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SarahbethBR

Where Do I Start To Get Diagnosed?

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New to this forum, but I don't know anyone in realy life with experience her, and I am at a loss as to where to start.

I have had stomach problems all of my life. I constantly vomited as a kid, and have never known what it was like to be "regular" (I remember my parents making me not flush the toilet when I pooped so they could moniter my BMs). After months of toting me from doctor to doctor, drinking barium (traumatic for an eight year old), and having numerous tests done (none for Celiac, though) they told my parents I just had a weak stomach, and that I needed to learn to deal with it.

5 years ago, when I moved out of my parents' house at 18, I started getting mysterious hives and rashes. They generally would go away for a while and come back, and I thought it was just sensitive skin. Last year, it came back with a vengeance. It got so bad at some points that I couldn't walk or move my hands. I went to one doctor who called it eczema, and then to an allergist who gave me steroids and told me to see a dermatologist. A week later I was in the ER with a swollen throat and mouth, swollen shut eyes, and a pulse in the 160s. My allergist finally listened and tested me for food allergies. I came back with a slight reaction to several foods, but most of all to wheat (still only a 1 on a scale of 1-5). I began to cut wheat out of my diet, my rash went away and even my stomach problems started to get better.

Through continued treatment with my doctor, he told me that it would be okay for me to reintroduce small amounts of wheat into my diet. I generally still stayed away, although I would occasionally use cream of mushroom soup or something that I knew had a little bit of gluten. When I went home to my parents' house, or out of town, I pretty much ignored my allergy. And almost every time, I would get sick to my stomach. I got married a week and a half ago, and ate wheat throughout my entire honeymoon. Since day 4, I have been sick every night. I've eaten 100% WF since Monday, and still felt sick last night, although it is getting better. My rashes are returning slowly, and my fingers and ankles have been very swollen this week.

The feeling is hard to describe, but I feel so much pain in my stomach that it is impossible for me to sleep. The pressure under my ribs makes them ache terribly, and I feel like I can't just sit there or they'll burst. Then I vomit/sit on the toilet until I'm so exhausted that I fall asleep.

I have memories of going on the Low Carb Diet in the early 2000s, and feeling fantastic. I would have a "cheat" on Saturday, and I would always go to my favorite deli and get a sandwich (the only gread I ate all week). I got sick every single week. At 15, I just brushed it off as a "weak stomach." Now, I wonder if I was reacting to the wheat gluten.

I am ready to begin the process of getting tested for Celiac. But I have no idea where to start. My insurance doesn't require a referral to see a specialist, and I don't have a GP that I trust here (just moced to Baton Rouge last year). I love my allergist, but they don't really treat food allergies, and I doubt they can refer me to a GI. Should I start with a GI or a GP?

Will I have to eat wheat for the blood tests? My allergy tests was an IgA test, if I'm not mistaken, and I already have a positive on that. I just have no idea who to call/what to do at this point. I just know I can't live this way anymore, and I want to know.

Thanks in advance for all the advice. This forum looks like a fantastic support group.

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I'm new here too, and I am also in the process of getting diagnosed (hopefully)

My suggestion would be to go to a GP to run some bloodwork and see what that shows. However, these blood tests are not very reliable! So in the meantime, you should also find a GI to do the endoscopy because it can take months to get in.

And yes, you have to be actively eating gluten for a minimun of 4 weeks according to my doctor, with the equivalent of 4-6 slices of bread a day.

There are also some people here who have been diagnosed through Enterolab, you should definitely check out that site. They take stool samples instead: www.enterolab.com

Like I said I'm also learning the ropes, and so far this site has been nothing short of helpful and supportive.

I hope you get a diagnosis soon!

-Kim


~Kim~ Gluten-Free since July 2008

9 inguinal hernia surgeries in 3 years (2004-2007)

Symptoms Pre-Dx: constant abdominal cramps, acid reflux, nausea, vitamin B12 deficiency, chronic constipation, fatigue, hyperhidrosis, migraines

July 7/08 - tTG 1 (+>4) - Diagnosed with IBS, given Rx, sent home to "relax"

Gastro refused biopsy as I had "already been though enough"

Enterolab Results (Aug 2008) - Fecal Antigliadin IgA 11 (Normal Range <10 Units)

HLA-DQB1 Molecular Analysis, Allele 1 0202

HLA-DQB1 Molecular Analysis, Allele 2 0301

Sept/09 - New GP gave Celiac Dx based on response to diet and family history

National Celiac Disease Conference 2010 Volunteer

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You need to be eating gluten for the tests to be accurate. Talk to your doctor about running the full Celiac panel:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

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New to this forum, but I don't know anyone in realy life with experience her, and I am at a loss as to where to start.

