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How Long Did It Take To Get Diagnosed Wtih celiac disease? Any Misdiagnosis's?


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#1 gingerthing

 
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Posted 31 January 2013 - 10:04 AM

Doing a POLL on how long it took people to get a diagnosis for Celiac? ALSO, did you have misdiagnosis's? And how severe were your symptoms?
Thanks...
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Dx: Celiac 2013 (Recent)
Hashimoto's
Dysautonomia
Lupus Anticoagulant

Misdiagnosed a lifetime til Age 41:

Misdiagnoses in last 15 years, Reactive Hypoglycemia, Anxiety, Depression, Fibromyalgia, Pelvic Congestion Syndrome, I.B.S., Lactose Intolerance, GERD, Kidney Infections (over and over...negative Bacteria!), Viral Gastrinitis (more times than i count), Panic Disorder. And I can't remember the rest!

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#2 nvsmom

 
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Posted 31 January 2013 - 04:17 PM

I remember going to the doctor at around 7 or 8 because of my stomach aches. I was told that I'm "just one of those people who have stomach aches after I ate" and ran with that for the next 30 years. :rolleyes: The only reason I revisited it was because my son was starting to get stomach aches and did my research as to what coule be causing his pain and found that I fit the profile. I did a Biocard home test, got a positive result and took it into my current doctor.

I guess I was technically misdiagnosed for 30 years. Once I figured it out I just told the doctor and he confirmed it with more tests. LOL I never had my stomach aches, migraines, thinning hair, and arthritic like joint pains called anything else. The most helpful response I ever got was, "If it doesn't go away in a few months come back and see me,".... I now wonder if my idiots doctors realized that autoimmune disorders tend to wax and wane and did that to me on purpose so they wouldn't have to put in the effort to figure it out... I think they were just clueless.

My symptoms were fairly severe in that they affected my everyday life. My joints made it hard to do things, the fatigue slowed me down, the migraines were...well, migraines and with me close to half of the time, my hair loss got to the point that you could see to the middle of the top of my scalp (through the hair) and I was getting self conscious, and the stomach aches and bloating were sore enough by the end of the day that it hurt to stand up straight, and I always wore or carried a bulky sweater so I could hide my swollen gut a bit... It wasn't debilitating, but it didn't feel very good either. LOL
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#3 ravenwoodglass

 
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Posted 31 January 2013 - 04:49 PM

Welcome to the board.
Basically my signature says it all.
I hope you recover soon but it does take time for most of us. Ask any questions you need to and do know you are not alone in a long time of suffering. It will get better though. Ask any questions you need to and feel free to vent if need be.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 gingerthing

 
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Posted 31 January 2013 - 10:01 PM

Looking at both the replies above, my experiences are extremely similar to both of you.....the migraines and abdominal pain was insane. Like I would be having a perfectly wonderful day out doing something fun and just grab on to my stomache with these sharp pains where i could barely stand-up and not vomit at the same time. And I kept being told it was a bunch of stuff it wasn't or treatment didn't work OR worst that it was Anxiety, anxiety on perfect wonderful day out??? Really??? It was getting hard to believe....so glad i found this site!!!


Welcome to the board.
Basically my signature says it all.
I hope you recover soon but it does take time for most of us. Ask any questions you need to and do know you are not alone in a long time of suffering. It will get better though. Ask any questions you need to and feel free to vent if need be.


  • 0
Dx: Celiac 2013 (Recent)
Hashimoto's
Dysautonomia
Lupus Anticoagulant

Misdiagnosed a lifetime til Age 41:

Misdiagnoses in last 15 years, Reactive Hypoglycemia, Anxiety, Depression, Fibromyalgia, Pelvic Congestion Syndrome, I.B.S., Lactose Intolerance, GERD, Kidney Infections (over and over...negative Bacteria!), Viral Gastrinitis (more times than i count), Panic Disorder. And I can't remember the rest!

#5 1desperateladysaved

 
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Posted 01 February 2013 - 09:33 AM

What was I thinking? I know the symptoms of bloating, fatigue, and fogginess were there 30 years. The doctors couldn't seem to come up with any answers when I thought I needed them. I had eczema which could not be solved. I had vomiting and nausea in pregnancy and that could not be solved. Anyway, so I didn't trust doctors with my health. I turned to natural foods and finding roots to my health problems.

Like any other health nut, I knew that grains were the panacea of good eating. The more problems I had, the more I ate grains!

I was teaching homeschool from the couch in about 1994 and realized I just couldn't keep on that way. I received help from a chiropractor that did nutritional tests. My constant shakiness and my eczema went away. I was less anxious. I made improvements, but after three years and never balancing out, I hoped I could handle things myself.

In the summer of 2007 I was so thirsty that I walked around dispairing and drinking water. My fatigue and fogginess grew to hurricane velocity. When I stood up, I felt like I was crashing. . I returned to the chiro. She found my blood pressure was high. My heart rate would plumment when I stood up. With supplements the blood pressure and heart problems improved. Eventually, though, over the five years, I had fatigue and fogginess come back. Still the blood pressure curve and heart remained improved. Yet, I reported that every tissue in my body felt irriatated in November 2012.

