Can't Get A Real Diagnosis

[Laury]

After having stomach problems for at least 12 years, I have finally figured out I have problems with Gluten. I went on a diet to lose weight in July of 2011 and I felt great. I thought it was because I wasn't eating popcorn anymore. As the diet went on I started adding back in carbs and found my stomach pain was back as soon as I ate anything with gluten in it. I took gluten out of my diet again and felt great. In January I had blood tests done that were negative due to my gluten free diet.

I had the following blood tests in January 2012

Tissue Transglutaminase antibody IGA 3

Immunoglobulin A Gliadin antibody IGA 42L

Vitamin D 11

In March I ate Gluten for 2 weeks and then had a endoscope biopsy done that showed inflamation but no villi damage. I tested positive for HLA Dq2. The doctor decided that I would have to eat gluten for 1-2 months and redo the endoscope to get a real diagnosis. He feels confident in assuming I have Celiac due to the various tests and the fact that I feel better on a gluten free diet.

Symptoms:

Fatigue

gas pains

abdomen distension

My question is: I'm wondering if it is worth going thru the month or two of pain so I can have a real diagnosis. I would like to know if it is really Celiac or if I am gluten intolerant. Has anyone else been thru this?

[icm]

You didn't specify the normal range of the blood test values.

We were encouraged to go through this 11 years back but both Mum and I refused to follow our gastroenterologist's advice. Turns out we both possess the celiac gene (my mum a double copy) and also showed a positive response to the gluten free diet. My aunt developed type 1 diabetes at 9 years of age in the 70's and also had gluten induced autoimmunity (when tested via Enterolab 8 years ago). She had NO symptoms.

I would say it's time to stick to the gluten free diet seeing as though you know eating gluten makes you sick. You also have a celiac gene, along with inflammation in your intestines.

There are dangers associated with reintroducing gluten after going gluten free. Dr. Vikki Petersen highlights some of these below.

Open Original Shared Link

[MitziG]

With inflammation showing up after a short return to gluten, that seems to point to celiac, as does the low IGA and vit D. Low IGA is a red flag. Personally, I wouldn't make myself sick just to get the dx. Your dr sounds fairly reasonable, and I would just call yourself a celiac and go with it. I would however get any immediate family tested before THEY try the diet.

[Oscar]

  On 7/3/2012 at 3:47 AM, icm said:

Dr. Vikki Petersen highlights some of these...

Dr. Vikki Petersen is not what I would call a credible source. She certainly has an agenda she is pursuing. When I have problems with my digestion, I *ALWAYS* consult with a chiropractor--Not!

[tom]

  On 7/8/2012 at 1:17 AM, Oscar said:

Dr. Vikki Petersen is not what I would call a credible source. She certainly has an agenda she is pursuing. ...

...

Well Oscar, I'm not sure what "agenda" you could be referring to, beyond helping ppl whose problems aren't solved by their PCP's & GI's mainstream medical thought processes.

Don't we see ppl on the forums every day who've been failed by their MDs?

"IBS, here's a rest-of-your-life daily pill"

"You're fine, but should maybe see a therapist"

"Can't be celiac, you're not wasting away w/ constant D"

The only agenda I get from them is in trying to fill a gap in conventional medicine, and helping the ppl whose MDs can't or won't help them get healthy.

I should probably mention that I was a patient at their (Drs Rick & Vikki Peterson) Sunnyvale, CA facility and am more than a little familiar w/ what they do & who they really are.

If I'd been lucky enough to go to them early on in my tale of unhealthy woe, I may have been able to completely avoid the worst 7 yrs of my life. Would probably even still own my home. (pffft! I still say "my")

On the notion of credibility, the celiac.com resident expert/author Ron Hoggan appears to disagree w/ your assessment.

  Quote

The information contained in The Gluten Effect is very valuable and the interpretation of the research is unusually insightful. The authors have also melded a large array of apparently disparate information into a cohesive body of helpful information. The detailed examination of gluten

[Gemini]

  On 7/3/2012 at 3:18 AM, Laury said:

After having stomach problems for at least 12 years, I have finally figured out I have problems with Gluten. I went on a diet to lose weight in July of 2011 and I felt great. I thought it was because I wasn't eating popcorn anymore. As the diet went on I started adding back in carbs and found my stomach pain was back as soon as I ate anything with gluten in it. I took gluten out of my diet again and felt great. In January I had blood tests done that were negative due to my gluten free diet.

