How Many Doctors/tests Did You Have To Go Through To Get Properly Diagnosed?

[sillyyak]

I was curious as to how many doctors/hospitalizations (if any), etc did you have to go through to get diagnosed with sprue? Did anyone get so sick they were hospitalized and the doctors still could not figure it out?

[jerseyangel]

I have to think about this one for a minute. Going back close to 20 years, I really wouldn't know how many Doctors to list. During that time, I lived in 3 different states and moved 7 times. I have seen many Drs., in different locations, and you would think that someone would have come up with the correct DX, but, no . I have endured unnecessary antibiotics (to the point that I'm allergic to most), steroid injections (the long term effects are showing up now in the form of hypertention), surgery to "correct" my anemia (it didn't). When I tried an Alternative Medicine, I was told--for the first time--that I should not eat wheat, oats, barley and rye. At that time, I knew nothing about gluten. This led to my doing a bit of research on my own. I took the little I knew to a Gastro. here who listened to me and finally DX me.

[krisb]

I have gone my whole life with many health issues and gluten was never brought up as an issue. It wasn't until my son was going through many health issues that the Dr.'s just were so baffled by, that I went and did my own research and realized that most of my family have a gluten intolerance or celiac. Even when I brought up the subject to his allergist he made it like i was nuts and a hypo. His Pediatricain ran the blood work and it came back positive. He told me to just put him on a gluten free diet and that was it. His allergist insisted his Ped. was wrong and I was still overreacting. It went back and forth for a while and then i went to a GI Dr. She did her scope and found lots of damage to his insides and his genetic test was positive. I had to do all the research myself to push for his diagnoses and putting him on the diet shows so many posistive results. I tested my other kids and they all came back positive. I put myself on the diet also. We have all seen so many results that i wish I did this sooner. The Dr.'s were useless and I don't have much trust in them.

[i canary]

Like Jersey Angel I have been to too many doctors to count - more than 50 - less than 100... In 5 different states over 45 years. They all had one of three diagnosis: 1. food poisioning 2. an un-named virus 3. or nothing is wrong with you. Until I went to a medical doctor who was also interested in alternative medicine. Bless her!!!

[ianm]

Easily more than 30 doctors and not one of them ever suggested gluten or a dietary problem. All they wanted to do was write prescriptions and lots of them. I had to diagnos myself.

[par18]

Family doc treated me for IBS symptoms for a couple of weeks in mid April 2005 following bout with flu. Sent me to GI in late April 2005. GI had 3 tests run the two days after initial visit. (CT scan, upper and lower scope). Found sprue on upper scope and notified me via phone after only 5 days. Diagnosed on May 03,2005. Went on diet that day. Everything fine. Never had follow-up visit. Really didn't need one. Basically I had very good doctors.

[Ursa Major]

I went to so many doctors with so many health problems (really, all quite typical of Celiac Disease) in my 52 years, both in Germany and here in Canada, that I wouldn't be able to count them all. All of them were clueless, I finally diagnosed myself after being severely ill from May to October 2005. I don't trust doctors any farther than I can throw them. I do my own research and tell my doctor what to do, which fortunately, she usually does. She is very nice and quite clueless. Unfortunately, where I live we have a severe doctor shortage, you're fortunate if you have a family doctor, many people have to go to walk-in-clinics instead. So, there is no chance of changing doctors for me.

[mytummyhurts]

I was very lucky, I was diagnosed on my first trip to the doctor when I was complaining of my symptoms. But I also had the typical celiac symptoms, weight loss, diarhhea, etc. I just feel very blessed that I described my symptoms to my gynecologist who diagnosed me. If I had gone to my regular doctor like I was intending I'm not sure if they would have figured it out as quickly.

[cdford]

I had seen many, many doctors for a slew of different symptoms over decades. It was not until I was fully disabled with neurological problems and my daughter was finally diagnosed that anyone even thought to check for celiac disease. By that time, much damage was done to multiple systems. I am just glad that I have a chance to get better now. I sure did lose a lot of years, a lot of credibility (family, friends, and docs were sure I was just a hypochondriac until enough damage was done for it to no longer be in my head), and a lot of money in the process, though.

[Rikki Tikki]

I had gone to the doctor about 13 years ago, he ran a blood test that came back positive for a little known disease called celiac, which he assured me was so rare that he was sure I didn't have it. I took him at his word and spent several years very sick then finally went back to another doctor after losing a lot of weight and being very sick who diagnosed me positive with blood and biopsy.

All total I would say I had been sick since about 1993.

As a side note my mother and brother were recently diagnosed with it. My mom was very ill which the doctor attributed to depression (go figure), sounds familiar to most of us. My brother had no symptoms but a lot of damage.

