Allergy Test Negative to Milk Protein Allergy, Could He still be Intolerant?

[Mydreamcametrue]

My DS has an allergist test when he was 9 months old.  He was a hypoallergenic formula since 6 weeks old.  He is now 14 mos old and on Lactaid (Lactose Free Whole Milk).

The allergy test showed he was not allergic to milk proteins, but is allergic to soy proteins. 

My question is:  Even though he is not "allergic" to milk, could he still just not tolerate casein and whey?  He is still a very very fussy baby and crys and screams about 80% or more of the day.  Most of the time he just starts screaming out of the blue...  

I have always dreamed of mother-hood as being the most exiting thing and it has been the hardest.  I feel like I can't make him happy.

Any suggestions? 

Thanks, Wendy

[Mom to M&M]

Absolutely. Allergy testing is not very accurate on kids under age 2. In addition, such testing only really shows actual anaphylactic allergies, not GI allergies or intolerances. Maybe cut out cow's milk and try rice milk instead and just make sure he gets fat in other ways?

[Mydreamcametrue]

Hey Karen:

I have thought about the Rice Milk.  I did a new topic on Rice Milk.  Do you have any experience with it?  I read that it is mainly carbohydrates.  He would need to get protein and fat elsewhere.

The only problem is that he does not eat barely a thing.  Our doctor has referred us to the feeding clinic.

Oh and the upper GI also confirmed he does have reflux. 

* Do you think he could just be Lactose Intolerant?  I could try cutting out all other milk products and just give him the Lactaid Milk?  What do you think?

Wendy

[Diegos Mama]

Yep, my son also came up negative for milk allergy with a skin prick.  Was it a blood test?  He was VERY allergic to milk -- just grew out of it at two years.  Up until then, he'd puke every time he had it... not hard to decipher if it bothered him.  So, I can guarantee the test was wrong.

His allergist said even a positive can be a false positive under the age of two and that the tests are pretty unreliable.

[Mydreamcametrue]

Oh really!  What kind of milk did you give your son? 

Zach never got sick after milk, he just was EXTREMLY FUSSY and gassy and screamed and cried in pain.  The hypoallergenic formula did wonders for him, but not after that we added solids.  Whenever we gave him yogurt, etc. he cried in pain. 

He seems to tolerate the Lactaid pretty good, expect still is very fussy and stinky gas a lot.

Should I cut out all milk?

Thanks,
Wendy

[Mom to M&M]

Wendy - I just replied to your rice milk thread. It's not very likely that he's lactose intolerant - very few babies are. Much more likely that he has an intolerance or GI allergy to the milk proteins - and this in and of itself could be a huge reason why he refuses to eat much. Like Laura said, allergy tests under the age of 2 are quite unreliable - if I were you I'd cut out all dairy for at least 2 weeks (even hidden dairy) and see if you see positive results. Yes, if you use rice milk you'd need to supplement fat and protein in other ways. Will he eat avocado? Can you add flax oil and/or olive oil to his foods? Can you meet with a dietician?

[Lucysmom]

Wendy - You have already gotten some great advice that is completely spot on.  My dd cannot have milk or milk products because she vomits violently everytime.  We did an allergy skin test and a blood test but before the results even came in our pediatrician said that even if they do not come out positive she still is definitely allergic.  Both tests indicated that she does not have a systemic/anaphylactic allergy to milk.  Rather, her allergy is gastrointestinal meaning she cannot digest the milk proteins.  We were relieved to hear that as that means we do not have to carry around meds to counteract anaphylactic shock. 

It really sounds like your little guy has a dairy intolerance and he would be much better off without milk proteins at least for a while.  Even though he is not vomitting like my dd, it still sounds like his digestive system is being taxed by the milk proteins.  BTW, the only test out there to determine whether or not a child has a milk protein allergy that manifests itself in gastrointestinal symptoms is a stomach tissue biopsy.  These are rarely done for obvious reasons. 

The advice we have received is that we should avoid all milk products until she is at least two and then try them again.  Continued exposure to milk products will decrease the chances of her outgrowing the allergy.

My dh is a doctor but some things I hear from other moms on BW from here in the US and all over the world really anger me as sometimes they do not get accurate information from their doctors.  Or their doctors are totally disinterested and thus do not provide proper care.  It is truly heart-breaking.  If there is anything I can do or ask my dh (he has an allergist on staff) then please let me know. 

Huge {{{HUGS}}} to you and your little guy.
 

[Diegos Mama]

My son had breastmilk for just shy of a year, with me on a strict eliination diet -- then we went onto rice and when he outgrew the soy allergy a bit after a year, on to soy.

