Quick Fix (nulev) Does It Really Work?

[DarcyandMike]

My wife has been gluten free for over 3 years and it seems that the longer she is gluten free the worse the reactions are when she has wheat by mistake.

Last weekend she was glutened by mistake in a resturant that we have eaten at for over a year problem free. Steak, baked potato, and cruton free salad with O&V.

Well 20 minuntes to the letter after we left she was in the bathroom and for the next 3 days she had the bloating, cramping, and joint pain. This time however she had blood in her stool which had never happened before. This cleared up after about 5 days but we went to the gi Dr. anyway to ask about a "quick fix".

We were given some samples of (NuLev) A tablet that is orally disintegrating under the tounge. He told us that this would be a fast acting and would relieve the bloating and cramping.

Has anyone here had any experience with this R/X? I hope that we never have to use the samples that we have but incase I would like to know that it will work.

Thanks

Mike aka tenderhusband to Dacry

[jerseyangel]

Hi Mike--I got a prescription for Nulev from my GI for cramping. This was early on, when I was first going gluten-free and was still having problems. He told me that Nulev is what they use in their practice for people who have cramping after procedures. It works--although I tried to not use it too much. What a caring husband . I hope Darcy is feeling better soon!

[elonwy]

I had never heard of this, but I googled it and it looks awesome! I've asked my MD about it, see what she thinks. Right now I use b-12 for the brain and pepto for the tummy, but it never really works that well. If this gets rid of the bloating that would rock, because I too, seem to be getting more symptomatic as I continue to be gluten-free. I haven't had an incident in a while now, but I do eat out quite a bit, and every now and then the results are disastrous. I'll let you know what my doctor thinks, and let me know if she tries it, I'm very excited about the claims it makes, and the lack of side effects.

Elonwy

[penguin]

I think I've taken that before, but it didn't work for the problems I was having. It tasted like a postage stamp. I didn't respond well to sublingual antispasmodics...

I do, however, take an oral pill antispaz called Bentyl when I need to, it's great. I find a great deal of relief that way, especially if I catch the symptoms early. It's in the same category as the Nulev.

They don't have any lasting effects, and they aren't dangerous drugs (in the way that ones like narcotics are), they don't hang around in your system.

When I get glutened, I take a bentyl, some tyleonl, and drink a Red Bull (for the fog, there's tons of B vites in there). It helps.

So glad you're caring for your wife! Hope she feels better soon...

[Lollie]

I took Nu-Lev for years orally. It worked, but then they gave me the under the tongue one. I didn't react very well. It just didn't work for me. I now take Flexaril which is a muscle relaxer. I find it works well but knocks me out, so I only use it when I have to. But I get back spasms too, so I just use the same thing.

Your a good guy!

Lollie

[jaten]

My GI gave me a prescription for NuLev when he first diagnosed me. He said to keep it on hand and that he uses it for his Celiac and IBS patients. It works pretty well for me and has saved me more than once when the cramping, etc. set in. I, too, have the sublingual, and my dosage is 1-2 tablets under tongue as needed. ( I don't know the mg). I do usually have to repeat the dose after a few hours, but don't have to take it daily. I never leave home without it.

[plantime]

I have never heard of this. The next time I go see my doc, I will have to ask about it. If I can remember, that is.

[Guest BERNESES]

I've taken it and Bentyl back when I had been diagnosed with IBS (misdiagnosed- I actually had Celiac's). It definitely helped with cramping and it was less sedating for me than the Bentyl (which worked great and made me very drowsy- not a bad thing when you feel sick).

I don't get cramping so much anymore now that I'm gluten-free; I have more problems with nausea. So I take phenergan which really knocks my butt into bed.

[ebrbetty]

I think its just another name for levsin, I tried it but it didn't do very much for my pain..bentyl works sometimes, other times nothing, at least for me

[DarcyandMike]

Thanks to everyone for wading in on this. The samples came by way of 5 - 6 packs so we have a pack in every auto, one in her purse, and one at my moms as well as one in the bathroom. I hope that they go bad before we need them but if something happens I will pust the results here.

Thanks again to all who replyed:

Mike and Darcy

"The true measure of a man is how he treats someone who can do him no good whatsoever" Robert E. Lee

[jaten]

I think its just another name for levsin, I tried it but it didn't do very much for my pain

I think you're right. I think they are both brand names of Hyoscyamine. My gp prescribed generic Hyoscyamine while all the testing was going on but before the docs had even thought of Celiac. It didn't do much for me at all. BUT NuLev does definitely help. Go figure.

In fact, had to travel to meeting about 200 miles (1 way) today. Arrived, and for no apparent reason, I was feeling really crampy and yucky. (this still happens some since healing is just beginning). I thought to myself that there was no way I'd be able to sit through the meeting, much less drive myself 200 miles home. A couple of NuLev later, and I would not say, "Good as new," but I was definitely in the "tolerable" range of mild discomfort.

