Enterolab Results...

[Rachel--24]

I also highly recommend Dangerous Grains. 

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Well thats two recommendations for Dangerous Grains so I'm definately gonna go to Amazon and order it. In case you havent noticed I like to educate myself

Seems like theres no end to the questions that pop up in my head

-Rachel

[Rachel--24]

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

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Wow...thats 3 recommendations now. This is gonna be a good read!

George I already checked out your post

-Rachel

[gf4life]

Another book I highly recommend is Wheat Free, Worry Free by Danna Korn. Both this and Dangerous Grains are only $10.17 each at amazon .com (I just checked )

And for cookbooks I recommend the Incredible Edible Gluten Free Food for Kids by Sheri Sanderson. This is not just for kids, but easy to make, tasty recipes that are also kid friendly. This $12.89 at Amzon and worth way more than that to me!!

[Rachel--24]

Another book I highly recommend is Wheat Free, Worry Free by Danna Korn.  Both this and Dangerous Grains are only $10.17 each at amazon .com (I just checked    )

And for cookbooks I recommend the Incredible Edible Gluten Free Food for Kids by Sheri Sanderson.  This is not just for kids, but easy to make, tasty recipes that are also kid friendly.  This $12.89 at Amzon and worth way more than that to me!!

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Thanks,

Thats exactly the kind of cookbook I need. I am no Martha Stewart in the kitchen so that should work for me. The only thing I cooked at home before this whole gluten thing was mac & cheese.

[Guest nini]

and you can still make mac and cheese! Buy Tinkyada pasta and Velveeta!!!! I made it last night for dinner and even non gluten-free hubby ate 2 bowls!

[Rachel--24]

and you can still make mac and cheese! Buy Tinkyada pasta and Velveeta!!!! I made it last night for dinner and even non gluten-free hubby ate 2 bowls!

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I love Tinkyada pasta! I was eating it last year and it was just as good as any pasta I've ever had. I went back to my mac & cheese after my blood test came back negative though. I went back to all my old foods...got sicker...just about died....this time around I think I'll stick to the Tinkyada I remember reading somewhere that the cheese packet that comes with regular mac & cheese is gluten-free...is this true? If its true the Tinkyada mac with kraft cheese sauce should taste just like the real thing.

[gf4life]

It is true, but what are you going to do with all that pasta? And there is a slight risk of contamination from the outside of the cheese packet, since it is sitting in there with the pasta for who knows how long!

Some people have found the Kraft cheese powder in a can. If you can find that it would work just the same.

I personally don't like the powdered cheese mix, but I love the Velveeta mac n'cheese.

I put a bit of milk in with it when I make it so it is not such a thick sauce.

God bless,

Mariann

[Rachel--24]

I still have boxes of mac & cheese in my kitchen (I'll admit I sometimes stare at them longingly). I figured if I could use the sauce then at least they wouldn't be wasted. Its not worth getting contaminated though. I've never seen it in a can...maybe we don't have it in my area. I'll give the velveeta a try. I had oreo cookies in my fridge for the past 3 months even though I knew I couldn't eat them. I think it made me feel more "normal" or something just to have them there. Well I finally threw them out yesterday. I got Enjoy Life soft baked chocolate cookies and they were sooo good...I'm not sad at all about losing the oreos now

-Rachel

[Guest nini]

I was very sad about losing my Oreos until I found Midel's sandwich cookies... I make homemade cookies and cream ice cream with them!

I've found the can of the Mac and Cheese powder at Wal Mart... And yes I used to be addicted to the stuff, but now, I swear I like Velveeta sooooo much better!

[Rachel--24]

Thanks Nini....I'll be looking for those sandwich cookies next

The good news is I can eat all this new stuff without getting reactions like I get when I eat "regular" food. But the bad news is that now that I'm adding foods my stomach is very bloated and hurting I know I have bad malabsorption and when I eat I gain fluid retention...sometimes I can actually FEEL my tissues filling up with fluid. Everything gets alot worse after I've had gluten and then takes a looong time to get better. I'm wondering if I have leaky gut or something. Maybe I shouldnt add too many foods so quickly and give my gut a chance to heal. I'm just tired of meat and veggies so I got a little overzealous the past few days. It feels sooo good to be able to eat sandwiches and cookies without getting disoriented and depressed afterward though

-Rachel

[skbird]

I've read a few testimonials about cabbage soup being really healing on the gut. Take a cabbage and chop it finely, toss into a big pot and add enough water to cover, add onions, salt, pepper, other spices if you want (I add carrots and chicken broth) and simmer for an hour. I'm not very exact with recipes but this one is pretty easy to wing. Taste it and add more seasonings if you'd like. Oh, garlic is good, too.

