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Posted

I posted a longer explanation on Mobi's thread on Colon Cancer available here, slightly edited:

I came on this forum to talk about my newly realized wheat/gluten intolerance and possible Celiac Disease that has been completely overlooked and undiagnosed by my HMO Western doctor here in the states. I came on this thread with some trepidation and a lot of sympathy, and am relieved to hear of Mobi's negative diagnosis for Colon Cancer. However, I feel a lot of empathy because he is still suffering and has no diagnosis! That has been my case.

I want to tell you my recent health story, and you can make of it what you will. In the meantime, please do your own research on Wheat/gluten intolerance and/or Celiac Disease. It could save you a lot of suffering and trouble, not to mention a certain pathway to more serious disease.

I also had Giardia while in Thailand, and was treated twice at BNH for the same ailment with albenzole tablets. Everything seemed fine for awhile, and I considered it resolved. There are also multiple variables in Thailand that can be responsible for bad stomach and general maladies, which makes it hard to isolate to one thing. I returned to the US in October '06 and reverted to the largely forgotten diet of wheat products, grains, and bread, as well as milk and higher quantities of dairy. I had what I thought was a reoccurence of Giardia, because it is known to be intractable. So naturally, I returned to a clinic, where they had no clue of Giardia or Celiac Disease, which still wasn't on the radar. They didn't take a stool sample (no health insurance) but treated me twice with Flagyl for two separate conditions which warranted it at the time (suspected giardia, and something else, so I thought, why not two birds with one stone?). I was so incredibly sick, weak, and wobbly from the incredible strength and toxicity of the Flagyl, but thought it was necessary and important. I still wonder it it actually did the lining of my stomach serious harm.

At any rate, this was back in 2006 to early 2007, and a year later and to this present time I am still suffering. I visited an HMO doctor AGAIN exactly one year ago last spring, for the same stomach symptoms in addition to allergy symptoms such as sneezing, puffy eyes, etc. I didn't bother to tell him about joint pain, migraine headaches, bronchitis and brain fog because I didn't think it was related and hadn't yet put it all together. He again didn't test, suggested I was lactose intolerant, and only recommended over-the-counter medication for IBS. He said that my allergy symptoms were related to the high pollen count in D.C. I told him I don't take medication for symptoms and called it a day.

I put things together and determined that I had a milk allergy, and went back and asked him to test me. Allergic responses are different to lactose intolerance. Turns out that I did test positive for a milk allergy, and at the time he also commented that I was also slightly anemic, had a high white blood cell count, and some Candida in my blood. I didn't know what to make of this information at the time.*

Long story short: I cut out most milk products and did further research, but was still suffering with my stomach, excruciating pain, allergic response, joint pain, and migraine headaches. I never thought to put it all together, until I made the direct connection between my stomach and wheat products. Since then I did extensive research on Celiac Disease, and I fit every single response on a 20 point checklist. I have cut out wheat and gluten, which has had a dramatic and almost immediate effect on me. Celiac Disease is one of the most under diagnosed conditions in the States right now, and I'm sure in other places as well. Once you make changes, it is quite fine, but if you don't know and continue to eat wheat/gluten, it can have serious health consequences such as Diabetes 1, intestinal cancers, Lupus, debilitating joint pain, neurological conditions, heart palpitations, and shortening of life span.

I am still figuring this all out, and it is very hard to diagnose because it is under the radar, and also because by the time people make the gluten-wheat connection, they stop eating it and so it doesn't show up in a blood test or biopsy. I would highly recommend that you put this on your radar screen, ask to start out with IgA and IgG antibody tests if you are still suffering from an undiagnosed stomach mystery. And of course, do all of the necessary self-research and legwork first, because most doctors and health professionals are not prepared to recognize this as a condition.

The disease or intolerance can lie dormant or inconspicuous for a long time with subtle symptoms, and suddenly "speak" with certain trigger factors such as stress, age, etc. I think mine was a combination, with some of the stress triggers occurring in graduate school, with the possible infection of giardia and treatment with flagyl and reintroduction of wheat after a long break on a rice diet throwing me over the threshold.

