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Stories of Celiac Disease Symptoms—Both Undiagnosed or Misdiagnosed

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

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

One woman wrote me describing her daughter’s symptoms when she was diagnosed at age 15, but then she wrote back about the subsequent diagnoses of her sister and mother.Jean was diagnosed at age 70 but she and her family tell me her severe scoliosis at age 12 was a symptom! Can you believe being misdiagnosed for 58 years?Jean even had to be put in a back cast for a time.

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

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

Another contributor said her 14-year-old son was diagnosed with celiac two years ago, but has also had a kidney issue for the last 9 years.But since he has been eating gluten free…his kidneys have also gotten better, 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 some success stories:

One mom mentioned her son’s quick diagnosis. “[It] started with diarrhea.  Thought it was a stomach bug.” Then it moved to constipation and two weeks later things still weren’t right.Then their doctor put two and two together, “[An] amazing pediatrician said ‘This sounds like Celiac’ and ran the blood tests. Andrew was only ‘sick’ about 1 month before diagnosis,” she said. However looking back on it all, he had a big belly and slow to grow.

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

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

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

The stories of diagnosing celiac disease may leave many of us angry, frustrated, and possibly grateful—all at the same time. The missed diagnoses and misdiagnoses of those who have this disease presents a roller-coaster ride of emotions. I hope this article helps you in knowing many others have gone through it and are likely going through it as we speak.We just need to make sure we’re spreading the word and getting as much awareness out there as possible to help others in similar situations.

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29 Responses:

 
Tanya
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said this on
23 Dec 2008 8:02:21 PM PST
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.

 
lori turner
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said this on
01 Jan 2009 10:07:58 PM PST
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.

 
Lisa Stafford
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said this on
22 Jan 2010 8:00:43 AM PST
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.

 
admin
( Author)
said this on
25 Jan 2010 6:21:15 AM PST
Reader of that book beware: Gottschall claims her diet as a cure for celiac disease, which it is not.

 
Debbie
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said this on
08 Oct 2012 7:01:39 AM PST
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.

 
Johnathan
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said this on
02 Jan 2009 9:39:43 AM PST
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.

 
Lynne
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said this on
02 Jan 2009 10:25:48 AM PST
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.

 
Jeff
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said this on
03 Jan 2009 1:21:15 AM PST
Great article! If you can get the media interested, it will save so many lives!

 
Annette
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said this on
05 Jan 2009 2:13:28 PM PST
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.

 
Diana
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said this on
06 Jan 2009 7:18:21 PM PST
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!

 
Paula
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said this on
09 Jan 2009 7:25:04 AM PST
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.

 
Darlene Anderson
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said this on
14 Aug 2009 11:38:14 PM PST
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.

 
chell
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said this on
28 Jan 2009 5:37:11 AM PST
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.

 
ginger wilkinson
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said this on
05 May 2009 9:19:41 AM PST
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!

 
Barbara
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said this on
15 May 2009 10:26:16 AM PST
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.

 
Kryss Quinn
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said this on
18 May 2009 5:48:49 PM PST
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...

 
Robert
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said this on
04 Jun 2009 4:33:26 PM PST
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!

 
Elizabeth Campbell Duke
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said this on
09 Jun 2009 8:35:43 AM PST
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!

 
Michele Guadagnino
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said this on
16 Jun 2009 8:30:21 AM PST
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!

 
Jennifer
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said this on
21 Jan 2010 1:22:23 PM PST
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.

 
Cara
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said this on
28 Sep 2010 6:31:24 AM PST
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

 
Sheila
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said this on
19 Dec 2010 11:17:49 AM PST
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.

 
jaymes
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said this on
08 Apr 2011 3:36:39 PM PST
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.

 
Theresa Taylor
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said this on
24 May 2011 12:20:04 PM PST
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.

 
Craig S.
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said this on
23 Sep 2011 9:06:01 PM PST
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.

 
Minnie
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said this on
18 Feb 2012 2:36:57 PM PST
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!

 
Rita
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said this on
19 May 2012 11:50:14 PM PST
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.

 
Carmen
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said this on
08 May 2013 12:39:49 PM PST
Very interesting! Just by reading this has answered lots of questions for me. Thank you!!

 
Sasha
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said this on
04 May 2015 6:55:52 AM PST
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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