I hope you are feeling better today, just having more knowledge. It's scary at first, as it all sinks in, but this is a disease we can control with diet, and not need meds so it's much more manageable than others. It's hard about Oreos - I agree totally. The ones that are made by Glutano (or Glutino, can't remember which, both are gluten-free companies) are pretty good, too. Small package - like many gluten free things, for whatever reason. I miss cookies and cream ice cream so I'm thinking of breaking some of those up and adding them to vanilla and making my own.

Stephanie

[Rachel--24]

I hope you are feeling better today, just having more knowledge. It's scary at first, as it all sinks in, but this is a disease we can control with diet, and not need meds so it's much more manageable than others.

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Thanks Stephanie,

I do feel better today I was a little freaked out yesterday....not really knowing too much about gluten intolerance. I had mainly been reading about Celiac so I was thinking intolerance was kind of a non-diagnosis I guess. Like it couldn't really be making me this sick. I have a better understanding now thanks to everyone on this board

Thanks for the cabbage soup recipe...I'll try it out.

BTW...ever since you changed your avatar I've been thinking you look really familiar. Did you always live in Chico area? I was wondering if you went to St. Francis High School...there was a girl in my class named Stephanie...looks alot like you in that pic. Just curious.

Thanks again for your help yesterday...and yeah...why does all the gluten-free stuff come in such small packages? The prices sure aren't small. Yesterday I opened a box of Enjoy Life granola cereal...it was a regular size box but inside was a tiny bag of cereal...probably enough for 2 bowls. What the heck??? I was laughing about that. I'm gonna have to start shaking the boxes to make sure theres really some food in there before I buy it...sheesh.

[skbird]

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! 

Jnkmnky - hahahaha! I was thinking about that after I posted the depression bit, and what's really funny is that picture is me *before* going gluten free, surprisingly! I thought, "no one's going to believe me when I say I get really depressed!" oh well, nothing wrong with smiling about it all, right?

Stephanie

[skbird]

Hi Rachel - I'm from Chico, moved away a couple of times, but keep coming back. No St. Francis for me... It's funny, I have two or three friends who think I'm a dead ringer for a Stephanie they know. This Stephanie must really get out!

And yeah, I changed my avitar - the only one was getting on my nerves. And then now this one is really big - don't know if I can take it either, but if it makes someone laugh or even smile, I guess it's ok...

Stephanie

[deb.h.]

Thought that since there were people onthis thread that seem to know quite a bit about the gene tests that if I gave my results that someone could tell me what they mean.

Myself

HLA-DQB1*0303, 0503

my daughters

1. Molecular analysis: HLA-DQB1*0503, 0602

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

2. HLA-DQB1*0501, 0503

3. HLA-DQB1*0303, 0501

I didn't get the dad tested because Iknow that he has two genes that he has passed on to the girls and they are whichever ones are missing here. I really don't know what these numbers means other than we all have two gluten sensitive genes but i had never heard that the symptoms ranged with the type of genes that you have like the neurological stuff that has been talked about. i would love to know if mine or any of my girls have these combinations that you have talked about. Deb

[skbird]

Hi Deb -

Well, you must get the gene stuff pretty well if you know you can determine your husband's genes by the process of elimination. That's a step beyond the average.

Anyway, it looks like you guys all have one DQ1, and double at that (for you!). DQ1 is the one that has been linked to neurological issues, as well as microscopic colitis and general gluten sensitivity. None are of the two classic Celiac genes but they are all indicators of sensitivity. So if any or all of you are symptomatic, it's a good idea to follow the diet. I have one of those genes (DQ1, 6, or DQ6 for short) and have a lot of emotional/mood issues connected with my ingestion of gluten.