I am still struggling, but it has helped me IMMENSELY to have an idea of the actual problem, and work to address that, rather than take more pharmaceuticals to treat undiagnosed symptoms which will almost certainly result in a serious disease down the line.

Find a trusted naturopath when Western doctors don't have a clue. And even then, you should always know more about your symptoms than them.

*added above: true milk allergies are rare and associated with Celiac Disease, and the combination of anemia, yeast, and abnormal white blood cell counts are strong indicators.

** by the way, wheat/gluten intolerance is an allergy with the same symptoms and treatment as Celiac Disease, but CD is an autoimmune disease where your immune system attacks the lining of the small intestines in response to gluten. It leaves lesions and scarring in your small intestines, is genetic, and has different pathways to disease than an intolerance.

*** I ate wheat and bread products my entire life like so many other Westerners, but didn't discover a problem until "trigger" events and what I think was almost the complete elimination of it on an Asian diet and reintroduction upon my return.

Posted

Helpful links and articles:

http://ezinearticles.com/?Irritable-Bowel-...e&id=229295

Irritable Bowel Syndrome May Be Due To Missed Celiac Disease Or Food Intolerance

http://www.medicinenet.com/celiac_disease/article.htm

http://www.csaceliacs.org/celiac_symptoms.php

http://www.celiac.com/

http://www.foodintol.com/wheat.asp

http://www.foodintol.com/wheat.asp

Celiac disease (CD) is also referred to as gluten sensitive enteropathy (GSE), gluten intolerance, or celiac sprue. It is considered to be the most under-diagnosed common disease today, potentially affecting 1 in every 133 people in the USA. It is a chronic, inherited disease, and if untreated can ultimately lead to malnutrition. Gluten intolerance is the result of an immune-mediated response to the ingestion of gluten (from wheat, rye, and barley) that damages the small intestine. Nutrients then quickly passed through the small intestine, rather than being absorbed. To develop celiac disease (CD) three (3) things must be present: 1) you must inherit the gene, 2) consume gluten, and 3) have the gene triggered. Common triggers may include stress, trauma (surgeries, pregnancy, etc.), and viral infections. Approximately 1 in 20 first-degree relatives could have CD triggered in their lifetime. The disease is permanent and damage to the small intestine will occur every time you consume gluten, regardless if symptoms are present.

To learn more about the recently published multi-center prevalence study of celiac disease visit, www.celiaccenter.org.

Symptoms

Celiac disease was once thought of a disease with only GI symptoms. It is now recognized that the disease is a multi-symptom, multi-system (organ) disease. Celiac disease also does not routinely present with the 'textbook' symptoms that physicians learn. More often it presents with symptoms that can mimic other problems.

Most physicians recognize the classic symptoms of celiac disease : diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps. Physicians may not be aware that celiac disease frequently presents with other symptoms, some that do not involve the small intestine. More often, symptoms can include constipation, constipation alternating with diarrhea, or premature osteoporosis. Overweight persons may also have undiagnosed celiac disease. Children may exhibit behavioral, learning or concentration problems, irritability, diarrhea, bloated abdomen, growth failure, dental enamel defects, or projectile vomiting. Others will have symptoms such as rheumatoid conditions, chronic anemia, chronic fatigue, weakness, migraine headaches, nerve problems such as tingling of hands or difficulty walking, or other conditions that are unexplained and/or do not respond to usual treatment. People may have one or more of the above symptoms. Patients are frequently misdiagnosed as having 'irritable bowel syndrome', 'spastic colon/bowel', or Crohn's disease'.

Diagnosis

Initial screening for CD is a blood test taken by your physician. The test can be referred to as a Celiac Panel or by the names of the individual tests. To provide the most accurate information,the blood test should include the following tests: anti-endomysial antibody (lgA EMA) and anti-gliadin antibody (lgA & IgG), and tissue transglutaminase (tTG IgA). These tests are very sensitive and specific for celiac disease. A gastroenterologist takes small intestine tissue biopsies if the results of the antibody test(s) are positive or he/she has a strong suspicion of CD. A biopsy showing damaged villi in the small intestine is the first half of the 'Gold Standard' to diagnosing CD. The second half of the 'Gold Standard' is improvement of health with the gluten-free diet.

