BFS, IBS, LI (lactose intolerance)

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BFS, IBS, LI (lactose intolerance)

Postby skinny on September 14th, 2003, 7:39 pm

Hello,

I have self diagnosed myself with BFS. My twitching started after I came out of a 6 day water fast. I was going through a period of depression/anxiety and thought that the fast would lift me out of it. Several years ago I did a similar fast and it gave me an incredible high that tapered off over several weeks. This time it didn't. I regret that I took on the fast this time.

Soon after I broke the fast, I became severely lactose intolerant. The smallest amount of lactose would give me severe gas. Later my LI turned into Irritable Bowel Syndrome (constipation, gas from carbs).
If anyone is interested, I wrote more on my LI and method of treatment on another board http://pub115.ezboard.com/flima16189frm ... =206.topic

My twitches began a week or so after my fast. I woke up with a twitch on my thigh. The twitches started spreading soon after. I sometimes get the jerks before falling asleep.

Anyways that's my intro post. I was wondering did anyone else get BFS and (IBS or LI)??

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Postby erika on September 15th, 2003, 10:00 am

hey skinny,

that's funny, I DID become lactose intolerant around the time that I started twitching. Actually, I noticed the LI a little bit after the twitches started, and at the time I thought the LI was causing hte twitches. THat was of course, before I looked up twitching on the internet.

After about a year of being lactose intolerant though, it went away. I forced myself to drink milk and eventually the symptoms stopped. I'm still twitching though.
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Postby Nole on September 15th, 2003, 7:56 pm

I have gastroesophogeal reflux disease (GERD) pretty bad, cant tolerate dairy, meats, chocolate, high fat foods, plus a lot of other foods. This all started about 8 months after the BFS. On meds now but still stay clear of the dairy cause IBS starts and I get very sick!
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Postby skinny on September 15th, 2003, 9:54 pm

erika wrote:hey skinny,
After about a year of being lactose intolerant though, it went away. I forced myself to drink milk and eventually the symptoms stopped. I'm still twitching though.


Erika, I'm curious: what were your LI symptoms? Could you eat cheese, pizza, hidden lactose but not lactose rich foods like ice cream, milk, etc?

Interesting enough, I have had a brief period of remission in my LI. I went on an antibiotic treatment (neomycin sulfate 500mg 2x for 10 days) to see if my IBS would clear up. Well at the end it got better, but I was surprised that I could eat dairy once again soon after. I was eating ice cream at bowlful once again.

Just this weekend however, it seemed to return because I was getting D. :( I'm going on a lactose free diet for a couple of days to see if the D clears up, and then slowly try to reintroduce lactose in.

Erika, how did you think you reversed your LI? There is clinical evidence that chronic ingestion of lactose improves the tolerance of it. You must have introduced milk slowly into your diet.

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Postby erika on September 16th, 2003, 12:29 am

well it all started when I went for about a month of not drinking any milk. during that time my twitching started, and then maybe two weeks later, I noticed I was very sensitive to most milk products. anything over a small amount would give me terrible gas and sometimes cramps, but mostly just gas. and when I say terrible, I mean, well, putrid. (sorry for being gross). a small piece of pizza would be okay, but two pieces would set me over. yogurt I could eat fine, so I ate tons of that. ice cream was okay if I ate a tiny bit. I never noticed a problem with milk chocolate or anything like that. I mean, I never saw a doctor, but it was pretty apparent that within 30 mins (or sometimes less) of drinking milk I'd get gas.

anyway, for a while I just had soy milk with my cereal everyday, and then I slowly started adding a little bit of real milk (I know again, gross.) I just kept adding more and more milk in small increments over a long period of time until I could have a bowl of cereal with only real milk! I was very excited.

so for the past year, I've been pretty much rid of any lactose intolerance. again, maybe I wasn't really lactose intolerant hte whole time and was just milk sensitive, who knows.

too bad the twitching can't go away as easily. I hope you can get back to that ice cream soon. that's what I really missed.
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thats funny

Postby KERRI on September 16th, 2003, 6:52 am

I was diagnosed with IBS the month prior to my twitching onset, I wonder if there is a connection.

