How many "old"members using solely diet to control

[Lucy]

Hi all,

I'm wondering how many of our long term members still around or lerking have been able to be assymptomatic (without accidental ingestions or otherwise getting off the diet), and for how many years it's been since you got off the foods you showed reactions to on Dr. Fine's tests? I realize that some of you discovered reactions to things like tomatoes and corn, and wondered if any of those turned out not to be a problem after a while, as long as you stayed faithful to the things you tested positive for at EL?

If there was a period of time before some of the later tests were done, please give approximate time between the tests. In other words, I'd like to know when you tested positive for gluten and casein, as well as when you tested positive for each eggs and yeast, and later, for soy as that test came out rather recently.

By the way, I will be amazed if I have a higher than normal reaction to corn when I submit my stool for that test whenever it's made available for sale.

OK, I will start.
I had had a multitude of pretty serious symptoms over my entire body for decades, even before the rather subtle onset of the M.C. that just kept increasing to a fever pitch by the last decade before I had the biopsy results and diagnosis, and then, exactly a year later, started dietary treatment per the experience of the forerunners of this site.

I tested positive to gluten (first by eliminating it to the best of my then knowledge) in Nov.03 with all non-gastrointestinal body conditions (which were varied and awful) pretty much resolved in a few days, other than the fatigue, naturally. The diarrhea, etc., went to a fraction of it's former humongous (sp)self just about as quickly, provided I wasn't eating something that I hadn't yet discovered had traces of gluten in it, or one of my as yet to be found other sensitivities. (I diligently kept learning where the stuff was found and immediately eliminated each source as I went along with responding improvement.)

After finding that I obviously was sensitive to gluten, in a short while after that, I sent a specimen in for the full battery of the tests related to M.C., including the gene tests. This batter included only antibodies for gluten and dairy casein.

A few weeks after going the gf route, and before I got my first stool test sent in, I started using lactose free milk products, and afterwards, the smaller amount of diarrhea that I'd get a short time after ingesting milk products went away -- that was just from the lactose intolerance, not from the immune reaction or sensitivity I had to the diary casein 24 hours later -- I had two reactions to dairy products, in other words.

As soon as that first specimen was waiting for pick-up on it's way to Dallas and E.Lab, I immediately eliminated all dairy and other casein sources of ANY kind, even the lactose free dairy products, and noticed a move in the right direction in that I had most of the liquid stools gone, and my stools were still making their way toward normal formed stools at a fairly rapid pace.

Therefore, by the time the dairy test came back with the other results, I wasn't quite as surprized that it wasn't just the time it takes to heal that was responsible for the lesser types of diarrheal reactions I was having after the elimination of gluten. I had wondered before eliminating it if my gut didn't just need more time to heal, and that could've been some of it, but it was amazing how much of it eliminating both of them cut down on any liquid stools. Of course, the tests verified the gluten. I would've not been impressed if the gluten test had come back negative at that point in time, and they didn't.

In the spring of 2004, I sent in another specimen to test for eggs and yeast.
I kind of expected the egg ovalbumin to come back positive since I only ate eggs twice a week, and was having diarrhea episodes twice a week as well. Once again, as soon as the specimen was on the front step for pick-up and transport to the E.Lab, I took myself off of all sources of eggs, and sure enough, those twice a week episodes of diarrhea were gone. Sooo...sure enough, the tests came back later verifying my experience with my elimination a few weeks before.

The dietary yeast kind of took me by surprize, however, but then, I didn't eat any bread or baked goods anymore, and don't drink alcoholic beverages, so there wasn't more than just the smaller amounts of yeast one gets from eating fruits and vegetables that I was eating (that's unavoidable anyway).

The only soy I really ate anyway after that was mostly from things that were made with soy oil, but also, the "wheat-free" San-J Soy Sauce that is so delicious. When I really began to suspect soy as being a sensitivity was when my brother-in-law found and brought home some of those delicious frozen waffles made from soy flour. I'd not had much of a reaction to the lesser amounts of soy, but after that gf waffle, whammo, the big diarrhea made a big but short-lived reappearance. I just knew those waffles were too good to be true!! Never was into soy eating in the first place.

Sooo...I kept asking WHEN E.Lab was going to offer the test for soy antibodies, and it must've taken several years. I'm trying to remember whether it was after the old timers moved over to this new location??? Anyone remember when that test became available? Anyway, although I stopped eating those waffles after that, I would occasionally still eat the gf soy sauce with gf Chinese food without much of a problem. Sometimes I'd notice lots of rumbling in the tummy, however.

