Finally Got My Enterolab Results!

[dfish]

Yay! I finally got my Enterolab results! But I have a couple of questions about them and am hoping someone here can help. Here are my results:

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 48 Units (Normal Range <10 Units)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase

Fecal Antitissue Transglutaminase IgA 33 Units (Normal Range <10 Units)

Stool Test for Small Intestinal Malabsorption

Microscopic Fecal Fat Score: 104 Units (Normal Range < 300 Units)

Stool Test for Milk Sensitivity

Fecal anti-casein IgA antibody 34 Units (Normal Range <10 Units)

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0604, 0303

Serologic equivalent: HLA-DQ 1,3 (Subtype 6,9)

Interpretation: Analysis of this stool sample indicates you have dietary gluten sensitivity resulting in an associated autoimmune reaction to the human enzyme tissue transglutaminase, but no small intestinal malabsorption/damage. You also have antibodies to the main cow

[Carriefaith]

I have "sensitivity" rather than disease? And, if I go totally gluten free now then I can avoid getting full blown celiac sprue? Is that correct?

I think you are right, your body is sensitive to gluten. I'm not sure if gluten sesitivity can lead to celiac, maybe someone else could answer that question. However, it is obvious that your body does not want gluten so it would be a good idea to eliminate it from your diet.

As for casein, I think that if your body is producing antibodies againist it would be a good idea to eliminate it. "Another theory is that gluten and casein (and probably other foods) need to be eliminated because they are insufficiently digested and thus provoke an immune system reaction, or an IgG-mediated reaction. Perhaps because of an injured gut, or poor overall digestion" Therefore, you may be preventing digestion.

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Try not to feel overwhelmed... I am gluten and lactose free and I find it's very easy. It was hard at first, but those foods made me so sick that it just isn't worth the discomfort and damage. Just ask if you need any recipe ideas or meal ideas, we're here to help you through this!

If you do decide to go gluten and dairy free it might be a good idea to talk to your doctor about vitamin/calcium supplements. I take Calcium/magnesium and vitamin D.

[tarnalberry]

Enterolab doesn't diagnose celiac disease specifically - because they are not doing a biopsy. (It's kinda a CYA, in my opinion, but an important one for now if they are to gain credibility amongst the disbelieving medical professionals out there.) There's some debate - in a number of communities - over the possibility of gluten sensitivity that does not lead to intestinal damage (celiac disease). There just really isn't enough research on the subject. Either way, the current thinking is that most cases of "gluten intolerance" where damage is not yet found on a biopsy which are not "treated" by a gluten-free diet will eventually turn into celiac, with damage occuring.

As for the milk issue... Casein dependent enteropathy (where casein causes damage to the intestines) is rather rare, so I wouldn't worry about that so much as you may continue to feel less than your best. I wouldn't say "I just won't feel 100 percent better and may still have tummy problems from time to time?", because if casein really is causing you problems, you may only feel 50% better and have tummy problems every day you eat something with dairy. But if phasing these two out seperately is what you need to do, and it's worth the slower recovery, that is a perfectly valid option.

Going Gluten-free Casein-free isn't as bad as you might think - particularly if you can have soy - but it does take some getting used to. Like simply going gluten-free, going Gluten-free Casein-free is much easier (and healthier and cheaper) if you stick to naturally Gluten-free Casein-free items and do your own cooking. But there are a number of resources out there (particularly since the Gluten-free Casein-free diet is one treatment that some people use for autism) that can help make the transition easier. A number of us here are Gluten-free Casein-free (and other 'F's) as well.

[KaitiUSA]

Just because it showed up no malabsorption does not mean you do not have any damage. It could just be starting and not enough to detect as of yet. Your body obviously has an issue with gluten as well as milk. Alot of celiacs have trouble with milk ...I used to until I went gluten free..now I have no problem with it. Whether your 2 are connected or separate I do not know. You should try both a gluten and casein free diet and see if that helps.

Good luck

[burdee]

Per my Enterolab test results last July I went absolutely dairy free as well as gluten free. Abstaining from casein (in dairy) eliminated ALL my chronic sinus problems and almost all allergy symptoms (still react to cats and tree pollen) and completely resolved my chronic LIFELONG constipation problems. (I now react to gluten contamination with 'classic' diarrhea, rather than my former excruciating pain and constipation which may have been really caused by dairy.) Don't be so quick to blame ALL your symptoms on gluten, especially if going gluten-free did not eliminate all your symptoms. Prior to my Elab tests, I was lactose free (used 'lactaid supplements for dairy or consumed "Lactaid" milk products). However, after eliminating all dairy, I slowly began to recover from symptoms which eliminating gluten did not resolve. However, I noticed I ALSO reacted to soy products with symptoms similar to my 'dairy' symptoms. So I ALSO had to eliminate SOY, which was quite a challenge, but well worth feeling better. If your family medical history contains diabetes, you might be interested in what Ron Hogan says in "Dangerous Grains" about gluten, dairy and soy as "diabetogenic" proteins. His theory certainly motivated me to avoid soy and dairy as well as gluten. Just about EVERYONE in my father's side of the family gets Type 2 diabetes after age 40. Either through my own weight control efforts or celiac disease keeping my weight low, I escaped that diabetic heritage, but I won't take any chances now.

