Enterolab Results...

[Rachel--24]

I just got my results and I just really don't know what to think....

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)

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 y

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"

The malabsorption seems bad...close to being severe. I've lost 25 lbs. so obviously somethings going on. My gluten sensitivity numbers really aren't that high though...I've been on gluten-free diet (with accidents) for 3 months now. I know this would bring down numbers in a blood test but I dont know if it would make a difference in stool testing. I was extremely sick prior to the diet and have improved lots but I'm still nowhere near normal. I stopped losing weight but I'm not gaining either. I do get worse when I have grains...even gluten-free grains. Can the gluten sensitivity gene that I have really cause this much damage? I've been off work total of 21 months now and I just want to get better. I checked out Crohn's Disease before and I dont really have the symptoms. Originally I started the diet thinking I have Candida not Celiac. The report says the malabsorption could be caused by overgrowth of bacteria in the small intestine..in other words Candida. I don't know what to think. Does anybody have the gluten sensitivity gene with this much illness? I guess its possible I could have both but for some reason Candida scares me more than anything...just seeing the word scares me. If I could get better just by not eating gluten that would be great....I would never complain about having to be gluten-free. I just dont know if thats all I need to do. I've only been eating meats and veggies for 3 months now but for the past 3 days I've started adding gluten-free foods like cereal, candy, pasta and bread. Now I'm scared to eat anymore of it cuz I don't know if I'm "feeding" Candida and worsening my problems or what. I was feeling really good and didn't have any terrible reactions from anything I ate. I do react mildly to everything I eat no matter what it is...the reactions are more severe after having gluten and then get milder and milder over a few weeks time. Sometimes I know its from accidental gluten ingestion and I'll be able to pinpoint it but other times I just get sick and cant figure out whether I got glutened or not. I guess what I want to know is....with these low antibody numbers and no Celiac gene is it even possible to have that much malabsorption? Should I be looking for another cause other than gluten? Has anybody else been this sick with the gluten sensitivity gene and numbers as low as mine? Does anyone ever even test negative for the gene? Seems like everyone has it so thats why I don't even know if thats the cause of my illness. Obviously I'm sensitive to gluten but sometimes I wonder if its just cuz the foods that contain gluten also contribute to yeast overgrowth and the symptoms I'm experiencing are caused by the yeast. I was in a great mood today but now I'm confused and crying cuz I still don't have a real answer. I'm definately going to stay gluten-free but does anyone really think my symptoms can resolve just from staying off gluten? If it can happen then all of my prayers will be answered but I don't know if I should put all of my eggs in one basket.

Also I dont understand the whole gene thing other than the fact that I dont have the Celiac gene. Is there a difference between sensitivity genes? What the heck does HLA-DQB1*0301,0501 mean anyway????

The only thing I'm sure of with these results is that I'm not allergic to milk.

-Rachel

[emeraldskies]

This is not easy news to take, but hopefully this will help a lot of your problems. Your malabsorption rates seem very high. Mine was only 628 units. It's possible that your hyperthyroidism could have contributed to the fat in the stool. Gluten sensitivity might seem like a "lesser" diagnosis, but those with gluten sensitivity should also avoid gluten altogether because it is still capable of causing problems in the body. You could look at it like this--in both celiac disease and gluten sensitivity, gluten may harm the body. The main way they are different is that if you have celiac disease, you may get added diseases that are genetically associated with it. The reaction to gluten with gluten sensitivity is often no less severe than it is with celiac disease (sorry that is confusing. I'm having trouble concentrating). Your antibody levels are not so high, but they are still above the normal limit. Was your hyperthyroidism resolved at the time of your test? If not, you could try taking the malabsorption test again. If the results are much lower, you are probably okay. If they are still high, maybe it could be gall bladder problems or maybe you just have a severe reaction to gluten. I think some people could test negative for one of the genes, but they would be in great health, so there would be no reason for them to take the test. I don't know anything about Candida, but gluten could be responsible for most of your health problems. If you try the diet awhile and get enough vitamin supplementation, hopefully you will be on your way to better health. Good luck.

