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Celiac Diagnosis: Why Do One in Four Suffer a Decade or More?


Celiac.com 09/02/2010 - About a quarter of people who suffer from celiac disease or gluten intolerance spend a decade or more complaining to doctors before receiving an accurate diagnosis, according to a poll conducted by Coeliac UK.

According to the poll, nearly 25 percent of sufferers consulted doctors about their symptoms for over a decade, while eleven percent of people with celiac disease sought help from doctors for over 20 years before receiving a proper diagnosis.

People with gluten intolerance and celiac disease often suffer from persistent diarrhea, bloating and abdominal pain that is triggered by the body's immune system fighting gluten as a foreign invader. Women are twice to three times more likely to develop celiac disease than men.

The poll also revealed that nearly 60 percent of the nearly 1,600 poll respondents had also been mistakenly diagnosed with anaemia, without even a follow-up test. Almost six in 10 were misdiagnosed with irritable bowel syndrome.

Women being to there times more likely to develop celiac disease than men, coupled with 60 percent general misdiagnosis for irritable bowel syndrome means that women are likely being disproportionately misdiagnosed with irritable bowel syndrome.

Doctors also commonly misdiagnosed gluten intolerance and celiac disease as anxiety and depression, gastroenteritis, gallstones, ulcers, ME or chronic fatigue syndrome and appendicitis. Many patients reported being accused of being hypochondriacs.

Not surprisingly perhaps, one in three respondents rated their GP's knowledge about the disease as poor or very poor.

Coeliac UK's CEO Sarah Sleet said guidelines from the National Institute for Health and Clinical Excellence (Nice) should be pushing up rates for celiac diagnosis.

'But with around 500,000 people currently undiagnosed in the UK there is still a long way to go and it will be another 30 years at the current rate of progress before we crack the problem,' she said.

As celiac disease runs in families, the Nice guidelines also encourage screening for blood relatives, yet nearly 8 out of 10 people polled said this had not occurred in their families.

Why do people with gluten intolerance and celiac disease have to wait ten or twenty years or more to get properly diagnosed?

How long did you have to wait? How did your doctor do with diagnosis? Slow diagnosis? Misdiagnosis? Tell us and we'll be sure to include some of your responses in a follow-up article.

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52 Responses:

 
Glenn Ribotsky
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said this on
02 Sep 2010 4:08:07 AM PST
Think the under-diagnosis might have to do with the fact that the only treatment for the condition is dietary, and not only are physicians generally woefully undereducated about diet but the profession does not stand to make money by diagnosing celiac/gluten sensitivity, as there are no drugs/procedures to prescribe for it?

 
Ginger
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said this on
06 Sep 2010 5:21:31 PM PST
That is it exactly! Shameful, but true.

 
eman mohamad
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said this on
12 Sep 2010 1:32:59 PM PST
That's right...one doctor I talked to said that only very educated people can follow a gluten free diet!

 
Alexis
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said this on
13 Sep 2010 2:37:18 PM PST
I agree there definitely should be a medicine that you can take for it. I'm 14 and I just found out I have it and I just started the diet.

 
Teresa
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said this on
27 Dec 2010 10:37:05 PM PST
I see many love to point fingers, but the fact of the matter is that it was misdiagnosed because it was misunderstood. When I was in my medical program just 10 years ago the classic description was that of a wasting disease with severe diarrhea as the main symptom, failure to thrive, etc. There are so many other presenting symptoms that masked the actual source of the problem, that doctors were simply unaware. I predict that in the next ten years new medical grads will be much more informed. Remember, rare things happen rarely, and for a long time this was thought to be rare. I practice medicine, and I'm good at it. But the information just wasn't there, and it takes a long time to spread. Also, look at the shortage of GI physicians that exist... there aren't enough to do standard cancer screens, not to mention endoscopies on people presenting with sx that don't seem GI related. Take it upon yourselves to educate your families, neighbors, businesses, market owners and medical professionals, and watch your community change for the better, right before your eyes. None of my 5 siblings or 30 first cousins even want to be tested... they don't want the answer I got! I don't have ANY GI symptoms. Maybe someday there will be a treatment, but as is the case with many autoimmune problems, mostly they prevent symptoms. We are among the lucky ones because at least there is a cure to this: don't ingest the offending substances. Imagine if it were Multiple sclerosis or Rheumatoid Arhritis.... And FYI - most of us don't go into medicine to make money... we do it to help people and advance science.

 
Krista
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said this on
02 Sep 2010 5:32:05 AM PST
My first symptoms appeared in early childhood. I was suddenly clumsy (ataxia) and developed Dh that was misdiagnosed as many different things over the years from poison ivy to atopic dermatitis, the skin equivalent of IBS. Since home life was not good all stomach issues were 'nerves'. In the last 15 years before diagnosis I became extremely ill and was thought to have everything from MS to 'you want to be sick' to 'it's all stress. My neuro considered my brain lesions to be insignificant and my GI never listened when I told him I woke every night for 2 to 3 hours of excruciating pain when my system cleared itself. I was finally diagnosed at age 46, 6 months after my dear daughter told me the family would understand if I killed myself. She was only 14 and my children grew up literally watching their mother die day by day. Am I still angry and mistrustful of doctors? You bet. It was 40 years from first symptom to diagnosis for me. If I had all the money we paid for testing and drugs over those years I could now buy my own island instead of struggling to survive because my college education was cut short leaving me in my 50's only minimally able to support myself. We desperately need to get knowledge of this disease and full screening in the US. It would save millions of health care dollars and many, many lives.