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Postby skinny on September 21st, 2003, 11:23 am

erika wrote:well it all started when I went for about a month of not drinking any milk. during that time my twitching started, and then maybe two weeks later, I noticed I was very sensitive to most milk products.


This was just about the same as I. My twitching started first on my left thigh, moved to the right thigh and then spread all over. I think once the twitching spreads all over the body, you are stuck with BFS.

I used to have maybe 3-4 cases of twitching in my teens to college years, but it was always one localized area and it left after about 3 days.

anything over a small amount would give me terrible gas and sometimes cramps, but mostly just gas. and when I say terrible, I mean, well, putrid. (sorry for being gross). a small piece of pizza would be okay, but two pieces would set me over. yogurt I could eat fine, so I ate tons of that. ice cream was okay if I ate a tiny bit.


I didn't get the cramps, just terrible gas. I tried the lactase pills (Lactaid, generics) and it didn't work. I would get gas within 5 min of ingesting something with lactose. It was awful. At first it was, smelly gas, but after trying different probiotics like Digestive Advantage http://www.rofay.com the smell went away but the gas was uncomfortable and excessive.

I would get set off by butter and hard cheeses. The only remission I had was after a month on Digestive Advantage - I could gulp a pint of milk on an empty stomach. But soon after the probiotic started to wear off, and I went to my old gassy self. Then I did the lactose adaptation experiment proposed by a lactose intolerance expert. He suggested to drink milk with your meals starting with a small amount and slowly increasing it over the weeks. He said that lactose could be tolerated once again in the diet. I took 2 months to do that, but in the end I could only tolerate dairy 15-20 mins AFTER a *full* stomach.

Then I went the antibiotic therapy and soon after that I was eating dairy with no supplementation. I was taking DairyCare http://www.dairycare.com though so it could have been a factor. My IBS symptoms got better too. My stools were coming in more formed instead of rabbit pellets. I had a 2 day feverish spell which gave me diaherria and the lactose intolerance came back except it felt like it was 90% D and 10% G.

Now I'm back to drinking a cup of chocolate milk after a full stomach. It seems to be reversing the symptoms! I took a Lactaid with a candy bar on an empty stomach and had no G or D. The thing now is that I have to get into a regular pattern of ingesting lactose in small increments *with* my meal. I think this will get me back to being to eat dairy hassle free.

anyway, for a while I just had soy milk with my cereal everyday, and then I slowly started adding a little bit of real milk (I know again, gross.) I just kept adding more and more milk in small increments over a long period of time until I could have a bowl of cereal with only real milk! I was very excited.


How did you think of doing such a thing? Was it intuition? That's pretty remarkable because this isn't very well known. Dr. Dennis Savaiano who has conducted many medical studies would give you the same prescriptive advice. Another fellow who is making of business of selling lactose says you could be cured. http://www.milkure.com Interesting enough he took Saviano's advice in a science fair project and won the award, and now he's using a cheap product to make money.

so for the past year, I've been pretty much rid of any lactose intolerance. again, maybe I wasn't really lactose intolerant hte whole time and was just milk sensitive, who knows.


Could you briefly outline your protocol? How long were you on the protocol before you started using regular milk?

too bad the twitching can't go away as easily. I hope you can get back to that ice cream soon. that's what I really missed.


Yeap my twitching has gotten better. It's mostly sporadic light twitches, a few hours of no twitching, a day of a constant muscle twitch....grr looking for a cure to this.

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Postby twitching man on September 21st, 2003, 11:59 am

I also have IBS that was dagnosed a couple of years ago. Right after the twitching started i developed GERd really bad. The docter thinks it started becuase I was so stressed out and i wasn't sleeping for weeks due to anxiety.

