Enterolab report, does this indicate celiac?

[jen99]

Thank you all, I'm so glad to find this community. I have been gluten-free for about 2 months after latently discovering the link between autoimmune thyroid problems + gluten. Recently I did an enterolab comprehensive lab for me & daughter (not yet 4 yrs old.) I specifically wanted to test her because from 10months-30 months she was chronically constipated. I removed dairy, white flour and most rice during this time. It resolved a bit miraculously. Constipation is not a regular problem anymore, but ever since perhaps 2 years old she routinely has headaches and occasionally complains of tummy aches too. She also has had random bouts of eczema, usually on her back or bottom. 

So, enterolabs (fecal study) comes back and MINE shows somewhat mild result of anti-gliadan IgA (14) when 10 is normal. Also slightly elevated with oats. But virtually everything else checked was either null or very minor. <No problem; I can manage my diet.>

My daughter's shows:

• Anti-gliadin IgA: 130 (10 or less is normal)
• anti-oat IgA 34 (10 or less normal)
• Anti-Tissue Transglutaminase IgA 17 (normal less than 10)
• Yeast 4 (normal less than 10)
• antigenic foods: 26 (normal less than 10)... corn, almond, milk, egg, garbanzo and sesame seed all tested high/significant. Rice and soy moderate, walnut, cashew and white potato low. 
• ... literally there was nothing that they tested to which apparently there was no reaction! 

My head is spinning... questions:

1. Does the TTG score of 17 mean she has celiac? (or likely?) 2. Others have experience with a report like this? 3. Should I get different testing done? 4. How to address the apparent laundry list of offending foods? 

My partner doesn't want to put her through blood tests or invasive tests, he believes we should just eliminate gluten & oats, and watch the other "problem" foods and try to limit their frequency.  I will add that our general network of nearby primary care drs are not helpful; they have routinely chalked up eczema to being normal and acceptable, headaches as a ? (her eyes are fine) and they wanted to prescribe miralax for constipation. 

TIA

[Scott Adams]

The Anti-Tissue Transglutaminase levels she shows, if it were a blood test, does indicate celiac disease. Stool testing is not the norm, but I know Dr. Fine and do think that his testing will show gluten sensitivity. If you are opposed to blood tests or endoscopy to follow up to gather more information about her condition, then it's fine to just try out a gluten-free diet for a few months to see if her symptoms go away. Most of the moderators or board participants here won't be able to comment much on stool test results, but trying out the GF diet seems like your next step.

[trents]

Anti oat IGA? That's a new one for me.

If you do decide to get your daughter a blood test for celiac disease she would need to have been eating gluten regularly for 6-8 weeks before it would be valid.

[jen99]

54 minutes ago, Scott Adams said:

The Anti-Tissue Transglutaminase levels she shows, if it were a blood test, does indicate celiac disease. Stool testing is not the norm, but I know Dr. Fine and do think that his testing will show gluten sensitivity. If you are opposed to blood tests or endoscopy to follow up to gather more information about her condition, then it's fine to just try out a gluten-free diet for a few months to see if her symptoms go away. Most of the moderators or board participants here won't be able to comment much on stool test results, but trying out the gluten-free diet seems like your next step.

thanks so much.

[CMCM]

I had the Enterolab stool test done in 2005, and I've also met Dr. Fine at a lecture he did at a local university around that time and had the opportunity to question him a bit.  I later corresponded multiple times with his lab about my results as well and they were immediately responsive and always gave me further explanation as needed. 

One thing that attracted me to Enterolab's stool test method was that Fine claims antibodies can be detected in a stool sample up to as much as a year after you last ate gluten.  Since I had been greatly minimizing gluten for a long time, I felt I wasn't ever going to get any sort of definitive reading on a blood test, and I figured Enterolab's method might reveal something useful.  My results were about 2.5 to 3 times the normal mark, and since casein is also a problem for many celiacs, he tests for that as well and I was again similarly positive.  One thing I remember asking him was about the positive numbers....i.e. does an extremely high number indicate greater sensitivity than a lower number such as I got.  He said no, that was not the case.  Positive is positive.  I also did a gene test, which showed I have one celiac gene and one gene of the gluten sensitivity pattern.  Dr. Fine's results comments show he does not diagnose celiac disease (he could not actually do that with this method), but he speaks of the results in terms of gluten sensitivity.  He phrased my results as follows, and these comments actually are more meaningful to me NOW after a lot of reading than they were when I originally received them.  He makes some especially interesting points which I put in bold.

