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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 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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    I am 31 and was dx 5 months ago, after having severe stomach pains, joint pains, depression, and a mysterious rash for six years. I was seeing separate docs for all four of these, and then a blood test came back indicating anemia -- I asked about it, and the doc said all my tests came back like that and she figured it was just the way I am. I couldn't believe that she never thought to mention treating that! So, I started taking supplements, but still felt terrible. And then I began doing my own research and that led to celiac disease. I was just hoping to correct the anemia, and I was totally surprised when my severe stomach cramping (that regularly sent me to the emergency room) went away and eventually all my other symptoms, except for a lingering issue with blood sugar, which I'm afraid might be permanent. Anyway, my middle child is having problems with stomach aches and diarrhea and constipation, and I've been reluctant to put her though a scope (she's only 4) but I am becoming convinced that it'd be better than for her to suffer years until a proper dx and treatment, whether it's celiac disease or something else.

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    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.

    Just a note on Elaine's Book, it's a great book, but many people with gallbladder trouble end up having celiac disease. I went on Elaine's diet for six months and ended up with gallbladder trouble due to the high fat content of the diet. What has worked best for me is Caldwell's Esselstyn's diet, minus the gluten. All the time I was on her diet, I thought it was the celiac disease making me sick. It was the gallbladder, and having it removed made me feel better than before.

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    I'm 48 and recently was diagnosed with celiac 2 weeks ago, after requesting an endoscopy due to acid reflux issues. This was my 3rd one. I was diagnosed as having anemia about 4 years ago. Recently in that past 7 months, I kept having severe stomach issues such as cramping. One night I was taken away on an ambulance. It seemed that everyone who helped me at the hospital prematurely assumed that I was an hypochondriac that was craving attention. Believe me I have better things to do with my time. As I look back on all of the sick stomachs, aches, pains and feeling exhausted, feeling like I was in a fog, etc...it makes more sense now. Once I started the gluten-free diet, my life and health have improved immensely. No one else in my family has it as far as we know. But I encourage them to get the test the next time they go to their General Practitioner. I wish all of you on the board the best as you deal with the challenges of this condition.

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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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