 
Debra
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said this on
06 Sep 2010 6:29:20 AM PST
Krista - my story is quite similar to yours. I found out at 42 years of age after suffering terribly my entire life. I was extremely angry at first. As I tell people "celiac disease does not bother me, it's that I spent a life time so sick & developed many other health issues that plague me daily". It all could have been prevented. Two of my children were born 2 & 3 months premature, now they know why!
I do know diagnoses is getting better, which is encouraging - but we still have a long way to go. A rheumatologist was the doctor that diagnosed me 6 years ago - I think of him often and what a blessing it was that I ended up in his office. I often wonder if I would have had a diagnoses yet or not if I had not happened upon him. My endoscopy showed severe atrophy of the small intestine - the gastroenterologist said I definitely had it as a young child. I also had iron deficient anemia as young as 7 & 8 years of age.
I am encouraged with the amount of publicity Celiac Disease is getting and realize the day is coming that people no longer end up spending a lifetime sick & spending undo dollars trying to find out what is wrong. However, that said...I do think people viewing this as a fad diet is comical! I would love to go shopping with them & see if they really are educated at reading labels, including everything we put into our mouths ex; medications, etc.
Thanks to Celiac.com and many other great celiac websites, we are all gaining more knowledge everyday.

 
Edith
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said this on
11 Oct 2010 10:16:20 AM PST
Well, my story is very similar. I started suffering when I was 5 and got my appendix taken out, was that necessary? I guess I will never know. But since then, I have been sick all the time. Every year my parents took me to another "specialist" who put me on another diet but the troubles continued. At age 13 I had seizures. being adopted everybody thought I was depressed, I was sent to the hospital in so many occasions with very bad anemia, so bad that at one point I needed 3 transfusions to get back to normal. Always tired, sick, with pain. I had dermatitis heprpetiformis, no one knew what was wrong with me. After my older son was born, I ended up at the hospital again. I am 5'5" and my weight was 80 lbs. Doctors thought I had leukemia, then diabetes, and for a week they did all sorts of tests and they were still puzzled. But of course, they will feed me crackers.
Finally on day 5, the gastroenterologist came into my room and said he thought I could be celiac. Did the endoscopy and finally got my right diagnosis.
Sometimes doctors are so quick to "judge" us instead of listening and paying attention. I suffered all my life but now I am healthy and happy. It has been 21 years since I have been diagnosed and since then my life changed. Following a gluten free diet is great! yes, at the beginning can be a bit challenging but let me tell you the benefits far outweigh the troubles. A gluten free diet keeps you healthy and you will be able to enjoy eating again and feeling so good with your body and yourself.

 
Carol
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said this on
07 Sep 2010 9:01:42 AM PST
I don't know you, but (BIG hugs to you Krista)!!! And Hear! Hear! about getting knowledge out about CD!!! I was misdiagnosed with IBS 10 years ago - I didn't have diarrhea - I was constipated, severely!!! Soooo the GI specialist never tested me for celiac. She said eat more fiber and whole grains - yep, almost killed me!!! And this was a GI Specialist!!! Doctors need more education on CD and encouragement for screening!!! Be well and thank you for sharing your experiences!

 
Lisa
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said this on
21 Jan 2011 4:42:03 PM PST
To Carol: I too have an issue with constipation and have had for years.I have been lactose intolerant for years (maybe even lifelong) I am 44 years old and just diagnosed with celiac disease. I am anemic. I am trying to read every article I can to educate myself. So I can eat and not be miserable. I pray for all who suffer. Good luck and God bless you.

 
Albert
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said this on
02 Sep 2010 12:50:56 PM PST
In my opinion it is conspiracy. Doctors are following standard procedure without using brain (most of them have a little of it). Gluten is driving engine of US economy. Public would learn of toxicity of gluten, would create panic. That is why doctor do not in diagnostic instruction testing for gluten intolerance. Governments were able to make cigarette smoking deadly, despite it is not as bad as gluten, which depress immune system. Than all bacterias, viruses and other germs have free ride. I am 75 years old; smoking package cigarettes a day. Despite of all in addition eating read and fat meat, I am in perfect health with normal weigh; blood pressure in range 75/120. I do white water kayaking, bicycling and other outdoor activities. However, I am gluten free last 15 years.
For everything is one reason only. In this case it is governments conspiracy. If they can do with smoking, they could do same wit gluten.
Best wishes to you all!

 
Jen
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said this on
02 Sep 2010 4:08:19 PM PST
Looking back I've had symptoms most of my life but was simply told by mom that I had the family stomach and it was "normal" for us. It didn't occur to me to say anything to a doctor until I was 40. At that point I was very ill and had tried everything I could come up. Gave up coffee, after all it is hard on the stomach, nope, how about dairy, didn't help, must be stress, but hmm life is good other than being miserably sick so that can't be it. Time to go to the doctor. She said what most do with one MAJOR exception. It is probably IBS but lets do a blood test to make sure it isn't celiac. I'm sure it isn't but it is more common than we used to think... One week later I had a biopsy and confirmed what the blood test said. Since then (3 whole months) I've been eating gluten free and feeling much better, except when I get cross contaminated that is.

 
Cindy
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said this on
03 Sep 2010 4:26:44 AM PST
Doctors don't make any money from us purchasing gluten free food. They also only received 20-30 minutes of education on celiac in the seven years of medical school! No wonder they can't figure out what is wrong. We have to do this research ourselves. With the internet at our hands, get to work! I,too, went misdiagnosed for over 15 years. I was convinced along with my family I was a hypochondriac. I am not and now they all know, there really was something wrong. Pay attention to what your body is telling you.

