How Were You Diagnosed?

[krisb]

I would like to see how many of you got your diagnoses. Was it by bloodwork and symptoms or did all of you confirm it by biopsy. Or did some of you just do the diet to see if it helped.

My older son was diagnosed by bloodwork, symptoms and ulcerated intestine. My younger boys were diagnosed by symptoms and bloodwork.

My sister and her children have some symptoms but there bloodwork came back normal. She is going to try thr diet anyway.

I'm just curious.

[lovegrov]

I was so sick I was hospitalized. Blood tests and biopsy all highly positive.

richard

[skoki-mom]

I was diagnosed through bloodwork I had done as a screen since my sister was diagnosed last winter. I had no physical symptoms. I did get the scope. Even though I knew the bloodwork was pretty accurate, in the absence of symptoms, I needed to know for sure and also know how bad the damage was.

I have been on the diet for a month now, I feel exactly the same as I did before.

[jajus100]

I would like to see how many of you got your diagnoses. Was it by bloodwork and symptoms or did all of you confirm it by biopsy. Or did some of you just do the diet to see if it helped.

My older son was diagnosed by bloodwork, symptoms and ulcerated intestine. My younger boys were diagnosed by symptoms and bloodwork.

My sister and her children have some symptoms but there bloodwork came back normal. She is going to try thr diet anyway.

I'm just curious.

<{POST_SNAPBACK}>

Don't know yet! I called the doctor's office this morning to get the results of my blood work. I was being tested for several things, not just Celiac. Anyway, the receptionist says not all the blood work is not back, but that ONE test for Celiac turned up positive. She said there is a note from the doctor to not eat any gluton. They will send me something on a diet in the mail!

Okay, I would have no clue what they were talking about if I hadn't looked everything up on the internet. I finally talked to the nurse to find out which test came back positive and if any came back negative. She had no idea. I wanted to determine the reliability of the particular test with the stats I've seen on this site. She said, "Just don't eat gluton for now," and that I would have a consult with a gastro doctor later. I said, "But I have read on the internet that if I stop eating gluten, it could interfere with further tests." She said, "Well, if you read that somewhere." Ugh.... So, now I am waiting.

Unlike many of you, unless everything says positive, I will remain in denial.

I'm 43, and I even own a wheat farm, though it is in another state! I come from a family of wheat farmers. How could our family have this???? I also have 4 kids, and really hope they don't have this thing.... Not to mention the fact that through my Coop I just bought 25 POUNDS of whole wheat organic flour... I make a lot of breads, etc... Guess not for much longer...

[bluelotus]

Hi,

I was diagnosed through bloodwork. Scored a 40, though the range is 0-19, so, somehow they determined that I had a 99% chance of having celiac disease. I got the test b/c 1) my mother had been diagnosed 3 years earlier with a positive biopsy and 2) my symptoms were beginning to get bad - I noticed them about 2 yrs prior to testing, I think they flared up b/c I had quit smoking (some say that smoking will mask symptoms). Symptoms started as excessive gas, the moved on to the big d about a year later, which happened in the morning mostly (from cereal??). When I look back to my childhood, I recall many associated disorders and symptoms that no one ever put together, though the typical bathroom problems didn't start until later in life. Now, other symptoms for me include: depression, hair loss, brain fog, d, gas, acne flare-ups, joint aches, psoriasis, migranes, hypothyroidism, etc. All seem to be improving after being gluten-free for several months and after a couple of gluten accidents, that is, except my thyroid which I will have to medicate for life.

Hope this info helps!

[lorka150]

I tried the diet after tonnes of self-exploration and a bunch of doctor's recommendations. The diet, although I am not healed, has made me feel so much better I am 100% certain I have a problem with gluten, despite if it is celiac or not.

[Carriefaith]

I was dignosed by a positive tTg blood test and a positive biopsy.