[shellbean]

I was prescribed nulev and pamine forte by my GI doc when he thought my only problem was IBS. I took pamine forte every day to relieve IBS symptoms and it worked for a while but then the side effects became worse than the IBS symptoms themselves (especially mental effects - like confusion, disoriented, depressed, etc.) so he prescribed NuLev. At first before I even knew about celiac disease, the nulev seemed to only help at times to relieve the massive intestinal cramping I had. So I stopped taking it for a while. Since I went gluten free (about a month ago), I started using the nulev again. I only use it when I have the massive intestinal cramping right before a BM. The pains become so nausiatingly (spelled wrong! ) intense (like someone was ripping my insides out) that right in the middle of the spell I would put the nulev under my tongue and usually within seconds the cramping lightened up alot. I think the reason the nulev didn't work as good before was because of me taking the pamine forte. But once I got that RX out of my system, I think the nulev was able to go to work. Nulev is quite expensive where I live but I have to have it every where I go now! Like that saying "don't leave home without it!"

[elonwy]

So unfortunatly I got to try Nulev this weekend. I read the label four times, and about two bites in went "something is weird about this" and read the label the fifth time only to spot : Rice flour, sweet rice flour, flour.

The whole time I never picked up on the third flour. You know those tests you do where you don't see certain letters when they're in a certain order? Its like my brain comensated and never saw the third flour. Anyway.

It doesn't really make the bloating go down too much, but it definitly got rid of the cramping. The gas stayed too. I blew up like a balloon, and usually I'm very grumpy and in horrible pain for hours, crying and having the cold sweats. I felt the cramps coming on, and took a Nulev. I was still puffy but was lively and happy and pain free. no sweats either. My boyfriend totally noticed the difference. He says I'm "pooky" when I get sick, thats how he describes my belly. He's really sweet and patient with it, and he was really happy that I was obviously so much better. I took another one right before I went to bed about 4 hours later ( I stayed up for four hours after getting glutened!) and fell right asleep, no lying half asleep and miserable.

I took another one this afternoon because sometimes I stay reactive to any food after getting gluten, and it stopped the cramping and the swelling went down a little bit. Not all the way, but a bit.

Its really nice to have a backup. It doesn't get me to a 100%, but it helps me not get leveled, which is all I ask.

Elonwy

[jerseyangel]

Elonwy--Sorry you got glutened, but glad that the Nulev worked for you!

[DarcyandMike]

Elonwy

Same here for us. We are so sorry that you got glutened but are exicited that the r/x helped. Someone had to be the crash test dummy. I also glad that you too have a great B/F. I love my wife more than life itself and besides work we are alway together side by side. Whenever she hurts I hurt so I hope that this r/x works as well for her as it did for you.

Not to pat myself on the back too hard but I am quite a hand with the pot and pans so when I married Darcy and discovered rice flour, I turned all my southern home cooking into gluten free dishes. For the first time in years she had crunchy food. Fried and breaded stuff.

Tip #1

If you like meat loaf or meat balls but can't find wheat free bread crunbs, use lays potato chips instead. It might just be better.

Tip #2

If you like grits and sausage but want to trim a few pounds, try putting a little sage in your grits. It makes them taste like sausage gravy.

Have a great day all:

Respectfully:

Mike and Darcy

So unfortunatly I got to try Nulev this weekend. I read the label four times, and about two bites in went "something is weird about this" and read the label the fifth time only to spot : Rice flour, sweet rice flour, flour.

The whole time I never picked up on the third flour. You know those tests you do where you don't see certain letters when they're in a certain order? Its like my brain comensated and never saw the third flour. Anyway.

It doesn't really make the bloating go down too much, but it definitly got rid of the cramping. The gas stayed too. I blew up like a balloon, and usually I'm very grumpy and in horrible pain for hours, crying and having the cold sweats. I felt the cramps coming on, and took a Nulev. I was still puffy but was lively and happy and pain free. no sweats either. My boyfriend totally noticed the difference. He says I'm "pooky" when I get sick, thats how he describes my belly. He's really sweet and patient with it, and he was really happy that I was obviously so much better. I took another one right before I went to bed about 4 hours later ( I stayed up for four hours after getting glutened!) and fell right asleep, no lying half asleep and miserable.

I took another one this afternoon because sometimes I stay reactive to any food after getting gluten, and it stopped the cramping and the swelling went down a little bit. Not all the way, but a bit.

Its really nice to have a backup. It doesn't get me to a 100%, but it helps me not get leveled, which is all I ask.

Elonwy

[jerseyangel]

Mike--Thanks!! I am going to definately try the crushed Lay's in my meatloaf. I tried instant potato flakes, and was less than thrilled. (can't do grains) I love meatloaf, and have been craving it again, so I'm going to give it another try . PS--What a nice husband you are--my best to Darcy

[cgilsing]

Wow! I'm going to ask about that! That sounds GREAT! It would be a lot better if it worked on bloating too, but even so! If I was bloated, but not in pain, it would be so much easier to get through a glutening! Thanks for the info!

[jaten]

Elonwy, glad the NuLev worked for you. In fact it worked for you exactly like it does for me....doesn't touch bloating, doesn't touch gas, but really goes to work on the terrible cramping making me a much happier camper....not to mention a nicer wife and a more productive employee....everybody's happy. Like you, Elonwy, and I'm sure many others, my cramping can be truly debilitating until I pop a NuLev.