Enterolab Results- Not Mad - Just Sad!

[DonnaD]

Hello,

I just got my Enterolab results. I would really appreciate any feedback regarding the actual numbers and the genes, i.e do you have the same and if so what symptoms do you have?

I must say that I projectile-vomited as a baby and my health has been downhill pretty much since, IBS-C, Fibro, Chronic pain syndrome, RSI, irritable bladder, sleep disorder, weight gain - except for the Atkins diet when I suddenly discovered enough energy to get divorced, go back to college and start a business!

I found this wonderful site when my daughter was diagnosed coeliac by biopsy in November. I really cannot say how wonderful you all are sharing your experiences.

I will book an appointment with my doctor and ask to get tested for Osteoporosis (I have a 'dowagers hump' which I understand could be an indication of bone loss) Is there anything else I should as for while he is feeling guilty? I also had Depo P injections for a while and suspect that that did not help.

Gluten Sensitivity Testing

Fecal Antigliadin IgA 38 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 406 Units (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0501, 0501

Food Sensitivity Testing

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range

<10 Units)

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, 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.

Although you do not possess the main genes predisposing to celiac sprue

(HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have a genotype that predisposes to gluten sensitivity [either HLA-DQB1*03xx (HLA-DQ3, not 0302), or any HLA-DQB1*05xx or any HLA-DQB1*06xx (HLA-DQ1)].

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.

A fecal fat score greater than 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe. Any elevated fecal fat value should be rechecked in one year to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.

Possible causes of elevated fecal fat scores besides gluten-induced damage to the intestine include:

* Another inflammatory bowel disease (such as Crohn's disease which is associated with gluten sensitivity)

* Deficiency in the production or secretion of pancreatic enzymes or bile salts

* Overgrowth of bacteria in the small intestine

* Diarrhea itself causing the fat to rush through the intestine unabsorbed

* Consuming very large amounts of dietary fat, eating unabsorbable synthetic dietary fat substitutes or taking "fat blockers"

* Resection of the small intestine causing "short bowel syndrome"

Interpretation Of HLA-DQ Testing by Molecular Analysis and Conversion to "Serologic Equivalent": Today HLA-DQ gene testing is done by analyzing DNA using molecular techniques. In the past, the methods were done by analyzing blood cells for the antigens produced by the genes, and these past methods were responsible for the most commonly known nomenclature for HLA-DQ genes even today (using integers such as "DQ2"). These are called "serologic equivalents" to the specifically analyzed gene material. The serologic equivalents are as follows:

* If the first two numbers of the molecular type are 05, the serologic equivalent is DQ1 subtype DQ5

* If the first two numbers of the molecular type are 06, the serologic equivalent is DQ1 subtype DQ6

* If the molecular type is 0201, the serologic equivalent is DQ2 * If the molecular type is 0301, the serologic equivalent is DQ3 subtype DQ7

* If the molecular type is 0302, the serologic equivalent is DQ3 subtype DQ8

* If the molecular type is 0303, the serologic equivalent is DQ3 subtype DQ9

* If the first two numbers of the molecular type are 03 but it is not 0301, 0302, or 0303, the serologic equivalent is DQ3

* If the first two numbers of the molecular type are 04, the serologic equivalent is DQ4

The gluten sensitive, celiac genes are HLA-DQB1*0201 and HLA-DQB1*0302

(HLA-DQ2 and HLA-DQ8, respectively).

The other gluten sensitive genes are any molecular type involving another

HLA-DQB1*03 number (i.e., HLA-DQ3), or any HLA-DQB1*05 number, or any

HLA-DQB1*06 number (i.e., HLA-DQ1)

If you have one gluten sensitive gene, then your offspring have a 50% chance of receiving the gene from you, and at least one of your parents passed it to you. Having two copies of a gluten sensitive or celiac gene, means that each of your parents, and all of your children (if you have

them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

For more information about result interpretation, please see Open Original Shared Link

[Rachel--24]

Hi,

Sorry you are feeling sad about your results. I remember feeling the same...but mostly confused.

Since your dd had positive biopsy and you also have problems...I'm sure its no coincidence. Have you been gluten-free yet? I'm not too up to speed on the different genes but I'm taking a guess (someone might come along and correct me). I'm guessing you have two copies of DQ1. From what I've read 2 copies of this gene can cause severe symptoms...both neurological and intestinal. It very rarely would cause villi damage but it *can* happen.

I have 1 copy of DQ1. My results were a little different from yours and I had been pretty much gluten-free for 4 months before testing.

Gluten Sensitivity Testing

Fecal Antigliadin IgA 16 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 912 Units (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0301, 0501

Food Sensitivity Testing

Fecal anti-casein (cow's milk) IgA antibody 9 Units (Normal Range

<10 Units)

I also later tested for yeast and eggs and they were both negative.

