Enterlab Results - Really?

[PatrickCA]

Hi all,

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OK...this message is long and not for the faint of heart. I got my test results back yesterday and am in a state of disbelief!! Basically, all of the results (excluding absorpsion) were positive - suggesting gluten sensitivity and or celiac, as well as casein sensitivity.

Fecal Antigliadin IgA 27 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 32 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 280 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 62 Units (Normal Range <10 Units)

HLA-DQ 3,1 (Subtype 8,6) (1 gluten sensitivity linked gene AND 1 celiac linked gene)

So.....what do I do now?!? OK, I know I should just go gluten-free (and maybe casein) and watch for improvement. BUT,...... here is the -mental- problem I'm having with that.....

During the last few years I've seen several Drs (even saw one Gastro, one Rheumy, two neuros). On one occasion I spent 2 days and $2000! out of pocket at the Mayo Clinic. No DX, but some hints of non-specific inflammation. So, after all of that how can it now be so easy for Enterolab to say, yes this is your problem. Now give up all of your favorite foods......for life!!! No MILK CHOCOLATE for god sakes!? On the other hand, I don't want sit around and wait for my intestines get digested by my immune system.

The second problem I have is that, as many of you know the enterolab tests are so sensitive that a significant percentage of people that that are "healthy" can be shown to be positive for one or more tests (though maybe not three). In other words, my impression is that the tests are not specific for *clinical* celiac or gluten sensitivity.

Will I regret not getting an official dx one or more years down the road??

Should I challenge myself with gluten one more time and then if I react be convinced (the one time I tried this I had a nasty response)??

[Ursa Major]

Patrick, I understand that you don't like what you see. But really, you know exactly what all this means. So, take a deep breath, thank God (if you believe in Him) that you don't have cancer and other more nasty things yet and come out of denial.

There are no ifs, buts and maybes here, the diagnosis is clear, everybody you have seen this far (yes, even the people at the Mayo Clinic) were too ignorant of celiac disease to figure it out. You need to be gluten-free and dairy free for life, and that's it. The sooner you face the facts and get on with your gluten-free and dairy free life, the better.

Find yourself some nice treats you can have to replace the ones you have to give up.

And as for the 'healthy' people diagnosed by Enterolab, they weren't as healthy as they thought they were. It's the rare person who has been diagnosed by them who didn't realize all the symptoms they had, until they went away being gluten-free.

I know it's hard.......and I've gone through stages of denial, especially because I don't even have an Enterolab diagnosis, just my self-diagnosis, and ate things I shouldn't, only to be really miserable and sick again. And maybe you will have to do that before you decide you'd rather give up your favourite foods than being sick.

I hope you have lots of support from people you love, that will make it easier.

[AndreaB]

Patrick,

I had my family tested by enterolab even though we didn't have any symptoms. This was brought on by my babies allergies. I first got allergy testing done, the results are in my sig. 3 out of 4 of my family members have gluten intolerance and my oldest son even has mild malabsorption. I am thankful that we caught it early and could make the adjustments necessary in our lives.

You need to go gluten and casein free for life. Your casein score is quite high IMO. There are some substitutes. I would warn you away from becoming dependent on soy to replace dairy though. It can cause a lot of problems. If you eat soy, go light with it. There are plenty of things still left to eat, just takes reeducating the body and taste buds to something different.

There are many on this forum that are gluten-free/df and even sf. Hopefully they will get on board here.

[Nancym]

Enterolab is on the cutting edge for detecting gluten sensitivity. Everyone else is still futzing around with tests that don't detect it until the damage is very severe.

I just attended a lecture with Dr. Fine speaking and it was fascinating. Just about every one of the people who went gluten free, even a few without a positive, had improvement in their symptoms.

I don't know if you've tried going gluten-free yet but man, it was quite remarkable how much better I felt. My IBS symptoms cleared right up. It is unfortunate that I had 47 years of exposure to wheat before I got this figured out. I've got 2 autoimmune diseases and other problems that will haunt me for life.

