Confirmed! She is lactose intolerant...... now what?

[OceansEve]

Just found out from fecal tests my 18 month old is lactose intolerant. In recent weeks though we are beginning to think milk isn't the only thing. DD3 is reacting to my milk w/ and w/o dairy the same way DD2 did at this age, but her feces are not the bright seedy yellow DD1 or DD2 were, so even if DD2 doesn't have another allergy beside milk, I'll put money down DD3 does. I don't know where to start.... Should I remove eggs, wheat, and soy from our diet for a few weeks and see what happens? I don't even know where to start, it was hard enough to give up dairy. Does this mean we can't have any bread products at all if we give up gluten?

Also we had her on raw milk when the allergy symptoms started coming back so why? I thought the lactase was supposed to take care of the lactose and nullify any ill effects? or does it not work that way for everyone?

We're also talking about taking other allergens like strawberries and tomatoes, but I saw someone mentioned corn allergies in another thread, I'd never thought about someone having a corn allergy.... are there any other less common allergies I need to know about?

I just need a jumping in point, I'd really appreciate some help. whether it be websites listing allergens, good cookbooks, or anything, really. I don't really know where to start other than looking at everything in my kitchen label by label and giving 70% of it away.

[elanorh]

I'm not familiar with lactose intolerance tests - although I'd read that it is seldom present until a child is three???

I wonder whether this is a dairy protein allergy, or the lactose intolerance? Either way you'd want to cut all dairy in all forms. My dds' dairy protein allergies were identified initially via stool samples at the Ped's office -because blood was found in them.

Have you been eating lactose-free dairy in the interim? Or dairy with lactase (for you or your little one?)? If so, I'd simply cut all dairy for two weeks, before worrying about cutting anything else. Wait and see what happens!

Some good cookbooks which I use (dairy and soy-free) are:
The Culinary Guide for MSPI (Wise)
The Milk Soy Protein Intolerance (MSPI) Guidebook/Cookbook (Field)
and
What's to Eat? The Milk-Free, Egg-Fee, Nut-Free Food Allergy Cookbook (Coss)

If you haven't eaten any dairy, and nor has she, for the past two weeks - then you may want to consider the eliminating something else. Soy, or egg, most likely IMO. Is there a history of gluten issues in your family?

[alegna]

I also wonder how you decided it was a lactose problem. From my research it is MUCH more likely a milk protein issue.

-Angela

[kjbrown92]

There is milk protein allergy but there's also milk intolerance (which is more than just the lactose, and also more than just the protein). My DS can't have any part of the milk, raw or pasteurized.

Without gluten, you can still make things like buckwheat pancakes, millet pancakes. We make bread that's dairy, gluten, corn, and soy free. We still eat plenty, though at the beginning there was quite an adjustment.

I would take ALL milk out first to see if that's the only problem, for a couple of weeks. Then if all the symptoms didn't go away, take out the others (gluten, soy, and corn). And keep a food journal so you can record all food/drink/supplements, and all symptoms.

[gsd1amommy]

Is it possible to seek out an order for your infant daughter to have the same stool studies your 18 month old had? I am assuming she had a Fecal Reducing Substances Test. It would be an excellent starting point since lactose is present in your breast milk whether you eliminate dairy in your diet or not. If your infant is lactose intolerant, eliminating everything under the sun isn't going to help until that is addressed.

[alegna]

Which is kind of my point- infants and toddlers, by definition, are not lactose intolerant. I'd question anyone diagnosing that.

-Angela

[gsd1amommy]

Originally Posted by alegna

Which is kind of my point- infants and toddlers, by definition, are not lactose intolerant. I'd question anyone diagnosing that.

-Angela

I'm not sure why you would question it. There are accurate diagnostics to determine lactose intolerance.

[OceansEve]

It was the fecal redusing substances test. So can someone explain that to me exactly? The ped said lactose intolerant - does it actually mean something else? Whatever it was they were looknig for she said there should have been none and there was a LOT.

elanorh - thanks for the cookbook recs!

She did this test and is sending us to a GI specialist if we can't get the diarhea to stop by removing other things from her diet. she said most allergists don't want to see them till they are three. true?

[gsd1amommy]

Originally Posted by OceansEve

It was the fecal redusing substances test. So can someone explain that to me exactly? The ped said lactose intolerant - does it actually mean something else? Whatever it was they were looknig for she said there should have been none and there was a LOT.

elanorh - thanks for the cookbook recs!

She did this test and is sending us to a GI specialist if we can't get the diarhea to stop by removing other things from her diet. she said most allergists don't want to see them till they are three. true?

Did your 18 month old and your infant both have the test?

[gsd1amommy]

Originally Posted by OceansEve

It was the fecal redusing substances test. So can someone explain that to me exactly? The ped said lactose intolerant - does it actually mean something else? Whatever it was they were looknig for she said there should have been none and there was a LOT.

elanorh - thanks for the cookbook recs!

She did this test and is sending us to a GI specialist if we can't get the diarhea to stop by removing other things from her diet. she said most allergists don't want to see them till they are three. true?

The Fecal Reducing Substances Test is performed after ingesting a product containing lactose. Feces is collected and a special solution is added to the feces. I think it is called Feeling's solution. If there is undigested lactose in the stool it will be indicated by a change in color.

From your explanation of the results, she is not producing adequate lactase in her digestive tract. Basically, the amount of lactose in her food is exceeding the capacity of the lactase she is producing to digest it. The lactose is then just passing through her.

Is your 18 month old still nursing? If so, she can still get breast milk but it would need to be pumped and treated with lactase for 24 hours then fed to her. The same goes for your infant. If she has also had the FRST test and diagnosed as lactose intolerant, the same would still apply. Even if you have eliminated dairy in your diet, the amount of lactose in your breastmilk is constant.

