What All Were You Tested For Before Celiac Diagnosis?

[latteda]

Just out of curiosity, how long did you eat gluten before you were finally diagnosed with Celiac disease (by a doctor or a self diagnosis)? What all were you tested for before finally finding that gluten was the problem?

I am still not 100% sure that I have a gluten intolerance, but I'm fairly sure. I have been to the doctor on and off for the last seven years and tested (with negative results) for:

• Ulcers
  
• Rocky Mountain Spotted Fever
  
• Lyme Disease
  
• Internal bleeding
  
• Mono (tested twice in the course of two weeks)
  
• Strep
  
• Thyroid problems
  

After each visit, the doctors basically just said that it was probably a combination of little things (virus, sinuses, etc.) that were making me so tired all the time. They talked about sending me to a GI doctor a couple of times but never actually did. They commonly thought the abdominal pain was a result of a virus. The last doctor I visited all but said it was mostly my imagination.

[BRS-07]

I had never even heard of celiac til I got tested for it. I was going to doctors for dry eyes and lightheadedness along with being tired and not very energized. They always passed me off to another doctor to do this or that, but all with the same result....tests came out just fine. It wasn't till my dad got diagnosed with vitamin D deficiency that we found out my whole family is vitamin D deficient. I did some online searching and told the doctors I wanted to be tested for Vitamin A and E. Come to find out I am D & A deficient along with Iron which they discovered last week. The doctor that I switched to tested me for celiac because of the D and A deficiencies. They did the celiac blood panel which is the Transglutaminase IgA, Gliadin Antibodies IgA and the Gliadin IgG tests. All three came back high so I got sent to a GI doctor for an endoscopy which turned out positive for celiac.

Vitamin deficiencies can make you extremely tired. Most doctors won't test you for Vitamins like D, A, E, K because they are fat soluable. I had to ask for all my vitamins to be tested specifically. Also watch out for the iron testing because the first time they tested my iron they said it was fine, but the GI doctor said the test that they did could come back normal even if I was deficient. He did an iron panel and found that that was the case.

Hope this helps and I hope you figure out whats going on.

[Mrs. Smith]

I was tested for everything under the sun. Thyroid, Lymes, Autoimmune Disease, Blood Cell counts, Inflamation markers, H. Pylori, Ulcers, Parasites, Candida, Potassium, Organ Functioning, Blood Sugar, Rheumatoid Arthritis. According to all the tests I was a picture of health! They said I was depressed, Viral, whatever. My Dr was convinced it was Celiac and I thought he was crazy. I didnt think it could do that much to you. I had constant D, muscle pain, tingling in my limbs, stomach aches, weird headaches, dry skin, infertility, missed periods you name it. My Dr dosent beleive in fibromyalgia and refused the thought of it. Turns out full blown celiac and extremely vitamin deficient. Im on the road to recovery now thanks to the wonderful Dr I had always had! Im getting better all the time and so thankful that my small town GP would not let celiac die. I mean he was adament! I never knew wheat could make you feel like you were dying. Now Im 4mos gluten free and I feel like Im finally living! Good luck to you.

[jerseyangel]

Colonoscopy and gynecological testing (hystroscopy) since I was persistently anemic despite supplementation to check for internal bleeding.

A cardiac workup including an stress-echo cardiogram due to my dizziness. See above.

2 sinus CT-scans since one doctor thought my symptoms were related. Both negative.

Stool testing for parasites/salmonella. All negative.

Blood tests for a myriad of supposed causes for my symptoms..... over the years I was put on so many antibiotics I'm allergic to most of them now. Was given steroids--both pills and injections--when they didn't know quite what else to do with me.

Allergy testing for classic allergies. Negative to all foods tested.

[mushroom]

I don't recall any specific testing; it was so long ago I was complaining to the doctors, and so long ago that I stopped complaining. I do recall an abdominal scan with contrast; not sure what that was for. Of course I had the usual CBC's but nothing targeted at any specific cause of symptomatology. Was just written off as IBS and fibromyalgia and/or a headcase--this was in the 80's.

