Enterolab Results -> Questions

[mmaccartney]

I just got my results from Enterolab, and they confirm everything I've thought even though the "standard" medical tests were confusing:

Fecal Antigliadin IgA 52.5 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 20 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 58 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 27 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

???So, does this mean that I have HLA-DQ2,2 and HLA-DQ3,7 ???

????Is HLA-DQ2,2 a celiac gene, and HLA-DQ3,7 a gluten intolerance gene??

Here was what Enterolab indicated:

Interpretation Of HLA-DQ Testing: HLA gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having 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.

So, lucky me! I've got one of each, making both the predisposition and reslting symptoms more severe, and I have passed at least one gene to each of my children, just wonderful!

?????The anti-casein caught me off guard as I thought I was lactose intolerant. Does this mean that I will never have milk products, unlike the associated lactose intolerance that might heal over time??

So, at the end of the day, does this mean Celiac or gluten intolerance??? Or does this go back to the damage to the villi issue?

[aikiducky]

Celiac is just a name. It's the name that is usually given the disease if you have biopsy proven damage to your intestine, or if your doctor for other reasons decides to call it celiac. Since you have diagnosed yourself through Enterolab, you can decide to call your condition whatever you want.

Casein intolerance isn't like lactose intolerance, the similarity in the names is confusing. Casein intolerance is like gluten intolerance, you shouldn't have any dairy anymore, ever. Sorry.

Pauliina

[Carriefaith]

From your results, I would guess that you may have celiac disease, especially if you were having symptoms in addition to those positive results. Enterolab cannot dignose celiac disease, but they can highly suggest that you may have it. I read from someone here on this message board that their doctor diagnosed them as having celiac disease after getting a positive gene test and having symptoms and/or a positive blood test? (I don't remember for sure if their doctor diagnosed them with the symptoms or blood test). Some doctors are now diagnosing with just positive blood tests. You also appear to be intolerant to casein the milk protein. If you are casein intolerant you wouldn't be able to tolerant any forms of dairy.

I am on a gluten and casein free diet, so if you need any help with recipes and meal ideas please ask!

[italiana1981]

I just got my results from Enterolab, and they confirm everything I've thought even though the "standard" medical tests were confusing:

Fecal Antigliadin IgA 52.5 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 20 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 58 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 27 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

???So, does this mean that I have HLA-DQ2,2 and HLA-DQ3,7 ???

????Is HLA-DQ2,2 a celiac gene, and HLA-DQ3,7 a gluten intolerance gene??

I just got my results from enterolab and there were almost identical scores/genetypes to yours!

What diet are you following and have you got good results?

i am brand new to this and desperate for guidance.

[mmaccartney]

I just got my results from enterolab and there were almost identical scores/genetypes to yours!

What diet are you following and have you got good results?

i am brand new to this and desperate for guidance.

For me the effects of getting glutened get worse as I remain gluten-free and DF. I have found that I am quite sensitive, and cannot eat in most restaurants. I've had problems with Outback, Chipotle, Amys Kitchen, McDonalds Fries (sorry, had to throw that in!) and many other places, even when being quite careful and ordering simple things. So, I eat mostly potatoes, soy, fresh fruits and vegetables, I just recently reintroduced beef, pork and chicken to my diet. Pancakes and sweets from The Cravings Place, and marshmallow peeps.

Probably the biggest change I made is that I make 99% of what I eat from whole, fresh ingredients. I eat very little processed foods, and no restaurants. This is the only way I've found to not get sick!

[italiana1981]

For me the effects of getting glutened get worse as I remain gluten-free and DF. I have found that I am quite sensitive, and cannot eat in most restaurants. I've had problems with Outback, Chipotle, Amys Kitchen, McDonalds Fries (sorry, had to throw that in!) and many other places, even when being quite careful and ordering simple things. So, I eat mostly potatoes, soy, fresh fruits and vegetables, I just recently reintroduced beef, pork and chicken to my diet. Pancakes and sweets from The Cravings Place, and marshmallow peeps.

Probably the biggest change I made is that I make 99% of what I eat from whole, fresh ingredients. I eat very little processed foods, and no restaurants. This is the only way I've found to not get sick!

Thank you so much for your reply!

How did you find out about your egg allergy?

I think I might be sensitive also.

