave me a stool for the shower but when it's in there, there's no room to move. A stool is no good for me anyway, makes me feel dizzier.

Someone helps me get everything ready to have a shower but they can't help me in it, too small.

I can't have a bath because it's downstairs, I can't get downstairs. The one time I did try it, I nearly stopped breathing.

My landlord wont allow any adaptations to the house and I can't find a new place to live because no one will take benefits. I'm on the council list for a place but was told it would be a ten year wait!

I used to have short hair but it's now really long and drives me crazy. Haven't been well enough to have it chopped again then there's having to keep the length maintained by having it cut every 6wks. I haven't been well enough to have a hair cut for 2 1/2yrs! I feel like putting it in a ponytail then chopping it off myself even if it's all wonky lol I could solve the problem completely with a shaved head lol

Yes, I get this, more so since the POTs became bad. I can go from looking 6mths pregnant to normal and back again in the space of a day lol.

I know mine is due to IBS, Lactose intolerance and possibly blood pooling. There's also a question mark over whether I have coeliac disease as well.

I'm even worse, due to POTS I'm lucky if I get a shower once a month or even two! I'm fed up with my horrid lank, greasy, matted hair and I used to shower once, sometimes twice a day. I feel awful for days, can't breathe properly, exhausted etc. I have to use almost cold water too.

If I'm desperate for my hair to be washed in between I do use NoRinse Shampoo, it's not ideal but it gets me by in between showers. Also the NoRinse bodywash which is excellent. Even doing that leaves me ill for a day. If someone else washes me and/or my hair I still suffer just as much as if I've had a shower. No win situation.

After I have had a shower though, I use Avon fresh hair extender, it keeps my hair looking ok for longer (up to 2 weeks) after a proper wash. Though they're discontinuing it now, grr!

I think the in your sleep thing becomes more common when you reach 30 and over, I've only started getting it more regularly the last few years.

I think a lot of women would be very envious of our 'problems'

I also get them in my sleep but they're not due to any meds, apparently it can be quite common. It usually wakes me and I know about it.

I always get the big O very quickly, it can be a few seconds to up to 30 secs *blush*

Guess we're just 'kind of' lucky lol

You may like to check your DHEA levels with a saliva test. Mine were low and when I took DHEA my sex drive improved enormously. Also check other hormones such as testosterone, oestrogen etc.

Thanks everyone. Made me feel more reassured.

Doctorguest: The scales send a small amount of electricity through your body to calculate water and fat.

Flop: I do take 1 1/2 tablets of florinef a day and I have upped salt though could perhaps up it a bit more.

I'll try not to worry then and just go by how I feel. I always feel thirsty though no matter how much I drink but that could be down to possible Sjogren's syndrome as I have dry eyes, mouth and nose anyway.

My mum's was moderate (47%) even though she doesn't drink a lot but she hasn't got POTS so I'm assuming they are accurate.

What tests do Dr's do to check body water?

I've just got myself one of those scales that measure body fat and water as well as weight.

I thought mine would be lower than normal because of the dehydration part of POTS that I suffer with quite a bit but I was shocked to see it was only 36% (it gave me a scale of Low as well as the %) Normal is 50%

I drink 3-3 1/2 lts of fluid a day which includes a sport type drink with salt and potassium in it. I eat more salty foods (I never used to eat or add salty foods before the POTS became bad) I'm on Florinef 1 1/2 tablets a day.

About 4-5 nights a week I pee about 3-4 times a night and there's loads, I don't drink at night. In the day it can vary from day to day, some days I pee every 2-3hrs, other times maybe every hour.

What I'm asking is other people's body water reading if they know it, is mine really bad despite I drink loads and take florinef and salt? Is it something I should be really worried about and should see my Dr about?

Excellent! So pleased for you. A lot of what you've said is so similar to me, you've given me hope when I had given up. Thank you.