[Mydreamcametrue]

Thank you so much for information everyone!  I just love this site, I don't think I could get through my day with out you all!!!

Melissa:  Thanks so much.  I always thought that if the allergery test was negative, then they were not allergic.  I never knew they could still have an allergic reaction (gastro related).  your information is very very helpful.

So do you think even though he is not throwing up, he still could not tolerate the milk proteins?  I know as a baby even when he had yogurt, he would wake up all night long screaming and crying.  Now as a 1 year old (14 mos old) he still spits up daily and fusses about 90% of the day.  I am sure it has a lot to do with his reflux and just his temperment, but I still think there is something else going on and it could be the milk.

Our doctor told us to continue with the Lactaid Milk.  I am very nervous to try Rice Milk, because he already is small for his age and I know it does not have the right mix of proteins, fats, etc.  I don't want to try Soy because that test showed a (+) skin prick to Soy Protein, even though it was a very low #. 

What milk did your daughter drink??

Diegos Mama:  How did you determine he outgrew the soy allergy?

Thanks so much everyone:
Wendy

[Mom to M&M]

I know you're concerned about Zach's weight, but if the milk is bothering is tummy and/or aggravating his reflux, that may be causing him to eat less in the first place. Perhaps if he feels better without the cow's milk proteins he will eat more and gain weight that way? Can you try the vanilla rice milk and make smoothies? Add half a banana, some ice and a tsp of flax oil (one txp has healthy fats and almost 5 g of fat!)?

[Diegos Mama]

P.S. for children who are very allergic, even the elimination diet with breastmilk can be a problem.

I determined the soy was okay because he was no longer fussy after having it, it didn't cause differences in his stools, or cause him to spit up.  Basically previous symptoms disappeared.

I added lots of good fats to Emilio's diet when he could have neither, avocado, olive oil, flaxseed mixed in yogurt.  Essentially I tried to make up for it elsewhere.

There are prescription formulas which have no milk protein.

And interestingly I was able to determine that Emilio was allergic to caesin and not whey, well, at least later on and if I read labels very carefully I was able to build a repertoire of things he could eat.

If the lactose free milk is still bothering him, you've simply narrowed it down to it being proteins as the issue and not lactose.  Are you under the care of a GI specialist?  Sounds like you need one if not.  Is he medicated for his reflux pain?

[Lucysmom]

Hi -

Like Karen and Laura have said already, it does seem like he cannot tolerate the milk proteins so I would get him off of them right now.  Stomach pain and gas are gastrointestinal signs of a milk protein intolerance.  And Karen is absolutely right in saying that once he is off the milk proteins and his tummy does not hurt, he will most likely be willing to eat other foods and you can compensate for the lack of proteins and fat in rice milk.  I have done some reading on food aversions and one of the main reasons for not eating properly and not gaining weight is physical discomfort caused as a result of food.  Once the physical pain is gone, then children can begin to experience pleasurable sensations when they eat so they are more likely to eat and gain weight. 

I also agree with Laura in that it would be best for him to see a pediatric gastroenterologist so that this can be looked into thoroughly.  But in the meantime I would get him off the Lactaid and any other dairy products immediately and onto the rice milk. 

Again, I am sorry your doctor has not been all that helpful.

HUGS

[Mydreamcametrue]

Melissa:  I really think I am driving myself crazy thinking about all this.

Maybe I should just wait to try anything until we go to the feeding clinic and talk to the doctors and the dietician. 

What milk do you give your daughter???

I am so stressed, I just want my baby healthy and I don't want to do anything that will hurt him later in life.

Wendy

[Lucysmom]

Hi -

My dd is not allergic to soy so she gets soy milk.  Honestly, trying him on rice milk will not hurt him whereas we all seem to think that he has a problem with milk proteins.  Why not just try him on the rice milk?  If you don't then you know he definitely won't be feeling any better, but if you do try then there is at least the possibility that he might start feeling better.  I think it is better to be proactive in this case and see if over several days he fares better with rice milk and no dairy products.  I am sorry you're going through this and that you have not had what I would consider proper guidance from your physician.  It must be so heart-breaking to see your little guy uncomfortable and fussy.  I think rice milk and no dairy at all is the way to go....just my opinion and you have to do what you feel is right.  But I send you huge {{{HUGS}}} and please keep us posted as to what is going on. 

[Mydreamcametrue]

Thanks everyone.  I think I am actually going to call the allergist tom. and get him an appt. for another prick test, even though I know it is not 100% accuarate.  The ONLY reason being is because when we had it done at 9 mos. old he showed (+) to soy protein, but is was a very low #.  I am just wondering if maybe that was a false (+) and he can tolerate soy.  If that is the case, then I will just give him Soy Milk and problem solved (well maybe).  He could still be intolerant to soy and milk both.... Anyhow worth a try.

