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voix
Joined: 10 Apr 2008
Posts: 148
Location: Colorado
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 Posted: Fri Apr 11, 2008 7:29 pm Post subject: Confused about what Gluten Sensitivity means |
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I got results from Enterolab that said that I was Gluten Sensitive. Here were the results: Gluten Sensitivity Stool Test
Fecal Antigliadin IgA 266 (Normal Range <10 Units)
Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.
It is my understanding that Celiac Disease is a genetic condition, but the research I've seen seems to say that celiacs is only present when there is intestinal damage. To me it would seem that if it is genetic, one would have celiac if you have the gene expression whether there was intestinal damage or not, as damage would mean that gluten was present for a long time. Please help me understand this.
Also, I am producing the gluten antibodies how is that not celiac disease?
Are these antibodies also the exact ones produced when other foods are at issue?
Why did bloating/swelling only become a problem since January when I had a dental crisis and used a lot of antibiotics? (I've had stress and medial trauma and pain for the past several years (unrelated to gluten), not just since January.)
Is all gluten sensitivity genetic or can it be cause by medical issues, antibiotics, pregnancy or other, which would mean that it might not be permanent?
Should I follow up the Enterolab test with another type of test--which one(s)?
I read a post were someone mentioned that they never heard of anyone getting a neg. result from Enterolab (except for that particular poster). Is there extra significance to that statement beyond a positive-selective pool being tested there?
Sorry for the million questions, but all the research I have done seems to gloss over these confusing points.
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aklap
Joined: 02 Oct 2004
Posts: 8616
Location: WI, USA
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| Posted: Fri Apr 11, 2008 8:08 pm Post subject: Re: Confused about what Gluten Sensitivity means |
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| voix wrote: | I got results from Enterolab that said that I was Gluten Sensitive. Here were the results: Gluten Sensitivity Stool Test
Fecal Antigliadin IgA 266 (Normal Range <10 Units)
Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well. |
| voix wrote: | | It is my understanding that Celiac Disease is a genetic condition, but the research I've seen seems to say that celiacs is only present when there is intestinal damage. To me it would seem that if it is genetic, one would have celiac if you have the gene expression whether there was intestinal damage or not, as damage would mean that gluten was present for a long time. Please help me understand this. |
Hi Voix,
Welcome to the board. I guess there's no gray area with your test. 
Celiac is not just for intestines anymore. CD can present with no outward symptoms or any number/combination of 200+ symptoms. A high percentage of dx'ed celiacs do NOT present with gastro problems. Often times it's found when looking for something else.
Yes gluten can and does damage other systems of your body - unfortunately not all doctors realize this. They look for Classic CD [gastro issues] and exclude the dx when the patients sx's don't match with Classic CD. Most times patients are Atypical [non-gastro issues].
Edit to add: Current views of mainstream medicine are rather narrow - IMHO. As you've found, they view Celiac Disease as villi damage. Anything less is not CD. Some experts in the field rather view CD as a small part of the Gluten Sensitivity Spectrum - the tip of the iceberg so to speak. There's so much more to GS that lies beneath the surface and thus missed when it comes to diagnostics. Slowly this concept is coming into the light. However, sometimes changes in medical standards take time - like turning an ocean liner. Some day, the Titanic is going to hit that GS iceberg...
Please - spend some time looking thru these links. I think you'll see things in a different light.
Our Thead on the 5 types of Celiac Disease - This explains the different types of CD and their manifestations.
Our Thread on Info aimed at Medical Professionals
Our Thread on Dr. Scot Lewey Articles - Very interesting info from a Gastro Doc that is gluten & dairy sensitive. He has Non Celiac Gluten Sensitivity. His wife has CD. Definitely worth reading!
Our Thread on Celiac Blood Tests & More Diagnostic Info
Early Diagnosis Of Gluten Sensitivity: Before the Villi are Gone
Dr. Rodney Ford in NZ - Another Doc that understands Non Celiac Gluten Sensitivity.
| voix wrote: |
Also, I am producing the gluten antibodies how is that not celiac disease? |
Well - it could be. Have you ever had a standard celiac panel [blood work] done? Gold standard diagnosis [dx] of Celiac Disease is defined by villi damage. To take it one step further - reversal of said damage once gluten has been removed.
Current celiac blood work looks for the result of tissue damage. That's the tTG and the EMA tests. Old testing: AntiGliadin Antibodies IgA and IgG will tell you if you are reacting to gluten. Since these tests are not as specific for CD, they have fallen out of favor. Sadly, often times the AGA tests are not included - and thus not giving you an entire picture.