My chiro asked if I were still eating gluten. . Yes, not wheat, but spelt, kamut, and barley. All she did was ask and then I Iooked into it. I thought that a gluten intolerance could explain some of my problems. I cut out gluten. After a few days I noticed thatt I was having real negative reactions to accidental exposure. I did a genetic test and was 4/4 alleles for celiac/gluten issues. I cut out other intolerances, I did a rotational diet. Now, I have a clear mind. I am about 7 months grain free. I am wondering when my next dive will be and how it will be remedied.

I attribute my not being diagnosed to several things. I did not feel pain like one would expect to feel when they bloat 9 inches over night. I bloated, but was it my imagination?. (NO. ) I was numb, at one time, I was so numb that I couldn't feel my finger burning on a hat pan, until it was really deep. I figured out I was numb, because occassionally the feeling would come back and my skin would feel super sensitive.. My family had nobody else diagnosed with celiac disease. I do not communicate well with the doctors when speaking. With my current plan, I write down what I am thinking and bring it in, or e-mail it.

My feet would hurt, but nobody ever could figure out why. This pain actually crept on up my legs over time. At the shoe store the lady measuring my feet asked if I knew that my feet were swelling up and down big time. I recall a "Glucola" test in the past when my blood sugar was 80 one hour after drinking the solution! The doctor called it low, even for fasting. Now, I think that is because I wasn't absorbing it. All of these lead me to be happy that the roots of my problems were finally found and that I can do something about them.

Meanwhile, I am not absorbing nutrients well and will have alot of recovery time. I am glad that I am able to give my body an optimal level of nutrients to help recover.



The more I consider when my symptoms began, the more I really think that 30 years back was not the beginning.

Diana
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#6 KristenS

 
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Posted 01 February 2013 - 01:09 PM

Three years (I think?) my only symptom has been iron and nutrient dufficiencies. My doctors originally thought I had an eating disorder!
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31 years old

Diagnosis: Severe Malnutrition due to Celiac - November 2012 via biopsy.
Severely iron deficient for 3+ years before diagnosis. No GI Symptoms. Two negative blood tests before biopsy.
IV iron infusions & monthly B12 injections


#7 Flaykee

 
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Posted 02 February 2013 - 12:20 PM

Officially diagnosed celiac disease on January 14, 2013. A life changing day for me! Finally I got answers! :) At the age of 47.

For me, I have been lactose intolerant since childhood. As an adult, I went through prescription after prescription for indigestion, heartburn, constipation, migraines. I always thought I just had a bad digestive system. IBS, constant bloating and and in 1997, diagnosed with diverticular disease. Suffered 2 miscarriages (2001 and 2002) then infertility. I had a major surgery in 2007 and that's where it all kicked into high gear. Perimenopause started shortly after that. Wonderful rashes (funnily symmetrical in pattern!) started within weeks of my operation, I thought I'd picked up an infection in the hospital! (prescribed creams and ointments for allergies, eczema, dermatitis, menopause symptom) 2007 - Asked my then doctor if it could be celiac. He replied that because I wasn't wasting away, no.

My rashes persisted. The ones behind my ears (beautiful welts) were always there, sometimes to the point of scratching till they bled. Clearing up now, but scarred.

About 4 years ago, bloodwork done and I had to start taking prescribed iron and B12 supplements. That was it, no investigation into why. Just the "age" thing. Oh and the hypertension so more meds!

From the I time started perimenopause, attributed everything to that, including the weight gain. Went to the dr a couple times because I couldn't understand why I couldn't lose weight, gaining when I should be losing. "At your age....", "When a woman is going through menopause...." "Maybe you have to exercise more than an hour daily..."

In mid to late 2012, the symptoms got worse. Bloating and gas was awful and I was suffering severe reflux. I wasn't sleeping at night but was exhausted when I went to bed. It started affecting my joints. I was barely able to walk with knee pain, couldn't walk up or down stairs normally. Ankle pain intense. I felt and looked older than 47. "The old lady walk" we referred to it as.

Memory bad, foggy, numbness in the face, inside tremors, panic attacks. Extreme fatique (couldn't dress in the morning without taking breaks between clothes items, did the dishes in stages... water in sink, rest, wash half the dishes, rest, wash other dishes, rest.....) no energy whatsoever. It put a strain on the marriage cuz hubby was doing everything and I couldn't.

He must've thought I was lazy but I honestly believed I was dying :( And the doctors could find nothing wrong.

Finally my doctor actually listened to me and got the ball rolling. She's a star! LOL I think she was almost willing to give me a diagnosis without the tests just by what I was telling her and what I had written down. I took a full family history. I think my mom is undiagnosed with her symptoms. And I think that my late grandmother who suffered ill health and died at age 54 was undiagnosed based on her symptoms and illnesses.