Also at the time of my Elab tests I was taking probiotics and enzymes, which Dr. Fine said may have masked some malabsorption. Even after 50 years of undiagnosed celiac disease, my malabsorption results were 'normal'. However my excruciatingly painful symptoms were NOT.

BURDEE

[dfish]

Burdee:

I have noticed more of a reaction from soy than from dairy in the past, so I am extremely interested in finding out what kinds of things you eat, including mainstream products, that do not contain gluten, soy, or casein. This is the diet that I think I need. I've been doing research for hours since I got my results back and am finding that most alternative cheeses, milk products, etc, either contain casein or soy. Could you please give me some ideas as to what you eat? I would very much like to be soy/casein/gluten free but to be totally honest, I cannot go home and cook from scratch every night and need some easy to prepare foods. I also react a bit to eggs, so having eggs for breakfast is not an option. My days of grabbing a yogurt are over and now I'm totally lost!

[tarnalberry]

Cooking from scratch need not be very time consuming, particularly if you take an hour or two on the weekends to prepare for the coming week. It may mean a slightly different way of eating, but it is still healthy and tasty. (Most of what I make takes half an hour to prepare/cook - from scratch.)

[burdee]

Hi DFISH:

Before I tell you what I eat while abstaining from gluten/dairy/soy, I suggest you go to www.gfcfdiet.com (website for parents who use Gluten-free Casein-free diet to control their autistic children's symptoms) and order their shopping guide. Obviously, you will have to contact manufacturers or check items for soy, but that guidebook is a good start. Unlike you I have time to cook. However, when I'm not hungry, I don't want to think about food. When I am hungry, I prefer to EAT, NOT COOK. So most of my meals are microwaveable or quickly prepared. Here goes ...

BREAKFASTS (I hope you're not peanut sensitive ):

Adams No Stir Peanut butter on gluten-free English Muffins (Ener-G Brown Rice Sweet Potato) or Food for Life Rice Pecan Bread plus fruit sweetened fruit spread plus some pear, apple or orange slices;

A slice of Jennie O Extra Lean Turkey Ham microwave heated with fruit and a slice of my homemade gluten-free/df/sf banana or date nut bread (which I might also substitute for English muffins with peanut butter);

A hot cereal combo of quinoa flakes, rice bran and almond milk with blueberries OR Amaranth O's cold cereal with peaches, blueberries, or strawberries and chopped macadamia nuts (I seldom do cereal because I need higher protein/fat meals for staying power, but cereal is an occasional treat.)

AT HOME LUNCHES:

Deli sliced turkey (Oscar Meyer, Hillshire Farms, Applegate or Diestal) on gluten-free bread with relish, mayo (Spectrum Naturals canola has no soy or Nalley's Lite, a NW Co.) and lettuce with fruit, and maybe Lifesavers for dessert (IF I HAVE ENOUGH TIME);

TO GO (OR PACKED) LUNCHES:

Oscar Meyer liverwurst or canned sardines (in olive oil, not soybean oil) on Rice cakes (avoid those with Tamari, a form of soy) with fruit;

White corn tortilla wraps filled with deli sliced turkey and homemade (or safe purchased) guacomole with fruit and homemade gluten-free cookies;

gluten-free/DF/SF smoked sausages (Gerhard or Applegate Farms has a great chicken apple flavor) with a large gluten-free/SF/DF cooky and fruit;

Peanut butter and banana sandwich on thinly sliced English muffin or Trader Joe's Brown Rice bread (that's so filling I can only add a Lifesaver for dessert).

DINNERS:

Any meats, poultry or fish prepared with gluten-free/DF/SF seasonings and oil (usually olive), served with fresh or frozen vegies (usually one green or yellow plus one starchy), with Dryers' or Double Rainbow sorbet for dessert (If I'm ambitious I can make tapioca pudding with Vance's darisubstitute milk which doesn't separate when cookied);

Entree salads with cooked or raw vegies, meats, beans with Annie's Honey Mustard or Raspberry (check other flavors or brands for soy free) dressing with a 'bready' dessert like gluten-free cookies or homemade carrot cake muffins (ON WARM SUMMER NIGHTS ;

I PREPARE THESE ON A WEEKEND AND FREEZE LEFTOVERS FOR QUICK MEALS:

Soups from any kind of beans, meats, vegies with Ener-G broth mixes and herbs for flavor (I'm pretty creative, so anything goes here--THERE ARE SEVERAL SOUP BRANDS WITH gluten-free/SF/DF VARIETIES WHICH CAN BE USED AS A BASE OR ALONE);

Stir fried meats and vegies with cornstarch and Ener-G broth sauces served over brown rice or Rice noodles;

Spaghetti with Prego or any GFDFSF sauce base to which I add vegies and meat and serve over quinoa or tinkyada pasta.

