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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    STORIES OF CELIAC DISEASE SYMPTOMS—BOTH UNDIAGNOSED OR MISDIAGNOSED


    Amy Leger

    Celiac.com 12/12/2008 - The tales of diagnois for celiac disease are almost alwaysdramatic: Some people go for years dealing with aches and pains and thinkingthat this is just the way their body was built. I remember feeling that way when my one-year-old was so crabby—walkingaround with her big old “Buddha” belly. Recently, I requested the top threesymptoms from adult and child celiacs to put together a survey of the topsymptoms on my blog. I didn’t ask forthe diagnosis stories, but people offered some insight into the trials andtribulations of getting diagnosed with celiac disease—and eventually leadinga new and healthier life!


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    It took a major virus, three doctors, x-rays, blood tests toget to Emma’s diagnosis.One doctor toldme “kids throw up” (once every nine days? Really?), a second opinionrecommended Milicon for her “gassy” tummy. Luckily, it all ended the way it should have, with a diagnosis of celiacdisease that only took about 5 months—which is relatively little compared tosome of the stories you’re about to hear.

    One woman wrote me describing her daughter’s symptoms whenshe was diagnosed at age 15, but then she wrote back about the subsequentdiagnoses of her sister and mother.Jeanwas diagnosed at age 70 but she and her family tell me her severe scoliosis atage 12 was a symptom! Can you believebeing misdiagnosed for 58 years?Jean evenhad to be put in a back cast for a time.

    Jean’s daughter, Vicky was diagnosed with Crohn’s disease atthe age of 12—which included 3 major surgeries! Her celiac disease diagnosis didn’t comeuntil the age of 51. By then major damagehad been done to her body with the onsets of several health issues:rheumatoid and osteo arthritis, thyroiddisease, severe osteoporosis (both hips have been replaced ...one twice)and severe scoliosis. It turns out: three generations of women in the samefamily all started showing their symptoms in those early teen years.

    Kim wrote me and said she was diagnosedat 39 years old when she was hospitalized with stomach pain, vomiting anddiarrhea.But she added at the end ofher note, “ probably shouldhave gotten tested at [age] 11 when I had the same severe cramping that put mein the hospital.” The bright spot inthis story is that her eventual celiac diagnosis, led to the quicker diagnosisof her 5-year-old daughter who was just beginning her symptoms of low weightand anemia.

    Another contributorsaid her 14-year-old son was diagnosed with celiac two years ago, but has alsohad a kidney issue for the last 9 years.But since he has been eating gluten free…his kidneys have also gottenbetter, last report was the best since before he was brought in at age 5!! Now I wonder which really came first?”It does make you wonder.

    But there are somesuccess stories:

    One mom mentionedher son’s quick diagnosis. “[it] started with diarrhea. Thought it was a stomach bug.” Then it moved to constipation and two weekslater things still weren’t right.Thentheir doctor put two and two together, “[An]amazing pediatrician said ‘This sounds like Celiac’ and ran the bloodtests. Andrew was only ‘sick’ about 1 month before diagnosis,” shesaid. However looking back on it all, hehad a big belly and slow to grow.

    Others talked about having celiac disease and not even feeling sick.

    • I onlyfound out about the anemia through a blood test done as part of a completephysical; my general health to that point was excellent, including runningmarathons,” Danny wrote.
    • “The only reason [my 3-year-old daughter]was diagnosed was her yearly blood draw came back positive so we had thebiopsy,” said Monica, a mom of two celiac children.
    • Anna’s dad, Tom, was diagnosed in his 40s aftera family-round of blood testing. He isasymptomatic.

    The last two pointsshow how important it is to take part in preventative measures, by gettingregular blood testing done for first-degree family members. The National Institute of Diabetes, Digestiveand Kidney Diseases says, “…because celiac disease is hereditary, familymembers of a person with the disease may wish to be tested. Four to 12 percentof an affected person’s first-degree relatives will also have the disease.”

