Feeling a little frustrated

[piemom]

Good morning everyone--oops, I guess it's afternoon now. I hope you're all having a great day. I haven't written much this week--it's been a busy one--but I've been reading and keeping up with everyone. Am keeping my fingers crossed for Mary--can't get her out of my mind today.

It's been a frustrating week for me. I have been off gluten for 10 days and was really hoping to start feeling better by now. I know it's not long, and that I need to give it some time, but I have been so gassy and bloated and Norman is acting as badly as ever. I don't mean to complain but I knew that you all would really understand better than anyone!

For those of you who went gluten free--how long did it take you to start feeling better? I don't eat because I always feel terrible after I eat, then I am starving, so I eat a lot and then feel worse. I really, truly haven't had a morsel of gluten, but it doesn't seem to be making any difference. I have also eliminated the dairy. The only thing I can think of that may be causing me problems right now are dried fruit/nuts and chocolate. I hate to give up my chocolate! I do think I'll swear off the dried fruit for a while...

On a good note, my kids have been wonderful about being gluten free all week long--they haven't complained one bit (13 yo doesn't like the gf bread, but she can live without it if she doesn't like it). And, she hasn't had D all week long--first time in months. No complaints about tummy aches or anything else like that either from any of them. It's too soon to tell for sure, but it does seem to be helping for now.

So, thanks for listening.

Are those of you on the East Coast getting pounded with snow today? Get those snowblowers ready!

Cheers,

Wendy

[Mars]

HI Wendy,

Good news that the kids are doing better - sounds like gluten free is the way to go to eliminate the complaints! It may be that you are reacting to something besides gluten - thus the bloating and gassiness is indicitive of something else irritating your stomach/colon.

If you search for chocolate thru the search mode above, you will find that there are many that have had to give up chocolate. It escapes me why at the moment?

Anyways, keep up the good work!

Love,
Mars

[barbaranoela]

Hi Wendy----yup all most 2pm here---

And our EARS are always listening----

U arent complaining----U R discussing --hows does that sound?? better :O)-
Our neighbor has already informed us of the upcoming blizzard---but am sure in 2 weeks(when we leave AZ) the weather should be better--traveling!!!! I HOPE!!!

Am anxious to get home---too darn hot here---in the 90's today~~~


Thankfully I can still eat my chocolate----and drink my coffee---

U take care now-----keep up the good work--
luve Barbara

[starfire]

I'm really glad your children are feeling better even if you are not. I'm sorry I can't really be of much help with advice for you. Like Mars, I know that some have had to give up chocolate. I'm not quite sure why either. I know that milk chocolate has dairy (obviously) but as for dark chocolate....I'm at a loss.

I don't think the amount of time you have been gluten free is very long at all to see much improvement, but I'm sure Tex or Polly will be along soon to give you a better idea.



Love, Shirley

[tex]

Hi Wendy,

Sorry you are having a bad week, but it's encouraging to see that your kids seem to be showing benefits from the diet. Frankly, I'm surprised that they showed improvement so quickly.

Until you heal more, you may have to cut out the nuts, also. When our GI tract is really tender from reacting, many food items will cause irritation, even though we are not necessarily sensitive to them, otherwise. I had to cut out fruit and nuts for a long time, while I was healing, but can eat them, now.

Most of the problems with chocolate, are due to soy. To make matters worse, Karen discovered, (after a lot of research, and by cutting it out of her diet), that the chocolate she had been eating, contained soy, even though it was not listed on the label. She went from severe, uncontrollable D, to normal BMs, in just a day or two, after pinning down the culprit.

There are some safe chocolates on the market, but I think that Karen wound up having to special order hers, because of the widespread soy problem. Milk chocolate, of course, as Shirley pointed out, has to be avoided if you react to dairy products.

Without meds, (IOW, diet only), most MCers seem to show significant improvement in a matter of several weeks to several months, assuming that they have effectively excluded all their food intolerances, (and all "irritating" foods, such as lettuce, and possibly nuts), from their diets. It's possible to see a large improvement in just a few days, but most of us are not that lucky. The more damage we have accrued to our gut, the longer it takes to heal.

It takes some of us much longer. I think it took Polly approximately a full year. It took me about a year and a half, but that was because I had been sick for several years, and had a lot of intestinal damage, and I couldn't convince myself that I was intolerant to dairy and corn, and I kept "testing" myself, thinking that it was just a short-term, temporary problem. Also, I thought that I was lactose intolerant, and it took me over a year to realize that I was casein intolerant. (This all happened before I found this group of MC experts, by the way). Once I cut corn and casein out of my diet, (in addition to gluten, of course - I had been GF for almost a year and a half, at that point), I could see improvement in just a week or so.