[KaitiUSA]

Well by the looks of the results, gluten is causing some severe reactions in your body. Avoid it completely.

Gluten intolerance genes indicate your body has a negative reaction to gluten and fighting it.

A celiac gene is when the gluten damages your intestines.

However, the reactions you can get can be just as severe with a gluten intolerance and celiac.

I had candida for quite some time. It can cause alot of the same symptoms too. You should not be most worried about candida just take care of it. I'm sure it will get better but it won't go away overnight.

[Rachel--24]

Thanks for the replies,

I do feel better after reading your posts. The news was hard to take because I'm not too familiar with exactly what gluten sensitivity can do to the body. I was hoping for a more definate diagnosis.

Emeraldskies....the malabsorption can't be due to hyperthyroidism. I had my thyroid "killed" with radioactive iodine more than 2 years ago. I have to take thyroid hormone replacement and my dose is not too high. I've been in normal range last 2 years.

Maybe I misunderstood some of the stuff I've read but I thought that only Celiac can cause damage to the intestine therefore why would I have malabsorption due to only gluten sensitivity?

Kaiti...were you on a special diet for the Candida or did you just take Nystatin to clear it up? I don't want to only eat meat and veggies anymore...I'm so sick of that diet and I kept getting sick anyway from non-food sources such as my lotion.

Since I've been eating sweets the past few days I havent got the typical reaction of crying spells, swelling, night sweats, weight loss, or numbness and tingling. Maybe these reactions are mainly due to gluten consumption and not sugar and carbs like I once thought.

Did anyone else test + for gluten sensitivity gene and have severe reactions and malabsorption similiar to celiacs?

-Rachel

[KaitiUSA]

There has been some debate about whether or not gluten intolerance can turn into full blown celiac if you continue to eat gluten. I think it could happen because you are pushing your body. I think that reactions can be similar between the 2.

I never followed the candida diet. I took the liquid Nystatin and it worked great for me.

[Rachel--24]

Thanks Kaiti,

I will be so happy if I don't have to follow a Candida diet anymore. I took stool tests for Candida and will get those results maybe today.

It still seems weird to me that gluten can get me so sick. Pretty much my whole diet was gluten for my whole life and I was perfectly healthy...it just came on fast...during a stressful time...the same way Graves appeared. Thats why I thought for sure it had to be celiac disease because of the autoimmune thing.

I'm still confused about these things:

1) I know a celiac reation can last weeks....can it last this long with intolerance too?

2) How can a person get malabsorption from intolerance if there's no damage to the intestine?

3) Is intolerance/sensitivity still an autoimmune thing or is it more like an allergy? (I test neg. for allergies)

4) How soon can I know if gluten is truelly my problem? Since I dont have celiac disease shouldnt I feel better fast?

thanks,

-Rachel

[KaitiUSA]

Thanks Kaiti,

I will be so happy if I don't have to follow a Candida diet anymore.  I took stool tests for Candida and will get those results maybe today.

It still seems weird to me that gluten can get me so sick.  Pretty much my whole diet was gluten for my whole life and I was perfectly healthy...it just came on fast...during a stressful time...the same way Graves appeared. Thats why I thought for sure it had to be celiac disease because of the autoimmune thing.

I'm still confused about these things:

1) I know a celiac reation can last weeks....can it last this long with intolerance too?

2) How can a person get malabsorption from intolerance if there's no damage to the intestine?

3) Is intolerance/sensitivity still an autoimmune thing or is it more like an allergy? (I test neg. for allergies)

4) How soon can I know if gluten is truelly my problem? Since I dont have celiac disease shouldnt I feel better fast?

thanks,

-Rachel

<{POST_SNAPBACK}>

1) yes with an intolerance you can get the same severity of reactions because your body is not tolerating the gluten

2) I'm not sure about this one so maybe someone can help you out more here

3)an intolerance/sensitivity is NOT an allergy. It's negative reaction to food but not an allergy or autoimmune disease.

4)Well it could be a candida and gluten problem. You could have improved with getting gluten out of your diet but the candida is preventing you from getting back to where you should be. Candida symptoms alot of the times are the same of that of celiac.