    The stories ofdiagnosing celiac disease may leave many of us angry, frustrated, and possiblygrateful—all at the same time. The missed diagnoses and misdiagnoses of those who have thisdisease presents a roller-coasterride of emotions. I hope this articlehelps you in knowing many others have gone through it and are likely goingthrough it as we speak.We just need tomake sure we’re spreading the word and getting as much awareness out there aspossible to help others in similar situations.



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    Thank you for this website. My daughter has had problems since she was born. She has been tested for so many years for so many different things and all came back normal. Finally at age 14 she went to see a doctor who seems to think with all of her symptoms she has celiac disease. It has taken 14 years for someone to figure this out. I think this disease needs more attention so others are diagnosed so much sooner.

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    Guest lori turner

    Posted

    Am 41 yrs. old, white, English/Irish heritage, female. Diagnosed 10/06 after Cardiac Ablation for SVT. Had some stomach issues prior-VERY obese, constipation one day and diarrhea the next, acid reflux, headaches, body aches. But, the only thing I had prior to having my son in 1989 was obesity. After the c-section (general anesthesia), had all the other stuff enmasse. After the ablation, had trouble concentrating, eating/digesting, dizzy, stomach pains. Some of the meds prior had stomach side effects, so did not think much of it all. But, kept up with the docs. Finally, could not take the stomach issues anymore and kept after the doctors and 11 months after the surgery, was diagnosed Celiac. Was told the obesity was due to the absorption of a lot of toxic junk over the years through the intestinal erosion and constantly eating due to not feeling full EVER!! Since diagnosis, have had some improvements: Weight is down nearly 100 lbs. with about 60 to go, gait is somewhat better, aches somewhat better, diabetes much better controlled (no need for meds in I cannot tell you how long). But, still having gastro issues-food not wanting to digest properly causing gas, bloating, dizziness, headaches, nausea and heart palpitations. Wish I could say diagnosis/gluten-free diet was the cure-all, but for me, it helped immensely, but am still struggling after 2 years.

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    Guest Johnathan

    Posted

    I have been checked repeatedly for celiac desease, and have always been told that I don't have this, however, I have similar symptoms going back since my childhood (I am almost 50). I finally decided to do a gluten-free diet anyway, and guess what? I feel much, much better. It took this long to figure out whats going on. In the meantime time, I have gone from chronic stomach reflux to Barretts esophagus. Fortunately for me, with the diet change and the medication, it appears that the Barretts is reversing itself, according to my last endoscopy and the lab results.

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    Excellent article! Be aware that if you are IgA deficient the blood tests are USELESS! You may not know that you are IgA deficient, so the Dr. should check that level also. I knew I didn't have any IgA and kept telling the gastroenterologist that, even asking him if the test would be accurate since I am IgA deficient. His reply was 'Oh, yes, that doesn't make any difference.' He repeated the test at least 4 times, all negative, then he could not understand why my intestinal biopsy revealed total atrophy of the distal two-third of my small intestine and severe inflammation of the rest. HA! What a dummy! I went to a large teaching hospital at the recommendation of my immunologist and my internist, how both said the blood test was useless for me. The gastroenterologist at the teaching hospital said 'Of course the blood test wouldn't be positive. You could have your blood tested forever and it will never be positive. I don't even need to do a biopsy, I know you are celiac from your symptoms and your improvement with a Gluten Free diet. Keep up the good work. And by the way, here is the name of a store with lots and lots of gluten free food items, you may want to visit while you are in town.' Prior to my diagnosis I had lost 35 pounds (weight was less than 100 pounds of skin and bone), had severe swelling of my lower extremities, and had no blood pressure so my internist took away my driving privileges. To summarize - Make sure your IgA level is checked and is not low at the time of your blood testing for celiac!!!! Thank you.