[Janelson]

I had a blood test, colonoscopy, and endoscopy. They all showed celiac although nothing about how bad the damage was or anything.

[hez]

I was dx with bloodwork and endoscopy. Had been very sick for about 5 months. The endoscopy showed extensive damage (according to dr). I am slowly recovering and feeling better.

[ILOVEOMC]

My son who was 11 at the time, had stomach aches with burning and burping and mild D off and on, and pain in his legs and ankles. They scoped him first, not really suspecting Celiac I think, and took biopsies which showed blunting of villi and some inflammation. Then they did the blood work and he had a slightly elvated antigliadin IGA number which helped them confirm the diagnosis. He also had the DQ2 gene.

[Eliza13]

I was dx on the basis of symptoms alone. I have read mixed reviews on this, but most advise that people be tested (blood, biopsy). Not too sure why my doc decided that I would not need above, but it is a moot point since I have responded really well to the diet (I yo-yo on the diet and notice a huge difference when I am on vs. off). I did have ALOT of symptoms (see below) which is perhaps why my doc decided to forgo the testing. I even had a rash on my elbows which is hallmark DH.

The one thing that does bother me is not knowing how severe my damage was. I have had high prolactin, which is associated with greater villi destruction, so I would be curious to know how bad it was. At any rate, I am satisfied even w/o the testing that gluten was my problem all along.

Skar.

[nettiebeads]

Or did some of you just do the diet to see if it helped.

<{POST_SNAPBACK}>

I am in the very very small minority in that I had been sick 6 WEEKS (!) before going to my dr. re: my D. He took me off of gluten immediately, and I improved w/in a week. He told me it was indeed celiac, not wheat sensitivity or anything. I mentioned this to my current gp as my former has since retired. He wasn't surprised because he knew my former dr was an excellent diagnostician (small community).

[judy05]

I would like to see how many of you got your diagnoses. Was it by bloodwork and symptoms or did all of you confirm it by biopsy. Or did some of you just do the diet to see if it helped.

My older son was diagnosed by bloodwork, symptoms and ulcerated intestine. My younger boys were diagnosed by symptoms and bloodwork.

My sister and her children have some symptoms but there bloodwork came back normal. She is going to try thr diet anyway.

I'm just curious.

<{POST_SNAPBACK}>

I was sick for years with allergies and migraines. In the year 2000 they found a non-malignant nodule on my thyroid. It was an autoimmune thing, my thyroid was destroying itself. I had a bad time after surgery (almost died) and after that I started to get really sick. I had digestive issues, allergies got worse, had a lot of problems with my eyes, vertigo, brain fog, etc. You name it, I had it. After a long process of tests I was finally referred to a GI doc who initially diagnosed me with Celiac Sprue because of a high IgA (75) and a positive reaction to the gluten-free diet. Then after about a year he pronounced me cured(?) because my gene test came back negative! That's when he and I had a parting because I tried to eat wheat and dairy again and I started getting symptoms, which he said were all in my head! Needless to say I am still gluten-free and intend to stay that way. In the meantime I was diagnosed with Barrett's Ring around the esophagus after my Endoscopy. This is caused by acid reflux which is one of the first symptom of Celiac!

I am really angry because he won't test me or give me a diagnosis of Gluten Intolerance so that I could write off the cost of food! I have or had so many of the symtoms of Celiac that I can't believe I don't have it.

[Canadian Karen]

Positive bloodwork (over 100)

Positive biopsy (no villi left)

Colonoscopy showed extensive collagenous colitis.

Karen

[KaitiUSA]

I had positive blood tests and doctor did not even want to do a biopsy because he was sure it was celiac. I also have the HLA-DQ2 gene which is one of the main celiac predisposition genes.

[Guest nini]

I was dx based on symptoms and highly positive bloodwork. My Dr. said that the biopsy would not be necessary to confirm because I had so many symptoms and my blood tests were so highly positive. He said that the biopsy was no longer the gold standard of diagnosis and the fact that I responded amazingly well to the gluten-free diet was confirmation of the dx.