 
Jon
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said this on
03 Sep 2010 8:44:16 AM PST
My son was finally diagnosed with celiac when he was 17 and missed most of his senior year of high school. He was lethargic and could hardly get out of bed. When ever he would eat gluten he would get sick to his stomach but we never made the association with wheat, rye or barley.
Finally his doctor, who coincidentally had a brother who suffered from celiac disease, suggested a blood test. When it came back positive she suggested that the rest of the family be tested and I discovered that I have it too.
I was 52 at the time and had been suffering from dermatitis herpetiformis for about ten years. I had been to both an internist who referred me to a dermatologist. She took a biopsy and said that it was related to eating foods with yeast such as beer, blue cheese and bread. I cut those items out of my diet, yet the sores persisted until my son was diagnosed.
We then immediately went on a gluten free diet and our symptoms disappeared. My son is a healthy junior in college living independently cooking for himself.
I attribute early misdiagnosis to lack of awareness of the disease not some cynical plot that doctors may have because they can’t prescribe a costly pill to solve the problem.

 
skRN
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said this on
06 Sep 2010 2:18:30 PM PST
You are so right. I believe it is now getting a wider attention and there is a greater awareness even in the food industries. You can get gluten free cereal, pasta, even medications have it on their labels. I'm sorry for those who feel it is a plot among doctors because they "don't make money off their disease." I see patients get tested for this disease all the time in my field, I'm sure it's because of a greater awareness.

 
Allie
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said this on
04 Sep 2010 5:36:01 PM PST
I think the slow and under diagnostic numbers are due primarily because physicians are given so little, if any, information about celiac sprue in school. They also don't pay much attention to dietary needs other than vitamin/mineral deficiencies. I was symptomatic from birth and not diagnosed until I was 50, at my suggestion to my doctor. I suffered all of the typical diagnoses people get when their physicians can't figure out what's wrong.
While this may not have a huge impact on getting people diagnosed sooner, I was adopted from a state that continues to keep adoption records sealed. Considering the hereditary aspects of celiac, the monetary burden a slow diagnosis puts on health care and the patient, and the suffering of patients and families, perhaps we need to consider mandated testing. It's true that a disease that's treated almost exclusively via nutrition might influence some physicians' actions, I believe that most doctors go into medicine to help people and consciously avoiding a diagnosis that is treated by diet alone is not the primary reason behind slow diagnosis.

 
Regina
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said this on
05 Sep 2010 11:34:14 PM PST
I suffered 26 years. Before that, doctors in Brazil even sent me to psychologist/psychiatrist, thinking that I was a hypochondriac and that no one experiences so many symptoms at once. A dermatologist found out... go figure!

 
Ann
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said this on
06 Sep 2010 6:22:55 AM PST
This is an excellent article. I have 17 people in my family with either celiac disease or dermatitis herpetiformis. My sister has been dignosed since 1962 after many years of illnesses. We have several in that group with gluten sensitivity which is harder to get diagnosed than celiac disease. We are all doing very well on the gluten free diet and instead of complaining I am telling my family to be thankful for all the new foods and information.Be proactive with your Dr.Take info with you from Dr Joseph Murray of the Mayo Clinic.He put my family in a study.It is a healthy diet and I am healthy on it.Also,this is a wonderful website. Cudos to Celiac.Com.

 
Janice Morris
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said this on
06 Sep 2010 6:34:16 AM PST
All my life I suffered from stomach problems. When I was just a baby, my Mother was told that I was allergic to wheat. Supposedly, I outgrew this "allergy". I was told I had IBS, nerves and things I can't remember. At one point I was treated like a hypochondriac housewife. I just knew there was something wrong and I wanted to fix it and feel good. Through the years, the bouts were on and off until the summer/fall of 1991. That's when I became so incredibly sick and was unable to eat the least little bit of food without suffering constant diarrhea. I was experiencing excessive weight loss, very low blood pressure and severe leg cramps. I was so anemic they thought I was bleeding internally. At one point I lived on nothing but jello. I had never heard of this disease and didn't associate the fact that every time I ate a piece of toast it would start all over again. My children were afraid to even hug me due to my extreme frailty. Finally, my family doctor started consulted with an associate - a gastroenterologist - about my case. The gastro doctor said that it sounded like what he called "tropical sprue" but said that it was very rare disease. Long story short, I collapsed at work and ended up in the hospital and they decided to do two tests - a bone marrow biopsy and an endoscopy. Fortunately for me, when the gastro doctor saw me (he said I looked like a concentration camp victim) he decided to do the endoscopy first. FINALLY - a diagnosis - you have Celiac Sprue. That was January, 1992 and it hasn't been an easy ride but at least I feel good. Since then, a sister, a cousin and her two sons were diagnosed with celiac. Now one of my nieces is being checked for this disease as the reason for all of her problems (after I wrote a letter to the hospital - a teaching hospital by the way which I won't name). Doctors know nothing about this disease and I think it should be the first thing ruled out especially in a family with so much history. With all the information out there now no one should have to suffer for years. I was 42 when I was diagnosed in 1992.

 
Brad
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said this on
06 Sep 2010 7:43:34 AM PST
I had a decade of misery. My doctor's niece started a gluten-free restaurant so he suggested I try the diet to see if it would help. Happy coincidence for me. And my daughter, who was developing similar symptoms.
The problem is a general lack of knowledge, which is changing. Gluten-free food manufacturer are becoming more common and profitable. They'll be the ones driving awareness.

 
Roselyn
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said this on
06 Sep 2010 9:04:37 AM PST
I was not diagnosed until I was 60, after years (over 30) of 5 GI series, being told it was my nerves (I'm a calm person), etc. They discovered a stricture in my esophagus, so a doctor doing an endoscopy discovered that I had no villi and diagnosed me and blood test was positive. Going so long without being diagnosed, I also developed collogenous colitis, so I feel wonderful but still have diarrhea. I never did feel bad, other than always scoping out the nearest bathroom, and being very thin and anemic. I am now a normal size and have loads of energy.