It is possible, in some situations, to have normal blood tests and still have celiac disease.

Posted

http://www.foodintol.com/wheat.asp

What is the difference between Wheat Allergy and Wheat Intolerance?

For clarity they are NOT the same thing: Wheat Allergy is a severe sudden onset allergic reaction to a certain protein component of wheat. That is, it's an auto-immune response of the body. Usual symptoms are immediate coughing, asthma, breathing difficulties, and/or projectile vomiting. It can cause life-threatening responses in allergic people. See Anaphylactic responses.

Fortunately, true Wheat allergy is quite rare (less than ½ % of population). These people must observe a strict Wheat-free diet to remain healthy.

HOWEVER, most people who speak of wheat allergy are really referring to Wheat intolerance caused by Gluten - a very complex protein found in wheat and some other grains. It affects one in seven people or 15%.

Wheat Intolerance (Gluten intolerance)

Wheat Intolerance is when you have difficulty digesting wheat, which may seem less important. It is a slower onset but certainly involves the immune system.

Gluten intolerance appears as chronic symptoms like aching joints, gastro-intestinal problems, depression, eczema, low blood iron levels and others.

Wheat intolerance caused by Gluten (contained in Wheat, rye barley and oats) is associated with serious Health Risks like diabetes, bowel cancer, anaemia and osteoporosis.

If you think you might have Wheat or Gluten intolerance you can get proof by doing the Detection Diet - a simple and effective way to find out for sure - no drugs and no therapies.

Posted

Geez, Kat, sorry to hear about your problems- but glad to know you've isolated the causes & are getting better. Doesn't sound like doctors are helping you very much, which is too bad and sadly unsurprising.

"S"

Posted

Thanks IJWT. Long time no speak, but good to hear from you. I have been struggling, but I suspect others have been as well. This is something so overlooked with serious consequences for all of us to keep on our radar screen. It is just gaining recognition as a problem, so it will take some time for all of the associations and risk factors to become common knowledge. I wonder if those of us with dormant symptoms are more susceptible when we "remove" wheat and gluten products from our diets and then "reintroduce" them with less frequent Western diet or return back to Gluten land, or predominant Western diets.

Posted (edited)

One other thing: Chronic respiratory conditions such as bronchitis and pneumonia (which I just had a bout of this past winter, as well as a bad bout of bronchitis last winter) are also associated.

Sinusitis as well, and was left behind by my past pneumonia even after antibiotics.

Just a thought, people. Put this on your radar.

* added:

How Common Are Gluten Allergies?

Although no studies have been done on the prevalence of gluten intolerance, the prevalence of gluten allergies is certainly higher than that of celiac disease alone.

What symptoms may be caused by a gluten allergy?

* Abdominal Pain

* ADD/ADHD

* Anxiety

* Canker sores

* Constipation

* Diarrhea

* Fatigue

* Fibromyalgia

* Gas

* Headaches

* Heartburn

* Indigestion

* Infertility

* Iron deficient anemia

* Irritability

* Irritable bowel syndrome

* Joint Pain

* Osteoporosis

* Poor Growth

* Poor immune function (frequent illness)

* Sinusitis

http://www.raysahelian.com/celiacdisease.html

quoted:

"Celica Disease email from a person with this condition

As you know Celiac Disease is one of the most undiagnosed/misdiagnosed diseases in the U.S. I had to move to Germany to find out I had it! And only after two Doctor visits. Pretty amazing since I suffered for years and years (I was 42 at diagnosis) and no U.S. Doctor was aware of it and the many symptoms which are manifested. May I add the following for people who have one or more of the following symptoms: (I'll * the ones I had)

