Enterolab Results

[flampton]

Hello all,

I decided to go with Enterolab for a confirmation of what I knew to be true. I had made an appt with a gastroenterologist early february but couldn't get in for like forever, March 28th. I wasn't planning on staying on gluten for that long so Enterolab to the rescue.

Well...

Antigliadin IgA was 18 units

Antitissue transglutaminase was 11 units

and fecal fat of 365

with genes HLA-DQB1*201 and 0603

so that is a Celiac with a gluten sensitive I think

and casein was 13 units

This is good, makes me happy, and sad that I wasted a lot of my time trying to get better through allopaths and alternative docs. And reading tons and tons of books that promised the world but failed to deliver.

I want to thank Christmas desserts(and the pain they caused) for finally getting me to sit down and figure this out using common sense.

I now have to decide whether to go through with the gastroenterologist appt. Basically it would be to get my relatives to get tested. They would not unless a doctor "officially" diagnosed me. Funny too because I'm a scientist. But they know all the other "weird" stuff that I've tried so well to them this is just another weird thing. But a gluten challenge will suck!!!

Sorry this was long and thanks for reading

Eric

[gf4life]

Hi Eric,

I know it is hard to think about being happy with positive results, but I know exactly how you feel. I went with Enterolab also, but I had already gone to 3 GI docs, and countless other doctors in my life. I already KNEW that gluten was my problem, but I needed confirmation. I also needed my kids tested and they were not sick enough for doctors to even consider Celiac testing yet. I took my Enterolab results in to our PCP doctor's office and the PA ordered blood tests for them. He admitted to not knowing very much about Celiac, but I think that was to my advantage. Other doctors might have brushed me off. When my kids came back positive on IGG antibodies, we were given a referral to the Pediatric GI for them. It took months to get into the office, and I ended up getting them tested through Enterolab, too.

It sounds like by family you mean parents, siblings, etc.? Not your own kids, right? Because you could get your own children tested, but the others would have to go for testing themselves. I have 6 siblings and 1 parent still living. My mom was probably the one to give me the DQ2 gene. She was always sick and died at 44 years old. My dad hates doctors and wouldn't admit to being sick unless he was dying! Most of my siblings have health issues/GI problems that are most likely gluten related, but only my older sister has tried to get tested. Of course her doctors office ordered the wrong tests TWICE and she gave up trying because she says there is no way she would ever stick to the diet anyhow. Well, I'm just trying to tell you that there is no way to force them to be tested. Even if they believe you about your test results, and even if you had an official diagnosis the decision is up to them...Over time they will see how much healthier you are and that is the best way to convince them that it isn't some quacky idea that you came up with.

God bless,

Mariann

[tiffjake]

I just want to second that there is no way to get them to get tested if they don't WANT to. My fathers mother died from complications of non-tropical spue (they didn't even know she had it until she had stomach cancer and holes in her intestines!). When he told me that, while I was dealing with my health, I freaked out on him. I told him that I have it (based on an Lame Advertisement test, and EnteroLab test, no *offical* test or biopsy, I was gluten free after the enterolab test and didn't want to go back for a biopsy...). He has not been tested, and does not want to. Neither does my sister. I don't want to say that they don't care, but this is what I think:

You know that saying "Things don't change until the pain is being the same is greater than the pain of change"

Well, for us here, the pain of staying the same was too much to bare! But they have seen the pain of change, watching me go gluten free, and what that means to go out to eat and at the holidays. No one wants to do that, unless it is better than what they are already going through. My dads and sisters symptoms are not as "bad" to them.....though we all know what going untreated can do......the will not do it "for me" but will "wait and see" they say. I have even offered to pay for the enterolab test for each of them, and they still won't budge. Just wanted to share that with you. It is a sore topic with my family. I watch them poison themselves every holiday and family get together, but if I bring up gluten, the conversation just stops. I wanted to do something, for my own concious (sp?). So I made a packet of info from this website, the mayo clinic site, sever testing options, and told them that I would pay for an enterolab test if they couldn't afford it. I made 15 copies of that packet (in color, at office depot, about 115.00) and mailed them to all of my fathers relatives that I had addresses for. Now I can sleep at night knowing that I told them. But I will not beat myself up about wanting them to get tested. I can't MAKE them change their lives....