 
Lisa Mcgrath
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said this on
06 Sep 2010 9:51:18 AM PST
I suffered for over 20 years until I was diagnosed as celiac. I can remember when I was very little being sick all the time and my Dr telling my mom that I just had a nervous stomach! As a young adult my stomach always hurt and I would go to the washroom 10+ times a day.. I finally found out the reason when I was 36 years old. I am so thankful that I found out and could start healing, but I wonder what damage could have been prevented. I am also a diabetic and have an autoimmune thyroid condition which resulted in my thyroid being removed.I most likely would not have those conditions if this was found out when I was little.

 
Karen
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said this on
06 Sep 2010 12:20:15 PM PST
Good lord, it took 45 1/2 years before a doctor diagnosed me with celiac, and then I had to request the test, myself. He laughed at me, initially, until the test results came back. And I have been to so many doctors over the years, I've completely lost count of how many failed to help me. Come on, who had really heard of celiac Disease until about six years ago? It wasn't in the mainstream media. Since I was 17 years old, I researched diligently to find out why in the heck I felt so bad most of the time, but my symptoms were all over the page. My personal library is full of books on medical conditions, with little if anything written on celiac Disease. And I never considered I had the disease until I prayed about my problem and then read an article on About.com regarding a connection between Hypothyroidism and celiac disease in early 2005. (So, lovely, now I have not one but two diseases.) I suppose we give doctors too much credit for being intelligent and looking out for our well being.

 
Sherida
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said this on
06 Sep 2010 12:45:31 PM PST
Article worth contemplation, but I have few complaints as I had only been having symptoms about 7 yrs. before diagnosis at age 60. It was after I retired from teaching early, went through menopause with various sleep disruptions, and refused to take various hormone treatments that I was finally tested as Hypo-thyroid. After this was treated with Synthroid, I still was having diarrhea symptoms, especially after eating oatmeal, so I stopped that. My thyroid seemed stable, but was still treated for severe acid reflux, with endoscopes every 2 yrs. Finally, my GP referred me to my GI doc when blood tests showed anemia. They both were looking for celiac when I was diagnosed in '07.
The endoscopy included a biopsy, pictures of flattened villi, and the celiac sprue blood antigen test. I sometimes still have symptoms, but once I ate gluten free I've taken the blood tests & been normal (3)every time.

 
mindy
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said this on
06 Sep 2010 1:43:31 PM PST
As a child I had stomach aches, but I didn't like a lot of the foods other ate. I ate Rice Krispies, not Wheaties, I never ate pizza, just liking the cheese on top, and I never ate sandwiches, liking salads better. Pasta, only rarely, not something I liked. Was it instinct? I don't know. However, I never met a brownie I didn't like, and quite a bit of gluten still came my way, with my delight.


I had skin problems, and my father said I was chubby, though now looking back I see a bloated belly. I didn't do sports like the rest of my family. I was a bit depressed as a teen.
But generally, I was smart and well liked. Life seemed "normal."

Looking back everything takes a different tone. My height is less than the rest of my family. My legs always felt weak (from poor nutrient absorption). My pimples on my chin were all related to nutrition troubles, poor absorption.

At 35 I had a terrible fracture of my foot /ankle while playing touch football game with parents and kids. I asked them "do I have bone density issues." AT 32 no one was interested in testing, and they said no. At 50, I discovered I do have low bone density, and when endocrinologist did a celiac blood test (tTg) normal was 0-19 mine was 181. No other testing for bone issues was positive. My bone health seemed to be completely celiac related. Since then I have been gluten free. Skin is improved, though now other parts of my face get autoimmune reactions. I am finding gluten-free not quite enough, though it has helped many minor symptoms, the years of irritation to my body make some things slower to heal.

Dermatologists were the worse, just saying an area of persistent itch was just dermatitis. And they didn't know about DH and didn't know how to do proper biopsy.

I have lost faith in the expertise of doctors. I do lots of research and do my best to help myself and sort this out.
Purified vit C from BEYOND HEALTH has helped me alot to heal.
Still looking for more answers.

 
Corinne
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said this on
06 Sep 2010 3:15:45 PM PST
I suffered a miserable childhood with the diarrhea and anemia, depression and weight loss. As a teenager I was accused of being bulemic, and/or on drugs. As an young adult I was 97 pounds after having a baby, and what made the diagnosis was the fact that I worked as an assistant to a GI doctor, and found the information about celiac disease in one of his textbooks. I pushed the issue and finally he agreed to test me and thank you very much found that I have it. Now as a nurse, I had my whole family tested and half of us are now on a gluten free diet and thriving. I was misdiagnosed with IBS prior to that, but also did have ulcers and gallbladder problems. Its all inter-related.

 
Ramona
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said this on
06 Sep 2010 3:47:14 PM PST
Yup...suffered for years and always thought it was a "nervous tummy". Finally met a functional medicine doctor who's first words out of her mouth were "I'll bet you are gluten intolerant". Sure enough, but even when I went back to my HMO doctor with the test results and some info - he still refused to diagnose me with anything other than IBS...needless to say, I do not share this info with any HMO docs and I monitor my diet carefully.

 
Lauren
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said this on
06 Sep 2010 3:55:01 PM PST
I have gluten sensitivity, and was able to self-cure once I found that out. But it took 5 years of going to 7 different doctors, including a gastroenterologist, before I received a food allergy test after mentioning my problems to my CHIROPRACTOR. And yes, the other doctors kept giving me pills instead of helping me find out what was going on (all said I had "irritable bowel syndrome". Even my allergist's "gold standard" test for celiac disease came back negative, but eliminating gluten for months saved my life. One thing that I don't hear mentioned on celiac.com, however, is something regarding the fact that this sensitivity coincides with childbirth for some women. It did in my case (first surfaced after birth of first child, went in remission during pregnancy, resurfaced after birth of second child), and I have heard of it happening with other women after childbirth. Sounds like a similar pattern as other immune system related diseases. Any studies on this?