I know changing your eating habits is hard but you can find substitutes and new favorite foods. Over the years I've done this several times. Once when I decided that sugar and starches are not healthy to eat a lot of. Then again when I found out about my gluten and casein sensitivities. The easiest way for me to do it is to find new comfort foods right away and figure out what my new "treats" will be. The first few weeks, I lean on them a lot while I'm figuring out which foods will become staples in my new diet. Then I figure out what meals I can put together really quickly and what sort of things I can take to work for my lunches. Pretty soon, it is a fun challenge to work out rather than an onerous change.

I discovered that SE asians don't eat much wheat or any dairy so I look to them for inspiration. And I love Thai and vietnamese food. Yum!

Finally, when you think about it what is more important? Your health or clinging to old eating habits?

Looking at the list of doctors you've seen, it seems like you might stand to gain a lot by making some dietary changes.

Oh yes, one thing that really helped me feel regret over foods I loved was to start to view it as poison.

If you can't quite make a commitment to changing for life at least give it a 100% try for 2 months and give your body a chance to heal a bit. If you're like me you'll feel so much better you won't ever want to go back.

[mle-ii]

One telling thing for you is this particular item from the testing:

Quantitative Microscopic Fecal Fat Score 280 Units (Normal Range <300 Units)

This is pretty darn high which means that though you are within the numbers you do have some damage to your GI that is causing malabsorption of fat, which as nice as it may sound is a very bad thing. Especially for fat soluable vitamins.

Like others have said I'd stick with the facts and go gluten/dairy free.

[barbara3675]

I like what Nancym had to say and agree with her. I wish I could hear Dr. Fine speak and I wish he would go more public or national with his cause. Wouldn't it be great if he were on Oprah????!!!!!!!!!!! It would jump this issue into a new dimension. Barbara

[CarlaB]

My scores:

Fecal Antigliadin IgA 60 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 44 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 285 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 30 Units (Normal Range <10 Units)

I have two gluten sensitive HLA DQ1 genes

I was two months gluten-free when I had the testing done. I know my malabsorption was a lot worse before the testing because by the time I had the testing done I had gained 5 pounds and was eating much less to maintain my weight.

I knew I had to get off gluten because I had joint pain, diarrhea, stomach pain, extreme weight loss, rashes, bruising, fatigue, brain fog, etc. I did go on a gluten challenge and felt so bad by the end of the six weeks that I could hardly drive. I eliminated gluten, then about four months later realized it was essential to eliminate dairy as well. I kept getting glutened, or at least I thought I did, then I realized that each time I felt bad it was after dairy. So, I eliminated dairy as well. I also eliminated soy and foods high in mold. I'm finally starting to feel good.

You need to eliminate both gluten and dairy to feel better. You could do a challenge, or you could wait till you're gluten-free and casein-free for a few weeks, then try the challenge. I think you will find that you feel better and your symptoms start going away.

I have never heard of people with no health problems being told they had one by Enterolab -- usually symptoms they never even realized they had go away. If they get diagnosed by Enterolab before they have a whole bunch of symptoms like I did, I consider them lucky for finding it before damage was done!

A period of denial is very normal. That's why it took me so long to get off casein! Try Tropical Source chocolate, it's gluten-free/cf and very good.

[Rachel--24]

I just attended a lecture with Dr. Fine speaking and it was fascinating. Just about every one of the people who went gluten free, even a few without a positive, had improvement in their symptoms.

Wow Nancy...was this the big thing in Texas? I would have loved to have gone to that. I never saw any posts on it and have been wondering if he shared anything new regarding his studies. Sounds like you are doing well...good news.

[Rachel--24]

Patrick...here are my results:

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)

I know its easy to be skeptical....especially when the doctors cant figure things out. Every test they ran over a 3 year period came back perfectly normal....with the exception of low iron. I had MRI's, CT scans, bloodwork...everything you can think of. This is the only test to ever indicate a problem. My casein was negative and I later ordered the test for yeast and eggs and they were negative as well.

I was really sick while all this was going on...on disability for 2 years while the doctors told me it was all in my head.