[bluelotus]

Nini, I am glad to hear it. My situation was similar (see earlier post) and I thought I was the only one that hadn't gotten the biopsy.

[PicturePerfect]

I was diagnosed by bloodwork, and then an endoscopy. My cousin had it, so that convinced my doctor to get the tests done.

[zakismom]

I finally had gone to my regular doctor after having diarhea for about six months. Up several times a night. I was losing weight dramatically. She did some bloodwork (not for celiac) and my results were incredibly screwd up. I had very low calcium levels, anemia, skewed liver enzymes and very low protein levels. She sent me to a GI who started with a colonoscopy, then an entire GI series, CAT scans and finally when my feet looked liked Fred Flintstone's and my hands were palsied into a grotesque shape (from malnutrition) he finally did an endoscopy. After which I had to wait six weeks for another appointment for him to tell me I had sprue. Then to add to my discomfort - his staff took 20 minutes trying to find a copy of the "Glutton" diet. None of the doctors suspected anything like celiac- they were looking for cancer.

[aikiducky]

I screwed up my chances of diagnosis by going gluten free before testing. I'd had D for a month, started suspecting it could be celiac so I went gluten free for a couple weeks. Felt infinitely better so I persuaded my rather sceptical doctor to do the blood test. My plan was to go back on gluten for a few weeks again, but after one bowl of muesli the pain was so bad I went to have blood drawn the same evening.

Weeks later got a call from a happy sounding nurse that the test was negative... I haven't even bothered to find out which tests they did and what the results actually were. They might have been borderline for all I know. It doesn't matter, if I ever start having doubts, I can always have a sandwich and prove it to myself again. Hasn't happened so far, lol.

Pauliina

[jenvan]

blood test and biopsy

[ryebaby0]

My son was dx via hugely positive bloodwork and positive endoscopy following months of illness, but did not respond to the gluten-free diet fast enough and was eventually hospitalized. He has been on immunsuppressants for almost 2 years now, and may have a rare condition I won't bore you with, or he may just be a hard-to-resolve case, or have refractory sprue. Feels great, though. Definitely reacts to gluten.

My husband was dx after we all had blood tests. Borderline tTg (is there such a thing?) according to his doctor (it was 24, 25 was positive). No scope, but very positive reaction to a gluten-free diet.

[2Boys4Me]

My son (almost 6) had no outward symptoms, but he was a bit underweight and had low iron levels. His bloodwork came back positive (not sure what tests) and then he had an endoscopy. The doctor said that the damage to the villi was "not subtle".

Awaiting blood test results for my other son and me, and my husband should have had his blood test by now, so we'll find out at the end of this week or beginning of next week if anyone else in the family has it. None of us have symptoms.

[skoki-mom]

I was dignosed by a positive tTg blood test and a positive biopsy.

<{POST_SNAPBACK}>

Just wanted to say your new pic is very cute!!

[Wandering Hermit]

My diagnosis was inconclusive:

gliadin IgA = 21 (0-19 normal) - this was called a 'weak positive'

gliadin IgG = 82 (0-19 normal) - moderate/high

transglutamase = 4 (0-19)- normal

No biopsy. Should have done it then. I was just so excited to have a diagnosis I just went with it.

Before going gluten-free I had d about 1/10 days. After gluten-free I have not had it. But both before and after gluten-free I have loose stools, aches, and lethargy that has not been impacted by the diet at all.

HOWEVER, I also quit drinking milk when I went gluten-free. On the few occasions when I have had lactose since going gluten-free, I get sick.

So I don't have a friggin' clue if I have celiac disease or not now. Am seeing a GI, going to do an endoscopy in 2 weeks - although since I have been gluten-free for 6 months, a normal biposy won't mean anything yeah or nay. If that is indeed the case I see a gluten challenge in my future.