[Nancym]

Testing your own children, sure. But expecting your relatives to get tested. Don't count on it. I got tested and confirmation. Sent email to all my siblings and warned them they might potentially have this too. I don't think any of them took it seriously. Meanwhile, I see their kids suffering too. Very, very sad they're not taking it seriously.

Funny thing is, my brother is a producer of a news show and recently his station did a segment on Celiac disease.

[Guest nini]

my family refuses to get tested. I've repeatedly sent out e-mails and made phone calls requesting that they at least discuss it with their Dr.s, but they won't. My mom and my sister are the ones that frustrate me the most because I just know that the health issues they have, have got to be related. But they would rather keep popping pills for them because changing their diets requires too much effort.

[CMCM]

My brothers and sister are totally resistant to the idea of testing. When my gene test came back with the celiac gene (expected, since my mom is celiac) and a second, gluten sensitive gene...now THAT was a huge surprise. My dad died in 1989 (cancer....bladder!!) and we had no idea at all. However, in retrospect, my mom can now see the connections (after she read Dangerous Grains!!) with my dad's health history....high cholesterol, high BP, overweight, got Diabetes 2 at around age 60, he was strangly exhausted a lot of the time with no reason, various minor digestive upsets, headaches, lots of respiratory stuff all the time, on and on. Even though my mom was diagnosed finally in 1969, it never in a million years occurred to them to suspect my dad might also have it because he was a bit overweight and just did not have the same sick symptoms my mom did, and of course, all that existed then was the classic, wasting profile. It was just lack of knowledge and available information of the era.

So I get diagnosed, I have 2 genes, and the chance my siblings also have at least one gene is very very high. Yet they take the same attitude..."we don't have symptoms, we're OK, we couldn't possibly have it."

They don't even want to know. At the very least they should get gene tested...just to see! My mom intends to get gene tested just to see what her 2nd gene is. And thru my brothers and sisters it would be interesting to see what pairs of genes they end up with...which might help us learn what my dad's 2nd gene was, besides the gluten sensitive one he probably gave me. But you never know...my mom could have the same 2 types of genes I have, and she could actually have given me the gluten sensitive one and my dad could have had a celiac gene and that one was from him. Who knows? But testing us all might clarify it.

Since I have 2 genes, I KNOW my 2 kids have at least one of them. I intend to test both of them, and thru that testing we'll learn about my husband and what he contributed! I even have my suspicions about him...he's of Irish descent, he has his issues which fit the profile, his mom has IBS, headaches, psoriasis, high BP and other issues dating back to her hysterectomy and I really think she has it, but of course she won't listen to anyone about anything and would never agree to give up grains. But I can at least test my kids, and later my husband too.

I'm really grateful Enterolab exists and I can just bypass the clueless doctors in getting to the bottom of all this. It's somewhat expensive, but really a lot cheaper than the doctor route (for me, at least). Plus, by doing the Enterolab testing the insurance co's don't know about it and can't penalize me with higher rates.

[Guest Robbin]

I am having the same problems with my relatives. Especially with my son who is now 21 and type 1 diabetic. He refuses to listen to me and while one part of me understands why, with the diabetes issues-the mom side of me is in "blind terror" thinking of his future health. What is scary is that they will have to reach the lowest, sickest point in their life to wake up to the possibility. All we can do is give them the facts and pray/hope they listen. Some people are just that stubborn. ( I also have to thank Christmas pastry binges for the extreme sickness that left me reeling. Every year, from Thanksgiving on to Christmas, I would be sick. Now I know it wasn't fibromyalgia, from stress, a seasonal virus, or my aunt's cooking! Christmas cookies, pies, cakes, puddings, stuffing. It's a wonder anyone lives through that! )

[flampton]

Thanks everyone for your replies!!