After going on the diet I'm back at work now and doing much better...I went back to work only about 3 months after going gluten-free. As another poster pointed out your malabsorption was in the high upper range....but still normal. Note how high mine was....it was nearly to the point of being severe. I had also lost 25 lbs. and have gained almost all of it back in recent months. My point is....you dont want to wait for the damage to reach this level. Nothing showed up in the bloodwork or the biopsy in my case as well....however, there was obviously something wrong. I couldnt function at all. My biopsy wasnt done until I was 6 months into the diet so its not really of any value...it was assumed it would come back negative.

Since you've already done a challenge with ill effects...I think you already have your answers and now just need to accept them and move forward.

Oh...and as far as the chocolate goes...there are some that are available. Tropical Source is one brand. Enjoy Life has chocolate chips that are free of all major allergens (gluten and casein included). You just have to look around for alternatives....but there is plenty out there for you.

[PatrickCA]

Thanks everyone for your great advice and support. I really appreciate your sharing your dx's, your suggestions for 'getting over it', and even your suggestions for chocolate brands...which will not be ignored.

I know I'm being difficult, but it just seems strange that after so many tests (the MRIs, three spinal taps (which were abnormal), full MS work-up,..bla, bla, bla...... I'm (with a lot of help for enterolab) the one to find the problem, and order the test for a dx. Apparently, none of these Drs are sufficientlly aware of food allergies, to realize the systemic effects they can have. What a huge problem for those out there suffering from this problem without knowing about it! We really do need to help get the message out to non-GI doctors! Maybe Oprah is the ticket! Or a major article in Time, or Newsweek. (Maybe using the tie-in to Autism)

I've had a quite few neurological problems during the past few years that seemed to mimic MS. Especially, feeling of vibration or 'buzzing' in my head, and throughout my body (and STRANGLY in my intestines during and after bowl movements). This knocked me out. I thought I was going to loose mental function, and purchased long-term disability insurance. (Maybe I won't be needing that after all!) These problems HAVE improved since going gluten free, but are not gone completely (in 2-3 weeks). I know I have to give it some time. And like some of you said, give the Casein free diet a real chance to work.

Kind of funny that when I felt really sick, and hungry, I'd eat grape-nuts cereal and milk...... (guess how I felt then?). But, I coudn't connect the dots becauseI thought that since celiac was genetic, you'd have it since birth. And my problems started at 32. So, maybe MS, Lyme,.....you tend to hear a lot more about those problems than celiac.

Anyway, I'm rambling.......

[Ursa Major]

Patrick, now that you said that, I remember getting those awful vibration feelings in different parts of my body for years! I was afraid of telling people about it, because they were already saying that I wasn't doing more because I was lazy, and making things up to get out of working harder. They thought I had a mental problem.

Anyway, those vibrations have disappeared completely, I never get them any more.

And you know they say, that you're usually addicted to the things you can't tolerate. So, you going for the grape nuts and milk is logical when looking at it in that light. Of course, that's precisely why you're so upset about giving up those things......because you are addicted to them, and you are likely having withdrawal symptoms.

Hang in there, soon you won't crave the things that hurt you any more, and will feel so much better! I am glad that the diet is already helping you feel a lot better. Keep up the good work!

[Nancym]

Wow Nancy...was this the big thing in Texas? I would have loved to have gone to that. I never saw any posts on it and have been wondering if he shared anything new regarding his studies. Sounds like you are doing well...good news.

No! He came to San Diego a couple of weeks ago to speak to the celiac group here. He's got about a one hour lecture with slides and he talks about how he stumbled into finding antibodies in the intestines and how that changed his career. I really wish they'd post where he's going next because it was a really fascinating lecture. He had about 30 minutes of Q&A afterwards too.

He said he's going to be looking to publish at the end of the year. So, I'm thinking it'll be 2007 before we see his work in print.

I've had a quite few neurological problems during the past few years that seemed to mimic MS. Especially, feeling of vibration or 'buzzing' in my head, and throughout my body (and STRANGLY in my intestines during and after bowl movements). This knocked me out. I thought I was going to loose mental function, and purchased long-term disability insurance. (Maybe I won't be needing that after all!) These problems HAVE improved since going gluten free, but are not gone completely (in 2-3 weeks). I know I have to give it some time. And like some of you said, give the Casein free diet a real chance to work.

