New to the Group and need some help...

[Margaret]

I was diagnosed with MC last April. I have been suffering with what I assume is a "flare up" for the last 8 weeks. I am taking Asacol,Prednisone, Immodium, along with other meds for neuropathy in my legs. Yesterday was pretty rough with bloating and pains moving all around my abdomen - hardly slept last night. Can someone tell me if all this is considered normal when having an upset of MC? The Immodium does help but then I am afraid it will make me constipated. How long do these flare ups go on?? I haven't been able to leave the house for the last few days but it's so hot here I don't care. Thanks for any suggestions or help you can give this old girl!! Margaret

[Zizzle]

Welcome Margaret!
I'm surprised that all those heavy-duty meds aren't working. You do sound like you're in a typical MC flare. The only place left to go is diet, and as we know here, eliminating gluten, dairy and possibly soy, are the best ways to combat your flare and your MC for good. Please read everything you can here, and notice all the members who have gotten significant improvement, even with just diet alone. If you're lucky, you may notice improvement in as little as 2 days on the diet (I did). For others, it can take longer. But remember you can't just cut down on gluten to see results, you must eliminate it altogether. Please keep us posted, and feel better soon!

[Margaret]

Thanks so much for the quick response!! I am going to try these changes and will let you know how I make out. Now I need to figure out what I can eat!!

[Zizzle]

Incidentally, you may be reacting to something in your cocktail of meds too. Did you change anything prior to the start of the flare? Are you on Asacol or Asacol HD? Regular Asacol contains lactose, which can cause issues for most of us, since lactose intolerance is widespread in MC.

[tex]

Hi Margaret,

Welcome to the board. I hope that you can find the solutions that you seek, here on this board. I agree with Zizzle that your symptoms sound pretty typical of MC.

Regarding the neuropathy in your legs that you are being treated for: Was your neuropathy issues caused by diabetes, or is the cause listed as unknown? The reason I ask, is because if it is not due to diabetes, then it is almost certainly due to the damage done by long-term untreated gluten-sensitivity. Many of us here, (myself included), have peripheral neuropathy issues due to gluten-sensitivity.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Margaret]

Zizzle and Tex,

I am on Asacol HD 800 MG, 3 times a day. Sometimes I think this makes it worse... Must be my imagination.

As for my Neuropathy, it's unknown but my Father had some issues as well. I am supposed to be taking Gababpentin 100MG, 3 times a day but I only take one in the morning. I also take Clonozepam at bedtime. I have read several articles regarding the connection between Neuropathy and Gluten sensitivities.

I have to say the GF diet leaves a lot to be desired....

[Deb]

I have to say the GF diet leaves a lot to be desired

Hi Margaret,
I totally understand how you're feeling. I was really enjoying cooking when I got hit with this "thing". But I've found, like some of the
other threads are discussing, it was really changing my mindset. I loved great bread and pasta. I have not yet found a great bread
but I've figured out some pretty decent other gluten free replacements (pancakes, etc). Tinkyada brown rice pasta is quite good and I would
guess many people wouldn't realize it's not wheat. But rather than focusing on what I'm missing (I really don't eat much gluten-free replacements or
pasta these days) I am instead learning to cook with what I know is safe for me and it's kind of fun again....though I'm not sure DH is as appreciative of all the experimenting. I'm fortunate that, so far, my main issue appears to be gluten so there really are a lot of options available for me. I remember, years ago, when a couple of my friends were diagnosed celiac and I thought, "that's awful, I sure hope I don't ever get that". Back then it really was awful. Things weren't marked and there weren't a lot of options. I'm feeling pretty fortunate that things are a whole lot better today.

[tex]

I am on Asacol HD 800 MG, 3 times a day. Sometimes I think this makes it worse... Must be my imagination.

Not everyone can tolerate Asacol HD. In trials, between 2 and 3 percent of users report that it makes their symptoms worse. You might be interested in a previous post that I wrote about this drug:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13643

Regarding gluten-induced neuropathy, I have never personally encountered a neurologist who was aware that gluten-sensitivity can cause neuropathy, even though numerous research articles have been published, describing the phenomenon. One of those neurologists even diagnosed me with Parkinson's disease, a couple of years ago, based on my symptoms, because he refused to believe that they could be caused by gluten. A year later, another neurologist agreed with me that I do not have Parkinson's, but she still refused to believe that my symptoms could be caused by gluten, even though she couldn't find any other reason why I might have the neuropathy. Most doctors are lost and confused, whenever gluten-sensitivity is involved.

I have to say the GF diet leaves a lot to be desired....

That's certainly true, but MC also leaves a lot to be desired, to say the least, and so do the drug treatments typically prescribed by most GI specialists, for treating the disease. At least the diet doesn't cause any adverse medical side effects, the way that drugs do.

Tex

[Joefnh]

Hi Margaret and welcome to the group from New Hampshire. You've already received some great advice and I can add that adjusting to eating gluten and soy free initially is a bit of a daunting task, but after a while it's just second nature.

I was DXd with MC and Crohns in April of 2010 and within just a few days found this site and all of the amazing people here. I will have to say that proabably just as important if not more so than the meds is diet, it does for most make all the difference in the world. Initially you may want to avoid all gluten, soy and dairy and then slowly add back one food type at a time to see if that food type is causing you problems

To help figure out the diet a bit quicker you may want to look into Enterolab testing at www.enterolab.com they test for food sensitivities that occur within the GI tract. There is also a more advanced test called MRT testing, there is a forum on the group here that discusses the MRT testing and the results which can be found at

http://www.perskyfarms.com/phpBB2/viewforum.php?f=66


Again welcome to the group Margaret I look forward to your posts

Joe

[sarkin]

Margaret,

Welcome. I know that awful feeling of being unable (or afraid) to leave the house. I was fortunate to respond to diet change fast enough to get some positive reinforcement for my efforts (not that I was better over night, but I could see I was heading in the right direction - what a relief). You've had many great suggestions already (I did the Enterolab testing that Joe mentioned, and am planning to have MRT testing as well).

Quite a few members here have used Entocort, which is a form of corticosteroid that is primarily absorbed in the gut, so less likely to cause systemic reactions than Prednisone. I had Asacol (not the HD form) many years ago, and believe it didn't really help or hurt (but I did notice the lactose - one spoonful of ice cream sent me sprinting to the bathroom, and I had not considered myself lactose-intolerant previously). It took me years to understand that all dairy is out for me. If you feel your Asacol HD isn't helping, and you're not getting relief with the overall cocktail, perhaps your doctor would be open to Entocort.

I used Pepto Bismol in the beginning, and it was like a miracle drug for me (believe it or not) but is not universally well tolerated by any means. Whichever regimen you wind up with, eliminating food triggers from your diet let the drugs do their job in helping you stabilize. Then when you reduce or eliminate the medications, you don't have a re-flare of symptoms and feel like you're back to square one.

You sound as though you're off to a great start - once you stock up on a few friendly foods, I hope you are feeling better quickly. I also had symptoms I know believe were peripheral neuropathy, btw. I had weird numbness in one hand, and was thinking I should change my desk chair or keyboard or get a massage. That symptom has totally gone since I fixed my diet, and I've also had other improvements that make me think I got sick with MC in the nick of time, crazy as that sounds! If there's any way we can help you make your progress toward health easier, please ask.

All my best,
Sara

[MaggieRedwings]

Morning Margaret and just want to welcome you to the group. You have received great advice so far and I for one can tell you that going gluten free may be your key to better health and being able to get out of the house. However, with this weather right now home is the best.

At first the GF diet can be daunting, but with time it is second nature.

Maggie