SNACKS:

I try to eat fairly balanced meals since I get reactive hypoglycemic problems if I eat high carb/low fat stuff .... SOOO my only snacks are nuts (any kind free of soybean oil); celery or apples or Ener-G cinnamon crackers with peanut butter or slices of apple sausage.

I OMITTED ANY EGG DISHES, because you said you were also sensitive to eggs. I also omitted specific recipes for my soups, stir fries, fruit breads and cookies, but you can PM me for more details. I've probably also forgotten some menus, but that will give you some ideas. Feel free to email or PM me for more info.

BURDEE

[kabowman]

Now, I know I am in the minority with the thought process I will express - celiac disease means DO NOT EAT GLUTEN - it will damage your body! However, I have yet to see where celiac disease means you have to elimiate soy, dairy, etc. because of the same problem.

My comment is this: If your body is not reacting to these other foods (test the problem with elimination and add it back in), then why would you eliminate it from your diet if it isn't damanging your body?

However, maybe this is just the pointer you needed to figure out something else you are having problems with and were unable to pinpoint before...sorry if I offend anyone but I just don't get it.

I guess I am just missing the whole issue...of course, if you look at my signature, you will see that I have had to eliminate a LOT and I think I need to add safflower and/or sunflower oil too...

[skbird]

Hello! It was good to read your results because we have almost the same exact genes - except I have HLA-DQB1*0602, 0303.

Gene Test for Gluten Sensitivity

Molecular analysis: HLA-DQB1*0604, 0303

Serologic equivalent: HLA-DQ 1,3 (Subtype 6,9)

Anyway, all of my antibodies were under 10 yet I definitely have symptoms, in fact I am suffering right now from an accidental glutening this past weekend.

From what I understand, the genes we have are not the two main Celiac genes but they do imply gluten-sensitivity. In fact, DQ1 is implicated in gluten ataxia (which affects neurological reactions like issues of balance, peripheral neurapathy, mood disorders, etc) which is something that cannot obviously be measured with an intestinal biopsy. I have also read that the second gene, DQ9, is like a twin to the other main Celiac gene, DQ8, in that it has very similar attributes. I know that Dr. Fine has done research to connect both to gluten sensitivity and Dr. Hadjivassiliou has connected DQ1 to gluten ataxia.

Anyway, I had not read of anyone's test results that were positives who had the same genes I do. It's possible you might not develop malabsorption but instead have other related gluten-sensitive issues, therefore imperative you follow a gluten-free diet.

Take care

Stephanie

[tarnalberry]

kabowman - the reason we are suggesting keeping dairy out is that the tests showed she was producing antibodies to casein as well as to gluten. you don't necessarily have to eliminate dairy or soy because of gluten intolerance, but they may also give you symptoms if you are intolerant to those proteins as well.

[Guest barbara3675]

Dfish----My Enterolab results came back much the same as yours. I had already eliminated gluten, so just got busy and eliminated milk products. I was told by my very reliable healthy food store owner that in six months time, I might be able to introduce milk products back into my diet. I use some of the highly processed milk products like cheese and sour cream with no effects, but not ice cream or milk. I use soy ice cream occasionally and rice milk most mornings on my cereal. They are just fine with me and I never was a milk drinker. I take calcium, Vitamin D and C and lots of magnesium. Hope you get feeling better real soon. For me, I am just gluten intolerant, so I don't get sick to my stomach or anything, but just uncontrollable diarreah. Before I went gluten-free, I had this dull ache in my abdomen that went away after I went gluten-free/cf. Much luck to you....you will do fine.

Barbara

[trying4faith]

Who is Dr. Hadjivassiliou ?

I saw my GI today, who promptly told me that the results of Fine's testing are inconclusive, he has never submitted his testing for peer review, and would not endorse ordering the tests for me - which means I have to pay out of pocket.

I pointed out that after a colonoscopy, bloodwork AND endoscopy that his testing results were inconclusive as well...

Anyway, I was very disappointed with his opnion on Fine's research and testing methods. And paid out-of-pocket tonight for the first panel for me and one of my sons. I did not get the gene panel and am now wondering if I should have?

If anyone knows of other docs performing this test, I'd like to send the research back to my doc's office - seems silly to put people through all that expensive and risky testing when all that is needed is a little stool sample. Worse, I don't want my toddler anesthetized just to get the same inconclusive results.

Thanks all.