Sooo, think I was overdue for an updated test anyway to see how I was doing in my gut recovery, so I sent in another specimen for that along with a request to also test that stool for soy protein sensitivity. Per my habit, I immediately removed the gf soy sauce and soy oils from my diet, and therefore, didn't have rumbling in my tummy any more, and sure enough, along came the positive result for soy antibody.

I had gradually progressed up to completely normal formed stools a long time before the removal of soy completely, and still am having normal stools over five years after the initial removal of the first four foods. I am still doing well, including no rumbles after all this time. I feel fortunate in that I've never had to resort to any medication/s to get my really awful total body symptoms under control, particularly since, for so long, I'd had so many debilitating symptoms often mimicking some of the most serious illnesses there are.

I'm really amazed to even be typing this synopsis of my successful journey to wellness at this time. I'm also amazed at how well I can now tolerate all kinds of normally stress-provoking events in my life as well as tolerate all sorts of spicy or greasy foods, not that I eat all that many of them, just as long as I don't eat any of the ones I test positive for, by both elimination and E.Lab testing.

I'm just wanting to know if there are still people posting here who've continued to be free of symptoms that seem related to M.C. once the E.Lab eliminations were instituted, to the present time. It seems that so many of them left the board once they had success. I hope that any who might still be lerking will respond to this post with their own success story. I think that would be a big encouragement to those who are just now considering that food sensitivities may be related to their M.C. and other symptoms.

Thank you.
Yours, Luce

[MaggieRedwings]

Morning Luce,

I was never tested by Entrolab since #1) insurance would not cover it; #2) I could not afford it: and #3) I was pretty sure I could figure it out on my own.

When I was diagnosed 8 years ago, I immediately went Gluten Free and have continued to do so with moderate to good results - getting much better now after the long haul. Everything else listed on my bio was process of elimination and have stuck with that. It took me much longer than most but I think I have gotten things to a point that I am feeling very much better and only have a flare now and then and it usually comes after eating out even though they tell me what I am getting is GF.

Love, Maggie

[JLH]

I printed this thread to take to my GI next month. Thanks.

[Lucy]

Maggie,

No wonder it took so long to tease out your antigens to avoid -- so many of them! That took real persistence! Would you guess that you have the double HLA-DQ1 situation? Your experience seems to match those who have that combination of HLA genes. I can't wait til the connections between those combinations to specific antigens comes out in research, can you? We don't have enough numbers here on that to even postulate a theory, but the main researcher guy SHOULD be able to tell something now with all the people he's tested. Perhaps he's not even thought about this relationship -- gene pairs to specific antigen foods? Ya think? Perhaps Polly could mention this to him if she ever contacts him for something.

Hope the GI enjoys reading my diary! Ha!

Thanks for responding!
Yours, Luce

[MaggieRedwings]

Hi Luce,

I would bet my retirement - as meager as it will be - that I definitely have the double HLA-DQ1 situation. By reading and following those here that have it, I am pretty sure I also do. If I could afford the Entrolab testing, I would not be surprised by that reading in the least. It has definitely taken persistence but it is nice to see that there is a dim light at the end of the tunnel and that it is starting to burn a bit brighter.

Would love to see your BIs face. I have given up on them and am going it alone in the medical world and relying on my family here for support and advice.

Love, Maggie

[TXBrenda]

Since I'm one of the oldies that lurk, I'll share. I haven't had the EL testing. Diagnosed in April 2003 with LC from colonoscopy biopsies. After reading posts from the old board, in addition to GF I went DF for 2 or 3 weeks. By this time I had been on Asocol (sp) for a couple of months. Symptoms didn't change. Still had D. Stopped DF and continued with GF and Asocol. It wasn't until my hair started falling out did I question taking meds. I emailed Dr. Fine sometime that summer with symptoms. Dr. Fine gave me general advice. He did say that Asocol could cause D and hair loss for some people. I told my GI the medication was making my hair fall out and that I wanted to stop taking it. He wanted me to drop to half the dose he had prescribed. I did that for about 2 weeks or until I ran out of pills. I haven't looked back since. I have no D or other symptoms unless I "cheat" . Realize I'm only hurting myself.

Since I've been on a yeast free diet the last month and a half, it is easier to stay GF. I will take fluconazal (diflucan) for 7 days starting this weekend. I can't remember what I have to do to make sure most of the yeast is out of my system. I'll have to look in my book or call the phone nurse. I should be able to add some corn products and other grains - just stay GF due to the LC. Since I have to premed for invasive procedures, I'll have to resort to the strict yeast free diet to keep the yeast from taking over again. Hopefully this should boost my immune system to keep me from having so many infections.

I digress - so better go to sleep. Tomorrow is a work day.

[Lucy]

Hi Brenda,
Glad you posted, and sure hope the yeast situation improves quickly and completely.
Luce