As for confirming celiac disease, he can't do that with this method.  He diagnoses gluten sensitivity.  There is also a part of the test that measures fecal fat which will indicate any malabsorption.  My test on that was OK, and Dr. Fine's conclusion was that since no malabsorption was indicated, I didn't have any intestinal damage...yet.  Here is what he responded to a couple of my questions about the advisability of a biopsy at this point, after his test:

1) You are correct on the gene issue, but I disagree with the biopsy. Many people get false negative biopsies and continue to worsen on a gluten-containing diet because their doctors tell them they have no damage and gluten is not a problem for them. Our malabsorption test has already indicated that you do not have any intestinal damage, so there is really no reason for you to go through the invasive procedure of a biopsy.

2) Yes, but if you do not take gluten and casein out of your diet, you could eventually incur intestinal damage.

3) I have heard this as well, but I encourage a lifetime elimination of both gluten and casein once you are positive. You may not have the same symptoms after a period of elimination and then reintroduction of casein into the diet, but it can still do damage and cause other more systemic symptoms.

Analysis of this stool sample indicates you have dietary gluten sensitivity. For optimal health and prevention of small intestinal damage, osteoporosis, damage to other tissues (like nerves, joints, pancreas, skin, liver, among others), and malnutrition, I recommend a strict gluten free diet. If you are experiencing any symptoms, these may resolve following a gluten free diet.  As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

HLA gene analysis reveals that you have a genotype containing the main gene that predisposes to gluten sensitivity and celiac sprue: HLA-DQB1*0201 (HLA-DQ2) and/or HLA-DQB1*0302 (HLA-DQ8).

 

AND THESE ARE GENERAL COMMENTS CLARIFYING RESULTS: (that would be sent to each person who has the test):

Interpretation of Fecal IgA to Gliadin and Other Food Antigens:  Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food.  For any elevated fecal antibody level, it is recommended to remove that food from your diet.

Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant intestinal antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for 6-12 months despite a negative test.
The numeric value of an antibody is not a measure of clinical severity.  Values of 10 Units can be associated with the same reactions as the maximum values we measure (200-300). Most positive reactions are between 20 and 80 Units. An analogy would be trying to use the level of antibodies to penicillin in a person who has had an allergic reaction to penicillin to determine if it would be safe for them to take penicillin again. This obviously is not done because those with demonstrated penicillin allergy could not take penicillin without the risk of suffering severe health consequences. Although gluten sensitivity is not a true allergy like penicillin allergy, the concept is the same.

Interpretation of Fecal IgA to the Human Enzyme Tissue Transglutaminase: Values greater than or equal to 10 Units indicate that the immune reaction to gliadin has resulted in an autoimmune reaction to the human enzyme tissue transglutaminase. It is this autoantibody that may be responsible for the many autoimmune diseases associated with gluten sensitivity.
Interpretation of Quantitative Fecal Fat Microscopy:  A fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is normal.

Edited March 30, 2021 by CMCM

[jen99]

Thanks for so much detail here. I really appreciate it! Starting to put all the pieces together now!! :) 

[CMCM]

Best of luck!  Remember, you've got to be as informed as you can possibly be and you have to be your own best detective and advocate.  After all this time, far too many doctors are almost totally uninformed about all this.

[GFinDC]

1 hour ago, jen99 said:

Thanks for so much detail here. I really appreciate it! Starting to put all the pieces together now!!

Hi Jen99,

If you do have celiac disease, then you need to avoid wheat, rye, barley and possibly oats.   Also, dairy is often a problem for a couple months after starting the gluten-free diet.

If you do go dairy-free, it's important to take a calcium supplement like calcium citrate.  Calcium citrate is more absorbable than calcium carbonate.

