Newly Diagnosed Newbie

Robin.booboo · Post by **Robin.booboo** » Sun Nov 13, 2011 6:16 pm

One thing that recently tripped up someone I know - gluten free does not mean "barely any." To really know whether it's working, the diet has to be absolutely free of wheat, barley, rye, probably oats, and foods that contain those things (or extracts like barley malt).

Hi Sara!

I think that is the part I am most worried about. I have changed my diet numerous times, some to more extreme a degree than others, but it's never easy and if you fall off, you can always get back on. With the gluten free diet, from what I understand, there can be no traces of gluten, so even if something is made in a plant that also processes a gluten-containing substance, it will harm you. Very tricky. Very rigid.

It sounds like I don't really have a choice, unless I want to take meds for the rest of my life. That actually doesn't sound so unappealing to me, since the imodium has really helped me a lot.

EXCEPT... I have a very strong suspicion that if all I do is take the imodium without changing anything else, it will get worse over time (hence, my posting here). If it gets worse, then my GI said I can take up to eight (8!) imodium in a day - which quite exceeds what is written on the container. If I get to the point where that no longer works, then the GI said they would move me to a different medication. He said they change the meds in order of least toxicity to most, so the longer it goes on, the more toxic meds you need to control it. I know I am jumping way ahead here, since it only takes 1-2 imodium per day for me to control it right now, but this still concerns me - I am a planner and a very analytical person.

I came across one post in my research where the person with MC was told that it is a question of quality of life versus quantity and that if you have to go on the steroid meds it is very effective, but you lose years off the end of your life. I don't know if that is true, but if it is then I certainly want to avoid that fate!

Thanks,
Robin

desertrat · Post by **desertrat** » Sun Nov 13, 2011 6:19 pm

Robin, hate to get graphic, but I was wondering what you mean by saying you get D while you are taking your Immodium. I had a script for Entocort in my hand when my watery diarrhea suddenly became less. ( I had taken a few Immodium the day before was amazed that my watery D was now more like soft mush.) I decided to hold off on the Entocort and see how the Immodium works. So, is your D more or less firm with the Immodium or is watery?
Mandy

Robin.booboo · Post by **Robin.booboo** » Sun Nov 13, 2011 7:31 pm

Hi Mandy,

No worries, I've had to get about as graphical as I can imagine with this thing.

So, when I first started taking the Imodium, I had been going pretty uncontrollably to the toilet (including waking up in the middle of the night to go), at home, and barely controlling it at work.

What was happening was, I would be feeling fine and normal, then I would get hungry and I would eat something. Almost as soon as I swallowed and the first couple of bites would hit my tummy, it would start rumbling massively, then I would generally try to hold it since I work full-time in an IT job, and it isn't easy to take a break every five minutes. There would come a point where either, I felt so much urgency that I would have to immediately head to the Tenth floor to evacuate my bowels, and hope and pray nothing would come out while I was on the way there, or if it was not so bad, I was able to attend meetings and people would hear the rumbling and comment, like, "oh, haven't eaten yet?" or "Hungry?", but I could feel it could wait until the meeting was over. There were only a few times where I felt like I was helpless and I was ready with my explanation if anybody stopped me at the elavator - I was all ready to tell them, "I have a digestive issue and I am in distress. Please excuse me!"

Anyway, since I began taking the Imodium, about six weeks ago now, I think, the frequency of all this has been VASTLY reduced. Now, as long as I take my Imodium in the morning (one pill), I no longer start to rumble instantly upon eating. My frequency of visits to the restroom has dropped drastically from around 12-15 visits per day on average, all with completely liquid water D, containing some bits and pieces of partially digested food, to closer to 2-3 visits to the restroom, mostly with mushy, fluffy but not formed bm's. I still have mostly watery poops (had two last night when we attended a boxing party at a friend's house), but now they are MUCH less frequent, and I am having some of the mushy, partially formed kind, and I have even had 3 or 4 actual normal poops now, since going on the Imodium, so that's an average of what? One to two per week that is normal since starting the Imodium?

However - as I mentioned earlier - I am now starting to see that this is no long-term solution, since some days have already been worse than others and I have had to take more Imodium to control the symptoms, and I have only been following this regime for around a month and a half now.

I have noticed I have much fewer problems when I eat a lot less (like only a few bites of food) - but I also have trouble telling when I am hungry, since I have not had these problems before, and all my life, discomfort in my tummy has always meant that I am hungry. That seems to be a dangerous asumption now, and I am trying to train myself out of that belief.

Thanks,
Robin

Post by **tex** » Sun Nov 13, 2011 7:35 pm

Robin wrote:Most of my family gets migraines, but my GI said the MC is not genetic (I specifically asked if my kids could get it and he said 'No'). Is he wrong about that, too?