There are a handfull of docs that do feel you can react to gluten with having celiac disease aka Non Celiac Gluten Sensitivity. Slowly this concept is catching on. All too often people like me fall thru the diagnostic cracks. We fail blood work testing, we fail biopsy, but yet we go on feeling like crap. Luckily, I was researching on my own and found that gluten can and does cause problems - and fly under the diagnostic testing radar. Removing gluten was the key to getting my health back.
| voix wrote: | | Are these antibodies also the exact ones produced when other foods are at issue? |
The antibodies for gluten are specifically for Gliadin.
| voix wrote: | | Why did bloating/swelling only become a problem since January when I had a dental crisis and used a lot of antibiotics? (I've had stress and medial trauma and pain for the past several years (unrelated to gluten), not just since January.) |
CD generally requires a couple of things...1) gluten 2) a trigger to set your body off - illness, infection, surgery, pregnancy, stress.
It's also thought that heavy use of NSAID's and anti-inflamms can cause Leaky Gut which can lead to auto-immune issues.
AntiB's can cause gastro distress [unrelated to CD or NCGS]. It kills all the good critters with allows the bad critters take over.
| voix wrote: | | Is all gluten sensitivity genetic or can it be cause by medical issues, antibiotics, pregnancy or other, which would mean that it might not be permanent? |
Some say you can only have CD if you have the genes for it. Currently there's only 2 genes that tested for in CD: DQ2 and DQ8. Dr. Fine feels there's a gluten sensitivity gene: DQ1. Just recently researchers feel they have found other gene(s) connected to CD. So...to say you can 100% rule out CD for ever based on genetic testing...seems rather short sighted - IMHO. There's so much that is unknown.
Permanency: CD is for life, you can't out grow. NCGS - right now I think it's felt the it's for life too. There's so much more research that NCGS needs - it's hard to say for sure. Personally, I feel I'm NCGS - I will stay GF for life.
| voix wrote: | | Should I follow up the Enterolab test with another type of test--which one(s)? |
You might consider getting a full celiac panel done. Enterolab testing has come under intense scrutiny because Dr. Fine has not published any of his findings for peer review. His thoughts and concepts are way outside the realm of current thought in mainstream medical. However, there are some that do feel his testing and concepts have merit. But, until he publishes, his tests will not carry much weight with some. Some feel that everyone tests positive with EnteroLabs and it's a scam [TEC, I'm not picking on you].
| voix wrote: | | I read a post were someone mentioned that they never heard of anyone getting a neg. result from Enterolab (except for that particular poster). Is there extra significance to that statement beyond a positive-selective pool being tested there? |
See above response.
| voix wrote: | | Sorry for the million questions, but all the research I have done seems to gloss over these confusing points. |
Ya gotta ask some questions if ya wanna learn Figuring all this out is enough to make your head spin!
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa
Last edited by aklap on Mon Jun 30, 2008 10:33 pm; edited 3 times in total |
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aklap
Joined: 02 Oct 2004
Posts: 8616
Location: WI, USA
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| Posted: Sat Apr 12, 2008 3:20 am Post subject: |
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added this link to my original post: Dr. Rodney Ford in NZ - Another Doc that understands Non Celiac Gluten Sensitivity.
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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voix
Joined: 10 Apr 2008
Posts: 148
Location: Colorado
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| Posted: Sat Apr 12, 2008 5:39 pm Post subject: |
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Thanks for all that information! So nice to take the effort. It clears a lot of things up.
I guess if >/=10 is normal and I am 266, then there's no ambiguity--one of the few test result that are clear. Is the high number indicative of severity? I saw something that said that it didn't matter if it was 11 or 350.
[Current celiac blood work looks for the result of tissue damage. That's the tTG and the EMA tests. Old testing: AntiGliadin Antibodies IgA and IgG will tell you if you are reacting to gluten. Since these tests are not as specific for CD, they have fallen out of favor. Sadly, often times the AGA tests are not included - and thus not giving you an entire picture.]
I still don't understand the need to get a biopsy if you can do the tTG test to see if there is tissue damage.
I take from articles that CD is only considered present if there is tissue damage, otherwise it is called gluten sensitivity--regardless of the genetic evidence. Is this correct?
I'd rather avoid drinking any sort of solution or anesthesia, but blood test is fine.[/quote] |
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voix
Joined: 10 Apr 2008
Posts: 148
Location: Colorado
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| Posted: Sat Apr 12, 2008 5:54 pm Post subject: |
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I have another question. I noticed a bit of discussion about skinny being a key symptom--so much so that many doctors refuse to acknowledge a diagnosis without it.