[skbird]

Hi - I just wanted to chime in, I don't have a Celiac gene and I didn't have malabsorption but I have really bad symptoms when I get any amount of gluten in me. I have also seen some other people on this board report malabsorption with no Celiac gene. What your gene results mean can be boiled down to: you have DQ1 and DQ3. DQ1 is often associated also with neurological presentations of gluten intolerance, like gluten ataxia and psychological problems, like depression, and anxiety. DQ3 is very similar to the DQ8 gene that some Celiacs have. Here are my answers:

1) I know a celiac reation can last weeks....can it last this long with intolerance too?

- Yes - my reactions can last from a week to two weeks, depending on whatever it is that these things depend on. Amount, maybe, or just how my body is doing, it seems. Sometimes I get all stomach reactions, like bad IBS and have high intolerability to a lot of foods, sometimes it comes on like bad depression, temper, fits of crying. Also sometimes joint pain, and usually migraine. Not fun.. for sure... but it helps to know it *will* go away (sometimes it's hard to remember that though!)

2) How can a person get malabsorption from intolerance if there's no damage to the intestine?

- this is something I'm wondering about. There is some small percentage of people without the two common Celiac genes who get enteropathy (damage to their intestines) and perhaps you are one of them. It can take some time to heal.

3) Is intolerance/sensitivity still an autoimmune thing or is it more like an allergy? (I test neg. for allergies?

- it's an autoimmune reaction if you have the antibodies, so in your case, yes. I was tested at EnteroLabs 5 months into my gluten free diet and was surprised to have such low results - I had an IGA of 9, which was considered negative, but since I had been gluten free for 5 months, Dr. Fine told me it likely would have been above 10 if I'd tested before the diet. My Ttg was 7, I don't know if that would have been higher or not, but probably. My casein was 6 and yes, I was relieved, too, that I didn't appear to have a dairy problem, though sometimes when I've been glutened I have to lay off it for a while. Initially, my response to my low numbers was to think, well, I don't have a problem, I'm going for pizza! But I didn't, and then about a week later I got glutened and was SO SICK! Also, my doctor validated this by saying that dietary change causing improved health was enough in his book to diagnose gluten intolerance (which is not lesser to Celiac, though it may seem that way, Celiac is just one presentation of gluten intolerance).

4) How soon can I know if gluten is truelly my problem? Since I dont have celiac disease shouldnt I feel better fast?

- I think if you have damage or at least malabsorption, it's going to take time. I felt better-ish within days, but still feel like improvement comes and goes. I have setbacks at times, when I've been glutened or just lingering feeling bad from an earlier exposure or whatever. But overall, I feel better most of the time, and sometimes when I feel sick from it I think wow, I used to feel like this all the time!

It's confusing and I wanted everything answered right away at first but found that answers come in their own time and you will understand more as you follow the diet. It's very worth it, even if it's frustrating at times. Take care and keep reading.

Stephanie

[Rachel--24]

Stephanie,

Thanks for explaining the genes to me. I was kind of lost on that. Don't know if I still really "get it" but oh well it all boils down to the same thing anyways...no gluten. Which is really ok with me. I have no problems staying gluten-free for life if it makes me feel better. I guess I'll just have to wait and see if I notice any improvements now that I've switched to all gluten-free products including make-up. I've been sick for a month now...I think wearing lotion with wheat germ oil started it and I cant seem to recover because I keep getting reactions. Just when I start to feel better I get another reaction...the last one was Wed. night and I'm still not better. If it was gluten I don't know where it came from. Since its happened so many times these last few weeks my malabsorption got way worse and I lost alot of hair, skin is pale, lots of crying and sleeping and food sensitivities get worse everytime this happens

I know the diet seems difficult to most people when they're first diagnosed but to me eating gluten-free is not hard at all. If it can give me my health back it will be the most rewarding thing I've ever done. I guess it just seems almost too good to be true...all I have to do is stay away from gluten and I'll be healthy again. We'll see.

Thanks for your answers to my questions...I've read some of your posts so I know you know your stuff...that helps alot.