[one more mile]

I was tested for enough stuff that my diagnosis was hypochondriac. They actually had that written in my file.

I told my new doctor that I use to be a hypochondriac but now was a celiac. She laughed, apologized and said I was right.

[latteda]

I forgot that I was also tested for H. Pylori along with an ultrasound for ulcers. I was tested for blood sugar, also, but it came back fine, much to my surprise since I had diagnosed myself with hypoglycemia for about ten years.

The only thing any of them tested me for that came back positive was low iron. My last CBC showed slight anemia, but not enough for the doc to prescribe anything. The last doc I went to made me so mad. I kept telling him I'd seen other doctors every so often and no one was able to pinpoint the problem, and he just looked at me like I was an idiot and said, "It's probably just a viral infection that comes back every so often."

[maile]

prior to this year I rarely went to the MD, so a lot of stuff I just "powered" through until it got so bad I had to have some help: Thyroid (repeatedly); reflux, stress and mono....upon reflection this was the most bizarre one, afterall who the heck get's over mono in a week?

[nutralady2001]

I was never tested for anything, told I had "eczema" was sure now it was DH, this was early '60's, late '60's told I had "mucous colitis" had had problems from the late'50's , then a few years later "IBS" then this stuck for the next umpteen years until I had an endoscopy/colonoscoy in 2007 because I was anaemic and a bowel screening showed blood in both upper and lower GI tracts , then positive antibodies testing

You think over nearly 50 years a doctor would have twigged but nooooooooooooooo !!!!

[lizajane]

Thyroid over and over... they finally started treating me as a subclinical hypothyroid patient (which was great, because it did help.)

my GP told me over and over again that i was depressed. in spite of the fact that i was 1)not sad and 2)had a Psych. who said i was NOT and felt certain i had a medical problem causing the fatigue. (clearly, i have a new GP now...)

reflux

pancreatitis

gallstones

anemia

IBS

ulcers

stomach cancer

diabetes

hypoglycemia

and all sorts of things like liver and kidney function that i don't even really know about. my doc was through 'cause he is a personal friend of my husband's!

and my favorite, because the diagnosis came from nearly 2 straight weeks of throwing up every single thing i ate... pregnancy. (which is SO funny because my husband had a vasectomy! we have two boys!)

[Generic]

I had a different test done once a week for a year. I was 13 at the time so they tested me for every childhood illness and then some. A few that come to mind is sickle cell anemia, diabetes, rheumatoid arthritis and MS.

[northernsunshine]

I was told I was Lactose Intolerant.

That I had Ulcers.

Then came Gastritis.

Next IBS.

Then Gallbladder problems.

I had none of these. I was also tested for RA, Lupus, and told it was SAD and to get 15 minutes of sun with no suncreen a day.

Each and every dentist I went to mentioned they didn't understand why I had such bad geographic tongue.

I had to see my eye doctor over and over again for episcleritis of which he could find no root cause.

I'm also sure my husband (a doctor) thought I was a hypochondriac.

[Storm]

I was told by two doctors that I was depressed and that accounted for the weight loss and lack of appetite. I was even prescribed anti-depressants and offered a course of depression counselling!!! Not happy with the diagnosis, I demanded to see another doctor at the same practice who spent over 40 minutes with me going through my symptoms etc.

She was fantastic and pinned it down to Celiac's. I had never heard of it before either until she mentioned it. Since then, I have adjusted my diet to suit and have found I am less sick and my weight loss has slowly stabilized. I have to go back and see her when I return from holiday next week to give her an update and for her to check on my health, weight and general well being.

Although I have not been tested for this as such, I am very confident that this is the issue for the major weight loss and sickness.

If anyone is unsure of a diagnosis, demand to see another doctor at your practice... it's your health and you have a right to get second or even third opinions.