About 10-15 years ago, I had a few years where I could not eat enough food. I ate literally all the time, 6 full meals a day plus constant snacks. It was necessary not to loose any weight. I was 5'8" and 110 pounds without a pound to spare. At the time, I just thought it was my high metabolism or then later low blood sugar, then later hyperthyroidism. (As you can tell, I had no idea.)
The doctors that I saw individually were just abusive really and decided that I was anorexic and lying about it so didn't give me any help (not even for the alleged anorexia), never mind that I came to see them about the problem asking for help and that I ate insane amounts of food that my jaw hurt.
So is this dramatic difficulty to keep on weight part of this disease? Or was it hyperthyroidism?
During that whole time, I was never bloated, but since jan I am. |
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cruelshoes
Joined: 23 Sep 2005
Posts: 2565
Location: Washington State
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| Posted: Sat Apr 12, 2008 7:27 pm Post subject: |
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| voix wrote: | Thanks for all that information! So nice to take the effort. It clears a lot of things up.
I guess if >/=10 is normal and I am 266, then there's no ambiguity--one of the few test result that are clear. Is the high number indicative of severity? I saw something that said that it didn't matter if it was 11 or 350.
I still don't understand the need to get a biopsy if you can do the tTG test to see if there is tissue damage. |
The ambiguity lies in the Enterolab testing method. Here is a statement from the American Celiac Diasease Alliance:
| Quote: | Statement on Stool and Saliva Testing from
ACDA (American Celiac Disease Alliance)
3/26/08
"There are well accepted criteria for the detection and diagnosis of celiac disease. The tests used to fulfill these criteria have been subjected to scientific scrutiny and validation. To our knowledge tests of antibodies in stool or saliva have not been validated as a robust test for the diagnosis of celiac disease. Many insurance companies base their decision to cover the costs of testing on the scientific evidence that supports the testing of that individual (indication) and the actual test used (validation).Our organization relies on the expertise of its physician members, as well as the recommendations of the:
- American College of Gastroenterology;
- North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN);
- NIH Consensus Panel on Celiac Disease; and
- Childrens Digestive Health and Nutrition Foundation
for the most current scientifically proven information on the diagnosis of celiac disease.
The ACDA promotes awareness and understanding of celiac disease among the general public and to also disseminate scientifically validated information to guide physicians in the detection and management of the disease. "
Andrea Levario, Executive Director
American Celiac Disease Alliance
www.americanceliac.org |
Dr fine who runs Enterolab may be the genius of the century, or he may be a charlatan. Maybe he's somewhere in between. But until he has his methods and results reviewed by his peers, I don't think Enterolab results will be accepted by mainstream medicine. He cannot diagnose celiac disease because the methods he uses are not the accepted protocol. You just have to decide if that is important to you.
The endoscopy is used to confirm the celiac diagnosis from the bloodwork and to check for other conditions.
http://celiacdisease.net/testing
| Quote: | Why is it necessary to have the endoscopic biopsy?
It is important to know that the blood testing can only confirm that you do not have celiac disease. This is why the biopsy is necessary if your test results are positive, to confirm the results. It is important to definitively establish the presence of celiac disease and rule out the presence of other conditions, including food allergies, a far more common condition |
There are other conditions that can cause an elevated tTg reading. The biopsy helps confirm that the TtG elevation is due to celiac and not other causes.
http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-Testing.htm
| Quote: | Causes of false positive celiac serologic tests
The endomysial antibody test is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38]. |
Good luck with whatever you decide your next step is. 
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork
A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt |
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aklap
Joined: 02 Oct 2004
Posts: 8616
Location: WI, USA
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| Posted: Sat Apr 12, 2008 8:35 pm Post subject: |
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| voix wrote: | | So is this dramatic difficulty to keep on weight part of this disease? Or was it hyperthyroidism? |
Yes - on both accounts. It could be an absorption issue due to the celiac disease. It could be a thyroid issues too. The interesting part to this...thyroid issues can be associated with celiac disease.
http://www.csaceliacs.org/library/whythyroid.php
http://thyroid.about.com/cs/latestresearch/a/celiac.htm
http://www.thyroid.org/patients/brochures/Thyroid_and_Weight.pdf
It could also be something thing else too...