Well, it appears that your GI is wrong, because I can cite references by medical researchers that contradict his claim. He was obviously guessing, and never bothered to research it. We all have genes that predispose to MC and to gluten-sensitivity, and we had to inherit those genes from our parents, because we get one gene in each category from each parent. Some of us have celiac genes, some of us have non-celiac genes that predispose to non-celiac gluten-sensitivity, and some of us have one of each. But we all inherited them from our parents - that's for sure. And when we think back, most of us can remember some very suspicious symptoms that one or both of our parents always tried to hide, because in their day, no one talked about bathroom habits. In fact, it's not very common anywhere, even today, except on this board, where it's a necessary part of learning how to live with the disease.

Robin wrote:I came across one post in my research where the person with MC was told that it is a question of quality of life versus quantity and that if you have to go on the steroid meds it is very effective, but you lose years off the end of your life. I don't know if that is true, but if it is then I certainly want to avoid that fate!

That claim may well be true for prednisone, and similar systemic corticosteroids, but fortunately, research shows that less than 20 % of the active ingredient in Entocort is absorbed into the bloodstream, so that the Draconian side effects so common with long-term use of conventional steroids, are not nearly as likely to develop with the use of Entocort. It's not totally risk free, but it seems to be several orders of magnitude safer than any of the other corticosteroids, because it is encapsulated, so that it is absorbed only in the lower third of the small intestine, and the colon, and only minimally in the bloodstream, where it would be circulated all over the body, to cause damage to the adrenals, and other organs. All the other corticosteroids, of course, are systemic.

Tex

JLH · Post by **JLH** » Sun Nov 13, 2011 8:01 pm

newbies.

Here is something for your dear Dad:

http://www.huffingtonpost.com/dr-mark-h ... 79089.html

We all would be sick as can be if we hadn't found this site and Tex, Dr. Polly (pediatrician) and the rest of the Potty People. Tex says you can get your life back and you can. It may not be the perfect carefree life you had before diagnosis but it will be much better.

Look at our test results from www.enterolab.com posted on this site. Also, visit it and read info from a real GI doctor.

Robin.booboo · Post by **Robin.booboo** » Sun Nov 13, 2011 8:23 pm

Hi All,

I can reach the Enterolab web site, but not the lab results posted on this site. I am guessing I need a certain number of posts before I can take a look?

Thanks,
Robin

Post by **tex** » Sun Nov 13, 2011 8:31 pm

Here are the Enterolab test results:

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

To find most of these other forums, you have to go the index page of the site, (the main page), and scroll down the list to find the one you're interested in.

Tex

Robin.booboo · Post by **Robin.booboo** » Sun Nov 13, 2011 8:50 pm

Holy Cow,

I thought the results would be immediately clear, but now that I have seen them, I am trying to figure out how you guys understand them without a Lab degree... I guess you are looking for certain things that were tested for and then seeing if your result was above or below the number listed as the norm? So many of the results are multiple 100x higher than the listed "norm". What's up with that???

Is it really and truly that far off?

Thanks,
Robin

Post by **tex** » Sun Nov 13, 2011 9:29 pm

Robin,

Those are just the actual antibody results. The lab test results come with detailed explanations to help with interpreting the results, and we also learn by comparing notes.

The higher antibody test results usually indicate years of reacting to those foods, because over time, the immune system produces increasing amounts of antibodies, as the reaction continues. Gluten antibodies have a much longer half-life than the other food-sensitivities, so they tend to linger longer, which allows the levels to build up higher. The numbers are not necessarily indicative of the severity of reactions, though, and all that really counts is whether or not they are above the threshold for a positive test result.

Tex

Lesley · Post by **Lesley** » Sun Nov 13, 2011 11:41 pm

Hi,

I am also relatively new to this disease, and to this forum. Believe me, I understand what you are going through. My doc refuses to admit that there is any dietary basis for this illness. He refuses to support me with the testing and/or the changes. He knew enough to diagnose me, but when I said I have cramping, bloating, gas etc., and alternating D&C, (not to mention the headaches, the joint and muscle aches and the exhaustion) he said I probably had IBS. That's how knowledgeable he is, although he touts his 25 years of experience. With other GE diseases, I'm sure, but NOT with this disease.

I started with the elimination diet, eating only chicken, rice and bananas for 2 weeks, until I got my test results, which showed that I am sensitive to both. So I am now GF, SF, RiceF, EggF, DF, Chicken free And just about everything else.
Now I am eating meat and potatoes, morning, noon and night, and I added in a couple of overcooked green veggies to try, but I am getting some reaction, so I may have to go off those again.