I have had stomach problems all of my life. I constantly vomited as a kid, and have never known what it was like to be "regular" (I remember my parents making me not flush the toilet when I pooped so they could moniter my BMs). After months of toting me from doctor to doctor, drinking barium (traumatic for an eight year old), and having numerous tests done (none for Celiac, though) they told my parents I just had a weak stomach, and that I needed to learn to deal with it.

5 years ago, when I moved out of my parents' house at 18, I started getting mysterious hives and rashes. They generally would go away for a while and come back, and I thought it was just sensitive skin. Last year, it came back with a vengeance. It got so bad at some points that I couldn't walk or move my hands. I went to one doctor who called it eczema, and then to an allergist who gave me steroids and told me to see a dermatologist. A week later I was in the ER with a swollen throat and mouth, swollen shut eyes, and a pulse in the 160s. My allergist finally listened and tested me for food allergies. I came back with a slight reaction to several foods, but most of all to wheat (still only a 1 on a scale of 1-5). I began to cut wheat out of my diet, my rash went away and even my stomach problems started to get better.

Through continued treatment with my doctor, he told me that it would be okay for me to reintroduce small amounts of wheat into my diet. I generally still stayed away, although I would occasionally use cream of mushroom soup or something that I knew had a little bit of gluten. When I went home to my parents' house, or out of town, I pretty much ignored my allergy. And almost every time, I would get sick to my stomach. I got married a week and a half ago, and ate wheat throughout my entire honeymoon. Since day 4, I have been sick every night. I've eaten 100% WF since Monday, and still felt sick last night, although it is getting better. My rashes are returning slowly, and my fingers and ankles have been very swollen this week.

The feeling is hard to describe, but I feel so much pain in my stomach that it is impossible for me to sleep. The pressure under my ribs makes them ache terribly, and I feel like I can't just sit there or they'll burst. Then I vomit/sit on the toilet until I'm so exhausted that I fall asleep.

I have memories of going on the Low Carb Diet in the early 2000s, and feeling fantastic. I would have a "cheat" on Saturday, and I would always go to my favorite deli and get a sandwich (the only gread I ate all week). I got sick every single week. At 15, I just brushed it off as a "weak stomach." Now, I wonder if I was reacting to the wheat gluten.

I am ready to begin the process of getting tested for Celiac. But I have no idea where to start. My insurance doesn't require a referral to see a specialist, and I don't have a GP that I trust here (just moced to Baton Rouge last year). I love my allergist, but they don't really treat food allergies, and I doubt they can refer me to a GI. Should I start with a GI or a GP?

Will I have to eat wheat for the blood tests? My allergy tests was an IgA test, if I'm not mistaken, and I already have a positive on that. I just have no idea who to call/what to do at this point. I just know I can't live this way anymore, and I want to know.

Thanks in advance for all the advice. This forum looks like a fantastic support group.

I live about 15 mins from Baton Rouge in Walker,La. I use Dr. Moussa at the Ochsner Clinic. I think he's good.I tested negative on both the blood tests and endoscopy....but still had so many symptoms that fit celiac.The scope showed blunted villi with atrophy....which he said is either celiac, a reflux problem or both.He told me that I was at least gluten/wheat intolorant and should start the diet.It is working for me except for that rare glutening that has happened.I am glad that he didn't dismiss me when the tests came back negative....I would still be searching for an answer to my problems.

I too think you should be on gluten for some time before being tested...but I will leave that to the great group here.They know much more than I do when it comes to that.I'm still new to all of this.This is my second month of being gluten free.

Good luck


Kay

Gluten free since 4/11/08

Positive dietary response

Blood test negative

Endoscopy negative biopsy

but found :" Villous blunting and atrophy" and

"Gastric mucosal abnormality characterized by erythema"

Doctor insisted I need to go gluten free for at least 4 months

Best thing I ever did!

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Just an additional note... Enterolabs does not diagnose Celiac. They say that they can identify sensitivities such as wheat. ;) Some people here have been please with their relationship with Enterlabs.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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