posted
I had very good luck testing with Metametrix lab. Although it is not cheap, I have had other blood labs drawn saying I did not have celiac.
My Metametrix testing was well worth it, because it showed nutritional status and I turned our pos. for gliadin.(celiac) and Malnutrition- shows where you are lacking.
Also they do antibiotic resistance testing, bacteria testing etc..etc.. Collecting samples are not exactly fun, but it was the best 300.00 I ever spent on testing.
My results were full of valuable information.
Posts: 151 | From south east | Registered: May 2010
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posted
James--according to the GI who did all of my testing, the only 100% certain way to know gluten intolerance is by elimination diet. Where people sometimes struggle with the elimination diet is that they don't completely eliminate. You have to act as if you KNOW you have celiac, which will change your mindset about elimination.
My doctors don't think I have celiac, but they cannot say for sure. So, I am technically gluten intolerant. However, because my test results (endoscopy and colonoscopy) were equivocal, I act like I have celiac. It makes me be more careful. It is one thing to think that gluten will make me feel yucky (intolerance), and another to think that I am damaging my intestines (celiac).
I realize it is all a mind game, but trust me, sometimes the gluten products seem so much easier. I have to have motivation to stay away.
There are tons of great resources online for going gluten free. I also use an app on my iPod for grocery shopping, although I have gotten to the point that I can read labels and usually know if I am safe.
Sorry that I went off track from your testing question. But I think it is really important to consider an elimination test. You have to do it for a while--4 to 6 weeks. But if gluten is a problem, you will feel noticeable results within the first week.
Posts: 447 | From Vermont | Registered: Jan 2011
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posted
This test IS the most accurate. I was tested by others and nothing...this test gave me the geneotype and the specific genes I had for gluten issues along with sensitivity to egg/casein/soy. This is the test that all on the celiac groups who have negative tests end up going to and voila they are positive by DNA....get the comprehensive one..it is well worth the money !!!!
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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James1979
Unregistered
posted
Thanks a lot, everyone, for the info.
Sk8ter - Do you think it's necessary to get the DNA stuff, instead of just getting the antibody stuff?
Did you have any idea that you were allergic to eggs/casein/soy before you did this test?
Also, how in the world are they able to detect gluten antibodies while someone has been on a gluten-free diet for months? I've read their site trying to find an explanation, but I don't understand it.
posted
James call them and talk to the office.They were very informative. No I did not know about the gluten genes, soy. I knew about milk. But the DNA gene test is spot on. Eggs would give me stomach issues sometimes . The soy and milk ones were slightly elevated but gluten and eggs up a lot. If you go on the website it explains why they can detect even if you have been off of gluten. Very good website/
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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James1979
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posted
Alice about your question concerning which tests to order, I think it depends on a lot of factors. That's why I was having trouble making the decision myself.
I'll go through my own thinking process for which test I chose, and maybe it'll help you a little: The most important thing for me to learn is whether or not I'm gluten intolerant. For that you'd want the stool antigen test for sure. You don't necessarily need the DNA test if you just want to learn if you have a gluten sensitivity. Since I wanted to save some money, and I wasn't interested in learning about my genes, I just skipped the DNA test. But sk8ter knows way more than I do, and she recommended the DNA test.
I think it's cool that the test covers not only gluten, but also milk, eggs, and soy, since those are the most common allergens. That is the test I ordered. (I forgot what test number it was). I think altogether it costed $300.
IF you suspect that you might have multiple food allergies, I would definitely order the kit that tests for more food items. Since I don't think I have a lot of food allergies, I didn't order those tests.
Concerning your other questions, they're too difficult for me. Hopefully someone else will be able to answer them.
I'm so excited to see what my test results will be! I think I have a kidney problem which is directly related to gluten sensitivity, and none of my doctors have made the connection. I guess I'll learn soon...
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James1979
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posted
Alice - I think I sent in the test about 10 days ago, so I think the results should be in by next week.
I got the iodine loading test results coming soon, too!
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I did Enterolab and thought it was a waste of money. Yes, they told me I was gluten sensitive, but I already knew that from my reaction to it. I wanted the gene test.
Later I found that EVERYONE either has celiac or gluten intolerant genes except for Asians.
I guess I did benefit from knowing I did not have the celiac gene, but I had already gone through all the celiac testing and knew I didn't have it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
We did Enterolab last year. I did a lot of research first, and it was valuable to us.
1. The DNA thing is a waste. Everyone will come back positive for either the celiac gene or a "gluten-sensitive" gene. Doesn't ment you have it. I wouldn't waste money on it.
