Lactose intolerance?

[Keggy]

Any ideas of what could look like lactose intolerance but maybe be something else? Been sick for months and finnally decided that was what it was, but now I am thinking maybe it isn't.

[Kristen (ColeysMom)]

As a sorta recap on Coley's GI 'investigation'

The ped's first thought it was lactose intolerance, but after a lengthy elimination diet (4+ weeks) the GI upset didn't stop. So the following things were checked, in this order:

GERD - did not respond positively to meds (then scan ruled it out)

Egg (it hides in many things, including vaccinations for which he was getting many at the time)

Nuts

Gluten (elimination did not impact his weight/growth so it was ruled out)

Fructose (responded positively to this mentally, but not appetite/growth)

Bacterial infection (the one that causes ulcers, the name escapes me - it was ruled out too)

Gluten testing (revealed no indications)

Overgrowth is now suspected, treatment is improving his development & appetite. Growth is still slow, but it's occuring, so FTT has been eliminated as a problem.

So the working theory is that overgrowth is the issue here, which has led to digestive issues, that in turn affected his immunity...and how that connects to his mental state still is baffling, as you know, but the current MGH GI has made it clear to us that there are many other things like bipolar & depression that seem to react favorably to overgrowth treatments, in addition to things like ASDs & ADHD. They just don't know why.

In the initial stages he (the GI) thought that it was gluten because it can mask itself as intolerances to other things, and it is known for giving neurological upset as well.

After it was ruled out he (the GI) explained to us how, much like gluten intolerance or Celiacs can damage the GI track, so too can overgrowth...and treatment for that seems to be having the most impact, and explains why sugars, like lactose & frustose would make things worse.

Also, from my involvement with other FI people, lactose sensitivity tends to go hand-n-hand with it.

So, there are quite a few things that could look like lactoce intolerance.

hope there is something here that helps

[LIZARD]

I was having lactose sensitivity after being dx'ed with Celiac Disease in May and am now okay with it. I suggest getting checked for CD.


Good luck!

LIZARD :)

[Keggy]

Already got checked for cd, came back negative.

[Kristen (ColeysMom)]

Keggy, Coley's GI told us that there is a range between gluten sensativity, gluten intolerance and Celiacs. Celiacs is what would show up in lab tests, well indications that it could be present does. A scan confirms it...but before THAT much damage is done, enough to show up as 'indications' or on a scan, a person will experience symptoms as the damage process is occuring.

The best ways to really rule it out is to do an elimination diet, which is REALLY long for gluten or you could get digestive enzymes specific for gluten to see if it relieves some of your symptoms. You could do the same for lactose too.

[mrsdoubtfyre]

If you have gas, and bloating and frequency, I'd eliminate all fruit and
fructose (read labels) and sugar for 2 weeks. If you feel better, then that
is your answer.

I developed this 4 yrs ago, and just identified it last year. It was amazing how miserable I was and how easy it was to fix.

http://en.wikipedia.org/wiki/Fructose_malabsorption
The trigger that pointed me in that direction was the use of honey I was putting in my tea. That seemed to make me ill within a couple of hours.
So I gave that up. Soon I was noticing certain foods set me off more than others. Then I started looking it up. There are lists of foods on the net showing fructose content, to guide you.

I also do Beano for vegetables, now. And that helps in other ways.
And I only use Lactaid milk now. It is so much fun getting OLD! LOL

[The Pogue]

Describe how you are feeling unwell.

[Carly'sMa]

What are your symptoms. And, do you know what is hidden dairy products in many foods. For example, whey has lactose, buttermilk isn't ok. You have to read the lables so carefully. If you don't know exactly what's in it, don't eat it since it might have milk.

I've had lactose intolerance for 17 years.

[Keggy]

Fairly certain it is not gluten or fruit. I felt pretty strongly it was lactose (if it is a sensitivity issue). I know about the lactose in other foods. Lactose intolernace is really not that common, often misdiagnosed. I would think that if that is what it is, then I would have had to have lactose intolerance most of my life and it became much worse in the past few months where there is little that doesn't have an effect.
Odd thing, I had lactose yesterday and didn't get sick at all. NOt comfy posting my symptoms here, solly!