[mmaccartney]

How did you find out about your egg allergy?

I think I might be sensitive also.

Actually, I don't have a problem with eggs. Both of my children are allergic to eggs, and other things too. We found out about the egg allergy in Michael through skin prick testing with an allergist after 6 months of suffering and wondering. William we had tested before we introduced food into his diet at 6 months old, and his milk and egg allergy was already present!

[CMCM]

After I got my Enterolab results back and found out I had to go both gluten and dairy free, I was still having lots of digestive upset. I worried about eggs and soy, so later on I got the Enterolab egg/soy/yeast test, which came back negative. (Thank goodness!!).

What I realize now is that I can't handle starchy things (potatoes, rice, corn...similar things too), and the alternative gluten free baked goods were giving me problems too, and I also think I can't have much sugar. I don't know if over time these particular sensitivites will lessen or go away....but one thing I'm fairly certain of is that if I do go back to eating these breads, cakes etc....they have to be very occasional and never daily.

[CMCM]

Another thing...you tested with a celiac gene and a gluten sensitivity gene, like I did. Also, your fecal fat score was in the "normal" range, as was mine.

So what does this mean?

I am still trying to find out more, but it does seem that neither of us has malabsorption going on. That's good. Perhaps celiac isn't present yet.....but gluten sensitivity definitely IS present and should be dealt with.

From what I've read, I'm thinking that gluten sensitivity can be operative for long periods of time...AND, it can also do damage....and at some point in your life (or perhaps never) something can trigger celiac IF you have the predisposing gene. It sounds like if you don't have the celiac gene, you would just continue with gluten sensitivity, which should not be dismissed because it's just as bad as celiac in its own way.

For you and I, without a biopsy we can't know whether it's celiac or just gluten sensitivity which is operative at this time. But regardless, we should proceed in the same way: Stop eating gluten.

I asked Dr. Fine about all this, and he most strongly said that if you have either the celiac or the gluten sensitivity gene, or casein sensitivity, the answer is firmly DO NOT EAT GLUTEN (and DAIRY) any more. Period. This is to prevent problems in the future. If you have a celiac gene, you would be protecting yourself against developing other autoimmune diseases.....which are easier to prevent. Once you get another one (like rheumatoid arthritis) it's hard to get rid of it. The idea is one of predisposition via the genes and prevention with your diet, ultimately.

The unfortunate people are those with "silent" symptoms, although frankly, I think most people have symptoms of some degree which they just ignore. Look at all the heartburn/gas/digestive meds advertised and sold in this country!

[mmaccartney]

I found that when I first went gluten and dairy free that I was sensitive to many other things as well, beef, chicken, and others. I waited some time for my guts to heal, and now have reintroduced those fods (9months gluten-free) and am able to tolerate everything but milk and gluten now.

I've wondered about celiac vs. gluten intolerant as well. It seems that Celiac is the label for someone with gluten intolerance that shows villous atrophy. I believe that I had severe damage to my intestines, but when I had the malabsorption test done I was gluten-free for 8 months and substantial healing has occurred. Some doctrs feel that having the genetics, and a positive response to diet change is enough to diagnose with Celiac, others feel that there must be villous atrophy confirmed with intestinal biopsy.

I see my GI doc later this month, he did not order enterolab tests, but does suspect a "form" of celiac in me. I am going to share my results with him, and see if he will give me an official dx of Celiac. Why am I looking for an official diagnosis?? Legal protection!!!! Americans with Disability act.

Since I have both genes, I feel that gluten sensitivty has always been present. I had a vasectomy 1.5 years ago, and that night my celiac kicked in, without question. For you, perhaps the celiac gene hasn't been triggered, the only way to truly tell is to continue to ingest gluten and allow enough damage to occur so that the intestinal biopsies are posivtive but why do that???

the enterolab results for the TTG and the DNA support that totally. I think that I pushed hard enough to find out what was wrong BEFORE my guts were so damaged that they couldn't digest food. Also, if I had the malabsorbtion test performed at the height of my symptoms I am quite sure it would have been positive, I was in severe distress, we all that I had less then 6 months to live....how long can you live on chicken broth and Percocet???

[Franceen]

How do you get an "Enterolab" test? Is it a home test? What is there web address or phone #?