2. What Enterolab tests that others don't is fecal antibodies to tissue transglutaminase. This is the "anti-self" antibody. This distinguishes celiac from gluten intolerance. Anti-gliadin does not = celiac, though it does suggest that you might feel better off of gluten.
3. Enterolab does not test total IGA, so you could get a false negative there. Some people, like one of my children, don't produce enough IGA in general, so you can't get a reading on it.
4. The test isn't perfect, and the values are set so that you do not get false negatives (except for #3 above). So with a cut off of 10, an 11 may or may not actually be positive. There may be false positives within the lower positive values, but it won't send sick people on their merry way, telling them they can eat gluten (like quite a bit of current celiac testing).
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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James1979
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posted
Garden - thank you so much for the awesome info!! I wish someone had told me these things before I ordered the enterolab test, but it looks like I got lucky and made the correct choices. The DNA test seemed a little suspicious to me, especially since a customer service rep even told me that it's not necessary. Well, I thought, if it's not necessary, then why should I pay an extra $100 for it? Thank God I didn't throw away the money.
Also it's nice to know about the false-positive, false-negative stuff too.
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quote:Originally posted by rera2528: [QB] James--according to the GI who did all of my testing, the only 100% certain way to know gluten intolerance is by elimination diet. Where people sometimes struggle with the elimination diet is that they don't completely eliminate. You have to act as if you KNOW you have celiac, which will change your mindset about elimination.
- A lot of truth in that!! Testing missed mine, but the elimination was successful! (I did not use Enterolab)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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James1979
Unregistered
posted
Please everybody remember that some people with gluten intolerance do not display any outward symptoms, and so even if they go on a gluten-free diet they might not notice any health improvements.
For example, a lot of people who are gluten intolerant might only have a malabsorption issue which is causing them to have low bone density. These people might not notice any difference when they switch to a gluten-free diet, and so they might assume that they are not gluten intolerant.
It's cases like this where lab tests might be beneficial, even if the patient doesn't notice any improvements from a strict gluten-free diet.
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James1979
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posted
Some people wanted to know the results of my iodine test. I just got it back yesterday.
Since my results were completely abnormal, I can't share specific info publicly. If anyone wants specifics, you can PM or e-mail me.
Why do I always have to be an exception??? I actually excreted greater than 100%, which means there is a problem. Then I did some research on a pill I'm taking, and the pill causes excess iodine excretion. In other words, I might be in a state of constant iodine loss due to my meds.
I'm planning on stopping my meds for a few weeks, and then re-testing. I want to do the 24-hour loading test again, but also a spot iodine test, plus bromine and fluoride. It should be about $200 for all of those together.
I'm still waiting for my gluten intolerance test results, but they should be here this week. If I am intolerant, then this might be the cause of a strange disorder that I have. In this case, I'll do another test to see if I still have the disorder, and if it went away because of my gluten-free diet, then I can stop taking the pills that are causing excess iodine loss. Whew! Complex, isn't it? I probably didn't explain it clearly.
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Marz
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Member # 3446
posted
I had the Enterolab test about two years ago and came back "sensitive."
If the DNA test is suspicious but gluten causes malabsorption and bone loss, would it be ok for someone who isn't celiac to indulge now and then.
I've adjusted ok to avoiding gluten, but sometimes so want a piece of pizza or a crusty piece of Italian bread. There's no substitute for that!
My LLMD said it takes, can't remember for sure, but I think 3 months for the villi to heal so going off gluten causes damage after you've healed.
She tested me because I had lost muscle mass and suspected malabsorption. Can't say that's really improved being gluten free.
Interesting that everyone tests sensitive except Asians who probably don't eat wheat.
I rarely had Egg McMuffin's or some of their other egg sandwiches, but this morning as I drove by, not having had breakfast, I so wanted to go through the drive through for one!
Posts: 1297 | From USA | Registered: Dec 2002
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James1979
Unregistered
posted
Marz - do you have bone density problems or history of kidney stones? If you do, I would highly recommend leaning more towards staying gluten-free. There are a lot of studies showing that gluten sensitivity is a major cause of osteoporosis and kidney stones.
If you do have bone problems and you get DEXA scans, then maybe you can see if your DEXA results improve after staying gluten-free for a year or two. Also they can check your urine calcium levels to see if you excrete less calcium after being gluten-free.
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Marz
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Member # 3446
posted
I do have osteopenia James, and it got slightly worse within a 3 year period. I had been gluten free for some months before the second test.
I'm due for another test, so I'll see if it improved.
Is the urine test just the routine one they do at the physical?
BTW, I've started 1 drop of iodine per week rubbed on my thyroid as recommended by a nutritionist. Doesn't sound like enough though to me.
Wondering if you were to apply it topically, if you wouldn't excrete it? I use Iosol, but have seen some creams advertised.
