GI doctor Visit today

Sheila · Post by **Sheila** » Thu Aug 11, 2011 12:50 pm

Today was an amazing day. I saw my GI doc this afternoon and gave him my Entero Lab results. He said, of course, "You know these tests are controversial?" I told him I did and then he read the report. When he finished reading it he told me that I probably have sprue and very definitely gluten intolerance. He suggested that I remain gluten free (forever) and in 3 months try to wean off entocort. He told me to go to the Celiac website and get their book on items that contain gluten. He is aware that it is in makeup etc. He is sending me for a celiac blood test although I don't know why he would do that. I told him I had been gluten free for about 2 months and am taking 1 entocort a day. He was fine with that. I'm thinking it is too soon to wean off entocort. I've been taking it less than 2 months. Is it too soon to stop meds?

It would have been a perfect day if I hadn't cracked a perfectly good tooth this morning. Tomorrow I'll pay an oral surgeon $2,200. to extract it and put in a post.

It is either that of look like Minnie Pearl.
Sheila

dgshelton · Post by **dgshelton** » Thu Aug 11, 2011 1:36 pm

Sounds like you found a keeper! A lot of us have had trouble with cracking or breaking teeth because of calcium deficiency. I'm so sorry you have to go through that tomorrow!

Hugs,

Post by **tex** » Thu Aug 11, 2011 2:55 pm

Sheila,

Will wonders never cease? Kudo's to your GI doc.

I've forgotten, but I assume that you have a diagnosis of MC. Right? If so, then yes, two months is too soon to discontinue Entocort if you have been on the diet for only two months, but if I read your post correctly, he said to discontinue it in 3 months, (for a total of 5 months of treatment), and that might possibly work, (if all goes well), but it still might be too soon.

If you don't have MC, of course, then the Entocort should be unnecessary, because you should have already responded to the GF diet, (if you only have celiac disease). I wonder if he might have forgotten that you have MC, and he thinks that he's only treating Celiac sprue?

Tex

Sheila · Post by **Sheila** » Thu Aug 11, 2011 6:57 pm

Yes, Tex, I do have CC and perhaps he is forgetting about it. He seemed pretty surprised by the results of the genetic tests. He has treated other patients with celiac because he told me about a patient who had trouble controlling her disease because there was gluten in her makeup. I do not EVER want to experience those months of monster D and illness. If I stop the entocort too soon and the D comes back will the entocort work a second time? The D stopped the very first day I took entocort. I also have all of those other food intolerances and I have not yet stopped eating any of them. I have modified my diet and I don't eat very much dairy or egg. I do eat soy and that's probably not too smart.

As my son would say, "What a banana!!"

I read somewhere that there are more people with celiac found in SW Ireland than anywhere else. My mother's family is from the Dingle Peninsula in SW Ireland so I guess I come by this disease honestly.

Post by **tex** » Thu Aug 11, 2011 7:24 pm

Sheila wrote:If I stop the entocort too soon and the D comes back will the entocort work a second time?

As effective as it seems to be for you, yes, surely it will work a second time. Some members have found that it often/usually takes longer to start working, in successive treatments, though.

Yep, your gluten-sensitivity appears to qualify for a pedigree.

Tex

sarkin · Post by **sarkin** » Thu Aug 11, 2011 8:45 pm

Sheila,

I believe you & Tex have very similar genetics, and you and I share that 0201 gene. I have been guessing that my mother's father was the source of that 0201... and I believe his family was from Cork... also SW Ireland. (Also have non-celiac gluten sensitivity from the 'other' side - and enough symptoms on both sides that I'm not sure who had which gene.)

What great news your GI doc is a good one. ALL my sympathy about the demands of giving up various foods - I have not taken Entocort, and am doing all this by diet alone. But if I were not making progress, that would be my preferred Rx option. I think you should look on the prescription as an awesome opportunity to rein in this beast by dropping all the problem foods you can, and dropping them 100% - because when you do taper off, if there's a little bit of irritating food left in your diet, the effects will come screaming back when the Entocort isn't there to soften your body's response.

The Entocort buys you time to do things like - reconfigure your pantry, tweak your recipes, research alternatives... etc. But if you don't do those things, it might turn out that the effectiveness of the medication is masking some symptoms you really (really!) don't want to see again.

My food list is similar to yours - a little inadvertent dairy now makes me almost as sick as gluten, but the effects don't last as long. But with either of them, it takes the better part of a week to get back to "normal" (my new normal). A very small amount of eggs made me feel really horrible - but only for about a day. I'm only saying this let you know that you might be able to feel a lot better, by truly eliminating the foods on your list. I fondly hope that some day I can include small, occasional amounts of egg in my diet again - but I believe the only way to get there is by avoiding them, hard-core, until I am more healed. That might be true for you, too. Our beloved Tex is now able to eat foods that formerly made him react, after a very limited diet and a lot of healing. (If genetics is key in this, you're better off listening to him than to me!!)