DQ3 is the other one (0303), or DQ9 for short. I have this specific gene myself. This one is very similar to the second most common Celiac gene (0302, or DQ8). So this one can bring on all sorts of Celiac symptoms.

If you have more than one gene that specifies gluten sensitivity then you are doubly likely to have symptoms. But if you don't, then there might not be a problem - not all genes are activated. If you see symptoms though and you guys are not on the diet, you should get blood tests before going on the diet so you can have a little more "proof" for your doctor, etc.

Funny, I have the gene your husband has and a gene you have. I could be your daughter!

Take care!

Stephanie

[deb.h.]

The only reason i know about my husband and even that we all have two genes is that I emailed and asked because I saw all these different number combinations in the girls genes and I was confused because i really thought only I possibly had the genes. i got the girls tested first. i know my hubby has two genes but i don't know what they are. i don't know how to figure that out.

i went gluten free two and a half years ago waiting to get a biopsy with a ttg blood test at 19 (more than 20 was a positive) by this time I had gluten loaded for ten days and was so sick and full of what I thought was excema(that is what the dermatoligist said anyway) on my face. ( now wondering if it was the start of D.H.) my psoriasis was horrible and i had thyroid, digestive and muscular problems. I had been diagnosed with fibromyalgia. I thought everyone was full of you know what. That blood result was enough for me. I went gluten free and amazingly everything got betterslowly over time. OPh yeah i was having severe bouts of anxiety that lasted a couple of years. Now i seem to be good. i still have pretty bad intestinal stuff that comes from possibly eating gluten by accident or other foods and preservatives that i am sensitive to. A year later the doctor.s office called to say I was in for my endoscopy. i thoughtit was pintless at that time so I cancelled.

I got my older daghter tested two years ago by Enterolab( the first one onthe list) and her results all came back at 8 and 9,s and 350 on the malabsorption. I decided not to do anything at the time because she wasn't exhibitiing any substantial symtoms to warrent the diet.

I jsut got my other two girls tested they are 10 and 5, my older being 12. and they came back postive

10 year old

Gluten Sensitivity Testing

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

Fecal Antitissue Transglutaminase IgA 17 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 102 Units (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0501, 0503

Food Sensitivity Testing

Fecal anti-casein (cow's milk) IgA antibody 14 Units (Normal Range

<10 Units)

and the 5 year old

Gluten Sensitivity Testing

Fecal Antigliadin IgA 27 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 22 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 27 Units (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0303, 0501

Food Sensitivity Testing

Fecal anti-casein (cow's milk) IgA antibody 27 Units (Normal Range

<10 Units)

You said that i have the genes that can cause the neurological stuff ( which by the way my family would wholeheartedly agree) can you see if my my kids do or not.

I retested my older daughter after these results and she is good

luten Sensitivity Testing

Fecal Antigliadin IgA 6 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 6 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 197 Units (Normal Range < 300 Units)

Food Sensitivity Testing

Fecal anti-casein (cow's milk) IgA antibody 5 Units (Normal Range

<10 Units)

so now I am sending off a kit done by my husband. I didn't do the gene test because I already knew from the person at Enterolabs that he had the genes. I should get results back in a few weeks. My gut tells me they will be positve but i hope for his sake they are not.

can you tell what his genes are by looking at the numbers?

The girls will be starting their gluten free diets in September. thankfully they took it pretty well.

[skbird]

Yes, his would be 0602 and 0501. (both DQ1, or also known as DQ5 and DQ6, though that part isn't as important).

Wow, you have been very thorough. Isn't it a bummer what we've all gone though to get to this place where we are trying to be healthy?

When I got mine done at Enterolabs I had been gluten free for 5 months already and my Iga was only 9 though I'm sure it was above 9 before I went gluten free. I was only at 67 in fecal fat, also. I had the Ttg done and it was 7, now I have no idea if it would have been higher, but can speculate that it *probably* was because it was a reaction to the gluten as well. Fortunately, my casein only 6, and I was eating a ton of dairy at the time so that is not a problem for me.

In a way, if your husband also reacts, then it will be easier because your entire family can go without and then there will not be cross-contamination issues. That would make it simpler for all of you.

Take care -

Stephanie

[deb.h.]

