When to call my GI for help?

CNewman · Post by **CNewman** » Wed Jul 25, 2012 10:03 am

I have been off Entocort since one round in May, when I was originally diagnosed with CC.
When I came off the Entocort, I was ok for a few days, then immediately relapsed. Since then- it has been up and down. Well, I haven't had a 'solid' day since being on the medication, just varying degrees of "Eeewww."
So it's been about two months. I am strictly dairy and gluten free. My husband is insisting I get the Enterolab testing done- no matter what the cost.
He as been amazingly supportive and wonderful.
I was pretty ok, physically and mentally, for awhile- but it's draining on me again. I am going through the gurgle gurgle, super loud noises that you can Hear and Feel going through your intestines- then jumping up and sometimes running to the bathroom. Recently, I had an accident. Probably THE MOST EMBARRASSING thing ever. My husband and I were...well. Use your imagination. And then it happened. I was, and still am, mortified.
I am now falling back into sloth mode. All I want to do is sleep. I have zero energy. I haven't been getting major headaches yet signalling severe dehydration, but I have had a few minor headaches. And my appetite is just gone. Most days I am forcing myself to eat. I haven't brought an actual lunch to work in 2 weeks. I'll go through some tea, maybe some gluten free pretzels, and ocassionally some fruit.

So when do I pick up the phone and ask the Doc for help? G-d only knows what our new insurance covers, which worries me about more Entocort- but I don't want to take any prednisone or anything- we have a bad history with weight gain. 25lbs two years ago, all because of a misdiagnosed tooth pain.

So- there you have it.
I'm tired. I'm not hungry- though I might consider chopping an arm off or giving up my first born for a fresh French Baguette and Brie with no consequences!
And I have officially embarrassed myself to the extreme!

Deb · Post by **Deb** » Wed Jul 25, 2012 10:46 am

Oh C, this disease can be so hard at times. Rest assured MANY of us have had embarrassing episodes. In fact there's a post on here discussing some of the humiliating things that have happened. I'm pretty sure the advice you'll be getting here (besides the good idea to get the Enterolab testing) is to eliminate soy. Though I have been fortunate so far that soy doesn't seem to cause me any problems that's not the norm here. It's apparently pretty tricky, though, as it is in so many forms, in so many foods and supplements. We're here to help. Deb

CNewman · Post by **CNewman** » Wed Jul 25, 2012 10:56 am

Thanks, Deb.
Soy will be tricky. Most substitutes for dairy products are made with it- and that is the only thing I am having issues with. Missing dairy so much.
but I suppose it really is the next step, having already been GF/DF for 4 months.
Speaking of which, if I have already been GF, and know I am staying GF- what tests should I get from Enterolab? Wouldn't the lack of gluten throw the results off. What about the lack of dairy.
I just want to know what I CAN eat :( ~sigh~

Post by **tex** » Wed Jul 25, 2012 1:10 pm

Trust me, you don't have the market cornered on embarrassing accidents. Most of us can recall some real doozies. The founder of the original MC discussion board (that preceded this one) was the head librarian at a brand new library in a major city. Her first hint that she had MC occurred with an explosive round of uncontrollable D as she was standing in the middle of the main lobby. As if that wasn't embarrassing enough, someone called in a hazmat team to clean up the mess (complete with the white space suits, etc.). Here are at least 3 pages of examples (as Deb mentioned):

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=15951

Regarding the EnteroLab tests: Those tests can reliably detect gluten antibodies at least a year after gluten has been withdrawn from the diet, because gluten antibodies have a very long half-life. In fact, in many cases, the tests can detect those antibodies up to two years after gluten has been eliminated from the diet.

Other foods have a much shorter half-life, though (a few days, rather than a few months). Consequently, a few months after they are eliminated from the diet, the antibody level may be too low to trigger a positive result in an EnteroLab test. It depends on how high the antibody level is at the time the food is cut from the diet. The higher the level, the longer it can still be detected.

For many of us, it takes 6 months or more for the diet to contol our symptoms, because the type of damage done by gluten causes the gut to heal slowly. Kids heal quickly, it takes adults much longer. Entocort would mask your symptoms until the diet can take control, but one of it's common side effects is weight gain. It tends to stimulate the appetite. Not everyone who takes it experiences weight gains, though.