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    Guest Annette

    Posted

    Great article. I am 57 and was diagnosed 15 months ago. I have a lot of physical damage due to Celiac that was first symptomatic when I was a child. Thank God for a doctor who didn't think I had celiac but tested me anyway. I had lost 30 lbs. and was constantly sick, picking up viruses at every turn. My dad died of pancreatic cancer and, after two emergency room visits and unresolved treatment, I was convinced that I had it as well. I began to put things in order in preparation was only a year or two more on this earth. Then came my chance visit to a doctor who actually knew what he was doing! I have gained back the weight but still suffer from symptoms occasionally. The hardest part for me is reading every single label which means I have to put my glasses on at the store every time I pick up a package with more than one ingredient.

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    Wow! I really am not the only mom who had to worry for years before the answer came! My nine year old daughter had horrible tummy aches since she was born. By her 5th birthday, her doctor began testing her for everything! Blood tests, X-rays, Ultrasounds, ECG--you name it! Always came back normal. So it was chalked up to 'Kids don't always know how to interpret their body feelings'. Our dentist even asked if she had been given lots of antibiotics as a baby, since her incoming adult front teeth were discolored and had weak enamel. If only they had known that weak tooth enamel and discoloration of teeth is a Celiac symptom-- we could have gotten our answer three years earlier! It took her losing lots of weight (she looked like a skeleton) to finally give her a positive blood test for Celiac with biopsy confirmation! Now she's doing GREAT!

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    Great article. I am 57 years old and was diagnosed 3 years ago. My dad was diagnosed about 13 years ago after years of losing weight and dealing with intestinal problems.

     

    My symptoms did not involve any digestion problems. Instead I had joint and muscle pain and fatigue. The doctors looked for lupus and other inflammatory diseases and finally said I had fibromyalgia and I would have to learn to live with it. Because my dad had celiac I asked to be tested. I was positive and after a month on the diet my aches and pains went away.

     

    It saddens me to think if my dad didn't have celiac then I would have never asked to be tested and I would have lived the rest of my life in unnecessary pain. I have tried to spread the word to doctors I know to check for celiac even if the symptoms are not digestive.

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    Thanks so much for this post, I've just had my blood test for celiac disease. I've suffered for 20 years so far and have been diagnosed with everything under the sun. I'm covered in ulcers, I've got arthritis, my bowel bleeds everyday, and really hurts to eat so I don't do that much but can't seem to lose weight. They've have given me so many meds over the years and to think its the food I eat. I've found out that all these symptoms are all related, and my mum sisters and my son all have the same symptoms so I'm looking forward to at least maybe eating a meal that doesn't feel like I'm swallowing razor blades. When I saw a site showing dermatitis herpetiformis I finally saw exactly what I had and it was a severe reaction to gluten which ulcerates my skin, and then it was easy to get the tests done. Don't just go with the first hundred diagnosis...a lot of the time it's educated opinions until they can find it.

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    Guest ginger wilkinson

    Posted

    Until last week, I worked for an allergist who had a great gluten-free diet which I have lost. I wish I had a copy of it. It had about 10 items on it and he probably got it when he was at Bethesda. So glad to see the great work you're doing!

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    Guest Barbara

    Posted

    I was diagnosed last week with Coeliac disease. Its interesting that everyone went through so much to get this diagnoses and I'm not alone! I actually was listening to a medical program on the radio and they were describing celiac and mentioned that some people got dermatitis herpetiformis (the rash). I've suffered from this rash on knees and elbows since my teens (I am 47) and could never figure it out. Now in my 40's I have a lot of digestive problems including acid reflux etc. and was constantly being told I had irritable bowel syndrome and there was nothing I could do. Anyway, after hearing this thing on the radio I went to my doctor and demanded a biopsy which came back positive. All I can think is what if I hadn't listened to that program? I don't understand why doctors continue to treat patients withintestinal problems for years and years and never suggest this test. Thanks for the article and the website - I have a lot of learning to do regarding my diet but I'm ready.

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    Guest Kryss Quinn

    Posted

    My story is long, albeit in a short time period, it was extreme. 5 months of hell. 5 months, hospital stays, and endless rounds of ' it is a mental disorder causing him pain. I heard doctors tell my son, 'it isn't as bad as your saying'.