Other supplements you may want to take for a while are vitamin D, B-vitamins and boron, plus a mineral combo.

A good way to start the gluten-free diet is to eat whole foods like meats, veggies, eggs, nuts and fruit.  Processed foods are best avoided at first.  Also, low amounts of carbs and sugar can be hepful.

[trents]

CMCM, would antibodies produced by casein sensitivity be different than that produced by gluten sensitivity? Aren't the antibodies just the marker for inflammatory processes? I believe they may be specific for certain kinds of tissues or organs but I wasn't aware that the causes of that inflammation could be determined by the antibodies. Recently on the forum, links to research articles have been posted that show how casein, some non celiac bowel diseases such as Crohn's and certain meds blunt the villi in the same way that gluten does and produce the same antibodies that show up on an IGA panel. But maybe I am mistaken.

[CMCM]

1 hour ago, trents said:

CMCM, would antibodies produced by casein sensitivity be different than that produced by gluten sensitivity? Aren't the antibodies just the marker for inflammatory processes? I believe they may be specific for certain kinds of tissues or organs but I wasn't aware that the causes of that inflammation could be determined by the antibodies. Recently on the forum, links to research articles have been posted that show how casein, some non celiac bowel diseases such as Crohn's and certain meds blunt the villi in the same way that gluten does and produce the same antibodies that show up on an IGA panel. But maybe I am mistaken.

I can't answer this with certainty, but Dr. Fine said they tested for BOTH, which sounds like they can distinguish the two.  They did a gluten antibody test and a separate casein antibody test, so that implies the two are different.  But I don't really know for sure.   They told me that sensitivity to casein can cause the same kind of intestinal damage as gluten, and that once sensitivity is established such as with these tests,  it's important to avoid casein as well.  I had some other food sensitivity tests done a bit later, and those were all negative.

I have a lot of correspondence with Enterolab, which as I look back at it all, proves quite interesting.  To be honest, I can't say how much of what they claim should be considered established fact.  This was in 2005, and they also claimed Dr. Fine would be publishing his research in the next year, and as far as I can tell, it hasn't happened yet.  So 16 years on, nothing from them on the results of their testing, yet the lab continues to sell tests.  Is this just a money-maker for desperate people with gluten issues?  This is why I don't entirely know what to think about these tests and what they show, whether they are valid in any way.  Like everything else to do with celiac/gluten, nothing ever seems certain.

[dolson]

I was wondering if Dr. Fine is still practicing. A super nice guy and singer/song writer plus guitar player to boot. I know him from having Microscopic Colitis and he found I have MC and Celiac Disease. He's trying to gain awareness for MC and Celiac Disease. I know he moved from Dallas but closed shop and headed out west to Utah or Arizona. Can y'all help me find him? 

 

[CMCM]

Yes, just search for Enterolab and it comes up easily.  He's still in Texas, but the website mentions they moved office locations.

I met Dr. Fine at a celiac lecture at UC Davis back around 2006 or so.  After his lecture he also played some of his songs, so he was definitely a likable and talented guy.

[Scott Adams]

Dr. Fine has written a couple of article for us:

https://www.celiac.com/profile/81334-kenneth-fine-md/

and I am friends with him of Facebook. His lab is still open, and he is pursuing his love of music and, at least before the pandemic, was touring the USA with his band as a country western singer & song writer. He still manages his lab.

[CMCM]

I read the article and I can see why he hasn't published anything about his findings.  Sadly, the medical community as a whole is so closed to new information and reluctant to tear themselves away from previous beliefs, which are seemingly cast in stone.  No wonder so many on the gluten sensitivity spectrum go undiagnosed and continue to be prescribed medications to partially and poorly address their symptoms rather than the cause of their symptoms.  Of course, a dietary cure is not in the least bit lucrative for either doctors or the pharmaceutical companies.

As I long ago came to understand, I've had to learn about celiac disease all on my own and treat myself through my own knowledge and efforts.  I've yet to encounter a doctor who knew more than I do on this subject.  In fact, most of them know less than zero about it and give bad advice.  All of us have to be as informed as we can be, and we must be our own best advocates. 