 
Sharon
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said this on
12 Sep 2010 1:57:33 PM PST
I also had celiac surface immediately after childbirth. I have learned since that four triggers for women are pregnancy, childbirth, surgery, and stress. I was not diagnosed as I thought my difficulties were related to the complications of delivering a very large baby. When I did start trying to get medical help, it was a decade for a diagnosis. Thankfully, my brother, an MD in Nepal, diagnosed me correctly from the other side of the world. I had been trying to believe the AMA book which at that time said one in 10,000 had it and thought it impossible to be so unlucky! He had told me two years earlier, in spite of that, that he thought I had it. Thank you , brother!

 
Dawn Carseldine
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said this on
06 Sep 2010 5:14:27 PM PST
Same issue with me. My Coeliac started when I was 21.
I was told I had IBS..... then when I lost so much weight due to malnutrition (42kgs was my weight at one point) I was told I was anorexic and just didn't want to admit it to myself... no one believed me, especially my family.
When I told them I was eating, they then decided I was Bulemic It was hell.
I was put on all kinds of necessary anti depressants.
I even lost a job due to the fact that I was sick so much.

I later found out from the other side of my family that one of my distant aunts had it.... so I asked the doctor to check for it.
He didn't think it was necessary, but I managed to convince him.

8 years later and I've been on the diet for a long time now.
I'm a million time better than I was, but I still suffer from vitamin deficiencies and all the problems that go with it, no matter how careful I am, not matter how I add vitamin rich food into my diet, and I take gluten free multivitamins every day.

I live in New Zealand, and the doctors here don't even think to check for this unless there's a documented event of it happening in the family, and even then they look at you like you're crazy until you convince someone to test for it.

 
Andrea D
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said this on
06 Sep 2010 5:44:36 PM PST
I waited about 12 years wherein I was repeatedly misdiagnosed with stress, IBS, dumping syndrome, Bile Salt Diarrhea and moreover, just had my symptoms ignored. I lost 3-4 years of work during that time because my diarrhea was so bad, I couldn't leave the house. Usually, these episodes would follow my having contacted a stomach virus that hung on for literally months and months or, a cold that just completely knocked me off my feet. No one seemed to take me seriously until I developed severe Colitis two months ago following a stomach virus. The doctor I had been seeing was not in his office and fortunately, the PA who filled in for him ordered the blood tests. Thank goodness, my 5-6 bouts of daily diarrhea stopped once off gluten! I am having a host of other/new problems concerning digestion, fatigue, skin rashes and allergies to other foods I never knew bothered me before, but I no longer have my old problems. Looking back, I can't imagine why during all my visits to the doctor and between all the blood tests and trips to the dietitian, no one ever mentioned gluten to me before. I was so lost. This disease robbed me of my forties.

 
Charlou
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said this on
06 Sep 2010 6:18:26 PM PST
I think the reason many people aren't diagnosed is because doctors have celiac disease linked in their mind with "failure to thrive," which means a fat lady like me couldn't possibly have celiac disease...right? I was self-diagnosed when my sister called to tell me she had it -- I stopped eating gluten and my "irritable bowel syndrome" went away, my "fuzzy brain syndrome" went away (except when I accidentally get cross contamination), my feeling that every cell in my body was sick went away. The other day I found a paper I typed up and gave to a gastroenterologist ten years ago (after about 20 years of IBS). He did a colonoscopy, told me I had a few small diverticuli, and sent me home with instructions to eat more fiber. The more fiber I ate, the sicker I got, so that only lasted a couple of weeks. Looking at the paper I gave the doctor, it is a classic list of symptoms of celiac disease, but I had to suffer for 10 more years before my sister was diagnosed, and she passed the word to me.

 
Cindy
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said this on
06 Sep 2010 8:09:39 PM PST
I had suffered celiac symptoms since birth and was not diagnosed until I was 52. I was diagnosed with depression,had ulcers at age 14, sluggish gallbladder, panic attacks, had a thyroid lobectomy, acid reflux, and diagnosed with irritable bowel. I also had anemia most of the time. It was always a problem when I went to donate blood. All this over a period of many, many years. I was hospitalized with diarrhea, tested for parasites and finally told not to drink apple juice as that would cause the problem.
What?????????? I was down to 110 lbs before a GI finally got it right! Feel good now and do most of my own cooking and baking. The food has gotten way better over the years.

 
Michael
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said this on
06 Sep 2010 8:10:49 PM PST
I started pursuing a diagnosis at the age of 19 with a gastroenterologist. I did not learn of gluten intolerance until many doctors later at the age of 55. Researching online, particularly the personal stories on the NFCA website, I decided celiac was it. enterolab testing was positive, and a restaurant's mistake 2 months after going gluten-free was the overwhelmingly convincing confirmation. That's 36 years. Part of the problem is that a complete history of every seemingly disconnected symptom needs to be taken. Doctors need to learn the symptoms. For most celiacs, it is a subtle and insidious disease process. The huge shortage of primary physicians and the resultant brevity of examinations, with most doctors not taking complete histories, are a contributing cause of the long time to diagnosis. But, mostly it was just ignorance of doctors. The best solution is to legislatively require testing for everyone like they did in Italy. Doctor Peter H.R. Greene has said that celiac affects 1% of the male population, as well as 1% of the female population.

 
Fancy
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said this on
06 Sep 2010 9:13:29 PM PST
It took me well over twenty years and I had to figure it out myself with friends suggesting it to me. If it was no for the web I would be even worse. I still get the Auto immune that goes with it.

I had to take all kinds of medications that almost gave me kidney failure for the high blood pressure it caused. I went off of them and I figured out what I ate had something to do with it and it took several years to get completely what.

Now my doc likes seeing me come for she learns from me she says. I still get the tiredness and it is hard to find anything to eat as I can't eat the chemical foods as well.

