Anyone lactose intolerant?

    • Anonymous
      January 28, 2008 at 1:48 pm

      Emily has been having HORRIBLE stomach pains since around Christmas. We’ve tried EVERYTHING under the sun that I could think of to get rid of them. She had these same kind of stomach aches right after being dx’d with CIDP & they ended up just going away one day about 18 months ago. We were pretty sure it was gas & an issue with regular milk – we switched to organic milk & that seemed to help some.

      Now we just don’t know what to do. I took her to the dr’s last week & he gave her some Prevacid, which isn’t doing anything for her. When asking Emily what her stomach felt like she said “a rotten apple”. I don’t know what this kids fascination with describing her hurts with food are, LOL. She described the neuropathy pain as “mushy strawberries” and the charlie horses as “nuts”. Anyone got any ideas on what the heck a rotten apple feels like? All I can come up with is icky.

      The pain is usually where her belly button is. Sometimes it travels over towards her hip area. I took her to a gastro dr last year & he wanted to put her under to do a scope but we don’t really want her sedated again. She was sedated 8 times in the span of 11 months & we’re really trying to avoid it again. Her neurologist agrees with us that sedating her again, unless absolutely necessary, isn’t in her best interest.


      I’m at my wits end & I’m thinking that it might be lactose intolerance or an inability to break down sugars. I heard of this over the counter pill called Digestive Advantage. Supposedly it’s all natural & only needs to be taken 1 time a day.

      I was wondering if anyone else has taken this pill & if it’s worked or it anyone can offer any other suggestions.


    • January 28, 2008 at 2:46 pm

      I will call you back!

    • Anonymous
      January 28, 2008 at 2:49 pm

      I suggest that you first try the elimination diet ~ namely, leave out any dairy for the next couple of weeks and see how it goes. Next try leaving out any wheat products for a couple of weeks. It won’t be long before you’ll have some real clues as to what distresses Emily. A scope won’t necessarily show what an elimination diet will.

      Most important ~ keep listening to Emily! Her body is telling you what it needs, you just need to learn how to “hear it”. Good luck ๐Ÿ™‚

    • Anonymous
      January 28, 2008 at 5:13 pm

      I was lactose intolerant for many years before GBS. I would try leaving out the dairy products first. My symptoms range from bloated to very watery bowel movements. That includes everything in between too, like gas and intestinal cramping. I find that if I am careful with my dairy intake, I can usually avoid problems. But, if I want to eat ice cream or pizza, I should be prepared for the consequences. They do have OTC things like lactade. It is a replacement enzyme. You have to play with it a while to find what is the right amount for you. I don’t bother with it. I just watch my dairy products. I hope this helps.

      Tonya Correll

    • Anonymous
      January 29, 2008 at 7:32 am

      I’ve been lactose intolerant my whole life and apparently I loved soy milk as an infant but I can’t stand it now… thank god for Lactaid milk – until a couple of years ago I had no idea how good milk was! The abdominal pains could certainly be gas caused by lactose intolerance, if the pain is relieved by Gas-X then at least you know what is causing the pain. Finding out what is causing the gas can be an adventure, and frankly the IVIg does it to me (thanks Dawn for the tip, you were right).

      I’m trying to understand the rotten apple thing, do you think she might be having motility issues? If she isn’t able to digest things as well as she used to, and/or things aren’t passing through as quickly as they should then they are likely sitting down there fermenting and causing gas, possibly nausea as well. Spoiled food does ferment and cause stinky gas! If you think this might be the case you might try stool softeners and lots of water to make sure things aren’t hanging out too long down there.

      Poor Emily, it’s one thing to have the symptoms but it must be so much harder to not be able to describe them. ๐Ÿ™


      P.S. Mushy strawberries .. hmmm … red is usually a symbol for pain, then strawberries have these little hard seeds that could represent the needle like pains, then maybe her muscles are mushy because the nerves aren’t working well? Hee hee, maybe one day when she is older she can tell you why, meanwhile it’s very entertaining! ๐Ÿ™‚

    • Anonymous
      January 29, 2008 at 10:06 am

      Thanks everyone. A few thoughts….