[GottaSki]

I was tested for everything under the sun. Thyroid, Lymes, Autoimmune Disease, Blood Cell counts, Inflamation markers, H. Pylori, Ulcers, Parasites, Candida, Potassium, Organ Functioning, Blood Sugar, Rheumatoid Arthritis. According to all the tests I was a picture of health! They said I was depressed, Viral, whatever.

I sound similar to Mrs. Smith...most these tests along with pelvic us to rule out ovarian cancer and cortisol levels to rule out other things. Many of these tests I had done every few years for the past 20 or so...always the same...picture of health...only slightly anemic...have some iron...take an anti-depressant or see a shrink...I KNEW I GOT DEPRESSED WHEN I WAS SICK, not the other way around...very frustrating.

I ate gluten for 43 years 10 months...well maybe not too much as a baby...but who knows what was in formula in the 60s?

My primary ordered the IgA tTG in March after 10 months of prodding by me...this past year I got so sick and didn't get better...so I kept going in until they found something. I had never heard of Celiac Disease until that day....wow...what a roller coaster the past two months have been.

Now that I've been diagnosed and learned about celiac SO many things make sense...early bone loss at dental appointments and I've already started shrinking...lost over an inch in 10 years...many problems I had as a child, teen and young adult all match celiac....too bad doctors don't have it higher up on their radar.

This comment by One More Mile is great! "I told my new doctor that I use to be a hypochondriac but now was a celiac. " May have to borrow that one.

[glutenfreejenny]

mine started when I was a kid and I was tested for:

depression

anemia (positive)

excema

some kind of cancer?

food allergies

endometriosis

lactose intolerance

and I know there's more.

[Liveenjoylife]

I diagnosed my self. At 27 I was diagnosed with lactose intolerance. I was sick for 2 weeks. Till I figured I was getting sick from dairy.Then a year later I was sick again for another 2 weeks. Long story short I was getting sick every time I ate wheat. Went to the dr to only discover it was celiac disease. I am hoping that is all the sick surprises and nothing new at 29.

[brandiwest]

I was diagnosed with:

Fischer's Disease (Some kind of bowel disorder at age 1)

Thyroid Disease (although normal)

Dwarfism (although again normal - I was 3'5'' and 48 pounds at age 16)

Endometriosis - with hysterectomy

Gallbladder

H. Pylori

Sjogren's Syndrome

Depression (even though I told then I was fatigued NOT depressed)

and FINALLY Celiac....

Not that I like the diagnosis.... I just hope I start to feel better....

[puddleglum]

My daughter was diagnosed before me -- and she was tested for about everything, I think. The original thought was lactose intolerance, but even though she stayed away from dairy it didn't help much. Later, when my husband was out of work and we moved across the country, we thought it was stress because it really accelerated with throwing up, etc. When we arrived in NJ it was called depression and anxiety. We even dragged the poor kid (teen actually) off to a psychiatrist, which obviously did not help. Her diagnosis finally came about because she came down with chronic hives and the allergist we were referred to did a full blood work up, testing for everying from Lyme to thyroid to schleroderma...including a celiac panel. She actually did not think this would come up positive, but she generally runs them with mystery ailments because her brother has celiac! When the bloodwork came back she said "well, your daughter has a raging case of celiac!" Turned out that my other daughter and myself did as well! I am really grateful to our allergist because we are all starting to feel a lot better after only a couple weeks gluten free!

[caligirl2001]

I don't even know what all the blood tests were for!! I know that my doctor laughed off the idea that I could be reacting to something I was eating. She put me on Prilosec, and I had vials and vials of blood drawn. I had an upper GI to test for reflux as well.Then they started "delicately" suggesting that it was all between my ears.

[Nikki69]

Been constantly checked for...

Virus/stress

Liver and kidney function so many times over the years..

Hypogycemia so checked for diabetes every year

Severe migraine so on daily medication

H.Polori which I'm being treated for

Anemia which was positive so started the grusome camera invasions! ( and diagnosis )

It actually took a different GP to be concerned about the sickness/fainting to send me to a consultant who linked all the above and insisted on the tests ( I thought I was run down ).