I hope this helps and is not intrusive - and I hope your healing just gets better and better,

Sara

Sheila · Post by **Sheila** » Fri Aug 12, 2011 11:06 am

Thanks, Tex, I think I will ask my doc for more months to taper off the entocort. I don't want to relapse and I'm still not 100% off my other intolerances. So far as I know, I've had no gluten in about 2 months. I'm only eating eggs which are cooked into or baked into something. Same thing with milk products. I am eating soy.

I haven't had any adverse symptoms except for an occasional bout of stomach cramps that quickly dissipates. BTW, are egg whites less of a problem than egg yolks?

Sara, if only I could handle this the way you have, I would. The entocort put a stop to the D and that was all I really cared about. I felt so terrible and was just grateful to get out of the bathroom and back into bed at night. Any of your suggestions are welcome. This tooth that was extracted this a.m. is hopefully my sweet tooth and I'll be able to resist that tofutti ice cream with chocolate chips on top or the hazelnut crackers with Nutella. I have gained back about 8 lbs that I lost and am at my usual weight. I have to get my diet organized and get into a routine. No more lousy tasting GF bagels that break teeth, for sure. The ones that are left are going to become bread crumbs.

I have been dependent on quinoa tabeulla for lunch almost every day and for munchies. I put chopped tomatoes, scallions or shallots, cucumbers in it with an oil, vinegar and lemon juice dressing. Is there anything in there that could be causing trouble? Are we not supposed to eat lettuce? I've seen that mentioned and don't understand why lettuce would cause problems.

When I remarried 4 years ago, we went to SW Ireland for our honeymoon. I'm wondering if the trigger for celiac and MC could be Irish beer? If so, that's were I got it.

Well, I'm starting to look like a chipmunk and the novocaine is beginning to wear off. The size of the screw in my jaw is very impressive looking. I look a bit like Minnie Pearl if I smile big. EEEK!!

If there is anyone is southeast Florida looking for a gastro doc, mine is a keeper, I think. He's Bernie Stein in Jupiter, Fl.

Post by **tex** » Fri Aug 12, 2011 12:09 pm

Sheila wrote:BTW, are egg whites less of a problem than egg yolks?

Actually, it's the egg whites that most people are sensitive to, (if they're sensitive to eggs). It's not impossible to be sensitive to the protein in the egg yolks, but it's very rare for that to be the case. Because of that, the Enterolab test only tests for antibodies to the primary protein in the egg white, (if they tested for both, the cost of the test would be doubled).

We're all different in the salad ingredients that we can tolerate, of course, but many of us could probably handle the ones you mentioned, so long as we didn't overdo it. I never was sure about tomatoes, so I avoided them, and onions and lemon juice were a problem for me, while I was recovering, but YMMV.

Lettuce, (especially iceberg lettuce), apparently contains some of the most abrasive fiber in existence, because it almost guarantees a reaction by most of us, (until our gut heals), simply because it irritates our gut, if our gut is inflamed, (which it is, until it heals). If you just have to eat lettuce, romaine is a much safer choice than iceberg. There are probably some other choices that are just as good - I'm not a lettuce expert, since I never eat the stuff. Back when I was reacting, lettuce would make me so sick, that I never resumed eating it, after I healed.

Tex

Sheila · Post by **Sheila** » Fri Aug 12, 2011 2:56 pm

The only salad I like is Caesar salad and since the dressing has egg, that is out for now. I don't much care for salad, would rather have a hamburger, but I'm looking for other types of meals that I can eat. My doctor tells me I'm hypoglycemic and that's why I'm hungry all the time. I eat little bits and pieces off and on all day. I've been munching on the tabbeula and I think I've overdone it with the raw veggies in that. Okay, no salad and a good excuse not to eat it. Thanks.

With you, Tex, once your gut was healed you could go back and eat things that previously made you sick. Is that correct? If my Entero Lab results show that I'm intolerant now could that just be becaue my gut is inflamed? Once I'm gluten free for a long enough time and my gut is healed, is it possible those intolerances will go away? I know GF is forever and that's okay. It would be nice to think that I could have an omelet or cheese again someday.
Sheila

Post by **tex** » Fri Aug 12, 2011 5:16 pm

Well, yes, it's generally true that I was able to eat a lot of the foods that I had eliminated while I was healing, but the only Enterolab food-sensitivity tests that I had were for eggs, yeast, and soy, and those tests were done 2 years and 8 months after I started the GF diet, and approximately 15 months after I was in remission. The results were all negative, but I have no way of knowing what they would have been before I started the diet, (though they probably would have been negative.