Kind of funny that when I felt really sick, and hungry, I'd eat grape-nuts cereal and milk...... (guess how I felt then?). But, I coudn't connect the dots becauseI thought that since celiac was genetic, you'd have it since birth. And my problems started at 32. So, maybe MS, Lyme,.....you tend to hear a lot more about those problems than celiac.

Anyway, I'm rambling.......

There was a wonderful forum called Brain Talk where a lot of Gluten Sensitives with neurological disorders met and talked. There were even people popping in with MS symptoms who found a gluten free diet really handled a lot of their symptoms. They had compiled a HUGE resource of links to research about neurological symptoms and gluten sensitivity. Unfortunately the site crashed and has not returned.

Did you get the gene test done? There's one gene in particular, DQ1, that is associated with neurological gluten problems. I have that one and one of the main celiac genes. After going gluten-free/CF and taking vitamin B supplements (sublingual B12 and a B-50 complex) I feel like I regained about 20 IQ points. My brain is working a lot better. Brain fog is pretty much gone and my memory is GREAT again! But it takes time. I've been mostly CF for 8 months and completely gluten-free for almost a year.

BTW: This guy is doing a ton of research into Celiac and neurological conditions and he's found a huge connection. Dr. Marios Hadjivassiliou You can probably go search for his name on Google or pub med and get a TON of info.

[PatrickCA]

That is interesting, Nancy. Yes, I had both the DQ1 and one of the main celiac genes: DQ8. Did you notice a clear difference in cognitive function (or other things) with the CF switch? (Or mainly just from the gluten-free?)

Glad to hear your IQ improved! We need smart advocates. I'm hoping for 20 extra points myself! I definately have been having problems with decreased brain power, and have had to work harder to keep up with things.

I've come acrossed the braintalk site many times (before I found this GREAT site) when using the keywords "buzzing and vibration in head." I hope that braintalk is revived. But, I'll follow up the lead you provided about the link of DQ1 with neuro stuff on pubmed.

[Nancym]

That is interesting, Nancy. Yes, I had both the DQ1 and one of the main celiac genes: DQ8. Did you notice a clear difference in cognitive function (or other things) with the CF switch? (Or mainly just from the gluten-free?)

Glad to hear your IQ improved! We need smart advocates. I'm hoping for 20 extra points myself! I definately have been having problems with decreased brain power, and have had to work harder to keep up with things.

I've come acrossed the braintalk site many times (before I found this GREAT site) when using the keywords "buzzing and vibration in head." I hope that braintalk is revived. But, I'll follow up the lead you provided about the link of DQ1 with neuro stuff on pubmed.

I think the CF helped too. I know when I start eating dairy I start to feel fuzzy again. Yeah, I hope Brain Talk comes back! I miss that site.

Lots of neurologically challenged folks swear by taking B vitamin supplements. I'm taking a b-complex and B-12 sublingual. I think it might have helped too.

[dellatigre]

Wow Patrick...reading your story reminds me of mine. A LOT. I am aslo 32. I have that weird vibrating feeling in my head and then I feel really weak....and I get it throughout my whole body. I am in the process of getting tested, although everything always comes back abnormal but inclonclusive.

I hope you are feeling better and better everyday. That will make it easier to avoid those foods .

Rachael

[Nancym]

Someone from Braintalk saved the gluten file, and formatted it gorgeously. Read through this, you might find some familiar stories: Open Original Shared Link

[PatrickCA]

Thanks for finding that link, Nancy! It looks really informative, and very relevant to the symptoms I've been experiencing. I immediately noticed things that I've experienced, like painful zaps on my feet, muscle spasms, tingling, and other fun mysteries.

Rachael, sorry to hear you having this vibration problem as well. Sounds very familiar. Do you notice whether it gets worse at night, or other times of the day. Is it present when you are relaxed and perhaps reclining or lying down?

Like you said, when I have strong "buzzing" usually in the early evening and throughout the night (i.e. present if I wake up), I feel very tired and physically weak as well. So I usually lie down, but then it seems to get worse so I just try to go to sleep.