Knowing what I know now, after getting so sick the first time I should of taken matters into my own hands and kept searching, but I was to willing to believe it was depression or stress.

[Nancym]

Dr. Me and Dr. Fine figured it out. I ran into a poster from this message forum (Hi Rachel) on a thyroid forum and she told her story and a light bulb went off in my head and I was pretty sure it was my problem too. So I just decided to try a gluten free diet and my constant IBS cleared up. That clinched it for me. But I wanted an official diagnosis so I had the enterolab analysis done. That was it. I have the genes, the antibodies, the works. I told my siblings but they don't seem to be following up on it.

I'm not that good of a doctor though, it took me 20 years to figure it out. :\

[Rachel--24]

Dr. Me and Dr. Fine figured it out. I ran into a poster from this message forum (Hi Rachel) on a thyroid forum and she told her story and a light bulb went off in my head and I was pretty sure it was my problem too.

Hi Nancy!

Easily more than 30 doctors and not one of them ever suggested gluten or a dietary problem. All they wanted to do was write prescriptions and lots of them. I had to diagnos myself.

My post reads exactly like Ian's....about 30 doctors in only 3 years. I was off work on disability and would NOT let the doctors forget about me. Not that it helped....they never cared.

[tiredofdoctors]

Let's see -- 2 Rheumatologists, a Primary Care Physician, one opthmalogist, two neurologists, then finally the psychiatrist that does my ADHD meds referred me to her husband -- a vitreoretinal surgeon -- who referred me to the GI doc. He immediately did bloodwork and set me up for an endoscope and colonoscopy. I guess that makes it nine physicians total! Kind of makes you wonder, huh?

[CMCM]

Hmmm...let's see. Multiple times extensive testing for asthma over a 20 year period. Even a heart specialist checking for heart related causes for my incessant cough and difficulty breathing. Allergists. Tested for thyroid. Various migraine treatments. Blood pressure meds that don't work. No one EVER suggested this. Not once. A few times when I mentioned my mom having it, the docs dismissed the idea for me since I wasn't underweight. Of course, who would think of celiac disease anyway in conjuction with some of the stuff I mentioned above. So yep, I decided to take things into my own hands and be my own doctor too. I'm just grateful I found this site, which has helped me immensely in putting all the pieces into place. I really just never thought of celiac disease for myself until I started reading stuff here, and seeing that so many people had exactly the same unexplainable and seemingly untreatable symptoms and experiences as I have had for so long. And no, I don't think very highly of the diagnostic capabilities of most doctors. Don't they ever read anything? There is increasing awareness and publicity about celiac disease....don't they have any curiosity about this? Doctors who really wanted to study this should come over to this forum....a veritable garden of research possibilities with lots of people to provide input. Calling all doctors....where are you all?

[nikki-uk]

Well let's see...

My husband has only ever seen 1 gastro doc-but it took many years for him to dx celiac disease.

To be fair-my husband never really suffered with diarrheoa and also had negative bloods(just to make piecing the puzzle even harder)

Around 18 months ago my hubbie was admitted to hosp after suffering a 2 week spell of diarrhoea.

He'd lost alot of weight,but had always been skinny all his life.

I think he had every test possible-it was a process of elimination,and ended up staying in hosp for 4 weeks whilst having all these tests.

Here's the tests that I remember(I'm sure there were others I'm not even aware of!)

Thyroid deficiencies

Liver function tests

Diabetes

ECG (heart monitor)

T.B test(tuberculosis)

H.I.V

Cat scan of brain

Cat scan of stomach & throat

Barium swallow,Barium x-ray &Barium Enema

Colonoscopy

All of which were negative!

Thank god the gastro did a small bowel biopy too!

[debbiewil]

Well, let's see. Started having major medical problems between 3-4 months of age (just about the time cereals got introduced, duh!) Spent most of the rest of my infancy, early childhood, in and out of hospitals - got sent to several major "big name" medical centers when the local hospital couldn't figure me out. Did lots of tests, including some neurological tests, which showed damage. Was in the hospital so much, the nurses kept a folding bed for my mother in the pediatric ward, so she could stay with me every time I came in. My mother was told by one doctor when I was 2 that he wouldn't even give me a 50/50 chance of living to be 7.

Gee, does any of this sound familiar?

But I was never tested for celiac (even with a family loaded with all the associated autoimmune diseases - diabetes, Addison's, thyroid, cancers, etc.)