Headaches

Chronic sinus and/or respiratory infections*

Anemia

Constipation* /diarrhea

Joint pain*

Bloating*

Weight gain* /weight loss

Excessive gas

Abdominal pain*

Infertility

Miscarriage*

Neurological conditions

Osteoporosis

Chronic fatigue*

Weakness

Muscle cramps

Indigestion*

Steatorrhea* (common with undiagnosed CD)

Eczema*

Fuzzy-minded after gluten ingestion*

Burning sensations in the throat

Pot belly with or without painful bloating

Concentration* or behavioral problems

Failure to thrive in infants

Dental enamel defects*

Skin Rashes and Acne

Spastic colon*

Thyroid problems

(It's clear to see that gluten intolerance affects the entire body.) Many patients have been diagnosed with the following problems which have disappeared once the correct diagnosis of Celiac Disease was given:

Diabetes

Fibromyalgia

Lupus

Arthritis

Anemia

Liver problems

Lupus

Thyroid Disease

Dermatitis Herpetiformus

Chron's Disease

Spastic Colon

Irritable Bowel Syndrome

Osteoporosis

Celiac Patients are at greater risk for:

Anemia

Addison's Disease

Chronic active hepatitis

Alopecia Areata

Graves Disease

Diabetes

Myasthenia gravis

Lymphomas – non Hodgkins lymphoma (t cell and b cell)

Lupus

Sjogren's Syndrome

Scleroderma

Chron's Disease

Thyroid Disease

Fibromyalgia

The reason I was diagnosed so quickly (compared to the average 10 years for U.S. citizens) is because European Doctors are trained in nutrition and preventive medicine much more thoroughly. Rather than the 'pill' approach (Nexium, Zelnorm – their ad cries out Celiac Disease, Tums, Rolaids, etc. etc.) Rather than giving me constant antibiotics which I'd been given over the past 10 years, my Doctors here truly wanted to find out the underlying reason for My chronic rhinitis, sinusitis and bronchitis amongst the many other symptoms. Getting off of gluten was the best diet I ever went on. I eat gluten-free cookies, crackers etc. regularly but the weight fell off (30 pounds in 4 months) after going gluten-free!"

end quote.

Edited by kat
Posted

Here is another condition that is usually mentioned along with Celia (Coeliac) Disease, but apparently isn't caused by gluten. This could have wider implications for expats with chronic stomach problems (thanks to Sheryl for pointing out this detail about the differences with CD):

http://www.merck.com/mmhe/sec09/ch125/ch125d.html

Tropical Sprue

Tropical sprue is a disorder of unknown cause affecting people living in tropical and subtropical areas who develop abnormalities of the lining of the small intestine, leading to malabsorption and deficiencies of many nutrients.

*

This disorder might be caused by an infection, but the real cause is not known.

*

Typical symptoms include anemia, light-colored stools, chronic diarrhea, and weight loss.

*

A doctor bases the diagnosis on symptoms in a person who lives in or has recently visited one of the areas in which the disorder commonly occurs.

*

The antibiotic tetracyclineSome Trade Names

ACHROMYCIN V

TETRACYN

SUMYCIN

treats the disorder.

Tropical sprue occurs chiefly in the Caribbean, southern India, and Southeast Asia. Both natives and visitors may be affected, but children are rarely affected. The cause is unknown, but available evidence suggests an infectious cause.

Symptoms and Diagnosis

Light-colored stools, chronic diarrhea, and weight loss are typical symptoms of tropical sprue. Other symptoms of malabsorption of specific nutrients may also develop. A sore tongue develops from vitamin B2 deficiency. Anemia usually develops as a result of iron, vitamin B12, or folate (folic acid) deficiency, causing fatigue and weakness.

A doctor considers the diagnosis of tropical sprue in a person with anemia and symptoms of malabsorption who lives in or has recently visited one of the areas in which the disorder commonly occurs. X-rays of the small intestine may or may not be abnormal. An endoscopic biopsy (in which a tissue sample is obtained through a flexible tube and examined microscopically) of the small intestine can show some characteristic but not specific abnormalities. A stool sample may be analyzed to exclude parasites or bacteria as a cause.

