Celiac Again?

[ashlee's mom]

Hi, my daughter was diagnosed with Celiac's disease in March and has been gluten free ever since, it is so good to see her healthy again! She is our only biological child. Our son, who we adopted, is now 21 months old, and I don't know if I am just paranoid, or if he could be showing signs of celiac disease! He doesn't seem to have regular stools, he will either have diarrhea or be constipated, he is a VERY picky eater, yet seems to be hungry all the time and wants to live off milk and milk products. He gets very grouchy (which could very well be the age too!) He has always been very long and lean, but he still has a big tummy, which I think is the thing that makes me the most nervous! I just think what are the chances that both our children have this and they are not even biologically related! Don't babies normally have a big belly for awhile? His is firm though, which just reminds me of my dd! Also, he is African American and I thought this disease was mainly in people of Western European descent. Does this sound possible, or do you think I am just reading too much into it?

[hthorvald]

He could be lactose intolerant or have a dairy allergy. You very much describe the symptoms my son had at that age. He is now 23 and just had his endoscopy for celiac disease. After I was diagnosed earlier this spring, I immediately thought my son had it because our symptoms were so much a like.

But, his blood work and biopsy just came back negative. And, he was diagnosed with the dairy allergy when he was very young. So, that being said, I'd elminate dairy and go from there.

I'm not sure about the African American ratio to this disease, but I'm British and my husband is Danish. We are both gluten-free and my doc said that Northern Europeans are more likely to have this disease. That being said, a friend of mine is Philipino and she has it. Go figure.

Good luck and don't just assume it's celiac disease.

Take care and keep us posted.

H.

[ashlee's mom]

Thanks Helen, I don't want to rush to a celiac disease idea, but after the last 6 months with my dd, I guess it is just on my mind!

Food allergy maybe makes sense though, he did have an allergy to the soy formula he was on when we first brought him home. He was having blood in the stool, so it was very obvious then. I would shudder to think about how he would be without milk for even a day though! He seriously wants it most of the day but I limit him to 3 cups (about 8 oz each) per his old pediatrition (we recently moved) He will go to the fridge and just cry or try and take me there all throughout the day. I guess that is one of the reasons I started thinking about celiac disease, my daughter wanted to live off milk before she was diagnosed too! I would think if milk was bothering him it wouldn't be the thing he craved so much, but maybe not!

My trust in doctors is kind of shot right now, so I am trying to figure things out the best I can without risking a condescending doctor right now!

[hthorvald]

I know how overwhelming this can be. First off, you have two young children. Stressfull all by itself. Throw in a child with celiac disease and another with undiagnosed symptoms PLUS a move, well, I understand your situation.

Since you are in a new area, maybe you can use it to "interview" several pediatricians before settling on one you like. I agree about the medical community. They really hate it when their patients know a little more about something than they do. But persevere for your son's sake.

One bit of advice - getting your son's health issue identified is like eating a huge elephant. You know how to eat an elephant, don't you? One bite at a time. That's how you have to tackle this, otherwise, you'll be really overwhelmed and stressed. Kids pick up on that, too.

And, take some time for yourself. Draw a hot bath or pick a good book to read. Not sure where you live, but here in Northern California, the weather is just great for sitting in the back yard and enjoying the sunshine, with or without reading materials.

Sorry you have to go through this. I truly understand your situation. Hang in there keep us posted.

H.

[plantime]

His craving for the dairy would lead me to think it is an allergy. While it does sound strange, many times an allergic person will crave the very food that makes them sick. It will be difficult for you and him, but I think you should try taking him off dairy for 2 to 3 weeks, and see if there is any improvement. I wish you the best!

[ashlee's mom]

Thanks everyone! If it really is an allergy, isn't that fairly easy to test for? Or if he is just lactose intollorant is it more just something you have to experiment with? I have learned more about allergies and such here, but there is still a lot I don't know!

Thanks everyone,

Michelle

[mat4mel]

Craving milk like that (and drinking such a large amount) sounds to me like an allergy. Like someone else said, some people actually crave the thing they are allergic to. I would definetely cut out the cow milk for a couple of weeks and see if that makes a difference-- in fact, cut out all dairy and see.

Mel

[ashlee's mom]

OK, does anyone have any reccomendations on sites regarding food allergies? I tried looking around this morning, but from what I found, it is rare to develop a milk allergy after 1 year old, and rare to become lactose intollerant before 2 or 3 and he fits right in between! To make a long story short, I am starting to think he might be craving the milk for it's protein. After he wouldn't eat anything today and was throwing a major fit for more milk I made him scrambled eggs. He ate 4! Plus he didn't seem to want milk after that!

It may be a step, but it still doesn't explain the bloated tummy! An allergy could though, so I think that is probably where I need to look.

Thanks, Michelle

[mpeel]

  plantime said:

His craving for the dairy would lead me to think it is an allergy. While it does sound strange, many times an allergic person will crave the very food that makes them sick. It will be difficult for you and him, but I think you should try taking him off dairy for 2 to 3 weeks, and see if there is any improvement. I wish you the best!

I agree here but I would do at least 6 weeks. Some say 12 to 20 weeks is what it takes to get dairy completely out of your system. However, from personal experience, you usually see signs of improvement quickly enough to know by 4 or 6 weeks if it is the culprit. Why was he on soy formula? Did he not tolerate dairy formula?

Because of the AA decent, I would not immediately suspect celiac but you never know where they might have been some European blood mixed in.

My allergy was probably always there but I was not diagnosed until 5 or 6 years old when it got severe. Also, allergies develop from over exposure to a substance. This can happen at any age. Also, they are finding children often do not "out grow" an allergy but the symptoms may change. Also, both my girls are dairy "intolerant" but both tested negative on allergy tests. But clearly neither can have it. I have heard kids with whooping cough sound better than Beth does when she gets milk.

Michelle

[ashlee's mom]

I really don't know why they put him on soy formula, judging by the hospital records (he was almost a month old when we got him) it just mentions he spit up a little. He always seemed fine on the milk based formula, although I do remember trying a different brand and he being gassy and irritable on it. I was thinking about the over-exposure thing with allergies and wondering if that could be a problem. He did start gaining weight better once we took him off the soy formula, so I think it was affecting him even befor he started getting blood in the stool. Do you think I would notice anything relatively soon with dairy? I would hate to keep him off of it for too long if it isn't the problem.

I thought Celiac might be off, but like you said, you never know what genes could be floating around, especially since I really know nothing about the birthfather. I did notice that his birthmother's grandmother died of stomach cancer, but that can come from things other then celiac's as well!

Thanks everyone,

Michelle