-Rachel

[skbird]

Rachel - I was really confused about the gene stuff, too, at first. Kind of like I got it but not really, and then when I got my results and they weren't either of the two main genes, I was really confused and upset even, because I really wanted an answer. I really wanted to be classified or diagnosed because I guess I thought that would help me and other people understand what it all means, though intellectually I did know what it all meant. It was something emotional that I needed to fix. But after time passed, I stopped feeling that was very important. I don't know if that was acceptance at work or just the product of me going a longer time being balanced and healthy.

I still have problems - I recently went through a phase (I hope it's over!) where I seemed to be getting sick from everything I ate. But now that I seem to be through that for the most part, and understand that I do have more than just gluten to watch out for, I'm feeling better and stronger again, and that helps a lot in understanding all this.

The worst is the emotional part, because that can't be quantified, like pain. You can say, I'm running to the bathroom this many times a day, or it hurts this much on a scale of 1-10 when I eat, or I didn't sleep much last night or my pants don't fit because I"m bloated, but to say you are in tears and feeling a certain amount of anguish is very difficult. And often, it's not until that clears up that you realize it was all part of the reaction, it was real, but it wasn't real, like it would be if someone close to you died, or something really tragic happened (other than eating gluten!) I'm getting there, where I can be really depressed and sort of step outside of myself and say, wow, look, I must have eaten something that caused this reaction, and almost laugh at myself, even while I'm feeling so depressed. I usually just set myself down on the sofa or on my bed and watch some tv or something and just let it wash over me, or ride it out. At least I know sort of what's going on now, it's not just something that hits me out of the blue.

The gene stuff - I have gotten technical about it and read that the DQ3 gene I have can present at 1/10th the strength of Celiac, and so if that's what I have, 1/10th the strength of Celiac, then god have mercy on all of the real Celiac's souls. But I don't think that is quantifiable, either. Plus I have the DQ1 gene, too, which makes for a real pary. Anyway, you'll get to a point where it's second nature and you get used to riding out the bumps. Being a part of this forum is a real help, too.

Take care and know that it will get better!

Stephanie

[Rachel--24]

Stephanie,

You really described the emotional part of what I go through to a "T". Its exactly like you said...in the beginning I felt like this all the time so I didn't realize it was a reaction caused by food...just knew I wasn't myself. Even after KNOWING whats causing me to react this way its hard to rationalize while its happening. People around me will say to relax cuz its just a reaction and it will pass and intellectually I know this is true but at the time it really does feel like the end of the world to me. The best thing for me to do when the crying, anger, frusteration takes over is to sleep. I hate feeling like that cuz I'm normally a very happy active person so its hard to believe a breadcrumb can turn someones world upside down. Hopefully with this diagnosis there will be much less days like this and I'll look back and laugh at the craziness of it all.

-Rachel

[skbird]

I know it will, and just imagine how much more peaceful you'll feel then! And happier!

Just trust in that you will get there.

Feel free to email me if you have any questions.

Take care

Stephanie

[emeraldskies]

Rachel: My comments last night were not the greatest. I was so out of it from not sleeping in awhile. I should have gathered from your previous post that you were no longer having trouble with hyperthyroidism. The point I made that is applicable is that gluten sensitivity is a legitimate condition and that gluten should be avoided just as in celiac disease.

[gf4life]

I realise all of your questions have been answered, but I wanted to reiterate one thing.

You CAN have intestinal damage from gluten and not be Celiac. I get a little frustrated when people say you don't get intestinal damage from gluten intolerance. In some cases the person is celiac, but not yet full blown. In other cases they are gluten intolerant, with or without damage. Either way you can have damage to the intestines. Every person is different and for some genetically predisposed celiacs the gluten doesn't damage their intestines either, it attacks their neurological functions or other areas of the body...but it is still hurting them.