I would have done myself in if it was not for how bad I felt and on top of that no one believed me much. Now it is a bit easier and I think it ruined my thyroid.

I think my mom had it. I am not sure but she died early very sick.

 
Ms. Kat
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said this on
06 Sep 2010 9:22:29 PM PST
I was 38 before I was even allergy tested. Because my family didn't think my symptoms were worth bringing up at doctor visits, I suffered through a childhood full of food allergies, and am fortunate to be here, in reasonable health, at the age of 43. I had gastrointestinal symptoms, hives, all sorts of things; by the time I was tested my caeliac disease was quite advanced and sometimes I felt weak and tired, and like I was going to die. It wasn't until I mentioned a hive flare to my doctor that I was allergy tested, and found to be allergic to at least 41 different foods and other allergens. Because nobody linked other symptoms, such as weak tooth enamel, a seemingly random asthma attack, thinning hair, etc, to possible allergies, I never thought to mention everything at once, in all those years, so tests could be run. So until 5 years ago I pretty much suffered in silence, accepted my problems as simply a part of me. Changing my diet/lifestyle is not always easy, but it has made a huge difference in how I feel. I am still discovering health issues which can be linked to allergies, and it gives me peace of mind to know that changing how I eat has improved my health. Everyone, it is never too late to get the diagnosis that will change the rest of your life.

 
Pat
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said this on
07 Sep 2010 6:42:00 AM PST
At the age of 40 I started getting dermatitis herpetiformis. Without the knowledge of gluten intolerance I thought it was stress or contact dermatitis. I went to 4 dermatologist and 2 allergists over a period of 7 years to hear its mite bites to flea bites etc. I disputed this diagnosis with them . Finally after doing some research I eliminated gluten from my diet . It is now been 17 years and cross contamination is still a real problem for me. Only 1 doctor thought I might have DH. Why is that? Too long to wait for a diagnosis.

 
Rhonda
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said this on
07 Sep 2010 6:46:43 AM PST
I was fortunate to have been diagnosed on my first visit after having my lab work come back positive. I was not even aware that my doctor was going to do a celiac lab panel but I'm very thankful she did. I was then sent for a small bowel biopsy and immediately started a gluten free diet.

 
Barbara Ross
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said this on
07 Sep 2010 7:48:10 AM PST
I have suffered from this disease since childhood (I am 48) and was diagnosed 18 months ago. The worse part early on was bad rashes on knees, elbows and at the base of my spine. This continued on and off throughout the years. As I got older other symptoms began such as stomach aches, bloating, terrible migraines etc. etc. we all know what they are right? I was listening to a medical radio programme one day while driving and whilst talking about gastrointestinal diseases the person started talking about celiac disease, which by the way meant nothing to me because I'd never heard of it, but when she mentioned dh and the usual location for it I knew that I had finally figured it out. I saw my doctor the next day and demanded a biopsy. I literally had to argue with him to do the endoscopy because he wanted to convince me it was acid reflux and he could perform surgery to correct it (he is a surgeon). I made a deal with him that if it wasn't celiac, we could talk about the surgery. A week later I got the diagnoses and was elated. My doctor apologised to me but still is against testing other members of my family that have gastrointestinal problems - he says celiac disease is 'very rare'. I traveled to Europe last year and they are so much more aware than in North America - some eastern European countries routinely test babies at 1 year old.
I don't think US doctors are in some conspiracy, they just don't know about it and don't want to know.

 
Mary Kubik
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said this on
07 Sep 2010 7:48:43 AM PST
It took me over 25 years to get diagnosed. I was told I was anorexic, anemic, and just plain stressed out. They said stress was the cause of my symptoms, when I knew it wasn't. I am very happily married and have 4 wonderful children. I also developed 3 different autoimmune diseases (fibromyalgia, low-thyroid, and Reynaud's symdrome) over the 25-year period because I didn't know I had celiac and ate gluten regularly; no fun!

 
Nancy White
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said this on
07 Sep 2010 9:10:12 AM PST
I was diagnosed at age 64 after 15 miserable years of being dismissed by the doctors, including my endocrinologist. The symptoms were initially masked by the symptoms of hypothyroidism which flared at the same time menopause hit. My hypothyroidism was under-medicated for the first 5 years following diagnosis. One nurse had patronizingly patted my hand and told me that I just had to get used to the aging process. It was al I could do not to smack her. I finally got their attention by taking in before and after pictures and bags full of hair that I'd lost over a 2 month period. Only at that point had they decided that I was not just a whinny menopausal woman.
But in spite of getting the thyroid medications adjusted, I still wasn't quite right. When the diarrhea hit a few years later it was at first treated as the flu, then a viral infection. I was finally referred to a gastroenerologist 3 years ago, and 6 months later he told me I had celiac Disease.
I believe we are the victims of our doctors' ignorance and their arrogant need to be right. What do we need to do to make sure that they get the education they need about celiac disease? JAMA or NEJM articles? CME classes? Contacting the educational directors at hospitals and HMO's?
For me, I'm grateful for celiac.com and the folks we make it valuable to me. Thanks to all of you who keep us informed of the latest research.

 
Gloria Brown
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said this on
07 Sep 2010 7:03:49 PM PST
In order for doctors to diagnose celiac disease, medical schools need to include courses (beyond pediatrics) about it–and how it can manifest in each of the disciplines.

 
Gloria Brown
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said this on
07 Sep 2010 8:26:54 PM PST
Celiac Disease should be included in medical school curricula and how it affects all disciplines, in addition to Pediatrics. Non-responsiveness to standard treatment is a hallmark every physician need consider.

 
Cyunthia
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said this on
08 Sep 2010 5:50:50 PM PST
When I finally had the endoscopy and the doctor said I had celiac, I said, "No I was tested 10 years ago and the test was negative." He said, "they misread the test!" In that 10 years, I went to at least 20 doctors and wasted lots of time being sick. But the doctor said, "At least you had 10 more years of drinking beer and french bread."

