[TMIC] celiac sprue/ did it cause your other problems?

Fri, 14 Apr 2006 06:48:20 -0700

Hi Everybody
 
I thought I would pass this on and it may help some of you in case you have some of these symptoms. My friend just got dx with this and she has had problems for years and there is a test for it. I hope this might help one of you.
Sally
NC
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I hope I'm not going to bore you all to death with this info, but I feel that I must get this info out to you just in case you want to check into it.
 
Celiac Sprue is then most common and one of the most under diagnosed hereditary autoimmune condition in the US today.  It is as common as hereditary high cholesterol.  It is a multisystem disorder whose primary target is the small intestine.  It is triggered by gluten, the main storage protein found in certain grains ( wheat, barley, and rye).  Gluten damages the small intestine so that it is unable to absorb nutrients properly.
 
Celiac Sprue effects 1 out of 112 adults and 1 out of 70 children yet it goes undiagnosed.  Doctors aren't aware of it's seriousness.   It is a disease that once you have it, it will never go away.  It's for life.  So if you had it as a child and were told you outgrew it...WRONG.   A delay in diagnosis increases the chances of developing associated autoimmune diseases, bone loss resulting in osteopenia or osteoporosis, anemia, malignancies, neuropathies dental defects, underactive spleen, infertility, migrains.
 
There are different classes of Celiac Sprue
1.  Patients that do not have "classic" celiac disease but a "silent" presentation.  They either have minimal or no gatrointestinal symptoms, but suffer from related autoimmune disease, complications from untreated celiac disease and/ or the manifestations of malabsorption.  Most are diagnosed in their fourth to sixth decade and have symptoms for approximately nine years prior to diagnosis.  Symptoms( fatigue, dental enamel defects, diabetes, anemia, itchy skin, peripheral neuropathies,( numbness and tingling in extremities, ) depression or infertility.
 
2. Sever or Classic Sprue - Classic is mild to severe symptoms that lnvolve the GI tract.  The severity of intestinal symptoms is directly related to the amount of intestine that is damaged.  Severe cases involve atrophy throughout much of the length of the small intestine and malabsorption affecting all nutrients.  If the malabsorption is severe, it may result in dramactic weight loss or vitamin deficiency.  Symptoms would include, diarrhea, cramps, bloating, lactose intolerance, increased reflux or general GI problems., (pain, fullness, pressure, indigestion)
 
3. Atypical - the inflammatory process and villous atrophy may involve only the upper part of the GI tract and may or may not progress very far down the small intestine.  People with thei condition may malabsorb a single nutrient susch as iron or calcium or Vit D ( in my case).  This leads to associated conditions such as anemia, osteoporosis.  You may have mild symptoms susch as reflux, bloating and indigestion.  You often get labled as having Irritable Bowel Syndrome IBS.
 
Everyone reacts differently.  The long term effects also range from the silent to the severe.  Many of us have kept going to drs and been labled a " nutcase".  Or they just write us a prescription for IBS or pain meds for migrains. 
 
I won't go into all the other details, but here is a list of what can manifest from this disease.
 
Intestinal problems - diarrhea, flatulence, reflux, pain bloating.
 
Malabsorption - vitamin deficiency, anemia, fatigue, calcium malabsorption leading to osteoporosis, protein and calorie malnutrition causing weight loss and musscle atrophy
 
Systemic Inflammatory Reactions and autoimmune diseases.  Neruopathies.
 
Malignancies - non Hodgkins lymphoma ( 7 to 9 times that of the general public), thyroid cancer, adnenocarcinoma of the small intestine ( my cousin has this), Lymphoma, esophageal cancer, melanoma,
 
Colitis, IBD ( Inflammatory Bowel Disease, IBS ( Irritable Bowel Syndrome) Crohn's Disease, Constipation, Chronic Fatigue Syndrom, Obesity, Balance disturbanace, epileptic seizures, migraines, dementia and brain atrophy, paralysis, depression, folic acid malabsorption, dermatitis herpetiformis, bruising (vit. K malabsorption,) eczema and psoriasis and Vitiligo, diabetes, infertility, lupus, Thyroid disease, Sjogrens, Addison's, autoimmune liver disease, cardiomyopathy, hair loss, Rheumatoid arthritis, fibromyalgia, Aphthous Stomatitis ( canker sores in their mouth), Multiple Sclerosis, ADHD ( Attention Deficit Hyperactivity Disorder, Autism, Raynauds, Genetic disorders ( downs, Turner syndrome, Williams syndrome and IgA deficiency.
 
There is no medication for this disease.  It is all handled by diet to let the intestines heal ( for life).  It is heridatary so first degree relatives ( grandparents, parents, siblings, children, grandchildren) and second degree relatives ( aunts, uncles, cousins, nieces, nephews) all shoud be tested.  It is a simple blood test (IgA Endomysial Antibodies (EMA) and Iga Tissue Transglutaminase (tTG) There are different kinds of blood tests so ask your doctor.  If you want the test and your dr won't give it to you, there are labs that will provide you with the test.  Just let me know if you want the address. 
 
Sorry to have gone on so long, there are pages and pages of info.  This is as far as I've gotten and if you want ot read more there are plenty of books.  I find it easier to read a REAL book then to look online.  My books were published in 2005 and 2006, so they are current.  Don't want to scare you, but remember, it can be a "SILENT" disease and better safe than sorry.
 
Claudia
 
 
 

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