If you want to take it, but your insurance carries an outrageous copay, a generic version (Budez CR) can be ordered from an overseas pharmacy for a small fraction of the cost of the domestic products. It takes up to 3 weeks to receive an order, since it has to go through customs, so ordering from overseas requires planning ahead. Up to a 3-month supply (270 capsules) can be legally ordered at one time, and no prescription is needed (prescriptions are worthless across borders, anyway). Most members who don't have good insurance coverage order it from here:

https://www.alldaychemist.com/1447-budez-cr-3mg.html

Good luck with whatever plan you decide to follow,
Tex

MBombardier · Post by **MBombardier** » Wed Jul 25, 2012 5:57 pm

Dairy is harder to give up than gluten. That seems to be the experience of everyone on the board who has had to give it up, so you have company in your misery. It's been almost a year for me and I still look in amazement at people who say they don't miss it.

I agree with Deb--soy is evil. It was the second thing I had to eliminate, about four months after I thought I had the problem whipped by eliminating gluten.

Deanna in CO · Post by **Deanna in CO** » Wed Jul 25, 2012 6:25 pm

C,

I agree with Marliss. I miss the bread, but I miss cheese far more.

When I did the Enterolab tests, I had been off gluten 6 months, dairy 5 months, egg and soy 3 months. My gluten antibodies were 34 (10 or less is negative); dairy antibodies were 32; egg were 11; and soy were 5. (I think the soy was a false positive, because I think I react to soy - my guess is I'd started with a fairly low level because I hadn't been eating much soy anyway since November, and then had been off it altogether for 3 months.) So it was obvious I was sensitive to gluten, dairy, and egg, even after having been off them for months.

I also recommend the genetic test if you have children, or if you have family members who might be showing symptoms of gluten sensitivity. I have 2 genes for non-celiac gluten sensitivity, which according to Enterolab means each of my parents and all of my children have at least one. Knowing this, I was able to encourage my sister, whose 16yo daughter has terrible headaches, to get serious about eliminating gluten from her diet - and it seems it is helping.

If your husband is supportive and you think you can swing it financially, doing the other 11 antigens test is a good idea. I am finding myself wishing I'd done it since I've eliminated the "Big Four" and am still reacting (though not as badly as I was in November).

I'm sorry you're having such a rough time! It will get better. You might consider cutting back to some very simple, basic things: meat, well-cooked veggies, rice and/or potatoes (no processed foods, even the ones labeled gluten-free; there are just too many things we might be sensitive to) - and keeping a food journal to see if you can figure out what might be giving you trouble. Most of us find improvement during a flare when we do that. It's not easy at first, but if it makes you feel better and does away with embarrassing moments, maybe it's worth it?

Deanna

brandy · Post by **brandy** » Thu Jul 26, 2012 6:17 pm

Hi C,

How long were you on Entocort?

Also in regards to your question about Enterolabs---I went GF on Oct 1,2011 DF on Jan 1,2012 and didn't get tested until around March 1,2012. Here are my results.

Fecal Anti-gliadin IgA 51 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 15 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 10 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 15 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 18 Units (Normal Range is less than 10 Units)

My Gluten figures were still very high when I got my results. If you decide to do Enterlob--which I found worth the money as I was stressed out about what to eat suggest do test b/f going back on Entocort if you decide to go back on Entocort. It will take about 3-4 weeks to get your Enterolab results.

In lieu of eating packaged goods I tend to do better eating rice, sweet potato, or white potato. If you are really struggling consider posting what you are eating and maybe folks can help. We're all a little different but there are some common themes.

It sounds like you have a great husband! Brandy

PS. In regards to your subject line question if you decide to go back on Entocort you may be able to call the GI nurse, tell her you relapsed and you want a refill of Entocort without having to do the Dr visit thing.

PPS. Yup, I still miss goats milk gouda cheese!

CNewman · Post by **CNewman** » Thu Jul 26, 2012 7:29 pm

Quick note : Husband got home early today, unexpectedly. He created an account, and started ordering the Enterolab test for me. I didn't know till he called me upstairs to answer the health questions. I guess he went all out and got the suggested A&C combo with the malabsortion test as well, considering my tendency to expel meals in their original form...
So, I guess I can say that I am hopeful that the test will give me more guidance than I thought we could afford.

Post by **tex** » Thu Jul 26, 2012 11:07 pm

Tex