[LIZARD]

Lactose intolernace is really not that common, often misdiagnosed.

I actually read that it becomes more prevalent with age and is very common. One article said something like 25-30% of us will have it at some point.


LIZARD :)

[Kristen (ColeysMom)]

Fructose intolerance & malabsorption often has a delayed effect...commonly up to 3 days It also has a 'build-up' type of reaction. Where you could have something that is seemingly high in fructose, like a banana or apple and be fine. But if you add to that a grain or nuts or something else it could bump you over the edge.

Garlic is LOADED with fructose, so you could have an italian dinner (with tomatoes that are VERY high in fructose) and garlic bread, and BLAM! The bread will have the fructose in the grain as well as the additional sugar (sucrose) too...

It doesn't need to be sweet to have a lot of fructose, potato skins and most fruit/veggie skins are loaded with sorbitol, which reacts in your body like fructose...and some people are intolerant to that while not fructose, but most are intolerant to both at the same time.

If it grows from the ground, it has fructose & sorbitol in it.

Some people who have FM (verus intolerance - FI is metabolic, FM is digestive) find that they can manage the problem by always keeping the balance of glucose above that of the fructose intake.

So they can have the italian dinner, but just have a couple rolls of sweet-tarts or smarties (or glucose tabs) follow it up. You could try adding glucose/dextrose to see if it helps balance your symptoms.

GI upset (the full gammot), fatigue, migranes, depression and joint pains are some of the most common FM symptoms. FI symptoms involve low blood sugar and seizures, plus more.

But FM often has company...overgrowth and other food intolerances. It is not clear IF or which causes which, but often a lengthy very restrictive diet will heal the GI track so that intolerances retreat.

It is also not true that you have always been intolerant to lactose. Damage can cause it to occur. Generally damage is not selective so lines between what is causing a problem can be blurred. But once you find the BIG insult it should be obvious to you once eliminated.

[mrsdoubtfyre]

That will cause gas/bloating and GI problems, is constant use of acid blocking drugs. Both H2 antagonists and proton pump inhibitors can cause this.

When acid is lowered in the stomach then proteins cannot be broken down properly for their digestion lower down. What happens then is that they move on instead, to the bacteria in the colon, which ferment the protein. This creates gas, a very foul smell, and perhaps fast transit/diarrhea.

As we age, loss of acid also occurs in some people. Up to 30% or more may lose the ability to digest proteins because of this. They also lose B12 absorption. This is called achlorhydria.
http://www.emedicine.com/med/TOPIC18.HTM

You may also have a dysbiosis, which can come from using oral antibiotics, or eating contaminated food somewhere.

The fructose GI intolerance is hard to identify. It was only when I had honey in my morning tea that I noticed an immediate response. Also when looking at the food lists, PEARS are listed with the highest fructose and I now know why I have never been able to eat pears! I had been to the doctor for 3 yrs, and had gall bladder tests (again) and an abdominal ultrasound, to no avail. Nothing showed up. The elimination diet was totally revealing about this.

[Kristen (ColeysMom)]

Yes! Yes!

Plus, low acid makes the overgrowth opportunity greater!

FI/FM is a chicken/egg type thing...

Overgrowth can lead to FM because as fructose sits in your GI track it feeds the growth. Overgrowth can cause damage that slows digestion...this scenario gives way to other food intolerances and further damage and discomfort.

Other intolerances can also start the chain reaction that leads to FM. If fructose is not broken down adequately in the GI, then it can cause bigger issues as it moves onto to the liver...

plus there is the whole leaky gut problem...

[mrsdoubtfyre]

Your information is very helpful for me!

I think when other food is present, the symptoms are buffered and delayed.

That is why when I had honey in my tea (before breakfast) it was so obvious.
Syrups also set me off...like maple syrup. (I only used 100% maple, and not the others which are so full of additives). So now I have dry pancakes!
I've even had to give up jellies/jams!

Another additive which I found this summer as a SURPRISE was SORBITOL.
Hershey's puts it in non-dietectic candies now. I had a huge reaction to
Hershey's cherry cordial kisses. They did not put sorbitol in them 2 yrs ago, when they came out. I tried them then, and no problem. This summer however they reformulated them, with alot sorbitol in them to keep the cordial moist I guess--- they were devastating to me. That is what set me off so dramatically, in fact and I cut out ALL sugar, even the little sucrose I might put in my tea.