I just got my bloodwork back - negative all 3 (all IgG related) - Dr. says all negative. I am suspected of DH form of Celiac. But I had been gluten-free since December and taking Dapsone. Dr. says bloodwork so sensitive that shouldn't matter. But still have major major rash, which recurred after eating gluten for a week and still taking Dapsone. Originally Dapsone killed the rash and itch completely (along with gluten-free diet) Have not been able to get rid of rash with Dapsone and gluten-free since the gluten-fest. It is worse, in fact.

I had skin biopsy (2, in fact) but results not in yet, but Dr. is convinced they will be negative too.

My Dr. is an allergist, dermatologists around here are TERRIBLE.

I am really miserable and sick from the Dapsone. DH take "years" to go away after going gluten-free. And my skin is so damaged and scarred and ugly, and still breaking out and I have to completely cover myself because of it.

Originally I had IBS symptoms and was told to eat a lot of fiber. So I increased whole wheat intake by about 1000% !! Then started getting the rash.

So, maybe Enterolab tests will tell me something Dr's can't! Do I have to do a 6-week Gluten-Fest for them to be accurate? (I could enjoy doughnuts and whole wheat toast and pizza, but might pay for it on the skin!).

Thanks for Help

[CMCM]

How do you get an "Enterolab" test? Is it a home test? What is there web address or phone #?

I just got my bloodwork back - negative all 3 (all IgG related) - Dr. says all negative. I am suspected of DH form of Celiac. But I had been gluten-free since December and taking Dapsone. Dr. says bloodwork so sensitive that shouldn't matter. But still have major major rash, which recurred after eating gluten for a week and still taking Dapsone. Originally Dapsone killed the rash and itch completely (along with gluten-free diet) Have not been able to get rid of rash with Dapsone and gluten-free since the gluten-fest. It is worse, in fact.

I had skin biopsy (2, in fact) but results not in yet, but Dr. is convinced they will be negative too.

My Dr. is an allergist, dermatologists around here are TERRIBLE.

I am really miserable and sick from the Dapsone. DH take "years" to go away after going gluten-free. And my skin is so damaged and scarred and ugly, and still breaking out and I have to completely cover myself because of it.

Originally I had IBS symptoms and was told to eat a lot of fiber. So I increased whole wheat intake by about 1000% !! Then started getting the rash.

So, maybe Enterolab tests will tell me something Dr's can't! Do I have to do a 6-week Gluten-Fest for them to be accurate? (I could enjoy doughnuts and whole wheat toast and pizza, but might pay for it on the skin!).

Thanks for Help

The GREAT thing about Enterolab is that you do not currently have to be eating gluten to show the antibodies. They say they can detect antibodies up to a year after you stop eating gluten! Just order form the website.....I'd suggest the complete panel for $369, which tests for antibodies, autoimmune reactions, malabsorption, the gene test, and a casein sensitivity test. They send you a kit, you produce a stool sample for all the tests except the gene test...for that one, they include two swab things (like a bit Q-tip) which you swab on each inner cheek, and then it all gets picked up by DHL (in my case) and sent back overnight to Enterolab. All the shipping is included in the fee, and you just call DHL the night before and they come to your house to pick up the package. All the instructions are in the package. Then you get emailed results in about 2 weeks. Here's the site: www.enterolab.com.

[mmaccartney]

I disagree with your Dr comments on the celiac panel being so sensitive. My serology only showed a slightly elevelated anti-gliadin IgA level. My IgG, and ttg levels were well below normal, BUT my Enterolab tests showed drastic differences as you can see in my original post above. Further, my change in diet showed drastic results!!

Enterolab can be reached at Open Original Shared Link they send you a kit in the mail, you "process" the kit, and send them your samples. I also recomend the full panel as well, it checks for your anti-gliadin IgA, TTG, anti-casein (milk), malabsorption, and genetics! It does cost about US$390, but for me it was worth it. I did not know I had two genes, one celiac and one gluten intolerance. Next move is to test my children and my mother (father died last year).

Oh, and enterolab recommends that you stay on your current diet I was gluten free for 6 months, and dairy free for 5 months when I took my test, and you can see the results were still quite positive, and I am VERY careful about x-contamination and I do not eat out! I wonder what they would have been like if I was on my "normal" diet with gluten and milk in it....