So yes, for me it was years and years of being told it "was this or that" mostly because I was had weight gain and constipation, as opposed to loss and diarhhea. Oh well, still, a new lease on life!

Best of luck to you all on this journey!
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#8 frieze

 
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Posted 03 February 2013 - 09:43 AM

the doc who said no, based on "not wasting away"., have you communicated with him? I have a very uncomplementary name for him.....
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#9 Flaykee

 
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Posted 03 February 2013 - 10:21 AM

the doc who said no, based on "not wasting away"., have you communicated with him? I have a very uncomplementary name for him.....


Oh believe me I wanted to get in touch with him. Problem is that was during my 8 years of living in Ireland (have since moved back to Canada) And that dr has retired. I was so relieved to get my results, then the anger with him kicked in!!
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#10 Happyw5

 
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Posted 03 February 2013 - 06:36 PM

When I was a little girl I always had stomach aches. My mom always said just lay down and they will go away. I remember in high school I would call my mom from school dances and have her come pick me up at like 8:00 and I would be laying on the curb by the time she got there. Stomach issues were always my problem.

As an adult, things started getting bad after my 3rd baby. I was miserable with stomach aches. I couldn't eat anything. They ran every test they could on me. I had very low iron and I had an extrememly high eosinophil count. After a thousand tests I was finally diagnosed with a severe peanut allergy, OAS, gerd, and IBS. Started getting better and then a couple years later I had baby #5 and it all started again. I knew this time, because I would actually fall a sleep while I was eating (right at the table). Went to the dr this time and my eosiniphil count was sky high again. This time I was allergic to grapes, hazelnuts and wheat. Went wheat free and started feeling great.

After a while, I started eating a little wheat here and there, and eventually I was getting sicker than ever. I had the severe belly aches, extreme diarrhea, I was having seizure type episodes at night, and more symptoms then you could imagine. Went back in and had a celiac panel done, and it was negative. I was mostly wheat free at that point, so I don't know if I truly have celiac or not. But I will never go through eating wheat again to find out! My son is starting to have a few problems so maybe I will find out through him, when he gets tested.
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#11 funkflex

 
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Posted 05 February 2013 - 06:14 AM

At first they thought I had post-viral fatigue syndrome after mononucleosis. Right before I fell ill with what seemed to be a though version of mononucleosis, I went to my GP with my stomach and gas problems. "Problems with air? Just let it out!". Easier said than done when you stay most of your day in the office or at the library.

Since then I switched GP but didn´t bother to mention my gas problems as my first doctor didn´t see any reason to dig further into it. My next GP didn´t ask how things were stomachwise, and it never crossed my mind to mention it, as I never stumbled upon any link between stomach problems and mono or postviral fatigue syndrome during my google-sessions.

It took me 2,5 years from the first time I went to my doctor till an ME/CFS specialist took a blood test for celiac disease and probably found the cause of my fatigue. Meanwhile I had become bedridden, fatigued and unable to work nor care for myself. I´ve had problems with my stomach for at least 5 years, but didn´t consult any doctors with it until the aforementioned episode around three years ago.
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#12 luvs2eat

 
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Posted 05 February 2013 - 08:01 AM

I seem to be out of the "normal." I had no symptoms whatsoever until I was about 49. I had an iron stomach and could eat anything. At 49, I developed unrelenting diarrhea... up once or twice a night... and belly noises you could hear across a room. I used to say I had wolverines in there fighting to get out! I had no pain, no nausea, no other symptoms at all.

I remember calling for an appt. w/ the GI doc. They offered me an appt. about THREE months later!! I said to the scheduler... "Did I mention that I have unrelenting diarrhea???" I got in about a month later!

My GI said he'd never seen such high blood levels. I went gluten-free the next day. I think it took a whole year before my bowels returned to normal.

So, I had symptoms for about 2 months and saw the doc a month later... 3 months total! In the 10 years since, all 3 of my daughters have been diagnosed. No one else in my immediate or extended family has it!
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Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#13 Cara in Boston

 
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Posted 07 February 2013 - 09:50 AM

I had no problems until after my second child was born (age 38). Suddenly I had a very "sensitive" stomach - I was always in the bathroom. I never mentioned it to my doctor, just thought I was getting old. Then, over the years, I had one medical problem after another . . . always alarming, doctor would send me to specialists, they never found any problems. Dizzy Spells - saw a neurologist, next year it was heart palpitations, saw a cardiologist, numbness in my hand and feet, brain fog, etc. etc. Since they never found a single problem, my doctor just started to assume I was overly dramatic . . . I just stopped telling her my symptoms.

When my son was diagnosed at age 5, I read the list of symptoms and realized I probably had it too. Since all the "specialists" never really talked to each other, (and I never really mentioned the GI symptoms) no one had a complete picture of what was going on. My blood test was positive, but my endoscopy negative. I went gluten free with my son and all my symptoms went away. Other stuff too . . . my hair grew back thicker, my daily headaches went away, my insomnia went away, no more anxiety . . . I feel great.
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