A few interesting things I noted about this uncomfortable problem are:

It is a very common symtom for different problems, Lyme, MS, A couple different Drs. have indicated to me that they often suggest the patient try anti-anxiety meds when they report this symptom. (That is not to say that anxiety is causing the problem.) It is a very common symptom in people with MS (lots of people on the MSWorld message boards report this problem) many people with MS also get diagnosed with celiac.

When this problem was severe I've had lumbar punctures. In each case, the total protein concentration was high (out of normal range). And in one case, I had the presence of one type of antibody in the spinal fluid that shouldn't be there. The presence of three different antibodies (referred to as oligoclonal bands) is one of a few important metric to diagnose MS.

There are recent studies showing that anti-TTG and/or anti-gliadin antibodies can been found in spinal fluid. AND, that these antibodies 'attack' certain cell types in the brain.

Anyway, I'm going to ask my neuro to retest an old sample of spinal fluid for anti-TTG/anti-gliadin.

Anyway, Rachel, you should consider the Enterolab test, or try the gluten free diet for a couple months. If you do go for the test, and care spare the change, I'd spring for the complete panel....and consider it $ very well invested. In either case, hope you are feeling better fast.

[daffadilly]

Brain Talk had a hardware crash about July 20, 2006 & is repairing that and upgrading the software, or at least that is what I read.

NancyM - nice to see you hear also How are you doing?

Patrick, have a nice glass of wine & a shrimp cocktail & make a list of all the things that you can eat & also check the boards for ideas & recipes. Once you get over the addiction of the wheat & dairy (takes about 3 weeks) you will never go back. When I read about your neuro problems I knew you had DQ1... It is so common to have neuro problems with DQ1.

My favoite treat meal is homemade tacos, fry some mission brand white corn tortillas in light olive oil, drain, add any of the following (or your favorite ingredient) chopped lettuces, cabbage, black beans, bean dip, tomatoes, avocado, minced purple onion, salsa, any cooked meat or no meat for vegaterian style, take it up a notch & sprinkle on chopped cilantro & or chopped fresh herbs, basil is a favorite of mine.

If you have a yard or a patio you might want to plant a few herbs...

[jcc]

I've come acrossed the braintalk site many times (before I found this GREAT site) when using the keywords "buzzing and vibration in head." I hope that braintalk is revived. But, I'll follow up the lead you provided about the link of DQ1 with neuro stuff on pubmed.

Hi Patrick,

Have you ever had your B12 level tested? A B12 deficiency can definitely cause those type of symptoms. I've recently heard others say that B1 deficiency can do the same, and also B6 deficiency. I would definitely begin talking 1000mcg of B12 daily along with a good B-complex. I saw big improvements within the first three months.

Here are the Open Original Shared Link. And more Open Original Shared Link

I think this is the best Hadjivassiliou article for an overview, but his newer work is making great strides in proving gluten sensitivity can manifest neurologically:

Open Original Shared Link

Thanks Nancy for passing along TGF link...please do so if ever you think someone might be helped with the data. At this point, it is just word of mouth.

Cara

[PatrickCA]

Cara,

Thanks for your efforts to keep this this collection of information available online. I have been tested for B12 twice during the past two years by two different labs. Both times gave results within normal limits.

I've started going through some of the articles on the gluten file site,...very interesting stuff.

I thought about copying here all of the symptoms you reported for B12, that I've also experienced,....but then I realized there were too many. (I've had about 2/3 of those!) Some of them were uncanny..... including the numb,buzzing spot on scalp, (sometimes mine would feel like fizzing soda), back n fourth vertigo, constant twitching all over the body, and others.

Did you eventually get a celiac disease or other dx?

[jcc]

Cara,

Thanks for your efforts to keep this this collection of information available online. I have been tested for B12 twice during the past two years by two different labs. Both times gave results within normal limits.

I've started going through some of the articles on the gluten file site,...very interesting stuff.

I thought about copying here all of the symptoms you reported for B12, that I've also experienced,....but then I realized there were too many. (I've had about 2/3 of those!) Some of them were uncanny..... including the numb,buzzing spot on scalp, (sometimes mine would feel like fizzing soda), back n fourth vertigo, constant twitching all over the body, and others.