     

    I had a 12 year old boy curled up in a ball in my bed, in pain and no where to go. The doctors had already let us down. No amount of pain would have had me take him back to the hospital to be dismissed again.

    I don't know for sure, but it appears that he had labyrithitis first, which kicked off his celiac...

    by accident we discovered this...

    we took him off anything that was processed. He ate only fruit, vegetables and lean meat and he started getting better (I was unaware of celiac at the time) When I would let him cheat (how bad can a healthy piece of whole wheat bread be) he would crash, dizziness, joint pain, stomach pain, extreme pain. Every breath he took was followed by a grunt of pain... He sounded as if he was freezing, sort of chattering, extreme dizziness...

     

    the long and short of this is... took him off gluten and he improved. Put him back on for testing and he crashed...

     

    he is standing behind me, recovering from having to be on gluten again...

     

    If I can get one parent to listen...

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    Guest Robert

    Posted

    I am 50 years old, male and in fair health otherwise. I have had the same symptoms more on than off for more than 20 years. Acid reflux, cramps, bloated belly, I.B.S. and ect. The last 2 years have been continuous misery. A few months ago I went on a diet of soy milk, bananas and canned fruit, Because most foods just made me miserable. It was about a week or so before I started feeling much better, and a nice breakfast cereal changed that over night! So back to the bananas. At this time I hadn't made the connection, but another meal of wholewheat toast a week later made me see what was up. I am not 'officially' diagnosed, But 10 years of I.B.S. has magically disappeared in 6 weeks. So has acid reflux, diarrhea and ALL the cramping and shooting intestinal pain I had for years. I am researching how to best eat healthy, I don't care about what my doctor says, he's been confused for years. Your website is a great source of info. Thank you!

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    Guest Elizabeth Campbell Duke

    Posted

    I'm still in a state of disbelief and, frankly, anger. My husband has suffered with Rheumatoid Arthritis for 20 years (more if you count the years he was at doctors and told he had 'growing pains'). While watching 'The View' a few weeks ago, Elisabeth described the symptoms of Celiac Disease and we both turned to look at each other. Within 48 hours of eliminating gluten from our diets he was feeling much improved (I have a bad nut allergy, so I can read a label and chuck things out) .

     

    He's now been back on gluten for a week so he can have his blood tested, but we're not waiting for the endoscope - it's fairly clear that gluten is involved as he's showing the symptoms again with a vengeance, and they were keeping him awake last night.

     

    I keep thinking about all of the pain medication and sleeping pills he's knocked back over the years trying to get a decent night's sleep. What kind of shape are his intestines and liver in?

     

    Why does it take 54 years and a TV talk show to make the diagnosis of a disease that isn't all that uncommon? If this disease is also linked to RA, why haven't any of his rheumatologists discussed it? Honestly. This explains why he's so skinny he has to run around in the shower to get wet, consistently has low folate levels, and abdominal pain and diarrhea.

     

    Perhaps he should be seeing an immunologist in addition to a rheumatologist. Man!

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    Guest Michele Guadagnino

    Posted

    I am 30 years old and have had stomach problems since after my six year old daughter was born. Three years ago I had my gall bladder removed. I was hoping that would have helped but continued to have horrible stomach problems. I ended up in the hospital and was referred to a GI specialist who believed I had IBS and has been treating me for it with medication and also had me go in for blood work for the gluten allergy. I have been trying to get pregnant since November of last year and have been unsuccessful. I am waiting for my blood test results to come back which should be by the end of the week. In the meantime I have already changed my diet to gluten free and started taking B vitamin supplements and I have NEVER felt better! I am also hoping that I will now be able to conceive a child soon!

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    Guest Darlene Anderson

    Posted

    Great article. I am 57 years old and was diagnosed 3 years ago. My dad was diagnosed about 13 years ago after years of losing weight and dealing with intestinal problems.

     

    My symptoms did not involve any digestion problems. Instead I had joint and muscle pain and fatigue. The doctors looked for lupus and other inflammatory diseases and finally said I had fibromyalgia and I would have to learn to live with it. Because my dad had celiac I asked to be tested. I was positive and after a month on the diet my aches and pains went away.

