Enterolab testing

[seabare]

I was just wondering if anyone has had the testing for gluten from Enterolabs and their test came out negative?

I've only read posts supporting the use of the testing from those with positive results. Have there been any negatives and I've just missed their posts?

I'm still on the fence about the tests, both due to cost and still working on getting the next colonoscopy done w/o going broke in the process.

Thanks for any info.

Robin

[Stanz]

Robin,

I don't know if you've seen this thread where test results are listed: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10084
I haven't just now looked through it all, but as I recall, there are a few who are not gluten sensitive.

Considering your long history with this, and that you were pretty well dx already from what I saw in your initial post here, if I were you, I would opt for the Enterolab testing before I did another colonoscopy unless your symptoms have taken a dramatic and abnormal (for you) turn.

I know it sounds like a lot of money, but the complete test was the best thing I ever did for myself. At least I KNOW what I can't eat now and why.

[seabare]

Thanks Connie,

I did just take a look there and unless I'm missing something, it appears that everyone of those results tested positive to gluten in some way. I'm wondering if anyone did the testing and it came back negative for gluten.

It just seems there are so few posts from people who are not gluten sensitive, yet still have MC, I'm trying to get a handle on what proportion of MC dxs are also really gluten sensitive. It can't be nearly 100% or the Drs. couldn't completely rule it out as a contributing factor, as most do.

And yes, my symptoms while going on for years, have increased in incidence, severity and type in the last 2 years or so. I've just finally convinced my PCP to refer me to a new GI in Jan. Thats the reason for another test. Last one was done 7 years ago and they still said it was IBS, even with biopsies. The new Dr. is thinking MC. Seems reasonable from all that I've learned here.

Another thing I'm really wondering about is how all/most all of the PP can hold down their jobs? I've usually been so sick in the am and tired and foggy and nauseous that I physically and mentally couldn't perform my job. Just getting through the day is tough enough. How do they do it? I've lost my career due to this---I just couldn't be there enough and was non-productive when I was there.

Thanks for the help,

Robin

[tex]

Robin,

Connie accidentally listed the link for the gene test results, so I don't see how you could have reached that conclusion from the gene test results. Here are the food sensitivity test results:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

As you can see, no-more-muffins, and Shonda tested negative to gluten, (gliadin), sensitivity, and quite a few members tested negative to casein sensitivity.

According to Dr. Fine's research, 69% of those who have MC, are gluten-sensitive. You have to bear in mind, though, that most people who are able to achieve remission by what their GI doctors recommend, never bother to search out support groups on the internet, because they don't feel the need for additional support. GI docs can successfully treat the easy cases, (those who have no food sensitivities), with drugs. Those who come to this site are usually the more difficult cases, who have not been able to receive much help from their doctors. Obviously, then, most people who join this board will be gluten-sensitive, and that's the reason for the high percentage of positive gluten antibody test results by members of this board.

If you have had the disease for years, and have tried drugs, and are still not in remission, then the odds are extremely high that you are sensitive to gluten, and probably other food proteins.

Tex

[Stanz]

What Tex said. I can't improve on that.

[seabare]

Thank you both Tex and Connie,

Now I've looked at the other information and I must go from here. Can you please give me a definition of "remission"? Is it just a little better, much better, is it possible to feel "normal" again w/o all the rumbling, nausea, lack of appetite, total exhaustion, foggy thinking, etc? Right now I couldn't imagine holding a job, going for a run, even gardening.

The Entocort has now been my friend for about 11 weeks now and has helped extremely well for the D, but the other symptoms have not abated. I'm not sure what path the Dr. will take after the colonoscopy, but there doesn't appear to be that many options that may address the other symptoms after the Entocort and Asacol-type drugs.

I know there's a whole host of other drugs, etc. but I don't know if they address anything beyond the D??

Does that all boil down to the diet thing--GF, DF, etc.? If I could really go that way, and could stand it, is there a possibility of actually feeling normal again with energy enough to live a complete life?

It has been so many years--I can't even remember the last time I woke up and felt "well" and looked forward to the day. Is that really attainable?

Thanks for your help. I've just been hunkered down and trying to hide my head in the sand.....


Robin

[Joefnh]

Hello Robin, I am fairly new to this disease and cannot say what the definition of remission truly is. Hopefully it means at least a significant improvement.

I am also taking the Entocort (9mg /day) and in my case it has alleviated all the secondary symptoms of brain fog and other aches and pains by week 3 of usage. The doctor did run a celiac blood test for me in February which came back negative; although it seems that the blood test is not a good indicator of a gut sensitivity to gluten.

