Celiac/coeliac Disease And Dysautonomia

[Tanzanite]

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.

[maryfw]

I was tested for it earlier this year and tested negative. So atleast for me there is no relation between the two.

mary

[Tanzanite]

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.

[JenniferInOhio]

I had a borderline bloodtest and a negative biopsy.

[MomtoGiuliana]

Boy, with that list of symptoms 2/3 or more of the human population could have celiac!

[MightyMouse]

Catherine, some of the most prominent symptoms that are consistent among nearly all with ceoliac/sprue would be oily/fatty bm's in addition to problems with absorbing nutrients if long term/constant exposure to gluten, and gi inflamation and gi symptoms with exposure to gluten, even if neg biopsy/blood work. Even though my biopsy was negative, as was my blood work, my doc said he considers me to have celiac based on my medical history as well as my family origins (certain areas/communities of the world have a higher incidence than others). By the time i got to him i'd been gluten free for many years so he wasn't surprised i came in as negative on the tests. My guts weren't able to tolerate the gluten challenge he wanted me to do for several weeks before the blood work and scope--I never was able to get past a week or so without becoming too sick to continue to eat the gluten, despite how GREAT real pizza, bread, bagels, cookies, and pasta tasted.

As for celiac/dysautonomia link--here's the thing: if you stop eating gluten, nearly all symptoms should go away. If you have dysautonomia that's not linked to celiac, it's not going to go away by changing your diet to gluten free. When i eat gluten, I mostly get lots of bloating, gas pains, and gi distress. Even gluten free, I continue to have motility problems, so I've learned that the motility issue is core to my autonomic issues and not to celiac (for me).

Nina

[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.

[MightyMouse]

I'm surprised that in your area of the world, you weren't tested for Celiac-- it's pretty common in the UK, and that's why my doc tested me, b/c I have some Welsh in my geneology.

Nina

[Tanzanite]

They never test me for anything. I had to beg for a thyroid test!

[desiree942]

Yes, there is a connection! I was diagnosed with Gluten intolerance by biopsy and shortly there after develped severe othostatic intoleance/POTS. Dr. Grubb told me that any of the gastrointestinal autoimmune disorders such as chron's, celiac, etc... are a principal trigger of POTS in some people. This was definitely my situation. The gluten freen diet improved my gastro symptoms but NOT the autonomic dysfunction.

[desiree942]

This was a recent study that supports the link between gastrointestinal autoimmune disorders/autonomic neuropathy.

Asymptomatic neuropathy seen early in Crohn's disease

Source: Reuters

Author: Will Boggs, MD

Date: Fri, 7 September 2007

Subclinical sympathetic neuropathy develops early in the course of Crohn's disease, investigators in Sweden report.

"We think that the sympathetic neuropathy may be evidence that inflammatory bowel disease is a general disease involving a great part of the body, and not only the bowel," Dr. Bodil Ohlsson from Lund University, Malmo, told Reuters Health.

Dr. Ohlsson and associates compared autonomic nerve function in controls and patients with short-duration Crohn's disease at baseline and seven years later to determine whether neuropathy is a concomitant manifestation of the disease or a complication that develops many years later.

Resting blood pressure did not differ between controls and patients with Crohn's disease, but systolic blood pressure was significantly lower eight minutes into the baseline orthostatic tilt table test in patients than in controls, the authors report in the August 14 issue of BMC Gastroenterology.

At the seven-year assessment, the systolic blood pressure one minute into the orthostatic tilt table test tended to be lower in patients than in controls and after eight minutes the difference remained significant.

These orthostatic blood pressure changes were not associated with frequent relapses, severe disease, or use of aggressive immune modulating drugs. There were no differences between Crohn's disease patients and controls in the deep breathing test and laser Doppler perfusion imaging at baseline or at the second assessment seven years later, the investigators report.

"We should be aware that patients with Crohn's disease for many years may have clinical signs of autonomic neuropathy," Dr. Ohlsson said. "Further, we should be aware that these patients may have changes in the enteric nervous system explaining dysmotility in the absence of inflammatory relapse of the mucosa."

"Not all attacks of constipation or diarrhea are signs of inflammatory relapses, but can be signs of autonomic or enteric neuropathy," Dr. Ohlsson explained. "Thus, these changes ought not be treated by anti-inflammatory drugs."

BMC Gastroenterology 2007;7:33.

[helen.t]

hi folks, I just wanted to say that I was diagnosed with coeliac disease just over 3 years ago at age 46 after having been ill with obvious symptoms of it for the majority of my life. I then developed POTS symptoms at age 24 when I was pregnant with my 2nd child and have been chronically unwell since. Everything was put down to irritable bowel, anxiety, stress, depression and finally ME after the birth of my 3rd and last child 18 years ago. I struggled all my life to keep going as best I could by being careful with what I ate, taking numerous vitamin supplements and herbal remedies as well as pacing myself as much as I could but always under risk of total collapse if I got sick or overdid anything for weeks, months and even years at a time. Anyway, after I discovered I had coeliac for sure, I thought that my troubles would soon be rectified after my body adjusted to the gluten free diet but I'm most sorry and upset to say that my health has just continued to decline!! and in fact went totally haywire afterI started the diet. My digestive system doesn't work properly, I can't eat dairy foods and lots of other food including fruit and beef. They upset my stomach terribly. I have many symptoms of Dysautonomia and was dx with POTS 2 years ago although the docs say that I have obviously had POTS and celiac all my life. I don't know if the fact that I wasn't diagnosed with the Celiac sooner, maybe my health wouldn't be so bad now but no doctor wants to take responsibility for that!! and so I have been told that celiac has nothing to do with my POTS. But do you think I believe that?? Who knows?! I agree with the person who said that if we all went on a gluten free diet then our POTS/Dysautonomia symptoms should improve if it was connected. However, this has been completely the opposite in my case as my POTS symptoms got worse. It is a very confusing illness indeed and I don't think there are going to be any clear cut reasons why our bodies are the way they are. The only thing that is plain to me is that my body just doesn't function full stop and I have tried everything within my power and knowlege to help it!!!!! I wish everyone here on the forum all the best in finding concrete ways to manage this disabling condition!! I sincerely wish I could be more positive but I'm only going on my own experience.best wishes Helen

[desiree942]

Helen, You are not alone, My POTS sysmptoms got worse too once I started the GF diet. When I asked Dr. Grubb about this he explained it as part of the autoimmune process, he said removing gluten likely stopped the autoimmune process in my small intestine but then the autoimmune cells fought back by attacking and damaging my autonomic nervous system. Reserach has show that gluten intolerance/celiac DOES cause autonomic neuropothy in some people but unfortunately the gluten free diet does NOT reverse the autonomic neuropathy. BUT the bright side is that Dr. Grubb put my situation in the "abrupt onset" category of POTS which he said improved the odds of a reasonable recovery over time, and I have. Good luck to you!

Edited September 21, 2007 by flop
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