 
Betsy Soto
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said this on
10 Sep 2010 1:39:09 PM PST
I suffered from GI problems since my late teens. I went to different GI doctors and got different diagnosis. First, it was acid reflux. I did everything they told me and my problems continued. Then, they told me it was a bacteria in my stomach and I had to be in a treatment of something like 8 pills to kill it. After the treatment the doctor said that the bacteria sometimes does not die and I just had a crummy esophagus. After, a few years I went back to another doctor who told me that I had IBS. He gave me a medicine that helped and I felt like I could not live without this pill but my problems did not go away. Over the years they got worst. I had Policystic ovary syndrome, Asthma, constant diarrhea, wicked stomach pains, fatigue, weight gain, allergies, infertility, etc. at age 30. I could not bear the pain and made another appointment and demanded that I had an endoscopy and colonoscopy done. When, the results came back the doctor told me that I was lucky that they found out what I have at a young age because most people are not diagnosed until they are in their 60s. She also said that it was good that she ordered a biopsy because I was at an early stage of the disease and most of the time it goes undetected with just an endoscopy or colonoscopy. I also had the blood test done and it come up positive. I feel so much better with out the gluten and when I have it I pay for it.

 
Christina
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said this on
13 Sep 2010 11:46:22 AM PST
I haven't bothered getting diagnosed. I know that my doctor would not be supportive and I feel and look so much better, what would a diagnosis do for me anyway?

 
Alexis
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said this on
13 Sep 2010 2:39:43 PM PST
I had an endoscopy about three weeks ago and I found out about two weeks ago that I have celiac. I'm 14 and just started the diet a few days ago. It's pretty difficult

 
Candace
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said this on
12 Oct 2010 3:26:41 AM PST
So much information in all your comments. 4 years ago my OB Gyn suggested my symptoms were possibly gluten intolerant, and to eliminate glutens and wheat from my diet for several months, then reintroduce and test it out. I am very thankful for her attention. When I reintroduced wheat several months later, my reaction was severe. I’m gluten free now and feel so much healthier. My daughter, 22 years old is also gluten intolerant. My symptoms included bloated stomach, stomach and intestinal cramps, severe constipation, fuzzy thinking, fatigue, isolated skin rashes on my upper arms, sharp hip joint pain, infertility via blocked fallopian tubes resulting in 2 ectopic pregnancies (luckily pregnancy with daughter was a success), appendicitis as a young adult. I’m 58 now. During college the chronic constipation was treated as anxiety, given belladonna phenobarbitol for awhile (didn’t like), colonoscopy showed no abnormalities, told to eat more fiber, whole wheat breads, etc. 15 years later other doctors again tried to find reasons, another barium enema and colonoscopy, all okay, told anxiety. That was not helpful. So self diagnosed daily for years, read nutrition books, read up on vitamins, took over the counter meds, exercised a lot, ate lots of fiber, gave up on doctors for this ailment. I’m also intolerant to dairy, so use rice milk. It was during menopause that my OB identified my symptoms, and I’m daily thankful to her! And, I value this celiac.com website and all the information!

 
Lisa E San Jose CA
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said this on
30 Jan 2011 2:37:51 PM PST
At age 38, I started to sweat after I ate any type of food. Then I got acid reflux. Took Prilosec for 2 years, then I thought I caught the flu - but the symptoms wouldn't go away. My doctor said take Pepto Bismol. I went back and forth complaining of chronic diarrhea. She said take ImmodiumAD. It was six years of this daily struggle until I learned of Celiac disease on the web, and insisted on being tested. I had already gone on a gluten free diet on my own, as it was the only one that made me feel any better. My blood test was positive, and the biopsy as well. Eating gluten free and continually getting cross contaminated accidentally from mis-labeled food sources, I still only have about 6-10 symptom free days a year. I still take all those medicines daily. A new doctor recently said my blood test for Celiac was negative, but I kept a daily log of my symptoms, tried his cholesterol medicine and am back on Prilosec - in addition to Pepto, Gas-X, ImmodiumAD daily. He told me to stop taking Tylenol, and I suffer from abdominal pain daily. I get an ultrasound of my abdomen next week. I have finally convinced him to refer me to a GI specialist. The gluten free diet and over the counter medicines are not working well enough. I still get cross contaminated 90% of the time whenever I eat at any restaurant, and sometimes even when I cook for myself at home. Only steamed rice and veggies seem to help a bit.
I'm now 45, and the symptoms are starting to interfere with my daily life/work. My own research continues, and I am hopeful a GI specialist will be of some help. We need better food labeling and more focus on the food supply chain in the US. The FDA & USDA need to have more money, power, and responsibility for the chemicals and additives that are being added into our foods. I'm allergic to more foods and drugs than I can name. My life is being spent feeling ill. Years are passing me by and I feel unable to take part in the activities that I used to enjoy. It should be against the law to put antibiotics, pesticides, additives, and chemicals into human foods. The politicians are no the take, and the lobbyists and their cash contributions are enabling us to feed unknown and unhealthy substances to ourselves and our families.