     

    It saddens me to think if my dad didn't have celiac then I would have never asked to be tested and I would have lived the rest of my life in unnecessary pain. I have tried to spread the word to doctors I know to check for celiac even if the symptoms are not digestive.

    Great article.I'm being tested for celiac after 56 years of intestinal problems. I was also diagnosed with Fibromyalgia a year ago. I'm hoping for positive answers soon.

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    Guest Jennifer

    Posted

    I am a 29 year old female and have had chronic diarrhea for 4 months, lost 25 pounds, have canker sores all over the inside of my mouth, and have joint pain. Just yesterday I was doing some research on the net, and came across celiac's. I thought to myself...could this be the answer? I have had a hospital stay, numerous blood tests, saw a rheumatologist, x-rays...you name it. I told my family doc I wanted the blood tests done for this. Just had them today, will find out in a few days the results. However, I am going gluten free anyway to see how I feel. If this is celiac, and I will only have to follow a strict diet, I am grateful. Everything goes through your mind when you are feeling this bad for months...especially for a young mom. I want to be around for my little girl, and if all it takes is a diet, then I'll do whatever it takes to get healthy again. This is only day one of Gluten free....hope it works.

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    Guest Lisa Stafford

    Posted

    Am 41 yrs. old, white, English/Irish heritage, female. Diagnosed 10/06 after Cardiac Ablation for SVT. Had some stomach issues prior-VERY obese, constipation one day and diarrhea the next, acid reflux, headaches, body aches. But, the only thing I had prior to having my son in 1989 was obesity. After the c-section (general anesthesia), had all the other stuff enmasse. After the ablation, had trouble concentrating, eating/digesting, dizzy, stomach pains. Some of the meds prior had stomach side effects, so did not think much of it all. But, kept up with the docs. Finally, could not take the stomach issues anymore and kept after the doctors and 11 months after the surgery, was diagnosed Celiac. Was told the obesity was due to the absorption of a lot of toxic junk over the years through the intestinal erosion and constantly eating due to not feeling full EVER!! Since diagnosis, have had some improvements: Weight is down nearly 100 lbs. with about 60 to go, gait is somewhat better, aches somewhat better, diabetes much better controlled (no need for meds in I cannot tell you how long). But, still having gastro issues-food not wanting to digest properly causing gas, bloating, dizziness, headaches, nausea and heart palpitations. Wish I could say diagnosis/gluten-free diet was the cure-all, but for me, it helped immensely, but am still struggling after 2 years.

    Lori,

     

    Some celiacs need to do more than gluten free. You should read the book, Breaking the vicious cycle by Elaine Gottschall and check out the website by the same name. You need to take out the rest of the starches from your diet and you will feel much better. Check out Specific Carbohydrate Diet on the web.

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    Lori,

     

    Some celiacs need to do more than gluten free. You should read the book, Breaking the vicious cycle by Elaine Gottschall and check out the website by the same name. You need to take out the rest of the starches from your diet and you will feel much better. Check out Specific Carbohydrate Diet on the web.

    Reader of that book beware: Gottschall claims her diet as a cure for celiac disease, which it is not.

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    I have having coeliac symptoms for years, when I eventually went to the Doctor about it after I left home, he described me as 'textbook coeliac' even though my blood test came back negative due to IgA deficiency. However, now my biopsy has come back normal. Does this mean I definitely do not have coeliac disease? If so what could it be? IBS has been mentioned but my Doctor said it was only rarely associated with malabsorption, which was the main reason for the coeliac diagnosis as I suffered a broken back an subsequent osteoporosis diagnosis at age 17, despite being a healthy weight, having an extremely high calcium diet and being very fit as a result of being a full time ballet student. I have had to leave ballet school and abandon my dreams because of this ill health, I thought I finally had been given the answer with the coeliac diagnosis and now I'm back where I started