I followed a similar eating pattern, when I was reacting. I would virtually stop eating, when the reactions got really bad, especially if I was nauseous, and then, after my episode began to cycle out, the D would stop, and I would purge the gas, and I would eat like a pig, to try to regain some weight, before the next cycle. LOL.

I hope this helps.

Wayne

[piemom]

Thanks for all of your responses...it's so nice to know that I have someplace to come and vent as well as ask questions. I'm also a bit surprised at the kids' reactions--was really hoping for their sake that it wasn't the gluten. My middle son, who had the fewest symptoms to begin with has noticed the least difference. The other two definitely seem to be feeling better.

As for me, I've wondered if soy affects me as well...I've been very careful with my chocolate to make sure it's gluten and dairy free. But, I know most of it has soy in it, and I've been substituting soy milk in a fair number of recipes (Pamela's cake mix today--it was delicious, BTW--thanks for the tip!).

I knew it would take some time, but not as long as it seems it might take. It's good to know that it may be a while. I've been contemplating trying the meds to try and help the healing process, but I still think I'm going to wait. I have an appointment in April with Dr. Scott Lewey, who seems to be quite an expert on mc and gluten and celiac. He has a website (thefooddoc.com) and has a few articles on celiac.com. He is also a big proponent of Enterolab. They don't take my insurance yet, but I decided that it was worth it to pay for a visit to see someone who really knows this stuff. Of course he probably only has half the knowledge of you all!

So I guess it's time to say goodnight. Stay warm!

Wendy

[Beth]

Hi Wendy,

I've been finding that soy is a huge problem for me. I kept thinking that it was just a temporary thing, but even if I have just a few tablespoons in my tea, the cramps hit me really hard. I also found that when I was flaring horribly just a few months ago that I couldn't handle nuts or dried fruit. In fact, I got my diet down to just a few things that seemed to really work for me: boiled eggs, broiled tilapia, avocado, steak, zucchini, cooked carrots, boiled potatoes, and cooked apples w/cinnamon. Oh, and tea with honey or real maple syrup. Just recently I've been trying a few other things, too, like the Lara bars (those seem to be okay) but have been finding that I'm developing cramps if I stray too far outside of the above diet. I would suggest trying to simplify your diet as much as possible so that you can figure out what it is that's really triggering you. You may find that things you could eat not long ago are problems right now since you're so sensitive from the inflammation. I know it's boring to eat such plain food, but I was so happy to be feeling better that I didn't care! Now I'm trying to wean myself off of the entocort (I'm down to 1/day) and see if I can handle things just with diet alone.

Hang in there - you will get better! And we're happy to help you out in whatever way we can.

Best,
Beth

[tex]

Hi Beth,

Thanks for the insight, and for the update on your own progress. Updates on progress, (or lack thereof), are vital for all of us, as we continue to try to fine tune, and upgrade our knowledge base here. Progress reports, (IMO, anyway), are extremely helpful to newbies who are following the same path, or those who are searching for a good path to follow.

Also, it's gratifying to see that you're making such good progress. You seem to be doing quite well, now.

Thanks,
Wayne

[CAMary]

Wendy-

Well, unfortunately it took me awhile to see results from going GF. I was taking Asacol @ the same time, and I started feeling generally better (pain subsided etc...) but D did not resolve to the point where I could drop the meds for about 14-15 months! But according to Dr. Fine's tests, I had mild intestinal damamge - so perhaps that is what made it take longer?

This, unfortunately is not a "quick fix disease" - but if you are feeling a little better, think of that as a success and keep moving forward - over time, the good days outnumber the bad - and you'll know you are winning!

Boy what a I've become (it is *so* not my personality!)

Take care!

Love,

Mary

[harvest_table]

It's been a frustrating week for me. I have been off gluten for 10 days and was really hoping to start feeling better by now. I know it's not long, and that I need to give it some time, but I have been so gassy and bloated and Norman is acting as badly as ever. I don't mean to complain but I knew that you all would really understand better than anyone!

For those of you who went gluten free--how long did it take you to start feeling better?

Wendy,

I combined a medication/entocort and a gf diet which likely helped me recover sooner from chronic symptoms than diet alone after my dx.

After 6 months I weaned off the medication and found like others that I needed to eliminate other things in my diet in addition to gluten in order to feel my best.

It's a learning process, that's for sure.

Love,
Joanna

[Polly]

Hi Wendy,

It took me almost 9 mo. of diet to have a formed BM! However, there were other gradual improvements over that time - less frequency/urgency, fewer aches and pains, less mental fog, etc. In retrospect I don't know why I hung in there for so long - probably mainly because of the support of this family here. One reason it took so long is because I had so many intolerances.

Alas! I cannot eat chocolate - even if it is completely soy and dairy free. WAAAAAAH. Every so often I try again, but no luck. Also, I did try goat's and sheep's milk and could not tolerate them either.

How are things coming along now? Your kids' symptoms? Your own?

Love,

Polly