I'm confused... again

[Leah]

Hi All. So my Enterolab tests came back and they say I am not intolerant to anything. At first i thought "great"! But then Tex told me that I am probably one of those people who don't produce antibodies ( selective IgA Deficiency), so the tests tell me nothing! I will take the blood test to determine if I am one of those people, but Carol said that she had the same thing happen and her blood test was normal, but that she still stays away from gluten, dairy ,and soy. I just don't understand how these things can be causing inflammation if there is no anti-body response. Doesn't the MC itself cause the inflammation? I am so confused as to what to do.... and while i am on Entocort, I can't really "test" foods.

Another question: How long should one be on Entocort? How do you know whether you are healed enough to go it alone? I am slowly stepping down the dose, but is it too soon after only one month? Or do I give it a longer period of time to heal and just enjoy the fact that I feel good right now?

[tex]

I just don't understand how these things can be causing inflammation if there is no anti-body response. Doesn't the MC itself cause the inflammation?

No. The inflammation comes first. IMO, our genetics determine the disease that will result from the inflammation.

You have an antibody response, (otherwise you wouldn't have symptoms), you just don't have an appropriate test available that will detect those antibodies. It's possible that an IgG test might work for you, though IgG antibodies are the result of "mature" reactions, so they aren't very good at detecting acute reactions.

How long should one be on Entocort? How do you know whether you are healed enough to go it alone? I am slowly stepping down the dose, but is it too soon after only one month? Or do I give it a longer period of time to heal and just enjoy the fact that I feel good right now?

If I were in that situation, I would allow at least 8 weeks of remission, before attempting to taper off the Entocort, because it virtually always takes at least a year or more for the damage to the intestines to heal, so not much healing will take place in only a month. Your body will let you know if it's too soon.

Tex

[Leah]

Thank you so much Tex for the input. I'm so frustrated right now. I did go today to have the IgA blood test done, but I'm not holding out much hope that it will tell me much. I called the Lab and they put me on with the nurse. She said that I shouldn't have been taking the Entocort ( it was about 10 days worth) while giving a sample. How was I to know that? It was nowhere in the literature! It just doesn't seem right to charge me $700 for me to get no results. I'm sick about it. I really couldn't afford it in the first place, but thought my health was worth it.

Anyway, thank you for telling me that it takes about a year to heal. Maybe I won't be in such a hurry to get off of it.
Leah

[carolm]

Hi Leah,

but Carol said that she had the same thing happen and her blood test was normal, but that she still stays away from gluten, dairy ,and soy

I think it was Marliss that had the same thing happen as you so her advice will be valuable to you.

I had the Enterolab tests run but was told that it would be best if I were off of Entocort for 8 weeks OR I could take an IgA blood test to make sure I was producing IgA again after getting off of Entocort, then have the tests run. I just wondered if you mentioned that so Enterolab knew that was your situation. Since you did I would think they took that into account.

I was on Entocort for 4 months. I started to taper off from 9mg to 6mg after about 9 weeks, then stayed on 6mg for another 4 weeks, then to 3mg for about 10 days and finally every other day for 5 days. I should have tapered a little quicker but was reluctant. I was having cramping that turned out to be a side effect of Entocort. I felt better every time I decreased the dosage, even though I was nervous about dropping the dosage. Once I was off I can see that my Dr. was right to prod me a little.

I agree that I think you will know based on your reaction, if it's time to decrease or not.

take care,
Carol

[tex]

She said that I shouldn't have been taking the Entocort ( it was about 10 days worth) while giving a sample. How was I to know that? It was nowhere in the literature!

Actually, the only risk with Entocort is that it might suppress your immune system, if you take it long enough. Since research shows that less than 19% is absorbed into the bloodstream, most people would have to take a full dose of Entocort for a minimum of 6 months, and in many cases, a year or more, before it would begin to significantly suppress their immune system. After only 10 days, there is no way that it had any significant effect on your immune system.

From EnteroLab's viewpoint, of course, it is the patient's responsibility to be aware if selective IgA deficiency is an issue. If your IgA test shows that you are, indeed, producing normal amounts of IgA, then either you are not sensitive to those foods, or something went wrong with the tests. Actually, there's another possibility, but let's see how that IgA test turns out, before deciding the next step.

Tex

[brandy]

Hi Leah,

I was on Ento for 4.5 months. (GI doc prescribed it for 3 months). When I first started lurking on this board there was a huge amount of discussion that if you go on Ento stay on it minimum of 3 months for best efficacy and that a lot of people do better on it 4-6 months with long taper. By better I mean less risk of relapse. This is an extremely important topic. You might want to search the archives at the top. I'd recommend maybe use "taper" as the search word as Entocort is probably too broad. It would be well worth an hour or so of your time reading previous threads.