I also got my tests done at enterolab and these were my results

Gluten Sensitivity Testing

Fecal Antigliadin IgA 9 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 8 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 125 Units (Normal Range < 300 Units)

HLA-DQ Gene Molecular analysis: HLA-DQB1*0303, 0503

Food Sensitivity Testing

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

<10 Units)

Fecal anti-ovalbumin (chicken egg) IgA antibody 5 Units (Normal

Range <10 Units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 6 Units (Normal

Range <10 Units)

I have been gluten free and dairy free for almost three years but lately I know Ihave had a lot of dairy(no where near as much as the average person) but a lot for me who never has it. Because mynumbers in gluten are in the upper limits of normal i suspect that I have been getting gluten in unknowingly.

I redid the blood test ttg and the number was down to 7 from 19 2 1/2 years ago.

I have no idea where my numbers were then but I know in my heart and by my symptoms that they were probably high.

I feel the same way about my husband being gluten intolerant. I could see the blessing in it if he were. there is also alot of stomach and bowel cancer and lactose problems on his side and this would explain alot of it.

So if we each had two genes does that mean that each of our parents has passed down a gene to us. can both these genes come from one parent or does it have to be two parents since we each have two genes?

[Rachel--24]

So if we each had two genes does that mean that each of our parents has passed down a gene to us. can both these genes come from one parent or does it have to be two parents since we each have two genes?

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This is the explanation that came with my results:

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.

Don't know if that helps. Maybe Stephanie can elaborate...she seems to be the gene *expert* around here.

[skbird]

Hey, Rachel - you did all right. If you have two gluten sensitive genes, then you got one from each parent. So I know both of my parents have one each, as well.

What confuses me on this issue is I don't believe I've seen *anyone* post they have only one gluten sensitive gene. Official Celiac, yes, but not gluten sensitive (there are a total of four - DQ1, DQ2, DQ3 and DQ8, with 2 and 8 being specific to Celiac, and with DQ3 and 8 being subtypes from the same gene, HLA-DQB1*03XX). I'm not sure why that is, or if I have just missed something along the way, reading posts here.

It's confusing and informative, but basically, if you have symptoms, and they resolve through diet, then you are in good shape following it.

Please don't let this stuff confuse you - the proof is in the gluten free diet...

Stephanie

[deb.h.]

just got more results back from the lab and my youngest is postive for egg and yeast sensitivity. does anyone know if the dairy,egg and yeast intolerances are a lifetime thing or can I eventually introduce them back inot the diet. what is the difference betwen gluten and the others?

Gosh my poor kid and poor me for having to cook for her. Feeling sorry for us now but i will get over it shortly. I guess i ahve to tell her now. she was the one that took it the hardest.

[Rachel--24]

just got more results back from  the lab and my youngest is postive for egg and yeast sensitivity. does anyone know if the dairy,egg and yeast intolerances are a lifetime thing or can I eventually introduce them back inot the diet. what is the difference betwen gluten and the others?

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I'm wondering about this too. Why is gluten considered lifelong...compared to other foods with elevated antibodies?

[deb.h.]

I wrote an email asking a bunch of questions about the other intolerances and what they as far as life long abstinence or not. i will post the answer when I get it.

[deb.h.]

here is the response to all my questions from Phyllis at Enterolab

Dear Debbie,

I will answer all of your questions in this one email, if you don't mind.

The yeast your daughter needs to avoid is anything dietary or found in supplements, just like gluten. The best thing to do is read, read, read those ingredient labels. The Ovalbumin protein is found in the egg white, but I cannot say how much might transfer from the white to the yolk in cooking or when separating. It is best to avoid them when possible. All of the foods to which one shows a sensitivity will act just like gluten. As long as the foods are not being consumed the antibodies will not produce, but once you start eating them again antibody production will begin again. It could be slower or faster depending on each individual, but some people get symptoms right away in cases like this and others do not. It really is a "for life" kind of thing.

I hope I have answered your questions sufficiently, but if you need anything else, please let me know.

Most sincerely,

Phyllis Zermeno, RN, BSN

Clinical Manager, EnteroLab

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This makes sense to me now. So is it then the antibodies that do the damge to the body? anybody know?