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Postby maggiecttr on March 21st, 2004, 2:04 pm

To all of you who have/had gas and other digestive problems---did your twitches ever occur in the abdominal muscles? What I am hoping are BFS abdominal muscle twitches (gastroenterology trests have ruled out a lot of things--I'm going to see my Dad's neurologist soon) appeared during the same time I was getting a lot of gas. I *may* be lactose intolerant or at least sensitive.

THanks for your help if you guys are still on these boards!
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Postby skinny on April 2nd, 2004, 11:43 pm

I wonder too if the twitching is caused by some bacteria. My twitching started from a bad case of gas after eating lactose. After going through a variety of broad spectrum antibiotics, the lactose intolerance disappeared but the IBS got a little better. The LI came back but went away after another course of antiobiotics. Now I seem to be mildly LI - it must be from the bacteria because I only get gas - Digestive Advantage IBS once a day fends off the LI.

Maggie: I get twitching ocassionally in the abdominal area.

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Postby Sahti on April 3rd, 2004, 4:43 am

Greetings again Skinny.

Like you, I have very severe IBS and have had BFS for a year and a half straight. My IBS was on and off all my life, but it came about severely after I ingested a birth control pill (Ortho Tri-Cyclen) and the condition has been severe ever since. I was in and out of ICU in the hospital many times over it.

Through it all, the only blood test that came out suspicious was my anti-gliadin antibodies. IgG (Immunoglobulin Gliadin [gluten/wheat protein]) continues to rise off the charts, and IgE (allergen to wheat/gluten protein) is even higher. This could mean Celiac disease, Coeliac disease, Lupus, or any other autoimmune disease. Even a Gluten sensitivity can be just as bad as Celiac... and all of these autoimmune diseases cause BFS, IBS, chronic fatigue synd, among many other problems.
Sometimes the antibodies turn into a neurotoxin, thus casuing neurological problems.
There is even something 'neurological Celiac diease' as well.
In other words... ask your physician to test your antibodies (IgG, IgE, IgM, IgA... etc etc). If your doc gets stumped about it, see an autoimmune specialist about it.

My sitatuioon is still inconclusive because my Gastroenterologist ruled out Celiac disease, as suspicicious as it was. She did, however, inform me that there is still an autoimmune disease present.

I'm also taking it that you're a skinny person. I am very underweight. I have a terrible time gaining weight! Low weight and trouble gaining weight is a definitive sign of Celiac... most of the fat comes out in the stools. Yucky, but true!

Let me know what you think!

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Postby skinny on April 3rd, 2004, 11:40 am

Sahti: I have always been underweight even up to my current age 28. I think it's from my genetics and not from a problem with gluten. I have read about gluten causing weight problems. I think it's best to have the gold standard for gluten intolerance which is the small intestine biopsy. I read the other tests are unreliable. My IBS started about 2 years ago when I fasted during a stressful time in my life - soon after I got ridiculous amounts of gas and constipation. Before that time I could eat wheat with no problems. I did an exclusion diet for 2 weeks where I eliminated wheat, but didn't notice any improvement.

I am going through a hypnotherapy program http://www.ibsaudioprogram.com now. It's a 100 day course and is very safe and relaxing. I'm in week 2 and not noticing any improvement, but I'll stick with it because I believe in the power of the mind. If there is a bacterial problem with me then HT may not work. But most doctors say that IBS is "in your head".

Sorry to hear that your IBS got severe from the pill. I read that a lot on the ibsgroup.org forums. If your IBS goes off and on, then hypnotherapy may help in your case. My IBS is pretty much mild most days - visceral sensitvity, C, incomplete evacuation.

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Postby YYYYT on April 11th, 2004, 7:40 pm

I've had two big bouts of IBS. There are a lot of theories about IBS, but I do believe that mine was psychological. After I got over my anxiety/depression episode, the IBS stopped.
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