Sorbitol has always been in diabetic sugar free candies, and those typically have a warning on them. Hershey's told me they do not have to unless there are 50grams/serving or more. They would not tell me how much sorbitol was in the kisses. But 5 of them were dynamite for me! I was really angry, called them up and they sent me $9.00 in coupons! Now I read EVERY label. So watch out for HIDDEN sorbitol.

We use Sorbitol as a compounding aid and also as a laxative in hospital and long term care. It is gentle to use in the elderly and often helps with opiate induced constipation. But I certainly didn't need it, in the woods with no running water!

[Kristen (ColeysMom)]

It's unbelievable how much is allowed into our food with little or no packaging information!

This is why when dealing with an intolerance it's best to go 'retro'...

I cook like my grandmother did...if it comes in a box or a can, I don't buy it!

Mrs D, have you found a source for glucose or dextrose? I can make maple syrup & cookies, etc...without any issues for Coley. Although recently his tolerance for more natural sweeteners has improved greatly, we get natural honey & maple syrup now, whereas 3 years ago that was OUT OF THE QUESTION!

I have all sorts of information I'd be happy to pass on. Coley at one point couldn't have 1 green bean without a reaction so I've got quite the collection of information on the subject & I'm happy to share whatever I can!

[Keggy]

This isn't really Keggy writing this, she has just been kind enough to let me post here about my problem (I am Matilda). IShe the coolest.

Ok... here is some info to work with (geeze). I have always had stomach aches. Somewhere in my teens it got worse and I began to have a lot of distenstion. It got worse with stress as I got older. If I am stressed I get sick, sick, sick.
I have been hospitalized several times for this because I get so unbelivable constipated they are afraid something will go boom.. I could go an easy month without a bm.
anyhow, been somewhat better with that for the past ten years or so, but on and off again its still a problem. Then last year I started dieting and I developed this ....much too often... burst of sudden and loose bowel movements. It has kept me from dieting because every time I did this would happen, could not work. So I gave up dieting.

But now I see it happens sometimes anyway. So I suspect horrible things, had some tests and have found nothing. As a side note, I did, and still get this incredible pain in my side sometimes (about 6 years now?? crap!) used to happen after exercise (so I gave that up) but still get it. Had a cat scan, showed nothing, blood work ..nothing
So, after this past week I am not so sure it has anything to do with lactose cause I have been eating it and nothing is happening. (And I do mean nothing).
No artificial sweetners in my diet either.

[LIZARD]

No artificial sweetners in my diet either.

This is interesting to me, since sugar has proven to be the most evil thing I could put in my body next to gluten. I am finding that small amounts of artificial sweetener are okay. Sugar, however, was making me blow up like a balloon, and I craved it like crack. :( So it's out the door and I'm losing again--thank God, as I have a lot to go yet.

Just curious...what do artificial sweeteners do to you?


LIZARD, learning how to eat all over again at 42 :o

[Kristen (ColeysMom)]

What is a typical diet for you? And when you try to 'diet' what is that typically?

[Tootsie]

Have you considered a gluten sensitivity as the reason for you undiagnosed gastrointestinal symptoms? My grandson never complained but had been constipated almost since birth in spite of being breast fed. Of course, the doctors always advised more whole grains, which only made the problem worse.

At 14, his Mom wondered about gluten sensitivity as the school wanted him put on drugs for possible Attention Deficit Disorder. Now, about 2 years later, he has improved so much, he is hardly the same kid! He also avoids dairy products as they seem to bother him also.

You might check out the Gluten Sensitivity/Celiac Disease Forum here. The folks there are very helpful with lots of ideas and suggestions. Cheerio.