Edited March 31, 2021 by CMCM

[dolson]

1 hour ago, CMCM said:

I read the article and I can see why he hasn't published anything about his findings.  Sadly, the medical community as a whole is so closed to new information and reluctant to tear themselves away from previous beliefs, which are seemingly cast in stone.  No wonder so many on the gluten sensitivity spectrum go undiagnosed and continue to be prescribed medications to partially and poorly address their symptoms rather than the cause of their symptoms.  Of course, a dietary cure is not in the least bit lucrative for either doctors or the pharmaceutical companies.

As I long ago came to understand, I've had to learn about celiac disease all on my own and treat myself through my own knowledge and efforts.  I've yet to encounter a doctor who knew more than I do on this subject.  In fact, most of them know less than zero about it and give bad advice.  All of us have to be as informed as we can be, and we must be our own best advocates. 

I don't understand why Gastroenterologist's are ill-informed on Celiac and especially Microscopic Colitis. Don't get me started. They know zilch about MC and wanted to give me hundreds of Pepto Bismol tablets a day at the Mayo Clinic, down in Jacksonville, FL. I took them and fell down and lost my balance. I took Pepto Bismol by the hundreds as a kid with no bad effects and it helped me feel better.I no longer take Pepto Bismol. Maybe they changed the formula, but it was scary ordeal. I had to sit down and get my balance under control.I don't want any Prednisone in my body, so I went the Pepto route.

 

Dr. Fine has not been treated well by his colleagues. You know doctors are jealous of each other. I found that out in the hospital. I dated a doctor and he also informed me of that. 

[dolson]

2 hours ago, CMCM said:

Yes, just search for Enterolab and it comes up easily.  He's still in Texas, but the website mentions they moved office locations.

I met Dr. Fine at a celiac lecture at UC Davis back around 2006 or so.  After his lecture he also played some of his songs, so he was definitely a likable and talented guy.

Thanks! I trust Dr. Fine. He got everything spot-on with my MC and Celiac. 

[dolson]

29 minutes ago, dolson said:

I don't understand why Gastroenterologist's are ill-informed on Celiac and especially Microscopic Colitis. Don't get me started. They know zilch about MC and wanted to give me hundreds of Pepto Bismol tablets a day at the Mayo Clinic, down in Jacksonville, FL. I took them and fell down and lost my balance. I took Pepto Bismol by the hundreds as a kid with no bad effects and it helped me feel better.I no longer take Pepto Bismol. Maybe they changed the formula, but it was scary ordeal. I had to sit down and get my balance under control.I don't want any Prednisone in my body, so I went the Pepto route.

 

Dr. Fine has not been treated well by his colleagues. You know doctors are jealous of each other. I found that out in the hospital. I dated a doctor and he also informed me of that. 

 

[dolson]

Your guess is as good as mine. I have not a clue. All I know is that he's a fine person and helped me tremendously. Trust his simple fecal tests. They have been 100% accurate.

[dolson]

Just now, dolson said:

Your guess is as good as mine. I have not a clue. All I know is that he's a fine person and helped me tremendously. Trust his simple fecal tests. They have been 100% accurate.

My only problem is cross-contamination. You have to make sure your foods are processed in an environment with only the food you can eat. I think I've been cross-contaminated on several occasions, and got sick. Be careful and read ingredients diligently.

[CMCM]

1 hour ago, dolson said:

My only problem is cross-contamination. You have to make sure your foods are processed in an environment with only the food you can eat. I think I've been cross-contaminated on several occasions, and got sick. Be careful and read ingredients diligently.

Especially if you are very sensitive to gluten, cross contamination is always a problem when you get outside food.  Sad, but true.  And even if a place understands about not eating gluten, they generally have no idea at all how to prevent cross-contamination and how a minute, almost invisible amount of gluten can make someone sick.  At this point, I don't trust any place except one gluten free bakery and cafe I know of....they don't have any gluten in the entire place.  Other places...it's risky.

[CMCM]

22 hours ago, dolson said:

I don't understand why Gastroenterologist's are ill-informed on Celiac and especially Microscopic Colitis. 