Since you do not have the classic celiac genes (DQ2 and DQ8), then according to present knowledge you would never be able to get celiac disease. The problem with this is that you do have gluten intolerance genes. At present the only lab testing routinely for these genes in the US is Enterolab. There may come a time where these genes are linked to celiac and at that point many diagnosis will have to be re-evaluated. One of my son Jacob's doctors at our children's hospital here feels that the genetic studies for Celiac Disease is far behind the times and he is not willing to say that my son is not Celiac.

In my family we have two with celiac disease genes and two with gluten intolerance genes. My husband has not been tested, but would have to have the same genes as my son Jacob in order for the kids to have the genes they have. My son Jacob has DQ3, DQ1 and he was the one with the most intestinal damage. He was borderline malabsorbtive at @300 on the fecal fat score with Enterolab(which is not too bad, but still damage. He was not terribly ill at that point and I wonder how bad it would have gotten if I had not had them tested and he stayed on gluten and got really sick. I caught it early for my kids and am glad to have done so. They have a chance at a healthier life.

God bless,

Mariann

[Rachel--24]

Emeraldskies,

Don't worry about it. I totally "got" what you were saying You were right though...if I hadnt had my hyperthyroidism corrected it could've been causing malabsorption.

Mariann,

Actually all of my questions hadn't been answered. You addressed the one that has been on my mind all day. Can intolerance cause damage or malabsorption? I don't know if your son that had the most problems has the same genes as me (still fuzzy on the whole gene thing). I guess there are no REAL answers at this time as to whether or not intolerance genes can be linked to celiac disease. I'm a person who likes to have answers to everything...I don't like to be left in the dark...so I read and read and read...but maybe I just need to let the results of the gluten-free diet answer these questions for me. If it works...what more proof do I really need? Easier said than done....I think my attitude will probably change as I start to heal and getting answers to these questions won't seem as pertinent. At this point I'm agreeing with everything you wrote. There has to be something more to this whole intolerance thing...I'm a very sick person with a malabsorption rate of 912 and no other causes found after 2 years of testing. If going gluten-free heals me then I will truelly believe there isn't much of a difference between celiac disease and Intolerance.

-Rachel

[Jnkmnky]

The gene stuff - I have gotten technical about it and read that the DQ3 gene I have can present at 1/10th the strength of Celiac, and so if that's what I have, 1/10th the strength of Celiac, then god have mercy on all of the real Celiac's souls.

Stephanie

<{POST_SNAPBACK}>

That made me laugh Nice picture, Stephanie. No one's going to believe you get depressed with a smile like that always attached to your posts!

I would recommend the book Dangerous Grains to you, Rachel. It tells the tale of Gluten sensitivity on through Celiac Disease in a very readable format. They heap all the medical hooey at the back of the book so that the laymen in the world can read it and get something from it. I made the entire family gluten free after reading it. Well, the non-celiacs still eat gluten, but I purchase gluten free for the house. (except the gluten full stuff my husband wants. Well, we're gluten low, at least.)

[gf4life]

You have similar genes.

My son has HLA-DQB1*0502, 0301. His is translated as DQ1 (subtype 5) and DQ3 (subtype 7).

You have HLA-DQB1*0301, 0501. Yours would be translated as DQ3 (subtype 7) and DQ1 (subtype 5) also.

The gluten intolerance genes are:

any HLA-DQB1*03xx [known as HLA-DQ3 (except 0302 ~this is the celiac gene known as DQ8, and is also known as DQ3, subtype 8)]

any HLA-DQB1*05xx [known as HLA-DQ1]

Here is what Dr. Fine says about the genes:

Why are gene results so complicated, and which genes predispose to gluten sensitivity/celiac sprue?