After just starting a GF diet this week, it has helped quite a bit in my energy levels and quality of sleep. I believe Tex posted a summary of a study that mentioned that 69% of the people with MC are also gluten sensitive.

If after 11 weeks on Entocort you are still dealing with the secondary symptoms, I would encourage looking at the Enterolab testing that is mentioned multiple posts in this site. If that is not an option, simply eliminating gluten would also be a fairly good empirical test. Keep in mind that is possible that dairy product may also be an issue.

There are several good recipes on this site from Gabes, Dee and others which can be found in the main forum and this message board.

Robin best wishes and please keep us informed of your progress

--Joe

[tex]

Hi Robin,

Remission probably has a slightly different meaning to various individuals, but to me, (and I believe that most of us can live with this definition), remission is a return to how we felt before our symptoms began, and the only physical difference between our pre-symptom days, and the state of remission, is the need to continue our maintenance treatment, (IOW, we now have diet restrictions that we did not originally have, and/or we are taking a "maintenance" medication that we did not use prior to the development of our symptoms).

For most of us, when we achieve remission, we feel better than we have felt in decades, and yes, all the D, aches, pains, headaches, migraines, stiff joints, brain fog, etc., are completely gone. It literally can make you want to climb the tallest hill around, and shout to the world, how great you feel. At least that's the way that I felt, after I was able to crawl out of that pit that I thought I was doomed to spend the rest of my life in. I kid you not.

Tex

[seabare]

Wow Tex. I didn't think that could ever be possible again. It has been so many years now that I had convinced myself that I was doomed to live/survive this way for the rest of my life.

If remission is really being able to be the me I was before the symptoms, I'd feel like I was 25 again!

Well, once the colonoscopy is done and pd for, despite my Dr.'s opinion of Dr. Fine (he even attended one of his seminars in our area and still came away unconvinced), I will see if we can afford the Enterolab tests. And I guess I will now try to get back on the GF diet. I did try it for a while, but maybe not long enough.

I'm still waiting to see if my insurance will cover the cost of the gene test.

Joe, thanks for your thoughts and kind wishes. I also noted Gabes' and Dee's recipes and will start there.

Thank you both for all your help. I'll keep you posted on how things progress, but it will now be late June before my colonoscopy--had to change Drs due to cost and it delayed things.

Hopefully by then I'll have something definitive to report.

Have a great weekend!

Robin

[Joefnh]

Tex from what you have read and/or experienced do most people see a significant improvement with the secondary symptoms with dietary adjustments - i.e. GF/LF/DF

--Joe

[tex]

Joe,

If I understand your question correctly, you're asking if diet changes can be sufficient to bring complete remission, (IOW, without medication). If I've interpreted your question correctly, yes, not only can they be sufficient, but they are usually necessary, in order to get completely rid of all the side issues associated with MC. I say "can", because in order for the diet to resolve all symptoms, all intolerances must be strictly avoided, (which can be quite difficult in some cases, especially for someone who chooses to eat processed, supposedly intolerance-free, foods). (IOW, some intolerance-free commercial foods seem to cause problems for many of us, for unknown reasons).

Meds, such as Entocort, will suppress inflammation, but without diet changes, new inflammation is continually being redeveloped. IOW, the meds are always one step behind the disease, in that they treat the symptoms, not the cause of the disease. Still, some of us can feel pretty doggone good, when Entocort EC works right, even without diet changes, because most of us have a finite antibody production level, below which we will not react to a given "allergen". IOW, if the inflammation is suppressed sufficiently, (even though not completely), we may not suffer any reactions. In such a situation, only if we "overdo it", (and exceed the threshold), will we experience a reaction, (resulting in clinical symptoms). This is why many members find that if they take a maintenance dose of Entocort, for example, minor "dietary indiscretions" do not cause major problems.

Polly, (one of the founding members of this board, and an MD), is a good example of the effectiveness of the diet in bringing remission. She has double DQ1 genes, which makes her a worst-case scenario, as far as number of intolerances, and severity of sensitivities are concerned, and yet she has been in complete remission for many years now, by diet alone - she never used any meds to try to control the disease, and she was probably the first member of this board, to discover that MC could be controlled by diet alone. CAMary is another example, except that her only food sensitivity is gluten. Back in the early days of internet discussion boards, many of the founding members of this board were joined in their discussions by Dr. Fine, when he was doing his original research on MC, and gluten sensitivity, and it was their sharing of information that led to the finding that diet changes could be used to control the symptoms of MC. In fact, according to Dr. Fine's research, no drugs can control the inflammation of MC 100%, but diet can.