I don't have kids yet, So it will be convincing the parents and my brother, and then I guess the whole extended spectrum. Of course it would make more sense if my parents got tested and then they would be able to see which family has the DQ2, though my other gene is also linked to gluten sensitivity.

But I will probably run into a brick wall with them also that would make a gluten challenge stupid to do. It would lead to a month of pain and then if positive it would lead to higher insurance down the road. Doesn't sound like a very good proposition.

I still have plenty of time to think about it. I'd like to pursue bone density testing without a celiac diagnosis but I'm a 30 year old male so this testing is not likely to be approved.

thank you again

Eric

[CMCM]

Thanks everyone for your replies!!

I don't have kids yet, So it will be convincing the parents and my brother, and then I guess the whole extended spectrum. Of course it would make more sense if my parents got tested and then they would be able to see which family has the DQ2, though my other gene is also linked to gluten sensitivity.

But I will probably run into a brick wall with them also that would make a gluten challenge stupid to do. It would lead to a month of pain and then if positive it would lead to higher insurance down the road. Doesn't sound like a very good proposition.

I still have plenty of time to think about it. I'd like to pursue bone density testing without a celiac diagnosis but I'm a 30 year old male so this testing is not likely to be approved.

thank you again

Eric

You could mention to your family members that they could wait to get their diagnosis until the point where they are diagnosed for, oh, something like rheumatoid arthritis, cancer....lots of ugly things out there that come out of ignoring gluten/celiac connections.

[heli]

I love enterolab. I had antibody testing and fecal fat which were all bad. I also had my 2 daughters tested. One was very sick for 10 years and carries my DQ2. I just ordered the DNA on the younger daughter who also had antibodies to gluten and malabsorption. I finally talked my older brother into DNA, and I talked my Mom into DNA. My Dad died a while back. While he was sick, they accidentally ordered a gluten panel and his IgA was elevated. They never diagnosed him but I am convinced the celiac intestinal problems played a big part - I got the DQ2 from him. One brother refuses to agree to any testing because he is aftaid his DNA will come up in the crime lab! He's just joking but it's his way of saying no way.

I guess I am fortunate that my family is just happy to see me well. After my brother's DNA comes back I hope his adult daughters will see the light of being tested since they both have various celiac issues. it is a mission trying to help one's family.

[CMCM]

I love enterolab. I had antibody testing and fecal fat which were all bad. I also had my 2 daughters tested. One was very sick for 10 years and carries my DQ2. I just ordered the DNA on the younger daughter who also had antibodies to gluten and malabsorption. I finally talked my older brother into DNA, and I talked my Mom into DNA. My Dad died a while back. While he was sick, they accidentally ordered a gluten panel and his IgA was elevated. They never diagnosed him but I am convinced the celiac intestinal problems played a big part - I got the DQ2 from him. One brother refuses to agree to any testing because he is aftaid his DNA will come up in the crime lab! He's just joking but it's his way of saying no way.

I guess I am fortunate that my family is just happy to see me well. After my brother's DNA comes back I hope his adult daughters will see the light of being tested since they both have various celiac issues. it is a mission trying to help one's family.

I agree about the mission! My dad died in 1989, but thru testing of my mom and 3 siblings we might figure out which genes he probably contributed. And since most likely gave me the gluten sensitive gene, my mom (who most likely gave me the celiac gene, since she has it) we have to re-access my dad's health and what killed him, and we wonder how much of it could directly be linked to this. Some of it looks real clear now, where it was hard to understand before because my dad was basically a healthy eater and he didn't smoke or drink.

After all, there are only 4 possible combinations from your 2 parents, so testing all siblings and your mom can show a lot when there are several family members to be tested. Ultimately, I believe education is the key and I'll just keep hammering away at them with everything I've learned (and continue to learn) about celiac disease and gluten sensitivity.