Gene tests for gluten sensitivity, and other immune reactions are HLA (human leukocyte antigen), specifically HLA-DQ, and even more specifically, HLA-DQB1. The nomenclature for reporting HLA gene results has evolved over the last two decades as technology has advanced. Even though the latest technology (and the one we employ at EnteroLab for gene testing) involves sophisticated molecular analysis of the DNA itself, the commonly used terminology for these genes in the celiac literature (lay and medical) reflects past, less specific, blood cell-based (serologic) antigenic methodology. Thus, we report this older "serologic" type (represented by the numbers 1-4, e.g., DQ1, DQ2, DQ3, or DQ4), in addition to the integeric subtypes of these oldest integeric types (DQ5 or DQ6 as subtypes of DQ1; and DQ7, DQ8, and DQ9 as subtypes of DQ3). The molecular nomenclature employs 4 or more integers accounting together for a molecular allele indicated by the formula 0yxx, where y is 2 for DQ2, 3 for any subtype of DQ3, 4 for DQ4, 5 for DQ5, or 6 for DQ6. The x's (which commonly are indicated by 2 more numbers but can be subtyped further with more sophisticated DNA employed methods) are other numbers indicating the more specific sub-subtypes of DQ2, DQ3 (beyond 7, 8, and 9), DQ4, DQ5, and DQ6. It should be noted that although the older serologic nomenclature is less specific in the sense of defining fewer different types, in some ways it is the best expression of these genes because it is the protein structure on the cells (as determined by the serologic typing) that determines the gene's biologic action such that genes with the same serologic type function biologically almost identically. Thus, HLA-DQ3 subtype 8 (one of the main celiac genes) acts almost identically in the body as HLA-DQ3 subtype 7, 9, or other DQ3 sub-subtypes. Having said all this, it should be reiterated that gluten sensitivity underlies the development of celiac sprue. In this regard, it seems that in having DQ2 or DQ3 subtype 8 (or simply DQ8) are the two main HLA-DQ genes that account for the villous atrophy accompanying gluten sensitivity (in America, 90% of celiacs have DQ2 [a more Northern European Caucasian gene], and 9% have DQ8 [a more southern European/Mediterranean Caucasian gene], with only 1% or less usually having DQ1 or DQ3). However, it seems for gluten sensitivity to result in celiac sprue (i.e., result in villous atrophy of small intestine), it requires at least 2 other genes also. Thus, not everyone with DQ2 or DQ8 get the villous atrophy of celiac disease. However, my hypothesis is that everyone with these genes will present gluten to the immune system for reaction, i.e., will be gluten sensitive. My and other published research has shown that DQ1 and DQ3 also predispose to gluten sensitivity, and certain gluten-related diseases (microscopic colitis for DQ1,3 in my research and gluten ataxia for DQ1 by another researcher). And according to my more recent research, when DQ1,1 or DQ3,3 are present together, the reactions are even stronger than having one of these genes alone (like DQ2,2, DQ2,8, or DQ8,8 can portend a more severe form of celiac disease).

Is it possible to tell which parent gave me the celiac or gluten sensitivity gene?

Everyone has two copies (or alleles as they are called scientifically) of every gene in the body; one from mother and one from father. The only way to know if a parent definitely has a gluten sensitive or celiac gene without testing them directly, is if a child has two such genes (having received one from mother and one from father). If only one gluten sensitive or celiac allele is present in a child, there is no way to know if it came from mom or dad. One gene is enough, however, to get clinically significant gluten sensitivity or celiac disease, and from published research, two copies yields an even stronger reaction and hence, potentially more severe gluten-related complications.

If I do not have a gluten sensitive or celiac gene, does that mean my parents/siblings/children do not?

Because everyone has two copies (alleles) of every gene, but a parent only gives one of these genes to each of their offspring (distributed randomly between a parent's two alleles), even if a child does not have a gluten sensitive or celiac gene, one or both parents could have one of these predisposing genes as their other allele. Hence, a person without a predisposing gene could still have parents or siblings with these genes. To be sure, each family individual must be tested to know. (The only certainty with respect to genetic testing is that if a person is found to have two predisposing genes, then every one of his/her children and both parents will have at least one copy of these genes, which is enough to get clinically significant gluten sensitivity or even celiac disease.) Because a child gets one allele from each of their parents, even though a particular person does not have a gluten sensitive gene, their children have a good chance of getting one from the other parent since these genes are very common (see next paragraph).

How common are the gluten sensitivity and celiac genes?