My symptoms were severe and kept me on disability for 2 years. The diet has helped alot but I still have malabsorption and other issues. I didn't have anyone guiding me (other than this board). I have a new doctor who's going to start working with me next month so hopefully I'll get on track.

[Nevadan]

If you haven't tried the gluten-free diet yet, that would probably be the most conclusive test - observe how your body responds. After a few days of gluten-free, if your body responds positively and you are still not convinced, you might try gluten again and see if your body responds negatively. I did three gluten-free/nonGF cycles before I became convinced. My symptoms that got me into exploring gluten effects were an osteoporosis dx at 55(male), some mild peripheral neuropathy, RLS, and slight anemia. Other symptoms that I didn't really consider but thought were just due to aging: abdominal gas, bloat, and constipation. These latter symptoms are the ones that responded dramatically to a gluten-free diet. From what I read, the symptoms that first got me started investigating gluten will take months or years to see any change. I hoping they respond as positively as the abdominal stuff.

I subsequently tested at Enterolab: positive anti-gliadin IgA antibodies, positive anti-transglutaminase IgA, good results for malabsorption, and a pair of HLA-DQB!*602's (DQ1's) - and casein intolerance. I can't honestly say that these results have helped as much as the earlier dietary testing. Hopefully someday soon science will better understand this gluten thing.

Meanwhile, I don't believe there is any lab test yet that can definitely rule gluten sensitivity out. Assuming you have observable symptoms, the dietary test is still hard to beat.

I hope this is somehow helpful and best wishes.

George

[Nantzie]

I don't have the main celiac genes, but I do have a pair of DQ1's. And I'm telling you, even though I don't have the celiac genes, gluten just makes me feel horrible. I tried a couple of trials off it, then on it, and it's like I'm a completely different person when I'm on gluten. So as soon as I get my biopsy done in Jan/Feb, I'm parked my booty permanently in the gluten-free world. There are quite a few people on here who are gluten-free even though they don't have the main genes, or haven't done their genes, or have chosen not to do the biopsy, or just plain feel better off gluten. I think that there is a lot of research to be done in the gluten-sensitive world, even with something that sounds as cut and dry as genetics.

I did a websearch for you, searching "HLA-DQB1*0501" (with the quote marks) on Yahoo, and this is the search page I came up with.

Open Original Shared Link

I also found a specific page which is reportedly a disclosure of intellectual property by Dr. Fine (Enterolab), that says:

"Finally, the presence of certain HLA-DQ alleles, particularly HLA-DQ1,3; -DQ1,7; -DQ1,8; and -DQ1,9, HLA-DQ1,1, and at least two subtypes of the HLA-DQ1 allele identified by molecular analysis as HLA-DQB1*0501 and HLA-DQB1*0602, as indicators in diagnosing immunologic food sensitivity, particularly gluten sensitivity or celiac sprue, and in diagnosing the related disease of microscopic colitis and other autoimmune disorders is also disclosed by the invention."

I have the HLA-DQB1*0602, so that was interesting for me too.

Here's the page link - Open Original Shared Link

So, like I said, the case isn't closed on what is and isn't a celiac, or even a gluten-sensitivity gene. It's because of pages like this that I've decided to go ahead and eat gluten so that I can have the biopsy. But I did do two 2-3 day trials off gluten just to see how my body reacts. It was such a huge, positive change off gluten that I almost scrapped the whole idea of even getting the biopsy. It was such a change that going back on gluten, even though Christmas is coming, was one of the hardest things I've done. I actually find myself avoiding food rather than eat the gluten. But, my family is kind of dis-believing of the whole thing, so I've decided to just go for the diagnosis rather than be questioned for the rest of my life. It wouldn't surprise me at all if I ended up having intestinal damage, but it wouldn't surprise me if I didn't either. We'll see.

I hope this makes you feel more like you've been barking up the right tree.

Nancy

[DonnaD]

Thank you all for your replies,

I am not at all surprised by the results. I am sad that I have been ill for so long with such classic symptoms. I need to make a list of all the other tests I want done now and I'm going to print out some the reports from the links you have kindly given.

I have been gluten-free more or less for 6 weeks or so, and have been avoiding wheat for about a year as it made my IBS flare up but still have to tackle the 'hidden' gluten in meds, shampoo etc. I have noticed major improvement in my 'IBS-C' but not so much with the Fibro, weight gain, chronic back/neck pain and hump,sleep issues, brain fog, memory problems and the lumps of ice that used to be my feet!

I have totally lost the ability to drink wine though, it makes me very tipsy very fast now.

I needed to get the tests done for my own peace of mind and will be 100% gluten-free from today onwards, I am so glad that I found you here and I can look forward to my health getting better rather than worse each year.

Donna