[OceansEve]

We only had the test done on DD2.

When DD2 was born we noticed a horrible rash that started on her face and worked its way down her body at 2 weeks we started eliminating foods, by 2 months we figured out if I didn't eat anything with milk in it the rash went away. (This is the exact same thing we are experiencing w/ DD3) By 9 months she started eating solids - grandparents started feeding her products with milk in it (be it intentional or not we will never know) when the rash did not return we thought she had outgrown it. I stopped Bfing around 11-12 months because I got pregnant again and my body dries up. We switched to cow's milk. A little after her first bday I took her to the chiro, told her she was an absolutely miserable kid, cried all the time, hardly ever happy, never slept through the night and she mentioned allergies and told me it may change symptoms but the dairy allergy is probably still there. Almond and rice milk gave her bad diarhea, then after talking to the farmer we used to get our raw milk from (wondering if her had goat milk to sell) he mentioned skim raw (one of his boys has a problem with the cream, but can drink it skim) We gave it a try (started sometime in february) and she became a totally different child. Then over this last month she has returned to being miserable and has diarhea to loose stool to diarhea every few days.

The ped didn't tell me to give her milk before the sample. So the only lactose that would have been in it would have been from the breading on chikfila nuggets or the couple of annie's chedder bunnies she found in the car the day before So if there were a lot, I guess she isn't processing any of it? At any rate the lactase in the raw milk should have been taking care of it up until two weeks ago when we removed it.

[gsd1amommy]

Are you still trying to give dairy treated with lactase? I see in the update that you took it out 2 weeks ago.

As for the lactase treating the raw milk, it is very possible that it is not eliminating all the lactose in the milk and apparently it is not eliminating enough for her. When was her FRST done in relation to stopping the raw milk?

[OceansEve]

We stopped the raw milk about two weeks ago when the diarhea wasn't going away we thought maybe it was the cause, but it still hasn't gone away. However we have not gone truly 100% no dairy for longer than 4 days because I didn't know about chickfila and then gma gave her milk this past friday so right now we are at 4 days with absolutely no dairy, but now that I'm thinking about it I believe my gma's roll recipe has butter in it and they had rolls on sunday..... so I guess we are 2 days 100% no dairy. I froze my skim milk we hadn't used so the good bacteria are probably dead aren't they?

[gsd1amommy]

Also, milk allergy and lactose intolerance can occur at the same time.

[OceansEve]

what do you think from what I've described?

[gsd1amommy]

Originally Posted by OceansEve

what do you think from what I've described?

Well, the positive FRST result is hard to dispute. Of course, she can have a milk allergy with it, too. I see that you have eliminated all dairy, even hidden, right? That will cover the milk protein allergy if it is there.

[OceansEve]

Yep, that's what we are trying to do, eliminate everything with any form of dairy.

The impression I'm getting is it would be easier to take out one allergen at a time instead of trying to take out everything and reintroduce. So if her diarhea doesn't go away which allergen should I take out next IYO?

[gsd1amommy]

Originally Posted by OceansEve

We stopped the raw milk about two weeks ago when the diarhea wasn't going away we thought maybe it was the cause, but it still hasn't gone away. However we have not gone truly 100% no dairy for longer than 4 days because I didn't know about chickfila and then gma gave her milk this past friday so right now we are at 4 days with absolutely no dairy, but now that I'm thinking about it I believe my gma's roll recipe has butter in it and they had rolls on sunday..... so I guess we are 2 days 100% no dairy. I froze my skim milk we hadn't used so the good bacteria are probably dead aren't they?

I would absolutely eliminate dairy in all forms, even treated with lactase, to see if the diarrhea clears. Obviously, your 18 month old is not making enough lactase on her own to tolerate lactose. You are also not eliminating enough lactose with lactase for her to tolerate, either. So, eliminating ALL dairy would be my first step.
As for the allergist issue, my son saw one when he was 18 months old.

[elanorh]

Our Pediatrician didn't recommend an allergist referral 'til 3; she said that before then, the positive/negative results are less reliable, and we had her allergies under control via elimination anyway, so there was no need to mess with it.

I'd agree to cut all dairy, 100%. Do you have an avoidance list so you know all the hidden and obvious terms to avoid? It's difficult at first, because putting butter or margarine on things is second-nature; most difficult for the extended family, you and your dh will adjust quicker. Every time I talk to one of my sisters while we are eliminating dairy, she will gasp when I tell her I ate oatmeal - she only makes it with cow's milk, so assumes that I do too.

Give the dairy removal a good 3 weeks; by the end of that time, you should be more proficient at knowing what you can and can't eat, and unlikely to have accidentally re-exposed her.

If fast food happens much in your house, we've had good experiences with Wendys, Subway, and Outback Steakhouse in terms of being able to find things on their menu which we knew were safe for the girls. Look online for their nutrition information. (We travel quite a bit and need to know where to get safe food).

Generally, any time a recipe calls for 'melted butter or margarine,' you can do a straight substitution of canola oil (or vegetable oil, or olive oil). If it's for a baked good, do about 85% oil and 15% water to get the right water/fat ratio ....

You can substitute coconut milk or apple juice (or soy milk if you like it) in most baked goods recipes. I prefer coconut milk.

You'll get the hang of this quicker than you think!

[OceansEve]

I think I have a pretty good handle on the hidden milk, where I had been messing up was not looking at fast food nutrition and just assuming something like chicken wouldn't have milk in it. I learned my lesson.

I found a palm oil margarine from spectrum at one of our local health food stores today!

I never thought about using apple juice in place of milk - thanks! I have some coconut milk too I could try. I have an objection to soy unless its soy sauce.