[angieInCA]

I was tested for enough stuff that my diagnosis was hypochondriac. They actually had that written in my file.

I told my new doctor that I use to be a hypochondriac but now was a celiac. She laughed, apologized and said I was right.

OMG.....You Are ME!!!!!!!

I know my Dr. was getting so tired of me coming in and saying something just isn't right can we test for______(fill in the blank)__________.

I had tests for everything I could think of and some that the Dr. thought of. I know they tested me for cancer 3 times. Scans galore, 3 MRI's in 4 months, 2 colonoscopies in 6 months.

My Step-Daughter ws diagnosed with Crohn's 2 years ago and that was the first time I had heard of celiac disease. I asked my GI to test me and he brushed me off saying I couldn't had celiac disease because I wasn't skinny.

I had to find a Dr that would take me seriously.

[fripp017]

It's kinda wierd, but mine all started with a visit to my ob/gyn. I spent a month or two in and out of that office and then in and out of my doctors office until the celiac panel was done. I was diagnosed with (and prematurely treated for) :

miscarraige

menstrual cycle cramps

uterine infection

PID

Diverticulitus (sp?)

Irritable Bowel

Depression

yeast infections

h. pylori

thyroid disease

and finally was sent to a GI for testing.

Crazy doctors.

[dnwiebe]

I was diagnosed less than a month ago. I'm a really healthy person (no past medical problems at all), so I was quite shocked when my hands started turning dark blue. It would come and go, and after about a week I decided it was time to go to the doctor. She was confused, thought it might be Raynaud's, and sent me for a plethora of tests. They warned me I might have lupus (positivt ANA test), but assured me I didn't. Tehy called my back the next week to let me know it was probably celiac. Looking back, I had a lot of the other symptoms, but just passed them off for normal.

[Crayons574]

Just out of curiosity, how long did you eat gluten before you were finally diagnosed with Celiac disease (by a doctor or a self diagnosis)? What all were you tested for before finally finding that gluten was the problem?

I am still not 100% sure that I have a gluten intolerance, but I'm fairly sure. I have been to the doctor on and off for the last seven years and tested (with negative results) for:

• Ulcers
  
• Rocky Mountain Spotted Fever
  
• Lyme Disease
  
• Internal bleeding
  
• Mono (tested twice in the course of two weeks)
  
• Strep
  
• Thyroid problems
  

After each visit, the doctors basically just said that it was probably a combination of little things (virus, sinuses, etc.) that were making me so tired all the time. They talked about sending me to a GI doctor a couple of times but never actually did. They commonly thought the abdominal pain was a result of a virus. The last doctor I visited all but said it was mostly my imagination.

IBS

hypothyroidism

anemia

malnourishment

depression

leaky gut syndrome

gerd

anxiety

multiple chemical allergies

food/allergies

chronic fatigue

and probably more i'm sure...like hypocondriac!

[Korwyn]

Just out of curiosity, how long did you eat gluten before you were finally diagnosed with Celiac disease (by a doctor or a self diagnosis)? What all were you tested for before finally finding that gluten was the problem?

I ate gluten all my life. So for 40 years and 2 days. I went gluten-free two days after my 40th birthday. Talk about a great birthday present!!!!

• Ulcer
  
• Thyroid
  
• Liver
  
• Gall Bladder
  
• Mono
  
• Hernia
  
• Celiac/Gluten (blood work was negative twice)
  
• Colo-rectal cancer/Colonoscopy
  
• Nutrient Deficiency
  
• GERD
  
• Heart (Gamma radiation dye injection, Full stress test, 72 hour Heart monitor, etc)
  
• Pancreatic function
  
• Diabetes
  
• Upper and Lower GI Barium X-Ray
  

I was scheduled for a full endoscopy w/ biopsy, lyme disease panel, and neurological exam but the all got cancelled.