Treatment

A person suspected of having tropical sprue is treated with an antibiotic. TetracyclineSome Trade Names

ACHROMYCIN V

TETRACYN

SUMYCIN

is given over several months. Nutritional supplements, especially folate and vitamin B12, are given as needed. Treatment usually results in a full recovery.

Posted

Hey Zorro:

Glad to see you here, reading the thread. I thanked you on Mobi's thread, for mentioning CD as a possibility. So few people think of it. I am now looking at the associations and differences with Tropical Sprue, which is often mention together with CD, but are obviously different.

Posted (edited)

Here's another link on issues associated with CD. SIBO or Small Intestinal Bacterial Overgrowth definitely caught my attention:

http://jccglutenfree.googlepages.com/notceliac

Not Celiac ? Co-Existing Conditions ? Refractory Sprue ?

The Gluten File

Clinical Aspects of Gastrointestinal Food Allergy in Childhood by Scott H. Sicherer, MD

Celiac Disease Treatment and Continuing Symptoms by Mary Anderies - Celiac.com

edited:

"Food-induced enteropathy: Cow's milk proteins and soy proteins can cause an uncommon syndrome of chronic diarrhea, weight loss, and failure to thrive, similar to that appearing in celiac disease. Vomiting is present in up to two thirds of patients. Small bowel biopsy shows an enteropathy of variable degrees with villous hypotrophy. Total mucosal atrophy, histologically indistinguishable from celiac disease, is a frequent finding."

eMedicine: Protein Intolerance

"Up to 20% of celiacs will continue to experience loose or watery stools even after going on a GF diet. Sometimes this is due to inadvertent gluten in the diet, but a recent study at Dr. Fine's medical center showed that in these cases other diseases epidemiologically associated with celiac disease are present.[7] These include microscopic colitis, exocrine pancreatic insufficiency, lactose intolerance, selective IgA deficiency, hypo- or hyperthyroidism, and Type I diabetes mellitus. When diarrhea continues after beginning a GF diet, a search for these associated diseases or others should be undertaken and treated if found." From Celiac.com

Conclusion: Celiac disease is the most common cause of malabsorption syndrome in both adults and children. These people harbor significantly more pathogenic parasites and are more frequently colonized with harmless commensals as compared to healthy controls. Intestinal coccidia are associated with malabsorption syndrome, particularly in malnourished children.

Parasites in Patients with Malabsorption Syndrome: A Clinical Study in Children and Adults.

PMID: 17763958 Aug 2007

[Focal villous atrophy of the duodenum in children who have outgrown cow's milk allergy. Chromoendoscopy and magnification endoscopy evaluation]

PMID: 17625280 June 2007

"The major cause of failure to respond to a gluten-free diet is continuing ingestion of gluten, but other underlying diseases must be considered."

"If a patient is not responding well to a gluten-free diet, three considerations are necessary: (1) the initial diagnosis of celiac disease must be reassessed;(2) the patient should be sent to a dietician to check for errors in diet or compliance problems, because problems with the gluten-free diet are the most important cause for persisting symptoms; (3) other reasons for persisting symptoms (eg, pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, protein-losing enteropathy,T-cell lymphoma, fructose intolerance, cavitating lymphadenopathy, and tropical sprue) should be considered.Other causes for villous atrophy are Crohn's disease, collagenous sprue, and autoimmune enteropathy. "

"Of the 15 patients, 10 had small intestinal bacterial overgrowth, 2 showed lactose malabsorption causing the described symptoms, 1 had mistakenly taken an antibiotic containing gluten, and 1 patient each had Giardia lamblia and Ascaris lumbricoides."

Monitoring nonresponsive patients who have celiac disease.

