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  • Amy Leger
    Amy Leger

    Stories of Celiac Disease Symptoms—Both Undiagnosed or Misdiagnosed

    Reviewed and edited by a celiac disease expert.

    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!

    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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    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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    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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    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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    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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    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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  • About Me

    My daughter was diagnosed at 15 months old back in 2000. I have been passionate about celiac disease and the gluten free diet ever since. Now my brother was just diagnosed and during the 2008-2009 school year my husband and I took in a Norwegian exchange student with celiac disease. I have just started a blog called www.thesavvyceliac.com and enjoy sharing my views and experiences with others through my blog.

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