      Gas X sometimes relieves the pain…not always. If it doesn’t take care of it completely then it takes the edge off. But I’m not comfortable with having to give her 4 Gas X pills a day – which is what I’ve been having to do. I worry about the long term effects on her digestive system. When she’s having the stomach pains I’ll have her move around until she passes gas. Head, shoulders, knees & toes usually does the trick. She’s always been a gassy child, even as a baby. I thought she might be having problems because she doesn’t want to pass gas at school (the horror!) & around the time that the pains started my brother got onto her about farting near his girlfriend. He really chastised her & made her feel bad. (Of course, he got an EARFUL from me on that!) I was thinking that she was holding it in…maybe even inadvertently.

      If it’s extremely bad pains, she’ll go & sit on the toilet to try to go potty. She usually doesn’t go & might pass a little gas – which she says makes her tummy feel a little better.

      She doesn’t have any problems having bowel movements, she’s actually quite regular. Her BM’s look normal – they aren’t hard balls & they aren’t too soft or watery either.

      I’m not convinced that she’s all out lactose intolerant but I think she might have a problem with processing sugars – which leads to the stomach pain & excess gas. She’s always been very weird with milk. She can’t drink 2% – only vitamin D for her or she gets diarrhea.

      We’ve practically eliminated dairy from her diet for about 2 weeks now. She will still have some cheese or milk, mixed in with something (like mashed potatoes). Emily is an extremely picky eater & doesn’t eat meat, really. She’ll eat hot dogs & pork (sausage, bacon, grilled pork chops, ham) sometimes. Since none of those meats are particularly healthy to eat on a regular basis, we supplement her need of iron with cheeses, yogurts, etc. Since eliminating the dairy, it’s been extremely difficult to find iron rich foods that she will eat. Most of the veggies that she likes are gas producing, like broccoli. She also takes a multi-vitamin with iron everyday.

      I finally found the Digestive Advantage chewables at Walmart yesterday. I gave her 2 around 5pm. She did get a stomach ache last night, but I think that was because she was overtired. She was also complaining of her arms & legs hurting – which is a HUGE indicator that Emily is exhausted.

      Julie – after finding this board I finally figured out what the strawberries & nuts were. Emily had been telling me for 2 months that her feet felt like strawberries & I had NO clue what she was talking about. Luckily (KNOCKING ON WOOD!) she hasn’t had that kind of pain in a long time.

      Thanks again everyone. I’ll let you know if these pills make a difference.

    • Anonymous
      January 29, 2008 at 2:18 pm

      sorry to hear she is having a hard time. my son had similar issues when he was young and after extensive testing it was found he had intolerances not out right allergies to milk ,mold, ferments and wheat. I remember looking at the doctor and asking what exactly he was supposed to eat???? those items pretty muh covered everything except meat and a few veggies. He said to only give him small ammounts not to over do. he used to want to drink 6-8 glasses of milk a day but then felt horrible so we were down to maybe one glass. I myself am lactose intolerant and had to try several different meds because prevacid did not work and neither did zantac or prilosec. reglan halped my son. the goo thing is we both grew out of the problem. I still dont drink alot of milk but i do use it in alot of things. hope she starts to feel better son our prayers are with you both.

    • Anonymous
      January 29, 2008 at 4:22 pm

      Sometimes people can develop lactose intolerance after an episode of diarrhea. Many people are born with it to one degree or another. LActaid may help. People really sensitive have to avoid cheese and other dairy products. What you describe sounds more like something a gas or motility issue, though.

      Reglan can help a lot if there are GI mobility issues so that things do not move through the GI system very well and so people at baseline feel more bloated and gassy. The autonomic nervous system may not track exactly the same as the peripheral nervous system in manifestations, I have personally found.

      I am sure that you are watching for this, but be careful about sodas as well as other gas producing foods/drinks.

      A lot of kids with stomach pains are helping with simple things like heat or rubbing of the stomach gently or being held and rocked. The love helps and the rocking motion can help with moving gas along inside.

      With Hope for cure of these diseases.