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Cd Diagnosed After 5 Years Of Misdiagnosis!

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Posted 12 October 2004 - 02:25 PM

I was recently diagnosed with Celiac Disease (which i had never even heard of) and had been misdiagnosed for 5 years with having IBS, and being told i had to "live" with it, while my symptoms kept getting worse and worse. I had almost daily painful diarhea, undescribable stomach pains, bloating, lack of appetite, fatigue, muscle cramps, bone pains, nausea, vomitting, you name it AND i lost 50 lbs in a year and a half not even trying to. I felt i was dying and just withering away. I felt generally unhealthy daily, and this really has taken a toll on my mental health and self esteem, forever, constantly stressing on "how i was feeling" and not knowing WHY.

Now after 5 different doctors, i finally found one that had the sence to do a blood test after listening to the severity of my symptoms that maybe it wasnt IBS afterall. BINGO! Celiac Disease. Now I am both relieved to finally "know" WHAT i have, but i am also very angry that i was misdiagnosed for so long. An easy blood test could have saved me years of bad health, unhappiness, and "unknowing"!

I had always eatin anything and everything i wanted all my life with no noticable ill affects or symptoms. I had read that traumatic events like surgery, severe mental anguish, or a specific event can trigger Celiac Disease. Thinking back, my symptoms started to occur shortly after being involved in a trumatising car wreck.

It is going to be really hard to completely change my eating habits and become gluten-free, but if it helps alleviate my sysmptoms and i start seeing results and become healthy and happy again, it will be totally worth it.

But right now I am having a really hard time dealing with it!

Anyone have any similar stories of being diagnosed with celiac disease after a traumatic life event, surgery, accident, etc?

I'm new to this forum and thought i would share my story!
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Posted 12 October 2004 - 03:46 PM

Hi Nailehead,

Welcome to the forum. You will find a great bunch of people who are here to help you navigate through the gluten free world.....

In regards to your misdiagnosis for years, unfortunately, this is all too common in bowel diseases. Personally, I started having my problems in my early 20's, and didn't get properly diagnoses until 31. I am now 41 and still battling this disease on a daily basis. Now, it has also evolved into collagenous colitis for me and that is another road I must travel.....

Any questions you have regarding going gluten free, don't hesitate to ask, no question is too small or too weird, we have all gone through this stage....

Again, welcome....
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positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden

Laughter is the shortest distance between two people.
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"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."



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Posted 12 October 2004 - 07:37 PM

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Inconclusive Blood Results, Positive Dietary Challenge Results
gluten-free since January 2004



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Posted 13 October 2004 - 06:15 AM

I too was misdiagnosed with IBS at first but then the doctor thought I should have an endoscopy just to make sure there was nothing going on inside me. When the results came back positive for Celiac I had my answer! I was also trying to think back to any tramatizing experiences that I might have had. I did have a hernia surgery but I think the hernia was caused by the Celiac (and not having strong interior lining). The only thing I really came up with was going on birth control. I wonder if that can trigger the disease. Don't think I will ever find out but I couldn't come up with any other scenario that would have triggered this disease.

I too had a very hard time with the whole gluten-free diet at first but recently I have been doing so much better. I have been gluten-free for about 7 months now and really feel like a new person.

Good luck and feel free to grieve, vent or whatever you feel like doing on this board. The people here are great and it really does make a difference knowing that you are not alone! :D
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gluten-free since 2/6/04



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Posted 13 October 2004 - 06:31 AM

I started showing sympotoms in high school and went to a couple doctors who just put me on antacids and told me to decrease my stress levels. After I dropped 30 pounds, my mother insisted I was anorexic and put me in a eating disorder program---which I was discharged from when the pyschiatrists couldn't figure out why I couldn't gain weight eating 5,000 calories a day. Then 3 more docs, all who told me it was in my head. Finally I passed out at work one day and went to the e.r.-the first question the doc there asked me is if I was ever tested for celiac disease......Finally an answer! Not the one I wanted to hear (I was familiar with it as I was working at a health food store at the time). But I think we all understand. ;)
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Eat, drink, and be merry!