Posts: 1297 | From USA | Registered: Dec 2002
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James1979
Unregistered
posted
Marz - I'm very interested in learning if your bone density looks better after avoiding gluten for a year or 2. Were you pretty strict on the gluten-free diet, or did you cheat a lot?
If you are younger, then I would be more suspicious of gluten-intolerance causing your osteopenia. But if you are post-menopausal (which is what I'm guessing) then of course there are all kinds of other complications which could be contributing to your bone problems. I would still be suspicious of gluten. If you google "gluten intolerance osteoporosis" you'll find a lot of info. There's more info if you search "celiac's osteoporosis".
I really really hope you're not taking bisphosphonates (AKA "Poison Death"). It sounds like you have a good naturopath, so I'm guessing she already warned you about those.
About the urine test: I think a lot of doctors tend to overlook that one. I think it's called a 24-hour urine-calcium test. I think they MAINLY use it to determine the risks of kidney stones, but it is a very valuable tool in assessing bone problems. If you don't think you've had it, I would ask your doc if he/she could prescribe it for you. If you did have it - you would remember taking an orange bottle home with you and peeing in it for 24 hours.
About the topical iodine - I think the studies on the net say that when applied through the skin, only 10-20% gets absorbed into the body, and the rest mostly evaporates into the air. I don't agree with your doctor's method, but maybe she has good reasons for doing it that way. I prefer to take it orally, because that's what the expert iodine doctors recommend (like Brownstein, Abraham, Flechas, etc.). I did read in one book about one doctor recommending painting the thyroids with iodine, but I think they were using more than 1 drop a day, and also I think the patients were still taking it orally.
Please keep us updated. I'm in a similar boat as you.
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James1979
Unregistered
posted
Just got my Enterolab results back. I am most likely gluten intolerant! My number was over 40, whereas anything over 10 is considered intolerant.
I'm super happy now, because this might be the cause of some serious health problems. I've been searching for YEARS for the cause of these problems, and I might have finally found the answer.
I just want to say this to everyone: You don't have to have immediate outward symptoms if you are gluten intolerant! I was eating gluten every day, and I thought I was very healthy. I knew I had some internal problems which could be detected in lab tests, but other than that I didn't "feel" any negative effects of gluten intolerance. If you have some kind of strange or "idiopathic" illnesses, I highly recommend testing for gluten intolerance.
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I think that is a nice, clean read with a number over 40.
Mine was 14, and I'm still not convinced gluten is a problem for me, though I'm 99.9% gluten free.
I did have a child with a 118 for anti-gliadin, and a 27 for TTG, which was a shock to me. Oh, so THAT's why she had slipped down, down, down the growth charts.
Celiac and Lyme have highly overlapping symptoms, and I think all Lyme patients should check out the possibility of gluten intolerance. Otherwise, you'd never know if you were actually cured of Lyme, but have symptoms from gluten (including pain, neuro symptoms, etc).
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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James1979
Unregistered
posted
Garden - thanks for replying.
Did you do any other food testing at Enterolab? Mine is showing over 40 for the eggs, and over 10 for dairy and soy. I'm wondering now if I should've just originally ordered the bigger test that tests for 11 more food types. I might still do it in the future.
Do you think the TTG is a good test to run, if I already know I'm probably gluten-intolerant?
Also, do you think it's a good idea to do the fat malabsorption test, to see if the intestines are damaged from the gluten? I've been contemplating doing that one too.
In general, I feel like I should do a lot more allergy testing, but I feel lost because I don't know where to start. There's blood tests, skin prick tests, elimination diets (which DON'T work for me, because I don't notice any kinds of reactions), and other things, and it's just so confusing.
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Unfortunately, I don't think the "friendlies" break down the casein enough. But there are alternative "milks" that can be used to make Kefir, such as coconut milk, rice milk, etc., or even water.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I'm 100% gluten-free, and then I cheat on one meal every three months or so (usually in a travel/social situation where it's really hard). I don't notice any effects when I do.
James, with an egg score that high, I'd drop the eggs, too. One of my kids was off eggs for a year, let me know if you need baking tips. Gluten-free/egg-free are a total pain baking-wise, but it is doable.
Scores above 10 and below 20 may not be relevant. You could drop for a while, then reintroduce after you feel you've healed more.
It sounds like your whole system is flared up and your immune system is over-reacting. I think more than eliminating tons and tons of foods (which can create a whole new set of issues), I'd eliminate the top few and work on modulating my immune system (via energy work, supplements, whatever approach works for you).
My child who scored so high was also dairy-intolerant (don't remember the score, but it was clear) and had a 10 for soy. Soy does not seem to cause problems for her, but I did need to drop both gluten and dairy (and go low fructose, sigh) to get her bowels under control.