Interestingly my experience was the exact opposite of Carol's but we got to the same place so I guess that is what matters. Basically when I got constipated I stepped down to the next dose. I went thru the upper stepdowns pretty fast but on the lower end I was on some levels for almost 4 weeks. For example week 9-12 I was taking 1 Ento every three days. At the end of 3 months it was kind of seductive, i.e. I felt like I could jump off. However my original plan was to try to stay on 6 months as recommended by the board plus the holidays were coming so thought I should stay on Ento thru the holidays. Looking back I'm glad I stayed on the extra 6 weeks. I never really knew that I was healed enough to go it alone. At 4.5 months I was taking one pill every 5 days and my pill day came up and I flat out could not longer deal with the dizziness so I stopped.

Suggest consider the following before stopping: 1. You want to feel extremely secure/confident with your ongoing food regimen. 2. If you have upcoming stressful situations like holidays, divorce, family issues, moves, job issues, etc suggest staying on Ento somewhat longer before stopping.

One good thing about staying on Ento slightly longer was it allowed me the option to test peeled apples, unpeeled apples, shortcut carrots and the fruit and nut bars that Zizzle talks about so I tested these the last two weeks before I got off of Ento and this gave me a lot more snack options. During the 8 weeks after my last Ento I tested nothing new. This was perhaps somewhat extreme but I was freaked out about relapse.

I was kind of freaked out about getting off of Ento and even did some lurking on the Crohns and UC forums as they also take Ento and to see how they handle the taper. Learned nothing insightful there other than it was good to come back to our forum.

You asked extremely important questions. Brandy

[brandy]

Hi Leah,

Also agree with Carol that every time I decreased the dosage I felt better. I think once or twice I stepped down too soon. It wasn't a big deal. I just reversed the step down the next day for a little while till I reattempted. Brandy

[Leah]

Thanks to you all. it's so helpful to hear how you all have done this.

Carol, sorry, you are right, it was Marliss who has had the same results, but you have also been so helpful. I was feeling so defeated ( a few tears) until I read all of your helpful posts. Patience, patience, patience.

Tex, I will let you know what my blood test says and maybe you can help me figure this all out. I really appreciate all of your knowledgable help.

I have a three day fitness conference starting early tomorrow morning. Better go pack some "friendly" food to take along.

Thanks again
Leah

[tex]

Leah,

I hope the conference goes well.

We'll figure out something. If nothing else, maybe we can salvage a few clues from your EnteroLab results.

You're most welcome,
Tex

[Leah]

Hi Tex and thanks for the support. I don't know if you saw my last post, but I got the blood work testing my IgA level . Low and behold, it was barely there at all! The only thing we can get from the Enterolab test is that although everything was extremely low, Gluten was higher than everything else.

Now I am asking my doctor to test my cortisol levels. The nurse from Enterolab told me I should do that. I read up on the adrenal gland and how having sustained high levels of cortisol can do so many things to you. I have many of the symptoms. I'm hoping that I am getting closer to some answers.

I survived the first day of the conference, but I'm tired. 4 out of the 5 classes was a work out- literally. By Sunday, I might be crippled ! ha ha

[tex]

Hi Tex and thanks for the support. I don't know if you saw my last post, but I got the blood work testing my IgA level . Low and behold, it was barely there at all! The only thing we can get from the Enterolab test is that although everything was extremely low, Gluten was higher than everything else.

Yes, I responded to the other post.

My question about the test results was basically how gluten scored compared with everything else. If it was the highest score, that probably clinches at least gluten-sensitivity, but as you say, all we can do is guess. We really can't salvage much information from the test results, unfortunately, if your IgA production level is almost zero.

Hopefully, the first day of the conference was the most demanding, and tomorrow and Sunday will be a lot more enjoyable.

Tex

[Leah]

Gluten was a 4 and the other four (egg,dairy,soy,yeast) were all ones. Then everything on test C was below a 1.
What a waste of money. So frustrating. Carol had some good ideas about stepping down the Entocort and how she started testing some foods when she was taking like one pill every few days. I am going to step down slower than I originally thought - try to give myself the best chance possible to heal.

Hey Tex, how do you put a picture on your profile? Can it be done with a Mac?

[tex]

Wow! You weren't kidding when you said that your IgA level is close to zero. I don't believe that anyone has ever reported numbers that low from the Enterolab tests.

That sounds like a workable plan for tracking down food-sensitivities while tapering your Entocort dose.

Hey Tex, how do you put a picture on your profile? Can it be done with a Mac?

There's a place in your profile, (in the avatar section), where you have the option of uploading an avatar image from your computer. As far as I'm aware, it should work just fine with a Mac.

There's a fairly small limit on the size of the image file that the system will accept for an avatar, (6kb max). Usually, if you modify the image file so that the dots per inch, (dpi), do not exceed 72 dpi, (which is the normal display limit), and re-size it so that the maximum photo dimension does not exceed an inch and a half to 2 inches, the system should accept it.

If you have trouble getting the system to accept it, or you don't have a way to re-size it, just e-mail it to me, and I'll be happy to re-size it and upload it.

Tex