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Dairy Trial

monahere

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monahere Newbie
monahere
Posted

My son is 3 yrs old, had severe milk protein intolerance as a baby and could not even tolerate breast milk. This led to GI visit when he was 6mths old, endiscopy at 7 moths old which showed inflamed stomach and duodenum. Negative celiac tests but positive for the Gene.

He has been gluten free since and doing much better. I want to trial dairy. Last time we tried at age 2 and he had diarrhea and food refusal for several days.

Based on different experiences or doctors' suggestions here, what are some first foods to try with dairy? Our GI recently retired and her partner and nutritionist are not much help.

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cyclinglady Grand Master
cyclinglady
Posted

Yogurt come to mind -- plain. Yogurt and hard cheese have less lactose, but it still contains lots of milk protein. Butter would have the least milk protein.

What formula was he on as a baby, if he was intolerant to both cow's milk and breast milk? You know, damage to intestinal villi can occur from milk and other things beside gluten. I urge you to do some research.

Can you not wait until he is all better before trialing him? I think the last time you trialed him was proof that milk is not for him. Kids can outgrow intolerances but usually it takes years and sometimes they never get over it.

monahere Newbie
monahere
Posted
  • Author

Thanks for your reply. He is still on Elecare jr. For formula, since he was 7 months old.

I know, I was debating whether to trial or not, he is tolerating other things better than before, such as lentils/quinoa. If he doesn't tolerate, we won't do it for another 6 months.

Would butter baked in to his gluten-free cookies/ cake a good first step?

StephanieL Enthusiast
StephanieL
Posted

For allergies they recommend baked milk (1 cup in a recipe baked at 350 for 30 minutes) then partially baked (like on pizza) and then straight once they believe a kid has outgrown an allergy.

 

The immune system doesn't change very rapidly so our Dr. only does testing once a year and trials based on that perhaps even more spread out.

 

All that said, I would be sure he is well and happy and thriving before trying anything. You don't want to have lingering "Is it this or that" thoughts about things.

cyclinglady Grand Master
cyclinglady
Posted

I agree with Stephanie. It sounds like your son has a milk allergy -- not just an intolerance based on your posting (severe milk protein intolerance). While most celiacs have issues with milk due to intestinal damage, it is usually a lactose (milk sugar) intolerance that resolves with intestinal healing. A casein (milk protein) allergy is different.

Are you just burnt out from having to watch labels? Is at why you are pushing for a trial? I can totally emphasize with you on that issue. But I think it is better for him to have a few more years of good health under his belt first. Wait until he is ready to try it and is asking for it.

My daughter's best friend and sister are allergic to peanuts and milk. The younger sister at 10 outgrew her milk allergy. The 14 year old is still allergic to milk and peanuts. She is still hopeful. Just saving on epi pens would be a blessing. But she manages well with her friends and they are supportive.

I think I have finally improved on my own milk allergy that I have had since I was a kid and I am over 50 years old! . Same for my brother. We find that we can consume milk products sparingly but when pollen season hits, all bets are off. Even antihistamines can not help the intestinal discomfort, nasal inflammation and mucus, rashes and asthma we both get. Luckily, we do well on soy.

I hope this helps!

monahere Newbie
monahere
Posted
  • Author

Well, was not expecting a judgemental response!

Ma'm burnt out is not me! I am very strict with his food restrictions and he is starting to learn it too, but at the same time, it will be nice to have more options that will provide protein and calories and taste.

Our GI had recommended trial once a year and they are calling it intolerance and not "allergy". Many children, celiac or not, have MSPI or MPI. We are being more cautious because DS turned out positive for celiac gene.

None of the doctors we saw have given us indications of this being a true allergy. We were not even referred to see allergy-immunologist.His symptoms are all GI.

Should we be seeing allergist? Can true allergy manifest only with GI symptoms (no rash/eczema/anaphylaxis)?

monahere Newbie
monahere
Posted
  • Author

To clarify, What I am trying to ask is, DS's symptoms, even though all GI, could still be a manifestation of IgE mediated allergy?

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StephanieL Enthusiast
StephanieL
Posted

The definition of anaphylaxis is the involvement of more than one body system so if GI is the "only" thing, also if it is delayed (more than 2 hours after ingestion) then I would agree it's more an intolerance.  Again, how you proceed is up to you and your Dr. to figure out (I am not a Dr, just another Mom).  The "guidelines" I spoke of are specific for allergy which is what we deal with.  We are currently doing baked milk (since July) and hope to do a straight milk trial this summer but we shall see.  

 

I don't think anyone is trying to be judgmental and I'm sorry if you feel like that.  It's hard being a Mom esp (I have found) with food issues. I know I feel like all I do is cook/research/bake/meet with the school about accommodations/go to Dr's.   We all have to do what we think is best for our kiddos!!

cyclinglady Grand Master
cyclinglady
Posted

I apologize, Mona, if I sounded judgmental.

I suppose I have finally gotten used to feeling pretty good. There have been times when I have been afraid to eat because of severe pain (e.g. non-functioning gallbladder). I hate to see a little one suffer so much that he avoids eatng for days.

I am sure whatever you decide will be best for him.

monahere Newbie
monahere
Posted
  • Author

I very much appreciate your replies .

I am going to take DS to see allergist and start dairy trial under their guidance .

KenzMom Rookie
KenzMom
Posted

I had to take my daughter off of breastmilk and dairy at 3 months old. When she turned 1 I reintroduced milk and she tolerated it very well for 2 months-- then back to vomiting. I completely understand the desire to try dairy again (especially when I had doctors tell me she would likely outgrow all of her tummy troubles). Even without dairy in her diet, my daughter struggles... I am having her tested today for celiac disease...

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
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