[Keggy]

When I think about it I have to admit I do get artificial sweetners from time to time, but I try to avoid them. I don't like the taste and I feel like you just store them.
I don't claim to have a good diet. I like salads but they tend to make me feel quite ill. I can't handle roughage. My diet has changed a lot of the past year but its nothing to brag about. Less meat, more pasta, less dairy. It seems the healthier I try to eat (more vegetables) the sicker I feel.
When I dieted (successfully) it was atkins. Lost weight on atkins but it kept me running to the bathroom. But at least it worked, nothing else has, nothing at all. I have never been able to drop a pound on any diet but atkins.
Matilda

[LIZARD]

Have you considered a gluten sensitivity as the reason for you undiagnosed gastrointestinal symptoms?

I agree completely, especially if you're eating a lot of carb and still having problems. I didn't think I was having digestive issues, and out of the blue, my endo (whom I have seen for hypothyroid for the past year and change) said I had Celiac antibodies in my blood. I was stunned, because I thought Celiac made you emaciated (I have 80 lbs to get rid of--after losing about that much! :eek: :o ), made you a prisoner of the potty, and just generally made your life hell. I had mild gastro issues, severe arthritic-like pain and stiffness in my joints (especially knees), and overwhelming fatigue. Son of a gun...been GF since then (May) and am SO MUCH BETTER!!!!!!!! I had been craving carbs like a druggie--especially sugar--and I dumped both the gluten then and sugar about 6 weeks ago. I am a new woman!!!!!! I do still have the issues related to my weight (out of shape, bending over is a drag), but I feel better all the time, and the weight is once again coming off. :)

I won't lie; it's a pain in the buns to do, but I have to say it's been worth it, even to a picky eater like me. :)


Good luck, whatever you decide!

LIZARD :)

[Tootsie]

It's interesting but my GS has had a similar experience to Lizard's. He started eliminating the gluten which was a real challenge. My DD had to stop buying any kind of bread as it was too much of a temptation to have it in the house.
They buy exclusively organic foods and produce now.

My GS used to eat pure sugar so they eliminated that from the household also. As his symptoms and attention improved, he voluntarily stopped drinking milk and limits cheese to those times when someone makes him a GF pizza. He uses some kind of probiotics, calcium pills at 1200 mgm a day per his doctor, and mostly avoids sugar. (There's none in the house.)

His sense of responsibility has improved, he's getting A's and B's in one of the most competitive high schools in the country, gets himself up in the morning, manages his time, his own hygiene, etc. etc. He's hardly the same kid.

All this came about because my DD works with autistic children and the Mom's were telling her that their kids seem to respond better to therapy once they took gluten away from the kids. DD decided she'd try that with her own son although he's never been diagnosed with autism OR gluten sensitivity, OR celiac disease.

I lurk and hang out on this forum mainly to learn from all you Mom's who deal with children diagnosed with autism. Cheerio.

[Kristen (ColeysMom)]

I'm just going to repeat...fructose.

It's in veggies, fruit, whole grains, legumes, and nuts.

I was surprised to see Coley's constipation gone when we eliminated basically all fiber from his diet, but it happened!

go with atkins...and google fructose intolerance/malabsorbtion

keep us posted!

[Keggy]

So you say I could have a gluten sensitivity even though I do not have Celiac disease?
And you say I could be getting sick from that even though I eat it everyday (without getting sick) and I feel fine, and just get sick maybe one to three times a week whether I eat it or not?
Kristen, I can't do the Atkins diet because I get sick (running to the bathroom) from it pretty much several times daily when I do.
At this moment I would just like to figure out what is making me sick so I won't be going on any diets too loose weight. And I doubt I am getting sick from fructose because I have been having very little fructose (sometimes none for long periods of time) in my diet. I don't even eat whole grain pasta.

[LIZARD]

So you say I could have a gluten sensitivity even though I do not have Celiac disease?
And you say I could be getting sick from that even though I eat it everyday (without getting sick) and I feel fine, and just get sick maybe one to three times a week whether I eat it or not?

Celiac is a strange beast. You don't have to be "sick" to have it; as I said, none of the effects I had were "classic." Gluten sensitivity can exist without Celiac, too. It's a continuum. I think my son is gluten sensitive, and I'm trying to pull him off of it. Also, the days you get physically sick may be from the amount of gluten you consume.

LIZARD :)

[Kristen (ColeysMom)]

Yes you could have a sensativity to, or an intolerance to gluten without celiacs.

You could also be experiencing a 'cleansing' effect when you adjust your diet.