There's not doubt there's something going on with you. Certainly checking both avenues would be a wise thing.
| voix wrote: | | During that whole time, I was never bloated, but since jan I am. |
Again, because CD presents is so many different ways - it's not surprising.
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa
Last edited by aklap on Mon Jun 30, 2008 10:34 pm; edited 1 time in total |
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aklap
Joined: 02 Oct 2004
Posts: 8616
Location: WI, USA
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| Posted: Sat Apr 12, 2008 9:00 pm Post subject: |
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| voix wrote: | I still don't understand the need to get a biopsy if you can do the tTG test to see if there is tissue damage.
I take from articles that CD is only considered present if there is tissue damage, otherwise it is called gluten sensitivity--regardless of the genetic evidence. Is this correct?
I'd rather avoid drinking any sort of solution or anesthesia, but blood test is fine. |
The blood tests are a screening method. If the blood is positive - they generally take biopsy. The biopsy is the gold standard in dx'ing CD.
The blood tests are not perfect - thus the further need official dx. However, depending on the doc, they will give a dx based in symptoms, family history, bloodwork, reversal of symptoms when gluten has been removed.
Getting the biopsy is solely up to the patient. You can decide not to do it. If you feel positive blood work is enough for you - you're good to go. You may not be given an official dx by declining to do the biopsy.
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Sometimes the jargon used can be confusing. Some will use Celiac, Gluten Intolerant, Gluten Sensitive interchangeably. It just depends on the context in which it's used. Me personally, I try to use Celiac in it's current defined context. Non Celiac Gluten Sensitivity or Gluten Sensitive when gluten causes problems - but no villi damage has been proven.
I'm not saying that NCGS should be taken less seriously than CD. Often times they will present with similar sx's. The resolution for either is still the same - remove gluten.
You may ask - will NCGS develop into CD? The jury is still out on that yet. As I said, that's something that has not been studied - yet. The NCGS'ers that I know, strictly follow the GF diet as any compliant Celiac.
https://www.enterolab.com/StaticPages/EarlyDiagnosis.htm
| Dr Fine wrote: | | Some people have the misconception that if they don’t have celiac disease, but "I just have gluten sensitivity" then maybe they do not have to be strict with their gluten elimination from the diet. I do not think that is the case. Although a gluten free diet is like anything: less gluten is not as damaging as more gluten, but certainly no gluten is optimal if a gluten sensitive person desires optimal health. |
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa
Last edited by aklap on Mon Jun 30, 2008 10:35 pm; edited 1 time in total |
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voix
Joined: 10 Apr 2008
Posts: 148
Location: Colorado
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| Posted: Sat Apr 12, 2008 10:18 pm Post subject: |
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| Thanks so so much. I asked so many questions! I understand so much more now. |
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aklap
Joined: 02 Oct 2004
Posts: 8616
Location: WI, USA
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| Posted: Sat Apr 12, 2008 10:19 pm Post subject: |
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You are so so welcome!!
The more ya ask - the ya know
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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yogaprof
Joined: 21 Jan 2008
Posts: 34
Location: Washington State
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| Posted: Wed Apr 16, 2008 4:25 pm Post subject: |
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| just jumping in here. I am pretty newly here and 3 months GF. I had major GI problems, a diagnosis of crohns disease and tons of tests in the past two years. I tested negative for celiac by blood test and biopsy, but I went to a naturopath and his tests showed a high gluten intolerance. I stopped the gluten and am much better. I may never have an accurate diagnosis as to what is wrong with me, but I committed to focusing on symptoms and if I feel better that is good enough for me. take care, yp |
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voix
Joined: 10 Apr 2008
Posts: 148
Location: Colorado
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| Posted: Fri Apr 18, 2008 2:15 pm Post subject: |
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I think it is safe to say that I should give up gluten. I am going to get a more definite cd diagnosis. Otherwise, I know me, and I will just be planning till the day that I can eat gluten again.
If it comes up negative, which I doubt, I will still give up gluten, because I can tell a difference. I do wonder if there is some other food that may be a problem. First, the gluten and I will pay attention to anything else that gives symptoms. |
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voix
Joined: 10 Apr 2008
Posts: 148
Location: Colorado
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| Posted: Fri May 02, 2008 5:55 pm Post subject: Blood Results Are In |
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| I got the Celiac Disease Panel Results. I posted on the Diagnostic and Tech. forum here. |
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aklap
Joined: 02 Oct 2004
Posts: 8616
Location: WI, USA
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| Posted: Mon Sep 29, 2008 9:32 pm Post subject: |
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bump
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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