PMID: 16644460 April 2006

DIAGNOSIS, DIFFERENTIAL DIAGNOSIS, AND THERAPY: It is essential to exclude alarm symptoms. IBS can be positively diagnosed with a sensitivity and specificity of > 90% by standardized questionnaires. Indications of PI-IBS are the acute onset of symptoms, fever, vomiting, diarrhea and/or positive stool culture. Differential diagnoses include lactose intolerance, small bowel bacterial overgrowth, bile acid malabsorption, celiac disease, giardiasis, chronic inflammatory bowel disease, collagenous colitis, and diverticulitis.

[Functional and inflammatory bowel disorders]

PMID: 16802539 Mar 2006

CONCLUSION: In patients with celiac disease partially responsive or unresponsive to GFD, SIBO and lactose intolerance should be suspected; appropriate investigations and treatment for these may result in complete recovery.

Partially responsive celiac disease resulting from small intestinal bacterial overgrowth and lactose intolerance. PMID: 15154971 May 2004 FULL TEXT

High prevalence of small intestinal bacterial overgrowth in celiac patients with persistence of gastrointestinal symptoms after gluten withdrawal.

PMID: 12738465 Apr 2003

"Of the 49 patients with celiac disease, 25 were identified as having gluten contamination. Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue. "

Etiology of nonresponsive celiac disease: results of a systematic approach. PMID: 12190170 Aug 2002

Giardia lamblia infection in patients with irritable bowel syndrome and dyspepsia: a prospective study. PMID: 16610003 Mar 2006

Giardiasis in patients with dyspeptic symptoms. PMID: 16425362 2005

Helicobacter pylori Infection in patients with celiac disease.

PMID: 16780559 Aug 2006

Edited by kat
Posted

http://www.csaceliacs.org/library/whythyroid.php

Thyroid Disease: Why Do Celiacs Have It?

Patricia Daly, M.D., Endocrinologist, Harvard Medical School

CSA Annual Conference, October 1998, Warwick, RI

http://www.mayoclinicproceedings.com/pdf%2...5%2F8005cr2.pdf

Cardiomyopathy Associated With Celiac Disease

CASE REPORT

NISHEETH K. GOEL, MD; ROBERT D. MCBANE, MD; AND PATRICK S. KAMATH, MD

From the

http://www.ncbi.nlm.nih.gov/pubmed/12045166

Celiac disease associated with autoimmune myocarditis.

Frustaci A, Cuoco L, Chimenti C, Pieroni M, Fioravanti G, Gentiloni N, Maseri A, Gasbarrini G.

Department of Cardiology, Catholic University, Rome, Italy. [email protected]

http://autoimmune.pathology.jhmi.edu/whatis_spectrum.cfm

John Hopkins Autoimmune Disease Research Center

http://www.celiacdiseasecenter.columbia.ed...of_adult__1.pdf

Characteristics of Adult Celiac Disease in the USA:

Results of a National Survey

Peter H. R. Green, M.D., Stavros N. Stavropoulos, M.D., Sofia G. Panagi, M.D., Susan L. Goldstein, M.A.,

Donald J. McMahon, Ph.D., Habibul Absan, M.D., M.Sc., and Alfred I. Neugut, M.D., Ph.D.

Department of Medicine, Columbia University College of Physicians and Surgeons, and School of Public

Health, Columbia University, New York, New York

http://www.ncbi.nlm.nih.gov/pubmed/16084665

http://www.journals.elsevierhealth.com/per...003300/abstract

Long-term sleep apnea as a pathogenic factor for cell-mediated autoimmune disease.

Abrams B.

