Zelnorm Question

[mela14]

Does anyone have any experience with Zelnorm?

I was taking half of the recommended 6mg dose once a day. It seemed to be ok.

I then upped it to 3mg twice a day. I was cutting the 6mg pills in half as per dr instructions. He actually wanted me to go back to once a day after my symptoms quieted down a bit.

Here's the problem....I was away for a few days about 2 weeks ago and did not have my pill cutter so decided to just take the full 6mg twice a day. I have continued with that same dosage thinking it would be better for me. I've been starting to get really bloated after dinner...especially tonight. I don't htink it was the food but not sure. maybe the zelnorm is causing toooooooooo much movement!

I had grilled chicken...(indoors in the pan/olive oil) cooked plain carrots and an artichoke ( cooked stove top). desert; 2 figs (the ones in the plastic wrap...nothing added but potassium sorbate) some raw cashews. It's not about 1.5 hours after dinner and I am sooooooo bloated and distended! My abdomen looks tight! My husband thinks the Zelnorm is probably too strong for me and causing too much agitation with the intestines. Has anyone else had this happen? Did I eat anything that was gassy? I don't think artichokes are...but then again not sure..I never really took notice

Any thoughts?

[mela14]

After having a terrible night sleeping.......this morning is a killer but I am racking my brains out trying to figure out what happened.

I did not take the Zelnorm this morning but after much though I realized that I did not add that I had white rice with my dinner last night! I haven't had it in so long and now I remember why........it was making me bloated ans sick!

It could also be the reason why my white rice toast in the morning makes me bloated but nothing like what happened last night!

OOPS...I also had Rice Dreams frozen desert as a treat while watching tv last night! ( i stopped having that a while ago too.....because i thought it was the chocolate flavored one doing me in) I had the vanilla last night.

does this mean that I have to eliminate rice too? I feel so awful today that I cancelled my morning appt with the nutrionist...the drive is too far to make feeling the way that I do. Hopefully she will let me do a phone appt. I will call her now.I already know the answer about teh rice....no way I am having it but my diet is getting more and more restricted!

what is going on?

[KaitiUSA]

I'm not for sure about this because I never had it before so don't hold me to this but I have heard that some products by Rice Dream is not gluten free.

[Peaches503]

Hi,

I too was diagnosed with IBM before my celiac blood test. I personally think that Zelnorm made me more constipated and actually made the pain in my left side way worse. I did notice an increase with my appetite while on it, but as far as actually making my stomach feel better? Nope. My abdomen and instestines were still in so much turmoil, and being on Zelnorm did not help. It actually felt like the stool (sorry for being graphic) was building up more and more each day, and the Zelnorm was not making me go, it was just building it up! It stunk, I stopped taking it, and even now, being gluten-free for a month, things are still not 100% better, but being gluten-free has helped me in subtle ways. I'm hanging in there and having faith that I will be much better in a few more months.

[mela14]

I just got off the phone with the Nurtionist. that partiuclar flavor of Rice Dream Frozen Desert is gluten-free....some of the others are not. I checked before I bought it.

anyway, after speaking with her for 45 minutes, she said to stop the rice for now. It is too much for me and I am reacting to it. It also showed up on my food allergy testing (done by York) as a low positive...so for now it's out. We also talked about the white rice toast and I am going to stop if for a while and have a banana and some raw cashews which I tolerate ok.

I discussed my biopsy results and gene testing results. She said that the biopsy was done 5 months aft4er being gluten-free so she wouldn't give it much validity. As for the gene testing she said that they have not yet identified all the genes with celiacj adn just because I do't have one of the 2 genes they tested for doesn't mean I am not reacting to gluten. She feels I should act as if I tested positive because I am reacting so violently to it anyway! My intestines although seemed ok with the biopsy....are angry and I am not tolerating a lot of foods. She said they need to be babied....no oils either. Just a little oive oil. We talked about what to avoid and how to prepare certian foods to make them easier to digest. I have already learned a lot from her this morning. Of course, the stress got to me and I cried while on the phone with her. I just feel so poorly and am trying so hard but am hitting roadblocks all the time. I guess if it were just the gluten I could concentrate on that one thing....it's all the other things that are doing me in! right now everything is an uproar again and I am exhausted..............

In the meantime the Zelnorm is out too

thanks