When I was old enough to feed myself, I ate mostly fruits, vegetables, meats and dairy. I wasn't much of a bread or pasta eater, (subconsciously knew they bothered me?) and my mother didn't like to bake, so cakes, cookies, etc. were seldom in our house. Probably the only thing that saved me. Well, I did survive past 7, and continued having health problems throughout my life, in spite of seeing many different doctors in several states. Finally got sick and tired of doctors, and sick and tired of being sick and tired, and sat down with the internet to get some ideas. Then checked a few medical reference books for more info on the most likely. Celiac headed the list every time. (And gee, it only took me about 15 minutes on the net to come up with several major hits on celiac! Doctors can't take 15 minutes to check symptoms?) Stopped eating gluten and saw some improvement within the first few days - not much, but by then, anything that improved rather than deteriorated was noticable. Did the Enterolab testing and found that I have both the DQ2 and the DQ1 genes.

So, it took me 50 years, and probably way more than 50 doctors, and I had to figure it out myself. No doctor ever caught it, although I've told half a dozen or so over the last 10 years that I simply CAN NOT eat pasta because it gives me diarrha and stomach aches! And I had to tell them that because they kept trying to push the "standard diet" with its huge amount of whole grains!

Debbie

[carriecraig]

I went to my PCP at first, who diagnosed me with IBS, and to eat bland foods - toast, graham crackers, etc. After a couple of weeks of not feeling any better, I knew it wasn't IBS and went to see my GI. Just by telling him my symptoms, he pretty much diagnosed me on the spot. I had the blood test that day, and he also did some fecal testing to rule out parasites, and my endoscopy and biopsy was scheduled. All came back positive, so he was right.

After reading all of these posts, I feel like one of the "lucky" ones - I only had severe symptoms for about 3-4 months, and was then diagnosed correctly.

[Guest BERNESES]

Overall- I'd say 5 primary cares (my current one is the one who diagnosed me), 4 GI's, 1 psychiatrist. Hey- I guess that's not that bad! I have to say that overall, everyone but the GI's were decent- but the only one who even had a clue was my current primary. As far as the Gi's go, I'm on my 4th and the jury is still out.

It never occurred to me to actually question doctors until all this happened!

[happygirl]

about 10 months ..... including 1 women's health dr, 1 infectious disease dr, 1 GI, 1 General Practioner, and 1 rheumatologist.....

just about every test in the book

and it was my mom who came up with the idea for the dr to run the blood panel for Celiac!

[jenvan]

it took me years...from rhemys to psychologist, othropod, chirop, holistic doc, allergist, physical therapist, endocrinologist, 3 gi docs, infectious disease doc, 2 dermatologists, hematologist and several more i'm sure i'm forgetting!

[Timber4est]

I don't think I could count the number of doctors I have seen through the years. It only took 35 years of going through "it is all in your head" till at last a colorectal cancer specialist diagnosed it.

A long journey for sure, but there is light at the end of the pain at last.

[Guest stef 4 dogs]

I was curious as to how many doctors/hospitalizations (if any), etc did you have to go through to get diagnosed with sprue? Did anyone get so sick they were hospitalized and the doctors still could not figure it out?

Oh Boy did I have problems getting diagnosed! I was sick for a year and a half. My family doctor sent me for tons of tests and when nothing showed up, she told me to see a therapist. She said it was all in my head! After calling and leaving lots of messages that she never returned. she told me to see someone eles in her practice she coudn't help me! The next person preceded to call a hematologists who recommened the blood test that changed my life! Within 4 weeks of that test I was off to see a Gi doc who did the endoscopy and confirmed my diagnosis and put me on a better path! Needless to say sometimes i find this an up hill battle! I had so many sypmtoms I was afraid to tell the next. doctor because i started to believe maybe it was in my head. I worry about how much damage was done to my body in all the time of mis-diagnosing!

Stef 4 dogs

[ehrin]

I consider myself to be extremely lucky - the only reason I wasn't diagnosed sooner is because I wasn't complaining. My symptoms are gas, gas and more gas - I just thought I was gassy, but recently I decided that it simply is too much gas for one person to have. When I finally went to my PCP he set me up with my GI for suspected diabetic gastroparesis. My GI scheduled an gastrowhateverscopy and while he was in there seeing if my stomach was emptying in a timely manner (which it doesn't) he decided to do a biopsy of my small bowel, "just in case."

TA-DA!

Diabetic Gastroparesis and Celiac Disease - all within one week of each other.

I have a smart, smart, SMART doctor - wouldn't trade him for the world.

[Guest BERNESES]

I just thought I was gassy, but recently I decided that it simply is too much gas for one person to have.

I'm sorry about your diagnosis but I had to laugh when i saw this part beacuse it sounds EXACTLY like what my husband said to me- how much disgusting gas can one woman have? I was out-farting him!