221 Linden Drive Elkins Park, PA 19027, USA. [email protected]

BACKGROUND: Previous medical literature has shown that cell injury from hypoxia, such as that induced by sleep apnea, leads to hyperuricemia. Furthermore, a recent study has shown that when hyperuricemia reaches sufficient concentration to precipitate as monosodium urate, a T-cell immune response is triggered. The frequent repetition of this cell injury and immune response over a prolonged time, as would occur with long-term sleep apnea, may lead to the development, continuation, or aggravation of autoimmune disease. HYPOTHESIS: Long-term sleep apnea is hypothesized to be a pathogenic factor in the development of cell-mediated autoimmune disease. Several corollaries are presented along with this general hypothesis. First, some of the diseases associated with sleep apnea may have an autoimmune etiology. Second, some autoimmune diseases not usually recognized to be associated with sleep apnea may indeed have that association. Third, resolving sleep apnea in some patients with autoimmune disease to remove that autoimmune stimulus may aid in deceleration, halt, or even reversal of the progress of the autoimmune disease. Fourth, because monosodium urate also causes gouty arthritis in some individuals, diagnosis of gout may allow for resolution of sleep apnea early enough to prevent autoimmune development. Fifth, allopurinol, which suppresses uric acid generation, may be an effective therapy for the remission or prevention of a number of autoimmune diseases. CONCLUSION: This hypothesis strengthens the evidence pointing to the danger of unresolved sleep apnea by a mechanism previously unrecognized, namely the risk of developing an autoimmune disease. As a result of this realization, new therapies may be adopted for the treatment and prevention of autoimmune disease, specifically, resolving sleep apnea and the use of allopurinol.

Posted

My grandma's been at me for months to get tested for celiac. She said that my aches and cramps and peeling tongue and reflux and intestinal candida and abdominal bloating are all signs of having it - and she should know, she was diagnosed with it about 20 years ago. Now, she's about 85, stays away from all gluten products and is completely healthy.

I've been going on the "stress" diagnosis for the past year, and haven't paid the celiac possibility much notice, but Kat's posts have got me wondering if I could get tested for it in Bangkok - does anyone know if there are there any doctors who have experience with this disorder?

Cheers,

TT

Posted

It's hard enough to get tested and/or a proper diagnosis here in the States! But, I hear that the medical profession in Europe and in particular Italy is much more clued into it. You should visit: http://www.celiac.com/

They also have an international list for doctors.

Posted (edited)

http://www.sciencedaily.com/releases/2003/...30212073309.htm

edited:

Largest Study Ever Finds That One Out Of Every 133 Americans May Have Celiac Disease

University of Maryland Center for Celiac Research

ScienceDaily (Feb. 12, 2003) — Although serious conditions ranging from diabetes, anemia, short stature, infertility, Down syndrome and diarrhea can all be associated with celiac disease, few people in the U.S. have heard of it. A new, multi-center study led by the University of Maryland Center for Celiac Research in Baltimore finds that celiac disease is much more common in this country than previously thought.

For the study, published in the February 10, 2003 edition of Archives of Internal Medicine, researchers screened more than 13,000 people in 32 states.

"We now believe that more than 1.5 million Americans suffer from celiac disease, making it twice as common as Crohn's disease, ulcerative colitis and cystic fibrosis combined," says Alessio Fasano, M.D., the study's principal investigator and professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine.

"Symptoms of celiac disease vary among individuals," says Dr. Fasano. "It can be a difficult disease to diagnose because symptoms can include anemia, osteoporosis, diarrhea, and constipation. Alternatively, there may not even be any symptoms." Dr. Fasano's preliminary studies found celiac disease in about 1 out of every 150 people. "This new study demonstrates that celiac disease is just as common in the U. S. as in Europe, which makes sense since there is a genetic link to the disease and many Americans are descended from Europeans," says Dr. Fasano, who also heads the division of pediatric gastroenterology at the University of Maryland Hospital for Children.

He adds, "We hope this study will change the perspective of the health care community and that physicians will be more likely to test their patients for celiac disease."

Celiac disease is an autoimmune disease, just like diabetes and rheumatoid arthritis. "There are two elements that play together for someone to develop an autoimmune disease. You must have a genetic predisposition and there must be some environmental factor to trigger the disease," explains Dr. Fasano. "Celiac disease is the only autoimmune disease where that trigger is known. That trigger is gluten." Dr. Fasano adds, "This study is also very important to the scientific community because researchers will now be able to use this data on celiac disease to help uncover what causes other autoimmune diseases."