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    I have having coeliac symptoms for years, when I eventually went to the Doctor about it after I left home, he described me as 'textbook coeliac' even though my blood test came back negative due to IgA deficiency. However, now my biopsy has come back normal. Does this mean I definitely do not have coeliac disease? If so what could it be? IBS has been mentioned but my Doctor said it was only rarely associated with malabsorption, which was the main reason for the coeliac diagnosis as I suffered a broken back an subsequent osteoporosis diagnosis at age 17, despite being a healthy weight, having an extremely high calcium diet and being very fit as a result of being a full time ballet student. I have had to leave ballet school and abandon my dreams because of this ill health, I thought I finally had been given the answer with the coeliac diagnosis and now I'm back where I started

    Not necessarily. I have been diagnosed with Fibromyalgia and in working with a nutritionist have discovered a wheat/gluten intolerance. My doctor suggested not even being tested for celiac as she says you can get a false negative. She instead suggested going ahead with a gluten free diet. If you do an internet search for non celiac gluten intolerance you will get many hits. It is believed by many apparently that you can have all of your tests come back negative for celiac disease and still have the symptoms of it and have those symptoms alleviated by following a gluten free diet. I would suggest that you have nothing at all whatsoever to lose by trying a gluten free diet to see if your health improves. That is what I am doing now. It's been one month and I have a ways to go but I do see improvements. I do also eat super healthy now, lots of fresh fruits & veggies and lots of protein and healthy fats plus whole food vitamins for extra nutrients. I figure I have nothing to lose by going down this path and possibly everything to gain. I wish you the best and hope that whatever it is, you find the trigger for your ill health.

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    Guest jaymes

    Posted

    I'm getting tested on May 5th. I've suffered from sicknesses all my life, sick once a month and constantly have stomach issues, always tired, tons of migraines and vertingo. After a friend lovingly pushed me into getting tested, I decided to take the plunge and make an appointment. She was diagnosed about 10 years ago.

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    Guest Theresa Taylor

    Posted

    My daughter has been suffering chronic constipation since Dec 2010. She soils everyday, and has been on various meds for it. Her bowel seems to be all over the place, one minute poo is normal then next its very runny. She suffers from stomach pain and has a swollen stomach all the time. An enema was used back in March but it didn't clear her. She suffers from migraines and UTIs too.

     

    She was given a few blood tests today incl. one for celiac disease.

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    Guest Craig S.

    Posted

    I was diagnosed after my two sons were diagnosed. My two year old was suffering for six months while doctors suggested a brain tumor, muscular dystrophy, and everything but celiac disease. His abdomen was grossly distended, all muscle tone was lost, he was emaciated, gaunt, had horrible diarrhea, vomiting, skin sagged where his buttocks should have been, he was grossly anemic, suffered from edema in his legs, vitamin k was so low that he need shots for fear that he would bleed out from an endoscopy. So finally he was diagnosed while in the hospital, for lunch the hospital sent him a hamburger on a bun. As a result of his diagnosis the rest of the family was tested and found that his 6 year old brother was celiac as well. I was 42 years old then and had been undergoing treatment for suspected Lyme Disease for the past 3 years. I had aphasia, loss of balance, swollen joints, muscle pain, neuropathy in all my limbs, rash on my elbows, (otherwise known as dermatitis herpetiformis) loss of gallbladder, loss of memory and going down hill fast. I spent 6 months on ceftriaxone via PICC that I administered myself. I suggested to my doctor that I was Celiac too even after 2 neg blood test and 2 endoscopies, was told to go Gluten Free and within 6 months to a year all my symptoms were gone. In hindsight, I have been sick my entire life and did not know what normal was until I went Gluten Free. I have notified all my immediate and extended family to the fact that I and my children are celiac, and found that my two sisters are celiac. My mother was diagnosed as having Alzheimer's disease at 60 years of age and died this year at 69 years old. I challenged many doctors to investigate whether she was celiac too, but once you are labeled with Alzheimer's disease you are doomed.