Enterolab seems to have changed the package options. I don't think you need to the other tests if you are truly committed to going gluten-free. Honestly, stereorrhea (I spelled that wrong, I'm sure), when you have too much fat in your stool, causes stools to float. You should pretty much be able to tell by looking in the toilet. I don't think you need the fat malabsorption test (especially if you are not super underweight).
IgE tests are not something you need - if you have an IgE reaction, you know it (hives, etc).
IgG testing is very imperfect, and you can have false positives along with false negatives. The Alletess test was about $85 for 100ish foods, so that is the one I would use if necessary. IgG tests the so-called "delayed" allergies - the ones that cause GI, psych, and neuro symptoms.
Enterolab is testing IgA reactions - these are uncommon outside of gluten, milk, etc - I'm surprised egg came back so high for you.
Have you had your vitamin levels checked? Aetna covers Spectracell, which is awesome for vitamins (but not very accurate for minerals). It is way too expensive otherwise.
If you think you have damage to your GI tract, you could take Brocolive (New World Organics), Crucera (Thorne), or some other supplement based on cruciferous vegetables to help heal. Also Quercetin can help soothe GI inflammation.
I would drop the Kefir (sorry), but you could look at Kombucha, fermented foods, such as natural pickles, kim chee, etc.
You can buy soy and coconut milk-based yogurts, though those will be lower doses of probiotics.
Remember that whey comes from dairy.
Good luck!
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I learned that "cheating" can cause brain damage. For up to six months after ingesting, the neurological impacts can persist.
That from a medical abstract at PubMed but also from my own experiences.
This is not at all like a diet of my youth where the bounds were fluid. I have no leeway and do better in that knowledge to simply avoid gluten, always. A "treat" could kill me as the next seizure to hit could and, for me, gluten is just one trigger.
For others, though, if the body is impacted in anyway for up to six months, is that really worth it?
---------------
LymeToo, you mentioned a place that has gluten-free pizza.
I just found a place, too. and they deliver. However, on their website, they are very clear that they cannot guarantee that to be gluten free as their is wheat flour sort of flying all around the kitchen.
Sigh. GF pizza crusts can be ordered on the web from a certified GF source, though.
And, really, I can get all the Italian flavors with a good pasta sauce and the GF penne. It's mostly the flavors I'm after, not just the crust.
But anytime a restaurant makes their one breads or crusts, they will like contaminate any of the GF offering unless given special attention by the chefs and kitchen staff.
----------
I also think that SOME genetic test can be very accurate. I had to be transported more than once by ambulance to the ER from severe stomach distress. After I was dx and stopped gluten, my stomach got much better.
And, for me, gluten does trigger seizures - for up to 3 days after ingesting even a trace. I learned the hard way never to trust someone's memory of the ingredients in a dish at a Pot Luck.
Also learned to call restaurants for all ingredients. Ordering "Spanish" or "Mexican" Rice really did me in. The next day, when I called and they read the ingredients to me:
the second ingredient in the rice flavor packet?
Gluten. Explained a lot. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, I agree with you that celiacs cannot cheat. Ever. My daughters cannot cheat - one had celiac and the other is gluten-intolerant.
I just happen not to be gluten-intolerant. I keep a gluten-free home on their behalf, and almost never eat without them.
I make awesome pizza crust following the directions on the side of Pamela's bread mix.
I do have a local pizza place (Z Pizza) that is very careful, BUT the franchise owner's mother has celiac, so they "get it".
We only take the kids to restaurants that have gluten-free menus. We are very lucky to live in a place where we have options.
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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quote:Originally posted by James1979: If Enterolab says I'm producing antibodies to cassein, does that mean that milk kefir might be harmful for me????
Say it ain't so!!
They told me that, too, and I cut out dairy for quite some time. I noticed no difference at all cutting it out, and no difference at all when I added it back in.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Garden,
Thanks SO much for the tip about Pamela's bread mix for pizza crust.
I'm also glad to hear that you have dining options that are wise and safe.
I'm also very glad that you are not gluten intolerant. It does make life easier.
I was speaking to those who are (as there are so many things to consider), so I hope you don't take my words to go for the entire population of the earth. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
"LymeToo, you mentioned a place that has gluten-free pizza.
I just found a place, too. and they deliver. However, on their website, they are very clear that they cannot guarantee that to be gluten free as their is wheat flour sort of flying all around the kitchen."
TRUE!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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I actually excreted greater than 100%, which means there is a problem. Then I did some research on a pill I'm taking, and the pill causes excess iodine excretion. In other words, I might be in a state of constant iodine loss due to my meds.![[Wink]](wink.gif)
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