What you need to do is modify your diet and stick with it long enough to know one way or another.

Gluten takes a LONG time to clean out of your system. And even longer for the damage to heal.

Fructose takes about 3 days to get out and months to years before healing.

I have to double check with you though on whether you are sure you've removed all fructose...and it needs to be ALL in order for you to know.

The only non-fructose foods are:
-plain meats (nothing breaded or prepared)
-white potatoes without skin (no red bliss, no yukon gold, only white)
-dairy (plain milk, plain yogurt, cream, butter, NO ice cream/etc)
-plain pastas (no whole grain, no veggie or flavored)
-some sour dough breads and some pita breads (most breads have sugar and other fructose additives like sorbitol or whole grains)
-fish (plain)
-celery and plain olives (no other vegetables)
-green herbs (like parsley, nothing like cinnamon or nut meg, no garlic no onion, no peppers except peppercorns as in black pepper)
-rice (white and plain)

This means:
no fruit (no juice no whole fruit no fruit flavored things)
no veggies, no beans (no coffee, no cocoa, no nuts, no legumes), no seeds
no condiments (some mustards are ok, but vinegar bothers some FI people too)
no sweeteners (no artificial, no HFCS, no sugar, no syrups, no honey, no maple syrup, no molases, etc),
no sweets (no cakes, no candy, nothing like that)
no alcohol (no wine, no beer, no hard liquor)
check any meds you take (many have fructose additives)



Ok, so Coley used to have lots in his diet and it never was obvious what was making him sick, once we removed it all, at the Drs insistance, we trialed him on things that were low in fructose, like spinach. He would have just one tablespoon with dinner and WHAM! But it wasn't that obvious like that until it was ALL removed from his diet. And even after it was removed sometimes it took days for the reaction to occur.

The doc continued to insist that he HAD to have some tolerance or he'd be dead from liver failure so we kept trialing him here and there...still WHAM!

It took, hmmm, maybe a year before he could handle one broccoli spear with dinner 1x/week. Or a little spinach... Even mushrooms banged him up.

It wasn't until his current GI that he started treatment for overgrowth in addition to his restricted diet. NOW, well for the past year, he's been able to tolerate more & more fructose. His diet is still limited, and I can still tell when he's had too much by the coloring of his face and his behavior, but he is now up to about 3-4 servings of fruit/veggies per day. AND we have been able to incorporate more natural sweeteners into his diet too. Real nasty little kid b-day cake and stuff like that send him into a tizzy (and into the bathroom) pretty quickly.

So it seems his intolerance gave way to overgrowth, or perhaps the overgrowth gave way to his intolerance. We won't really know that answer for sometime...as we continue to treat overgrowth and continue to test his tolerance. It's been 3 years now and it's a very careful process.

So, of course I don't know you at all, and I don't want to imply that I KNOW it's FI/FM, cuz I don't, I'm just saying that you need to make sure you REALLY look. If you have, my only other suggestion is to look into phenol sensativity or overgrowth, in addition to checking into gluten sensativity/intolerance. Gluten, like fructose hides in LOTS of places. And they are both similar in that once your GI track is damaged, even just a little bit will keep it that way. You need to get it ALL out and let your body heal.

Hope this helps.

[Tootsie]

I can't advise you strongly enough to sign up for your own membership on Braintalk, and then so to the Gluten Sensitivity/ Celiac Disease Forum and ask your questions there. Those folks, have had years and years of frustrating experiences, very similar to yours, before realizing, that eliminating gluten and sometimes dairy from their diets, eliminated their symptoms.

I have read posts on these forums from people whose ONLY symptom of celiac disease are neurological symptoms! On a more personal note, I have a good friend who went to her doctor not feeling well. She had a hemoglobin of 4 and was told to come back immediately for blood transfusions. They had never seen anyone still walking around with a HgB that low! Thinking she had cancer and after many, many tests, they found that she had celiac disease when the biopsy of her small intestine showed damaged villi. She has been well the past 2 years and even travels extensively!

Unfortunately, there are no definite rules that apply to everyone as symptoms are highly individual. However, there is no harm is using a gluten free diet, even if that turns out in the long run, to not be the problem. Cheerio.