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    I have suffered all my life since I was a baby. At 2 years old my parents started to notice symptoms. I was severely constipated, skinny, and would throw up all my food every week. They were so worried about me they took me to so many different doctors and no one suggested celiacs. I'm 22 years old now and have gotten considerably worse over the years. I am so mad. I have been to my family doctor over the years so many times and each time she would dismiss it as something else, usually saying I have a lazy bowel and not eating the right things. I have lots more symtoms though: bloating, cannot put on weight but have a tummy that always makes me look pregnant, weak muscles, severe stomach cramps and bowel pains, more recently acid reflux, heart burn, feeling of something being stuck in my stomach, tingly in fingers/feet, dizziness, constant headaches, light headedness, the list honestly goes on and because I never have diarrhoea my doctor said celiacs was not possible for me. Recently I decided to research about this and have read articles where people can have celiacs and suffer constipation only symptoms. After this I demanded to be referred to get a scope from my so called doctor. I had the scope last week and the hospital doctors have said that I have gastritis so far which is stomach inflammation just from looking at the camera picture and needed a biopsy which will be tested for celiacs. I'm nearly positive it is celiacs but currently awaiting confirmation, and after all these years!!!!! Thank you to all who have posted about this, only for you I would still be undiagnosed and suffering even worsened symptoms as the years went on, as many of you have experienced unfortunately. Keep up the posting and awareness of this and find a good doctor (I am in the process). Don't let doctors fob you off, if you think there is something wrong, it is your body you know more than anyone else when there is something seriously wrong!

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    This information came to me from Michael Walker (xix25@dial.pipex.com) of Genesis Diagnostics Ltd.
    Press Release: Genesis Diagnostics Ltd, Cambridge, UK have announced the development of a new and sensitive test for celiac disease. The test will be available through hospital laboratories. The test is based on detecting antibodies to an enzyme called transglutaminase in blood. The new test is more specific for celiac than currently available tests and should result in speedier diagnosis.
    Genesis Diagnostics is a manufacturer of ELISA based kits for autoimmune diagnosis. We already produce kits for gliadin IgG and IgA antibodies, which have been used for the past 5 years as the main test for celiac disease. The new test for transglutaminase was an obvious development of our experience in this area. We will continue to develop and improve blood tests in this area.
    We will be seeking FDA approval for the transglutaminase test kit in 1999. In the mean time it can be used for research only.

    admin

    Am J Gastroenterol. 2002;97(11):2702-2704, 2785-2790
    Celiac.com 04/30/2003 - The results of a population-based study published in the November 2002 edition of the American Journal of Gastroenterology indicate that it is time to change celiac disease screening methods. Karoly Horvath, MD, PhD, from the University of Maryland School of Medicine in Baltimore, and Ivor D. Hill, MD, from Wake Forest University School of Medicine in Winston-Salem, North Carolina, found that testing first for tissue transglutaminase (tTG) antibodies followed by endomysial antibodies may eliminate the need to screen using antigliadin IgA.
    Using a community-based population the researchers screened the blood of 1,000 consecutive subjects (age 16 to 71 years, 497 women) using the three tier classic screening which looks at IgG and IgA antigliadin antibodies, followed by endomysial antibodies (EmA) and total serum IgA in positive patients, and finally at intestinal biopsies of patients with positive EmA. The study screening protocol consisted of the use of a commercial guinea pig anti-tTG antibodies and total serum IgA, the with EmA (IgA and/or IgG) for positive patients followed by intestinal biopsies.
    The classic screening found five patients who were eligible for intestinal biopsy, and celiac disease was confirmed in all five. The study group yielded the five patients identified in the classic screening, plus two more with positive IgG antigliadin antibodies and normal total serum IgA (both were positive for EmA).
    Juan C. Gomez, MD, and colleagues from San Martin Hospital in La Plata, Argentina write: "Our data showed that a new screening protocol using [anti-tTG] as first line followed by endomysial antibodies is a cost-effective screening and yielded more realistic figures of prevalence for celiac disease in a community setting than the classic three-level sequential evaluation using antigliadin antibodies." In addition to being more sensitive than the classic method of detection, the new screening protocol is cheaper: $3,006 per new patient detected vs. $4,687. Further: Although we still did not perform intestinal biopsy on all those subjects with positive anti-tTG tests but negative EmA, current evidence appears to suggest that the addition of EmA to the seropositive anti-tTG patients might have a key role in the simplified screening avoiding unnecessary biopsies, although the researchers still recommend using a biopsy to confirm diagnosis until the new protocol can be standardized.
    In conclusion: We recommend using the anti-tTG as the initial test in both population screening studies and for individual cases suspected of having celiac disease on the basis of symptoms or conditions associated with the condition...(T)hose with positive results should be tested for EmA as a second step in the screening process and, if positive, should undergo an intestinal biopsy for confirmation of the diagnosis.

