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Old 10-25-2009, 07:31 PM #21
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Originally Posted by neurocitizen View Post
I've had a myriad of tests after experiencing a small fiber-like neuropathy for the last year. The only thing that came out abnormal was a positive gliadin reading of 38. My neuro thought I might have Celiac so I went to a GI specialist. I had an endoscopy and the results were negative for celiac. So they did a prometheus blood test to check me for a celiac gene called DQ alpha and beta 1. The results say "yes" for celiac gene pairs present. I've been gluten free for about 4 months now and the neuropathy is lessening, although not completely gone.

My question is could I just have gluten sensitivity and not have Celiac? Are they different? I have no other symptoms. Thanks.
My apologies neurocitizen for the hijack of your thread! I should have begun a new topic!! And I thank you for the start of the thread for it was a question of mine also - for my daughter's recent diagnose.

Healthy wishes to you.
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Old 10-28-2009, 07:01 AM #22
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Make sure you take D3, in a gel cap type form, not dry powder.
The only gel type D3 I can find contains soy, and I can't have soy. What then?
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Old 10-28-2009, 12:37 PM #23
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The only gel type D3 I can find contains soy, and I can't have soy. What then?
i couldnt remember what else you didnt want, but this one doesnt have soy
Other Ingredients
Pure Olive Oil (fruit), Gelatin, Glycerin, Purified water.

Free of sugar, Salt, Starch, Yeast, wheat, Gluten, Corn, Soy, Barley, Fish, Shellfish, Nuts, Tree Nuts, Egg and Dairy Products. No Preservatives, Artificial Colors or Artificial Flavors.
Healthy Origins, Vitamin D3, 5,000 IU, 360 Softgels
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Old 10-28-2009, 04:06 PM #24
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I believe country life has a no soy as well. Other Ingredients

Medium chain triglycerides, [gelatin, glycerin, purified water (capsule shell)].
Suggested Use

Adults take one (1) softgel daily with food.
Does Not Contain

Does not contain yeast, wheat, soy, gluten, milk, salt, sugar, starch, preservatives or artificial color.
Supplement Facts
Serving Size is 1 softgel
Amount Per Serving %DV
Vitamin D3 (cholecalciferol from lanolin) 5000IU 1250%
*Daily Value (DV) not established.
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Old 10-29-2009, 06:51 AM #25
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Thanks Pabb and Happyisme09, I will check out Country Life, although in super sensitive forum I belong too, they said Country Life does contain more than 5ppm of gluten and that scares me. "Gluten Free" labeling simply means it has less than 20ppm of gluten, which is way too much for me.

Pabb, you didn't mention which vitamin your post was about.
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Old 10-29-2009, 07:11 PM #26
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Originally Posted by darlindeb25 View Post
Thanks Pabb and Happyisme09, I will check out Country Life, although in super sensitive forum I belong too, they said Country Life does contain more than 5ppm of gluten and that scares me. "Gluten Free" labeling simply means it has less than 20ppm of gluten, which is way too much for me.

Pabb, you didn't mention which vitamin your post was about.
pasted in at the bottom...Healthy Origins, Vitamin D3, 5,000 IU, 360 Softgels
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Old 11-28-2009, 06:46 PM #27
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Originally Posted by neurocitizen View Post
I've had a myriad of tests after experiencing a small fiber-like neuropathy for the last year. The only thing that came out abnormal was a positive gliadin reading of 38. My neuro thought I might have Celiac so I went to a GI specialist. I had an endoscopy and the results were negative for celiac. So they did a prometheus blood test to check me for a celiac gene called DQ alpha and beta 1. The results say "yes" for celiac gene pairs present. I've been gluten free for about 4 months now and the neuropathy is lessening, although not completely gone.

My question is could I just have gluten sensitivity and not have Celiac? Are they different? I have no other symptoms. Thanks.
I am new here -- this is my first post!

I haven't taken time to read through all the posts on this thread yet -- I wanted to respond first, in case I was called away to something else.

Yes, yes, and yes. My biopsy, DQ2 and DQ8 all came back neg. My blood work showed very high gliadin -- it was in the 80's.

I am a patient at the University of Chicago Celiac Center with a Diagnosis of Non-Celiac Highly Gluten Intolerant.

Pre-diagnosis, I mimed the symptoms of Celiac: Weight gain (during my gluten challenge), swelling, diarrhea, mouth sores, back pain, body aches, horrible fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day), Hypogammaglobulinemia as a child/teen (although this was probably a mis-diagnosis). This is a partial list.

Anyway, I am one of those folks who is highly gluten-sensitive without having Celiac.

Right now, I am wondering if I should have a DQ1 test . . . still learning . . . I was diagnosed in September 2009.
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Old 11-28-2009, 07:00 PM #28
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I am new here -- this is my first post!

I haven't taken time to read through all the posts on this thread yet -- I wanted to respond first, in case I was called away to something else.

Yes, yes, and yes. My biopsy, DQ2 and DQ8 all came back neg. My blood work showed very high gliadin -- it was in the 80's.

I am a patient at the University of Chicago Celiac Center with a Diagnosis of Non-Celiac Highly Gluten Intolerant.

Pre-diagnosis, I mimed the symptoms of Celiac: Weight gain (during my gluten challenge), swelling, diarrhea, mouth sores, back pain, body aches, horrible fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day), Hypogammaglobulinemia as a child/teen (although this was probably a mis-diagnosis). This is a partial list.

Anyway, I am one of those folks who is highly gluten-sensitive without having Celiac.

Right now, I am wondering if I should have a DQ1 test . . . still learning . . . I was diagnosed in September 2009.
PS: Just want to add that I am feeling better now than I have in many, MANY years. I can't really remember feeling better.
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Old 11-29-2009, 12:33 PM #29
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I am a patient at the University of Chicago Celiac Center with a Diagnosis of Non-Celiac Highly Gluten Intolerant.
I am pleased to hear that the University of Chicago Celiac Center is now entertaining a dx of Non-Celiac highly gluten intolerant. 8 years ago when my family was going through the testing...non-celiac gluten sensitivity was simply discounted... especially at the University of Chicago Celiac Center. I've heard that Dr. Guandalini has been doing some research in the area of gluten sensitivity. We were never a patient of his, but I did have a phone conversation with his staff, and have heard him speak in the past at a Celiac convention in Chicago.

We put my youngest on a gluten free diet with only a positive antigliadin IgG and have never looked back. My older daughter was 16 at the time, and opted to listen to the specialists who told her a gluten free diet was not necessary because she had a normal biopsy (although it showed lymphocytic gastritis, also disregarded, which is indeed associated with gluten sensitivity). She still believes it is not an issue for her...despite a lifetime of symptoms that scream gluten sensitivity.
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Old 12-10-2009, 07:59 AM #30
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Quote:
Originally Posted by neurocitizen View Post
I've had a myriad of tests after experiencing a small fiber-like neuropathy for the last year. The only thing that came out abnormal was a positive gliadin reading of 38. My neuro thought I might have Celiac so I went to a GI specialist. I had an endoscopy and the results were negative for celiac. So they did a prometheus blood test to check me for a celiac gene called DQ alpha and beta 1. The results say "yes" for celiac gene pairs present. I've been gluten free for about 4 months now and the neuropathy is lessening, although not completely gone.

My question is could I just have gluten sensitivity and not have Celiac? Are they different? I have no other symptoms. Thanks.
You can have non-celiac gluten sensitivity. *edit* In essence, it is possible to have gluten sensitivity in the absence of celiac disease. *edit*

Last edited by Chemar; 12-10-2009 at 09:29 AM. Reason: NeuroTalk Guidleines
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