*added: http://www.sciencedaily.com/releases/2003/...31231084025.htm

Gluten Intolerance No Longer Considered Rare

ScienceDaily (Dec. 31, 2003) — ROCHESTER, Minn. -- Until recently, doctors thought that celiac disease -- an intolerance of gluten (a protein in wheat and other grains) -- was rare in the United States. That perception is changing. A recent Mayo Clinic study found a dramatic increase in the number of cases of this disorder. The group most affected is women in their 40s, 50s and 60s.

The January issue of the Mayo Clinic Women’s HealthSource

Edited by kat
Posted

http://www.celiac.com/articles/1085/1/Glut...RACP/Page1.html

Gluten Causes Brain Disease! By Prof. Rodney Ford M.B., B.S., M.D., F.R.A.C.P.

Is gluten a neurotoxin?

http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf

Gluten sensitivity: time to move from gut to brain

Dr. Marios Hadjivassilou and Dr.

University of Sheffield

http://findarticles.com/p/articles/mi_m0IS...Dec/ai_94538644

Gluten intolerance: a paradigm of an epidemic

"CD is most commonly misdiagnosed with conditions such as; anemia, irritable bowel syndrome/disease, psychological stress, diarrhea, diabetes, spastic colon, ulcers, viral gastroenteritis, Chronic Fatigue Syndrome, allergies, parasite infection, gall bladder disease, thyroid disease, colitis, and lactose intolerance. Dr. Vijay Kumar, a leading CD researcher,

reports that the majority of CD patients had visited 5 or more doctors prior to diagnosis and that it had taken an average of 5 to 10 years, after initial presentation, for CD to be diagnosed."

Posted

Had pretty mch identical symptoms a decade or so ago, and life basically ground to a halt.

Went off all gluten grains & dairy - then eventually all grains period - and symptoms disappeared, and have stayed gone.

(Put a friend bed-bound with MS on a grain and dairy-free diet; within months she was shopping, walking on the beach, etc; and today the scans can't even find her brain lesions.)

We are not a grain-eating species. As pre-humans & then humans, we were adapted over a million years to a diet of meat, vegetables, nuts, tubers & roots, and low-sugar fruit. (And a bit of wild wheat or the like from time to time - but a bare fraction of today's consumption.) The introduction in the last evolutionary eye-blink (~10,000 years) of grains & dairy in large quantities is not something to which we have had the time to get very genetically adapted. (Our genome has changed only .02% since the Ice Age of 40,000 years ago.) That is why gluten grains & dairy are the world's no. 1 & 2 food allergens.

There is a spectrum of sensitivity: grains & dairy will kill some people (as they would likely have killed me by now), whilst others appear to have a high tolerance. But all will thrive better without eating them in any serious quantity.

Posted

Thanks for your insights, Robroy. I have been doing a lot of research, and the history of grain consumption and the earlier diagnosis of Tropical Sprue before

WW II in the United States if fascinating. I have just begun the learning curve of proper diet, and it's going to be a long one.

I look forward to staying in touch. I will PM you at some point.

Kat

  • 4 months later...
Posted

I'm generally familiar with the diet content issues raised above...and certainly those relating to gluten grains such as wheat.

But to Kat (in general) and another poster (who talked of a grain-free diet), I have some questions:

1. I have not read or heard of any potential negative health problem related to the eating of brown rice. It, like white rice, is gluten free. And brown rice has the advantage of having a low glycemic index, meaning it doesn't contribute to elevating blood sugar levels, unlike its counterpart white rice, which is much more quickly absorbed. Likewise, I haven't heard of brown rice contributing to allergic responses. So, why should/would anyone want to avoid brown rice?

2. I've read a lot about the status of oatmeal, but have had a hard time trying to come upon clear guidance. On the one hand, its widely reputed to have a positive effect on cholesteral levels. On the other, I gather it does contain some gluten. But from what I've read, it may or may not be a problem for people with CD and/or gluten intolerance. As best as I could discern, it seemed to be OK for some people and a problem for others, depending on individual circumstance. Does anyone else have a better handle on the status of oatmeal relative to CD and gluten allergies?

Thanks.....

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