Dr. Fine has not been treated well by his colleagues. You know doctors are jealous of each other. I found that out in the hospital. I dated a doctor and he also informed me of that. 

It's a mystery to me as well.  You'd think this would be strongly within their area of concern.  I had always read that celiac was more easily diagnosed by a dermatologist if your symptoms manifested as DH (dermatitis herpetiformis).  This happened with my son, and he went to so many dermatologists who NEVER came up with the idea of testing for DH, they apparently knew nothing about it.  My son eventually self-diagnosed what was going on with his skin rashes.  Our own family doctor told me "You know more about this than I do!".  Yet.....this doctor didn't appear to do his own research and learn about it.  He could prescribe lots of expensive skin creams, though.

And yes....Dr. Fine was/is operating "out of the accepted box" of medical school training, so apparently there is often huge resistance to new information about something.  Sad but true.  I once taught (English) in a medical university (overseas) and a brilliant professor of microbiology confided that she had decided against becoming a doctor because she detested how so many doctors seemed to strut around like "little gods" as she put it, and were incredibly closed to new ideas.  Very strong opinion obviously, but she felt they behaved as though they knew everything there was to know and she didn't like that part of the medical world.

[white ridges]

On 3/31/2021 at 6:15 PM, dolson said:

Your guess is as good as mine. I have not a clue. All I know is that he's a fine person and helped me tremendously. Trust his simple fecal tests. They have been 100% accurate.

I have felt better since I have followed Dr. Fine's recommendations than I have in my entire life. I am so grateful to Enterolab.

[jen99]

Thanks. I’ve done a lot more reading since posting this and I agree. 

[dolson]

On 4/1/2021 at 4:21 PM, CMCM said:

It's a mystery to me as well.  You'd think this would be strongly within their area of concern.  I had always read that celiac was more easily diagnosed by a dermatologist if your symptoms manifested as DH (dermatitis herpetiformis).  This happened with my son, and he went to so many dermatologists who NEVER came up with the idea of testing for DH, they apparently knew nothing about it.  My son eventually self-diagnosed what was going on with his skin rashes.  Our own family doctor told me "You know more about this than I do!".  Yet.....this doctor didn't appear to do his own research and learn about it.  He could prescribe lots of expensive skin creams, though.

And yes....Dr. Fine was/is operating "out of the accepted box" of medical school training, so apparently there is often huge resistance to new information about something.  Sad but true.  I once taught (English) in a medical university (overseas) and a brilliant professor of microbiology confided that she had decided against becoming a doctor because she detested how so many doctors seemed to strut around like "little gods" as she put it, and were incredibly closed to new ideas.  Very strong opinion obviously, but she felt they behaved as though they knew everything there was to know and she didn't like that part of the medical world.

I agree with everything you said, White Ridges. Yes, doctors think they are "little gods" and many I no longer respect their ability to help me. If they don't know something, they blame it on other stuff or say it could be this, could be that. They will never say they "don't know" but I found my Type 1 diabetic doctor say "I know nothing about that disease". He has my utmost respect.

Many are rude, condescending, can't wait to get you out of the office and don't be late because they will charge you. If they are late, they are probably buying a Porsche or fancy auto. I've heard that all my life. Many have lied to me. Once they get into medical school they always graduate. They're in like flint. If you find one that has not graduated, it's because they have decided to not be a medical doctor. Most doctors are super jealous of each other. One dermatologist cut down another dermatologist because he was making more money. Doctors and hospitals are BIG BUSINESS! Dorothy  

[trents]

Wait a minute, folks! You are painting the medical profession with a jaded, stereotypical brush that is much too wide. Sure, there are no lack of doctors that fit the arrogant, self-serving, materialistic profile you paint. We have all run into those types. But to say all physicians (or even most) are that way is just no true.

I have been helped many times by physicians who were competent, not arrogant and truly concerned about their patients. I have even had them tell me, "I just don't have any answers" and were humble enough to refer me to a specialist. I have encountered many physicians who are good listeners and take what their patients say seriously. I know many physicians who donate weeks of their time every year or so to do medical missions in third world countries at their own expense.