Today he has fussed alot, but I think mainly out of frustration more than anything.  He is fine as long as we are out doing something or he is outside. 

Maybe I have just read into him whinning and fussing so much, I just want an answer and I can't except that that is just the way he is "His Tempermeant".  I know for sure he is a very touchy baby.. Hates strangers... 

[Lucysmom]

Hiya - Was in this forum and wanted to check in to see how things were going with Zach.  I hope things are better.  Let us know!

[Mydreamcametrue]

Hello:  Thanks so much for checking in.  We actually took him to the Children's Hospital Feeding Clinic today. 

Since 8 months old he has went down on the weight curve.  They are worried that he is not gaining enough weight.  Also he has had 3 infections since August and 1 viral infection.  He has been on 3 antibotics.

They are testing him for Celiace Disease, Malabsorption, his Immunoglobulins and his stool for toxins, etc.

They also want us to switch him to all Pediasure instead of milk.

We will have some answers soon.

Thanks for checking in!  wendy

[binxyboo]

Poor little thing. Keep us posted!

[Mom to M&M]

Glad you went to the clinic Wendy - and glad they are trying to get to the bottom of this. Definitely keep us posted - big hugs to you and Zach.

[binxyboo]

As I think I told you before, we are on rice milk. He was the fussiest eater for a long time, but slowly but surely we are turning a corner and he is eating a bit more. Hope things work out okay.Did you ever do the dairy elimination diet that we talked about a long time ago?

[Mydreamcametrue]

Hey there:  I was scaired to do the dairy elimanation diet, just because I was so nervous about him not eating. 

I am just going to wait for these results and go from there.  I do know one thing for sure though, since he has been drinking this Pediasure he has had some really really bad gas.  It does not seem to bother him, but stinky.... LOL

Thanks for all your thoughts, our first feeding therapy is Monday.

[binxyboo]

I hope things get better soon. I don't want to seem pushy, but if I were you, I would get him off the dairy. All the signs are there that he is not tolerating it well. Anyway, just wanted to let you know we are thinking about you!

[Mydreamcametrue]

I know, but they are so worried about his weight now because he has gone down on the curve since 8 months old.

I will have more answers once the results come in...

[Cassie]

Just a thought... Pediasure is lactose free but is still milk protein based.  So if he is milk protein intolerant, Pediasure is going to cause him problems also.

My little boy Palmer is milk and soy protein intolerant.  I am in the process of weaning him to rice milk.  I just bought some rice protein powder to add to the rice milk.  He gets 1/2 an avocodo every day plus I add Flax seed oil to his meals. 

There are some other supplement that might be more appropriate... Peptamin Jr is milk based, but the proteins are more broken down. 

[Mydreamcametrue]

Cassie:  How did you know that your son was Milk and Soy Protein Intolerant, not allergic?

- We got Zach's test results in and he has to be re-tested for several things because they screwed it up.  Also his Alkaline Phospahtase level (the enzymes found in your liver and bones) was elevated  

- Now we are on #4 antibotic because he has yet again ANOTHER infection.  His ears are clear, no strep, but his white blood cell count is high.  So he is now getting shots of antibotics.

Does the repeated infections sound like an intolerant to the milk protein?

Thanks Wendy

[Cassie]

Some of his tummy issues could be due to all of the antibiotics.  I would try giving him some probiotics.  Just make sure they are dairy/soy free.  I found one fairly easily.

I knew P was dairy/soy intolerant because he is normal a very happy go lucky baby, but every time I ate/drink dairy or soy he got really crabby, refused to sleep, had mucousy stools and got this really bad diaper rash that went from a totally fine butt to red and bleeding it like 1 hour.  One day he was up for 13 hours straight screaming.  So I started keeping a food dairy and realized the connection.  Dairy and soy is the first thing I tell women to eliminate from their diets if they suspect a food intolerance... within a week of eliminating both dairy and soy I saw a difference.

[Mydreamcametrue]

I have been giving him probiotics for about 2 weeks now, but you know they are not dairy free.  Not this kind. 

Do you know a name of some that are diary free?

Okay this is gross, but a diaper full of muscus looks like you just blew your nose in it right?  Or is that normal.  I can't even remember what a child's normal poop is supposed to look like because Zach used to be so constiptaped he screamed when he went to the bathroom, now when he goes it is a major blow out and it looks like snot in it or it has everything he just ate in it... 

[binxyboo]

Mucous all right

[Mydreamcametrue]

That is what I thought, but DH just says it looks like sh*t to him and then wants to throw up.  It does not bother me at all,  but he cannot stand it at all.

Thanks!