). When I started the diet, I wasn't even aware of the existence of Enterolab. I didn't find out about it until almost 2 years later, when I stumbled across the old board, on the internet, and that's when I discovered that I wasn't the only one in the world dealing with this problem.

Thinking back, the only one of those 3 foods that I had avoided, was soy, (I still avoid it, simply because I don't believe that soy is a suitable food for humans), but I ate small amounts of it for a few months just prior to taking the test sample, so that the test would be valid. I didn't test gluten or casein, because they had been out of my diet for a long time, and I had determined by my own testing that I was definitely sensitive to them, (both lactose and casein, in the case of dairy). I had never eliminated eggs from my diet, except for a couple of test trials of a couple of weeks duration. Eggs were a mainstay of my diet, during my recovery. I did the test mostly because I was curious about soy and yeast, and the third test, (for eggs), was free. And, of course, I was curious about my genes, and my gene test results were identical to yours.

However, about 9 or 10 months after I received my Enterolab results, I found that I was able to able to reintroduce dairy products back into my diet without reacting to them, and I was able to add corn back in, most fruits and vegetables, and most sugars. Of course, at first, I avoided overdoing it, but as time went on, it was clear that I was able to tolerate those foods, even if I pigged out on them.

I still have problems with grapes, most nuts, and of course, I'll never intentionally eat any gluten ever again. I don't eat much dairy products, even though they don't seem to bother me, since they're probably not good for us. I occasionally eat a little ice cream, (maybe once a week), but most of the time, I use almond milk, if I need any milk for cereal, or whatever, and I no longer eat cheese, because of the potential mast cell issues. I would prefer to substitute one of the non-dairy ice creams, if any were available locally, but I'd have to go a long way to find a decent one around here.

Soooooooo, I don't know if having identical genes will have any bearing on your ability to add eggs, dairy, or soy back into your diet someday, or not.

According to Dr. Fine, the answer is no, but he also says that a positive test for yeast, indicates a life-long sensitivity to yeast, and we have found that for most of us, that does not seem to be true, so we can certainly hope that he may be wrong about some of the other foods. Time will tell.

There's a wild card here, of course, and that's gut bacteria. It's known that gut bacteria populations can actually alter the way that we respond to our genes. Therefore, it's certainly possibly that in some cases, certain food sensitivities might fall by the wayside, if we happen to be fortunate enough to be able to evolve, (or restore), a gut bacteria population that is capable of restoring our previous, (prior to MC), symbiotic relationship between our gut bacteria and our genes. I'm guessing that's what happens with yeast-sensitivity. Apparently, when Candida albicans is controlled in our GI tract, the prevailing bacteria population, (in virtually every case), is predisposed to reset the genes that cause yeast-sensitivity. (How else can this phenomenon be explained, because it seems to be the rule, among the members of this board who receive positive results on a yeast test?) Obviously, this is just a wild theory of mine, so please don't argue with Dr. Fine, or your GI specialist about this, because they will think that you are as nutty as I am.

Tex

Sheila · Post by **Sheila** » Sat Aug 13, 2011 5:26 pm

thanks, Tex. This is my second reply. I cannot send a ms. to the board on my desk top computer. I can send on our old laptop. Really strange. I eliminate the cookies and log out so I don't know what the problem could be.
I've avoided eating eggs straight up but am eating them (just a little) when cooked into or baked into something. I'm eating tofutti ice cream (soy)

I know I shouldn't but my sweet tooth is insistent and my willpower when it comes to chocolate not good. Eggs have been my comfort food when I don't feel well and I just can't believe they are bad for me. I haven't had any, and won't for a good long time. Very slowly I'm eliminating the dairy, eggs and soy. Not totally free yet but getting there. Life has been quite stressful the last few months and I've gotten through all of it without any D or stomach issues. I can thank entocort for that, I think. Now I need to get my youngest son diagnosed and off gluten. I know I was pretty stubborn when young but I don't think I was quite as bad as my kids.
Again, thanks Tex for all the input.
Sheila

sarkin · Post by **sarkin** » Sat Aug 13, 2011 8:15 pm

Sheila, you sound as though you're doing great.

I had a bad reaction to quinoa (which I enjoyed for years) while my symptoms were in full bloom - go figure.

There are some fabulous non-dairy/non-soy ice creams that I think are way better than Tofutti. I've been on a home-made kick (bananas + freezer = YAY), but we also the So Delicious brands, which are coconut-based. If the Sharon's brand of sorbets is available in your area, they area amazing.

Tex, I will be packing my ice-cream maker when I get down there for a visit. The banana confections don't even need an ice-cream maker, but I sense we're going to have to get high-tech to make your non-dairy ice-cream life as good as it deserves to be.

Love,
Sara