DQ2 is present in 31% of the general American population. DQ8 (without DQ2) is present in another 12%. Thus, the main celiac genes are present in 43% of Americans. Include DQ1 (without DQ2 or DQ8), which is present in another 38%, yields the fact that at least 81% of America is genetically predisposed to gluten sensitivity. (Of those with at least one DQ1 allele, 46% have DQ1,7, 42% have DQ1,1, 11% have DQ1,4, and 1% have DQ1,9.) Of the remaining 19%, most have DQ7,7 (an allele almost identical in structure to DQ2,2, the most celiac-predisposing of genetic combinations) which in our laboratory experience is associated with strikingly high antigliadin antibody titers in many such people. Thus, it is really only those with DQ4,4 that have never been shown to have a genetic predisposition to gluten sensitivity, and this gene combination is very rare in America (but not necessarily as rare in Sub-Saharan Africa or Asia where the majority of the inhabitants are not only racially different from Caucasians, but they rarely eat gluten-containing grains, and hence, gluten-induced disease is rare). Thus, based on these data, almost all Americans, especially those descending from Europe (including Mexico and other Latin states because of the Spanish influence), the Middle East, the Near East (including India), and Russia, are genetically predisposed to gluten sensitivity. (That is why we are here doing what we do!) But be aware that if a person of any race has a gluten sensitive gene, and eats gluten, they can become gluten sensitive.

[Rachel--24]

I would recommend the book Dangerous Grains to you, Rachel.

I actually looked for that book yesterday but didn't find it...ended up buying The Gluten Free Bible. It doesn't mention anything about intolerance though (or not that I can tell so far). It seems pretty much based on living life after the Celiac diagnosis. I'll try to order Dangerous Grains online.

Thanks,

-Rachel

[KaitiUSA]

Rachel-Do watch out for the gluten free bible because it does have quite a bit of inaccuracies regarding products and there are some approaches i don't agree with. It is ok for experienced celiacs who may know a bit more but not a book that I would recommend for new celiacs.

[Rachel--24]

Rachel-Do watch out for the gluten free bible because it does have quite a bit of inaccuracies regarding products and there are some approaches i don't agree with. It is ok for experienced celiacs who may know a bit more but not a book that I would recommend for new celiacs.

<{POST_SNAPBACK}>

Thanks for the heads up Kaiti,

I've read some older posts where you and others are not too fond of this book so it wasnt my first choice but it was the only book they had other than recipe books.

[KaitiUSA]

Thanks for the heads up Kaiti,

I've read some older posts where you and others are not too fond of this book so it wasnt my first choice but it was the only book they had other than recipe books.

<{POST_SNAPBACK}>

I'm sure it does have some good info in it so I'm sure there are things to learn. Just keep that in mind

[Rachel--24]

Mariann,

So if I'm understanding what Dr. Fine is saying then the HLA-DQ3 subtype7,9 or other DQ3 subtypes wreak the same havoc on the body as one of the Celiac genes (HLA-DQ3 subtype 8) without the villous atrophy? Am I understanding correctly? Could my sensitivity gene really be causing so much harm to my body?

-Rachel

[Jnkmnky]

I went to my local bookstore and asked them to order it for me. It's at amazon if you choose to get it. It's very enlightening.

[gf4life]

Mariann,

So if I'm understanding what Dr. Fine is saying then the HLA-DQ3 subtype7,9 or other DQ3 subtypes wreak the same havoc on the body as one of the Celiac genes (HLA-DQ3 subtype 8) without the villous atrophy? Am I understanding correctly? Could my sensitivity gene really be causing so much harm to my body?

-Rachel

<{POST_SNAPBACK}>

As far as I can tell, and from my own experience, YES.

I also highly recommend Dangerous Grains. I buy most books from amazon .com, since I don't have a "local" bookstore and I like that I get free shipping (on orders over $25.00). Their selection of Celiac/gluten intolerance/gluten free lifestyle books and cookbooks is great.

God bless,

Mariann

[Nevadan]

You might want to check a post I just did on the Post Diagnosis/Recovery Board in response to a topic started today by janu re Enterolab results.

I'm also a non-celiac gluten sensitive person.

I definitely recommend "Dangerous Grains" and its available at Amazon for about $12.

George