Polly still posts on this board fairly regularly, but this time of year, (covering most of the time since you have been a member), she has so many other obligations on her time that she rarely has a chance to check in. Hopefully, in a month or so, she'll have more time to log in regularly.

I never took any meds to treat MC either. I also discovered independently that diet could be used to control MC, but I hate to use myself as an example, because I have so many other health issues, (though most of them apparently were due to neurological damage caused by gluten).

Anyway, the bottom line is, Entocort EC can do a pretty good job of resolving symptoms, but for 100% remission, (or as near to 100% remission of symptoms as is possible), diet changes are almost always necessary, for those of us who are unfortunate enough to have food intolerances as a result of the disease.

I hope I interpreted your question correctly, and this addresses it.

Tex

[Joefnh]

Thanks Tex that's more or less what I thought. So if I understand correctly, using Entocort to address the ongoing flare with both CC and Crohns, in conjunction with long term dietary changes should produce the best benefit.

I will be looking into the Enterolab tests and alternative treatment approaches after the course of Entocort is over in mid July

Thanks again Tex.

--Joe

[rbks321]

Hi Robin-

I wanted to share my experience (and answer your question) about working with MC. Please have hope that you can get back to "normal". Last Fall I was on FMLA due to running out of sick leave and vacation days. My employer has been extremely understanding. Even on the days that I was supposedly working, I was not at all up to performing my job duties. I was doing the bare minimum to get by. I was frustrated with myself and felt like a failure. This affected not only my job but also my family and personal life.

I'm one that after six months of dx, broke down and started Entocort. I had to do something! After eight weeks, I started tapering off of it this past week. It took over a week for my GI doc to get back to me. When the nurse called, she informed me that his recommendation was "take two capsules for five days, then one capsule for five days". I believe this is way too fast, but I am doing as recommended. This past week I took two daily, and I am doing alright. We'll see how it goes.....

As far as work goes, I'm back at it. My position requires that I am on-call 24/7. Three months ago I would have never been able to meet with a client calling with a crisis in the late evening. I would have to just help as best that I could over the phone or call my supervisor to cover for me.

Also, I have been able to get my life back and enjoy my family again. Watching my boys play sports and being there for them has meant more to me than anything! I did not realize how sick I was and how much I have missed until I started feeling better.

Personally, the diet changes have been the most difficult thing for me. Anyone can pop pills (and even deal with the side effects), but changing habits that I have been doing all my life has been trying to say the least. It is definitely a trial and error type thing. For example, my son offered to share his candy with me. I ate three Starbursts and felt like hell afterwards. No D, but my stomach hurt so bad that I could not eat dinner that night. I'm not sure if this was the cause, but no more Starbursts for me.

I know this is lenghty, but I hope it is encouraging to hear that you can work with this disease and more importantly get back to whatever was "normal" for you.

-Rebecca

[Gabes-Apg]

Firstly, I just want to clarify that my cooking suggestions are not in the same league as Dee's and Connie's!
Dee is the expert with substitutions for multiple intolerances.
i am just copying the cooking style of my ancestors.

it has been 6 months since diagnosis for me, main management tool is diet (GF/YF/LF/SF) with small amount of meds to get me through meetings and minimise absentism from work.

Everyone is different, you have to choose what works best for you

- give you quality of life (for family, work etc)
- what suits the budget
- and acceptance of the decisions regarding the two points above.

mind over matter, positive thinking definately helps

Mindful that even when you are in remission, it is not cured, it can return. and all of us have different triggers.

Being in Australia i have not had the enterolabs testing. I can assure you that my body sends me clear signals of what it likes and what it can not stand!
the signals can be sharp pains cramping and/or excessive gas and of course D. the D can be within 20 mins or 12 hours, this is how i gauge if a food item is in the banned list (20 mins) or the only minimal quantities list (12 hours)

good luck with processing the information and the options..... and of course feeling well

[wonderwoman]

Tex wrote

For most of us, when we achieve remission, we feel better than we have felt in decades, and yes, all the D, aches, pains, headaches, migraines, stiff joints, brain fog, etc., are completely gone.

I am still waiting for the aches, stiff joints and lack of energy to improve. I must say the hot flashes have improved 99% and that is worth a million to me.