And yes, I have had numerous auto immune illnesses over the years. Have been on a gazillion meds and more to take care of the side effects.

Had I not found this board, I would not have known what to do. How to move forward. How to have any hope things would improve. No matter how much I moan and complain the people here understand and help me over the "humps", which occur daily, hourly almost.

I hope your dad and partner realize that what you are doing for your health is absolutely necessary. Once they (and you) accept this as part of your life things will be easier. At least that is what I have to believe. Not quite there yet.

Stanz · Post by **Stanz** » Mon Nov 14, 2011 12:17 am

Robin,

This is and has been a journey for all of us here and I will be forever grateful for the friendship and knowledge I gained here when I was at my lowest point and feeling hopeless.

The simple fact is that "we are what we eat" and our doctors should know that and they don't and ultimately it is up to us to cure ourselves. Going GF was the easiest thing I've ever done in my life and I'm grateful that I apparently don't have other intolerances. I know it's overwhelming when you are first encountering this and trying to figure things out.

The Enterolab tests have been expanded and improved since I did mine 2 yrs. ago, my daughters and grandkids also now know they are gluten intolerant and can act accordingly. My youngest grandson was dx as possibly having crohns at 10 mos., he literally reacted from his first "cracker". At least we know and that is huge.

draperygoddess · Post by **draperygoddess** » Mon Nov 14, 2011 7:50 am

Hi, Robin!

I have a very strong suspicion that if all I do is take the imodium without changing anything else, it will get worse over time

From my experience, this is definitely the case. My symptoms were well-controlled with Immodium for several years, but the episodes became more and more frequent, and eventually I had a really bad day (on a business trip, in Las Vegas, right before I was supposed to go to a show) that I could not get under control. THAT scared me into finding out what was really wrong with me and how to get better. I would say I'm in remission now, without medication, because of changing my diet and getting off a medication known to trigger MC.

I thought the results would be immediately clear, but now that I have seen them, I am trying to figure out how you guys understand them without a Lab degree

No, we just have Tex and Polly!

Zizzle · Post by **Zizzle** » Mon Nov 14, 2011 9:52 am

Robin,
I also have LC, diagnosed 2 years ago. I'm 37. It took me a year of trial and error with Pepto Bismol tabs and various food avoidance measures (lactose, spicy, greasy), to figure out something else was making me sick. Turns out I am gluten and dairy intolerant, as are most people with MC. I got testing through Enterolab.com, which confirmed my suspicions, and I also learned I have one celiac gene. Believe it or not, I had 70% improvement in my symptoms within DAYS of going gluten free. It was amazing. Even my random aches and pains, mood issues, and low energy disappeared.

I've also had the weird, random autoimmune issues and rashes you have. Itchy, bumpy rashes on my hips and buttocks, bumpy rashes on my arms, malar rashes on my face. I've had terribly high circulating auto-antibodies for 6 years, and all my docs think I'm headed for Lupus, RA, autoimmune hepatitis or worse, but they never seem to fully develop. I say, can't I prevent this train from reaching the station!?! I've been on a GF/DF and largely soy-free diet for one year and I feel great. I'm not in 100% remission but I have my life back. I take vitamins (especially, Vitamin D3, calcium, and B vitamins), GF/DF Culturelle probiotic, and occasional Pepto Bismol tabs for flare-ups. After one year on the GF diet, my crazy ANA level dropped by two-thirds. That spells hope on the autoimmune front. I have a doctor's appt today with an integrative medicine doc. Hopefully I'll learn more and have a renewed sense of hope about my treatment of my autoimmune "potential."

I'm glad you found us!

Robin.booboo · Post by **Robin.booboo** » Mon Nov 14, 2011 7:48 pm

Hello and thank you all! I think I am going to start the gluten free diet when we get back from visiting my folks. I am getting a little lost with all the acronyms, I figured out GF is gluten free, but what is DF, SF, etc? Is rice ok when you first start? How about quinoa?

desertrat · Post by **desertrat** » Mon Nov 14, 2011 8:01 pm

Robin, I think DF is dairy free and SF is soy free. Don't quote me though. I, too am going on a gluten free diet. However I don't know how. Is there a list on this forum for gluten free foods? You know, a list of things in the supermarket? Also, I've seen gluten free but not yeast free on some products. Would it be better to find products that include both? And then, I've seen gluten free, dairy free, soy free, yeast free on some products too. Sigh. Problem is, if you just go plain old gluten free and you are sensitive to the others, doesn't just going gluten free negate everything you are trying to help? Yeah, I'm lost too. LOL Anyone out there can help us Zonie girls? Anyone? Bueller? Anyone?