    Jefferson Adams
    Celiac.com 10/01/2009 - Antibodies to deamidated gliadin offer a promising new tool in the diagnosis of celiac disease. A team of researchers recently set out of examine serodiagnosis of childhood celiac disease assay of antibodies against deamidated gliadin.
     The research team was made up of Christian Prause, Thomas Richter, Sibylle Koletzko, H. Holm Uhlig, Almuthe C. Hauer, Martin Stern, Klaus-Peter Zimmer, Martin W. Laass, Christian Probst, Wolfgang Schlumberger, and Thomas Mothes.
    Their results show that the ELISA for gauging IgG antibodies to deamidated gliadin-analogous fusion peptides (GAF3X) performs better in children than does the ELISA for gauging antibodies against native gliadin, and compares favorably to results for IgA antibodies against tissue transglutaminase (IgA-anti-tTG).
    By combining investigations of IgG antibodies to GAF3X (IgG-anti-GAF3X) with IgA-anti-tTG, a significantly higher number of children were positively confirmed to have celiac disease, or to be free of celiac disease.
    The new IgG-anti-GAF3X ELISA detected three instances of IgA deficienc, along with two cases of silent celiac disease, in addition to improving diagnosis of children under 2 years of age.
    It will be interesting to see where these enhanced approaches for diagnosing celiac disease will take us. Much research certainly supports the benefits of early diagnosis and treatment, especially with respect to the development of conditions associated with untreated and/or latent celiac disease. Even the ability to diagnose a new category of gluten intolerant individuals might gain steam from more refined screening techniques.
    Source:
    Annals of the New York Academy of Sciences - Volume 1173 Issue Contemporary Challenges in Autoimmunity, Pages 28 - 35


    Jefferson Adams
    Celiac.com 08/19/2013 - Data from blood studies suggest that about 1% or so of North Americans have celiac disease. However, there is no good screening data based on small intestinal biopsy performed during routine endoscopic evaluations.
    Researcher H.J Freeman recently set out to determine rates of detection of adult celiac disease via duodenal screening biopsies over a thirty year period.
    For his study, he looked at patients referred between January 1982 and December 2011 for evaluation of gastrointestinal symptoms that required elective investigative upper endoscopic assessment, and who underwent duodenal biopsies to determine whether changes of adult celiac disease were present.
    Freeman looked at a total of 9665 patients, including 4008 (41.5%) males and 5657 (68.5%) females, who underwent elective endoscopies and duodenal biopsies.
    Overall, 234 patients (2.4%) exhibited changes of celiac disease. That included 73 males (1.8%) and 161 females (2.8%).
    During the first 20 years, the number of biopsy-positive patients in five-year intervals progressively decreased, while, during the next 10 years, the number progressively increased.
    From this study, the team concludes that celiac disease is far more common in specialist practice than has been suggested in the evaluation of healthy populations using serological screening studies.
    Endoscopic duodenal biopsy is an important way to spot underlying celiac disease and should be routinely considered in all patients undergoing an elective endoscopic evaluation.
    They also note that the appearance of biopsy-defined celiac disease may be influenced by non-inherited factors, possibly environmental, which alter its detection over time.
    Source:
     Can J Gastroenterol. 2013 Jul;27(7):405-8.

  • Recent Articles

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com