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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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    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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    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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    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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    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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    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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    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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  • 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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