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Posted 13 October 2004 - 07:02 AM

Hi Nailehard:

I too am new to this site, and fortunately am not a celiac, but my husband is. I feel experienced enough through caring for him however to post on this board. My husband like you was mis-diagnosed for many years, probably 7, it was extremely frustrating for me as well as him, because he was constantly sick, with all of the symptons you mentioned. I felt responsible, because I am the cook and the care giver in the house and to see him so sick all of the time, wore on me. We actually took a 3 month medical leave from his work, because his dr. in CA had told him that he was allergic to the smog!, that his body wasn't filtering all of the polutents and that we might want to find somewhere else to live. With what we had been through, it made sense CA is filled with tons of pollutents, so we decided to buy a used 40 foot motorhome (for a family of 5, to live in on the road for 3 months!) yes it was big (plus we towed a van) we were 63 ft long!. Anyway, we took this trip, ended up putting a down payment on a home in CO, went back to CA after 3 months, sold our home and returned to CO. During the next couple of years, my husbands sinus problems seemed to have gotten better, but he was still not feeling well. Our final straw was when we realized that he had dropped from about 170 to 138 (he's 6 ft) and his stomach was constantly bloated with horrible gas and the runs, he's color was bleak and he had absolutely no energy. To me he was dying before my eyes. With God looking out for us, we went to another GI and upon looking my husband he immediately did an upper-endoscopy and sure enough all of his villi were collapsed. Good news, he's been a celiac for about 3years now, his weight is up to 170-175 and he's completely healthy! It's hard on me at times, because I'm the one that has to prepare all of the food, but it is sooooo worth it. He's real religious about not cheating, which plays a major role in his recovery. He doesn't have ANY wheat, rye, barley, oats, durum, semonlina, farina, spelt, kamut, triticale, einkorn, bulgar, seitan, malt , vinegar or alcohal (with the occasional exception of Sake). Is it hard at times for him yes, but we have found ways of getting around things, Like I finally found a really good pizza crust that I make a canadian bacon and pinapple pizza for him (he loves it), I have to make the extra effort to make him his special pumpkin cake, banana bread, brownies etc., but he's healthy and much happier. Be glad that you have finally been diagnosed and you're now on your way to recovery. Here's something pretty amazinig, we had a young couple move in next door about 2 years ago. She became pregnant, gave birth and now has a beautiful 16 month daughter. Well since her birth, the mother has been loosing weight to an alarming number, down to 87 lbs, (she's small and petite, normal weight probably 120) anyway, the dr. here didn't know why she was so frail, she went back to her home town, I asked her to get checked for Celiac, and whala - that's exactly what she has. Good news for I feel comfortable with being able to help her along the way, her mother who lives in another state also feels relieved knowing her daughters next door neighbors husband is also celiac, we went shopping the other day, and I sent over a chicken pot pie and some chocolate cake, just to let her taste and realize be gluten-free isn't to too bad. So, point is, you never know who or what your experience may lead to in life, mine is helping my young mom neighbor become healthy again through my experience with my husband. God works in mysterious ways. :rolleyes:
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Posted 13 October 2004 - 07:05 AM

Sorry! I meant Nailehead! I was helping my son with his homework and he was stating how hard it was, and when we finished, I went to reply to your post and I transposed hard for head! SORRY (lol)
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Posted 17 October 2004 - 05:23 AM


My husband was misdiagnosed IBS for about 26 years. He too has been ruined by this disease slowly over the years; and like Jaime, abdominal musculature is so thinned down that he had 3 going on 4 hernias because of the lack thereof.

I don't believe that the blood tests for IgG or IgA - celiac - were around 10 years ago (if someone can correct me on this please do as I would be interested in knowing this).

He has lost a total of 45 lbs within the first 3 months of being "triggered" by an infection that ran thoughout his body. Doctors were uninterested in diagnosing him properly (had seen 4 gastros in years 1-17 ;he gave up in 1994 after seeing last gastro who re-diagnosed IBS).

He is sensitive to other foods (soy, pork, fruits, vegetables) so his choices are very low. Hasn't been out to a restaurant in a year now since his celiac disease diagnosis. He hasn't gained back any weight.

Since you've been diagnosed quickly, in comparision to my husband and many others, you will probably bounce back quicker.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003



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Posted 17 October 2004 - 10:18 AM

Hello and welcome! I too have just been diagnosed with Celiacs. Unfortunately, I am NOT new to this disease. My mother, oldest sister and niece also have Celiacs. I have suffered all my life with the same symptoms you describe, but I was lucky enough to go ask to be screened for the disease because of my family history. My sister was not so lucky. It took her 15 years of horrible pain, and doctors telling her she was nuts (she spent some time on Lithium and in a mental hospital to) She has endured so much, but the good news is that she is so much better now that she is on the gluten-free diet.

Good luck and I hope you feel better soon! :D
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Antibody positive, diagnosed October 2004.
Mother and two sisters with Celiacs also
Edmond, Oklahoma



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Posted 18 October 2004 - 09:50 AM

Thankyou to everyone for welcoming me and replying.

It is amazing to me and makes me so mad that Doctors can be soo incompetant.
Especially when it is a simple blood test. I just dont understand.

Oh well, at least I know i am not alone!
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