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How Were You Diagnosed?


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39 replies to this topic

#1 krisb

 
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Posted 26 September 2005 - 05:17 AM

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.
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Kris -gluten intolerant, DH diagnosed without a biopsy
Mom to:
Kevin-11 food allergies, celiac
Owen-8 gluten intolerant
Alex- 5 gluten intolerant
Luke- 3/1/07 not planning on introducing gluten, still breastfeeding

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#2 lovegrov

 
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Posted 26 September 2005 - 05:20 AM

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

richard
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#3 skoki_mom

 
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Posted 26 September 2005 - 05:34 AM

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.
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LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since

#4 jajus100

 
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Posted 26 September 2005 - 08:05 AM

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. :rolleyes:

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...
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#5 bluelotus

 
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Posted 26 September 2005 - 08:16 AM

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!
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#6 lorka150

 
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Posted 26 September 2005 - 08:22 AM

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.
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Gluten-free, Vegan

#7 Carriefaith

 
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Posted 26 September 2005 - 08:27 AM

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

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#8 Janelson

 
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Posted 26 September 2005 - 09:34 AM

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

 
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Posted 26 September 2005 - 09:42 AM

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.
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#10 ILOVEOMC

 
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Posted 26 September 2005 - 09:53 AM

:D 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.
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#11 Eliza13

 
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Posted 26 September 2005 - 10:46 AM

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.
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Diagnosed by my doctor on the basis of symptoms only (May 2005). My symptoms include:

-amenorhea (all my life)
-high prolactin levels
-major bloating ("Are you pregnant?")
-swollen ankles
-possible DH: had the rash on my elbows and scalp (gone now)
-joint pain
-childhood arthritis
-all dairy allergy
-dry skin
-fat in stool sample (no connection was made at the time...I was being tested for something else...When the doctor told me of the fat I replied by saying: "I eat alot of olive oil". DUH!!!!)
-mother is allergic to wheat
-ravenous appetite: I eat for 5 people
-light coloured stool
-pass stool 7 times a day sometimes
-hemorrhoids
-get the hiccups alot (not sure if this is related)
-some reflux

I'm sure there are more that I don't recall at the moment. SIGH.

#12 nettiebeads

 
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Posted 26 September 2005 - 11:53 AM

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).
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gluten-free since Oct 1996

#13 judy05

 
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Posted 26 September 2005 - 12:33 PM

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.
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#14 Canadian Karen

 
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Posted 26 September 2005 - 05:53 PM

Positive bloodwork (over 100)
Positive biopsy (no villi left)
Colonoscopy showed extensive collagenous colitis.

Karen
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Karen

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......

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#15 KaitiUSA

 
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Posted 26 September 2005 - 06:01 PM

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.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

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