 
KristaK
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said this on
31 Jan 2011 3:46:18 PM PST
It took about 15 years (give or take) for me to be diagnosed. Here's my story:
At age 16, I was healthy, if a little skinny. I made all A's in school, had 2 jobs, did marching band, school plays, chorus, volunteered at the animal shelter, and babysat my infant sister. I had tons of energy. By age 17, my grades had started to slip, my brain felt fuzzy all the time, I'd developed stomach ulcers, and a serious attitude. My little sister had failure to thrive, along with a host of other problems. She was later diagnosed as autistic (savantism was her niche), and she was taken off gluten and casein at age 9. My home life was less than ideal, so I figured it was all nerves, and part of growing up. My symptoms seemed to set in about the time I got my first period (also age 16). I went to college out of state at 17, and the stress and unfamiliar foods seemed to aggravate my ulcers. I remained sickly for many years, and discovered I was severely anemic when I attempted to donate blood. I bruised easily, to the point that my boyfriend (now husband) was called in to the campus police station and they examined his knuckles to determine if he'd been abusing me. I continued to have "female troubles" which led to a period that lasted 40 days. I had exploratory surgery, still no answers. Fast forward a few years, I married, got pregnant with my first child. It was a nightmare. I was sick the entire pregnancy, and did not gain the proper weight. My son was born by induction a month early. Shortly after that, I developed painful red lumps in my legs. Several doctors and wrong diagnoses later, I was told all of my issues were psychosomatic, and I just needed to relax. My weight ballooned to 180 (I'm 5'9"), and I was ravenously hungry all the time. In '04 my gallbladder was removed, with no alleviation of my symptoms. I got hold of my op report, which said that they had removed a perfectly healthy gallbladder. In '06, I got pregnant again, developed gestational diabetes and placenta previa, and was put on bed rest. He was born healthy, if a little early. My stomach symptoms continued to worsen, and my weight again topped 180. My life was miserable, and I had to leave my job. I could barely get out of bed. Doctors told me I was a hypochondriac, I had dumping syndrome, rheumatoid arthritis, lupus, MS, and acid reflux. I visited a nurse practitioner before a trip out of the country, and described my symptoms. She did a full blood panel, and diagnosed me with celiac. I was heartbroken, but not really surprised, as my sister had been gluten-free for 10 years. She also said my case was interesting, as I'd gained so much weight, but had severe malnutrition. She said if I'd seen her at the hospital, she'd have admitted me. I've been gluten-free since last April, my weight dropped back down to 125. I have my energy back, and can again eat in public. I'm not sure how much damage had already been done, but even the slightest cross-contamination makes me sick for days, and bloats me at least 2 sizes. I no longer feel like I'm starving to death, but gf food is hard to come by (and expensive!) in this neck of the woods, so it's still a struggle. My regular doctor refuses to believe the NP's diagnosis, and I get the sarcastic "so you all of a sudden are allergic to wheat" when I go out to eat with my friends who knew me B.C. (before celiac). I still think there is a hormonal link, as I have bad flare-ups at "that time of the month" but for the most part, I am back to my relatively normal self. I'm just sorry it took 15 years and 3 unnecessary surgeries to get here. I wish more MD's were better informed about this, or more willing to accept another's diagnosis, but y'all are doing a lot to help. Keep up the great work, and sorry about the wall of text.

 
Robyn
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said this on
04 Mar 2011 12:43:06 PM PST
It makes me want to cry when I hear story after story where people have gone through this. After 15 years of suffering I was both elated to have a diagnosis and angered that all it took was a blood test!

When I was 16 or 17 I began having stomach pain, diarrhea, fatigue, depression, you know the story. I went to doctor after doctor. I got put on anti-depressants, Bentyl, Valium, soma, trazodone, ultram, prilosec, carafate. I was given vicodin, oxytocin, and hydrocodine for the pain. I have made over 50 trips to the ER in such horrible pain that I had to be sedated. All I was ever told was it was stress. Or depression. Or a nervous stomach. Or IBS. Or lactose intolerance. Or an ulcer. Or I was an attention junkie. I can only imagine how I looked to the doctors, thin, pale, sweating and screaming with the pain, huge dark circles under my eyes. Doctor after doctor just looked at me like I was nuts, or some kind of pill-head begging for more meds. When really I was begging for a diagnosis! Blood tests were run, stool samples were taken, even 1 upper endoscope and 2 colonoscopys. NOTHING, year after year. I really thought I was crazy. I had 3 miscarriages and finally 2 live births, both preemies. Both pregnancies I would be too weak to walk through the store, too weak to drive, I would simply pass out. My heart was checked, my brain was scanned, I was sent to a psychologist who gave me more effin pills! Finally my gallbladder was removed and when the pain continued they were going to do exploratory surgery! I was desperate to not be cut on again and threw out to the surgeon "Could it be gluten intolerance?"

HE LAUGHED AT ME! Yes. He chuckled and said "Well, people with Sprue only weigh 90 lbs and are wasting away to nothing, you're a healthy 120 (btw, I did not look very healthy!) but sure what the heck let's check!" And the rest is history. Within 3 days of going gluten free it was like I woke up from a dream and the sky was blue and I could suddenly breathe again without pain. For the first time in 15 years I could take a breath without pain. I wish to god that routine screening for Celiac disease existed. I am so glad to wake up every morning and not have to take a single medication. I just wish it hadn't taken so long! I am now healthy (and I look healthy!) and it feels so good.

 
Helen
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said this on
05 Sep 2011 1:44:49 PM PST
I'm now 45 and as fit as a butcher's dog. I am on gluten free diet--started it three years ago. I was permanently ill from the age of 17 until 'diagnosis'. My blood test was negative and my biopsies were negative! Despite this I started a GF diet. The change in my health on GF diet has been unbelievable! I previously suffered from several migraines a week, IBS, lethargy, tiredness, hair falling out, black circle under my eyes, bruises everywhere, asthma (I've now thrown my medication away!), puffy face, ataxia, hypoglycaemia, aching joints and bones, more recently sudden massive weight gain (1 1/2 stone in a year). At one point I was so ill I gave up work for six months. I even fell asleep driving the car a couple of times! I was ready to commit suicide I was so ill. Now I'm symptom free, a stone lighter, happy and healthy. How I wish I has know when I was a teenager. I might have had a life. I have no idea how many doctors I saw. Almost all of them made me feel like a hypochondriac and my family were not much better.




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