I had the following blood tests in January 2012

Tissue Transglutaminase antibody IGA 3

Immunoglobulin A Gliadin antibody IGA 42L

Vitamin D 11

In March I ate Gluten for 2 weeks and then had a endoscope biopsy done that showed inflamation but no villi damage. I tested positive for HLA Dq2. The doctor decided that I would have to eat gluten for 1-2 months and redo the endoscope to get a real diagnosis. He feels confident in assuming I have Celiac due to the various tests and the fact that I feel better on a gluten free diet.

Symptoms:

Fatigue

gas pains

abdomen distension

My question is: I'm wondering if it is worth going thru the month or two of pain so I can have a real diagnosis. I would like to know if it is really Celiac or if I am gluten intolerant. Has anyone else been thru this?

What is this business with a "real" diagnosis? Why do people think that if you don't have a biopsy slide to show damage, you don't have a diagnosis? You have done a dietary trial with good results and, most important of all, you have the main Celiac gene, which can predispose you to Celiac. You may have it or it may be non-Celiac gluten intolerance but what difference does it make? You have proven you cannot eat gluten by the trial you did. I think having a positive gene test should be enough, along with your symptoms. Your doctor may never find damage, if it's patchy.

It could very well be that you have latent Celiac or you haven't triggered long enough for it to cause all the damage but please do not wait for that to happen or you could end up really sick, like I did. I nearly died and I never want to go there again. I did have positive blood work, positive gene testing and the fact I was down to 97 pounds was all I needed to know I should dump gluten from my diet. I have never been better and you will too!

[Skylark]

What, exactly, is a "real diagnosis"? And more importantly, why do you care? Make sure you haven't unconsciously bought into a system where every ailment needs a label to make it real before you go make yourself sick for nothing. Our healthcare system has inadvertently brainwashed patients into thinking they need a "real diagnosis", even when they know what's wrong and can cure themselves. Your "real diagnosis" is that you can't eat gluten becasue it makes you sick.

I think we do a lot of damage on this board by making a strong distinction between celiac and NCGI. It's great if you can get tested before you go gluten-free, but I think there is too much emphasis on challenge for people who figure out gluten issues themselves. If gluten makes you so sick that you don't want to challenge, and you have recovered your health to the point where you don't need a doctor gluten-free, that tells you a lot more than test results ever will!

[beachbirdie]

  On 7/3/2012 at 3:18 AM, Laury said:

After having stomach problems for at least 12 years, I have finally figured out I have problems with Gluten. I went on a diet to lose weight in July of 2011 and I felt great. I thought it was because I wasn't eating popcorn anymore. As the diet went on I started adding back in carbs and found my stomach pain was back as soon as I ate anything with gluten in it. I took gluten out of my diet again and felt great. In January I had blood tests done that were negative due to my gluten free diet.

I had the following blood tests in January 2012

Tissue Transglutaminase antibody IGA 3

Immunoglobulin A Gliadin antibody IGA 42L

Vitamin D 11

In March I ate Gluten for 2 weeks and then had a endoscope biopsy done that showed inflamation but no villi damage. I tested positive for HLA Dq2. The doctor decided that I would have to eat gluten for 1-2 months and redo the endoscope to get a real diagnosis. He feels confident in assuming I have Celiac due to the various tests and the fact that I feel better on a gluten free diet.

Symptoms:

Fatigue

gas pains

abdomen distension

My question is: I'm wondering if it is worth going thru the month or two of pain so I can have a real diagnosis. I would like to know if it is really Celiac or if I am gluten intolerant. Has anyone else been thru this?

I would echo the sentiments of those who have questioned the need for "official" diagnosis. You have antibodies, you have a doctor who says he is reasonably confident it IS celiac, you feel better gluten free.

Unless you live somewhere that subsidizes gluten free food, you will probably do just as well with or without that diagnosis.