Did you eventually get a celiac disease or other dx?

Hi Patrick,

Sorry for my delay. I pop in and out just occasionally and usually only respond to neurology based posts, and then I forget to look back.

I never did get an official diagnosis!

I had to push my doctor about WHY I was B12 deficient. Her answer was, "some people just need more".

I asked for the tests for perncious anemia (anti-intrinsic factor, anti-parietal cell)....both were negative...although antibodies are thought to be negative in 25% of those with pernicious anemia. (It always interests me that when it comes to some autoimmune disease, negative antibody status in a percentage is accepted). I do have autoimmune thyroid disease with high anti-TPO.

They were going to do the Schilling test, but it is somewhat outdated....and the materials needed to perform the test were no longer available to the lab.

My celiac antibodies were ALL NEGATIVE...even the antigliadin antibodies. My daughters both have positive antigliadin IgG only. I am double DQ1, for what that may be worth.

SO...I remain a mystery. However, I had also shown below normal calcium and below normal albumin in past tests (never mentioned, and I only found out when I requested copies of all past records)...and other abnormal labs like low ALT/AST (which can indicate B6 deficiency as well). It seems I was malabsorbing for one reason or another. My new doctor has seen no reason to run any bloodwork for three years..not sure I like that either.

Fixing the B12 thing resulted in a resolution of most of my symptoms, but when I went gluten free to support my daughter almost two years later....I noticed more benefits~ Like the return to what I call PPP (practically perfect you know what) and no more blood in my stool. AND absolutely no more stomach pain/Gerd, and the ability to add back foods I had to avoid for years...like chocolate, tomatoes, pickles, spicy foods, etc. I've been gluten free for five years now, very compliant.

You might consider taking 1000mcg methylcobalamin B12 despite normal or even high range B12 levels. We had a member on BT, Fred, who had sky high B12 levels, but didn't respond until he used the active forms of the vitamin. It is really important to take with a multivitamin , and B-complex. because they all rely on each other. Both B6 and B1 can cause similiar symptoms....maybe others. B12 levels can elevate quickly once you take supplements, but healing can take longer...and symptoms can re-emerge if you stop taking it (even though the B12 level might not have dropped below range again).

The other biggest explanation I have seen for these type symptoms is Lyme disease. The PN forum on Braintalk (also many of the other forums there) was a haven for these type of weird symptoms. Hands down, B12 deficiency was the most common cause, followed by Lyme Disease....and of course, we know gluten sensitivity may be responsible too. Then there is MS, and a few others. (but if you are going to start thinking of MS... the Direct-MS site is a must read) Interestingly, many with Lyme Disease also have B12 deficiency and gluten sensitivity. Big chicken/egg question there.

Cara

BTW... Do you know what your normal B12 level was??? Mine was normal, too, after 3-5 years of progressive symptoms. 294 (150-1100). Anything below 400 is very suspicious, and rarely those with higher normal levels are still deficient. I've always wondered what my B12 level was when I began having symptoms. Also, do you supplement folic acid? High folic acid can falsely elevate B12 levels, masking deficiency.

Yes, I have also been suprised by how many of the symptoms are crazily similiar. I remember my doctor looked at me crosseyed when I talked about the buzzing and twitching, and in fact...she thought I HEARD the buzzing (although others could absolutely feel my leg buzz). The vertigo was by far the scariest, although the 24/7 constant bombardment of twitches and buzzing, and the heart irregularities/panic attacks weren't too wonderful either. I was delighted when I heard some describe 'bee sting' pain, which was my 'deep but pinpoint pain'. Ughhh. Eight specialists...and not a single one of them looked outside of their own box for a systemic cause connecting all of my symptoms. I always listed everything off, believing there was a connection, but this only increased their view I was a hypochondriac. I knew it all had to be connected...over a matter of three years...I felt I was just deteriorating.

[Nancym]

It's odd to read this. I get that bee sting thing too. Very fleeting. Right now i have a nerve twitching in my eye that has been doing that for days. I ran out of sublingual B12/folate, I'd better get more.