Daughter With Cd?

[LynnR]

We adopted our daughter from China when she was only 18-months old. At that time, she only weighed 16-pounds. She was very underweight, had no color, & could not walk or crawl.

Everytime we fed her, she would have acid reflex. But we were told by doctors that she would outgrow it. She always have been smaller than kids her age but we thought because she came from China.

I recently had her tested for growth. She is now 8 1/2 years ago & her bone growth is 5.10 years. Her doctor said that I shouldn't be too concerned because she is growing on a regular basis. But at the same time, she wants me to come in yearly to keep an eye on her situation.

She also has other symptoms. Her tummy is swollen, she does not listen to people, at times has problems concentrating, tired during the day & very tired by the end of the day, restless sleeper, can eat until the cows come home & still not satisfied, crying spells, talks in her sleep, sleep walks at times, etc. She did have a blood test a couple years ago for Anemia & celiac disease. A finger prick came out postive but the actual blood test for Anemia was negative & the blood test for celiac disease was elevated.

At this point, she will not get any more blood tests. She is very fearful of needles & holding her down is too difficult for me now. My husband passes out just by looking at a needle so he can't help me out with this.

Any idea?

Thanks!

[FreyaUSA]

My husband is just as good with needles. Poor men!

Anyway, from what you said, this caught my attention:

& the blood test for celiac disease was elevated.

Did you mean that your daughter tested positive? If she did, she should be on a gluten-free diet. Her symptoms sound very typical for children with celiac disease, though being of Asian descent does make her case a little unusual. If her blood work in the past did show she was intolerant, at least, I wouldn't bother doing any more testing. With gluten sensitivity, if you have it, you have it forever. Why torture her with more bloodwork, biopsies, etc., when the end result, of another maybe more strong positive, will be the same as the end result of a weak positive? Now, even if the former tests weren't positive, I can't see the harm in putting her on a gluten-free diet and seeing if it helps her. When my children went gluten-free (with only mildly positive IgG,) it made a remarkable change on them! Some people claim that it can take 2 months to notice any real difference, but I noticed it, especially temperamentally, on my kids within two weeks.

Thinking about this though, has she been checked for milk intolerance? Allergies? A friend of mine who is also of Asian descent found her daughter was having many celiac disease-like symptoms (we have daughters who are friends) and it turns out milk problems are very common for them. She took her daughter off milk (basically put her on a casein free diet, not just milk) and it has helped her tremendously. (Her pediatrician told her NOT to do this, btw.)

There, that's my opinion. Good luck!

[LynnR]

I did try putting her on a milk-free diet. It has helped out somewhat but not entirely.

I also forgot to mention they she also has Eczema. Upon coming from China, she was covered with it especially on her face, arms, & legs. Now it is much better but she still has it throughout the year.

[dmchr4]

Lynn, I can sure feel for you! I have an 8-1/2 yo daughter w/numerous health issues too. It's so hard because you feel like there's not much you can do for her when she doesn't feel good! My daughter has lactose and Gluten intolerances. After being gluten-free for about 10 days now, I've seen a marked improvement in her. I cannot believe how much energy she has had all of a sudden. Just for fun, she ran around inside the house 100 times yesterday (kitchen to entry to front room to dining room back to kitchen - the loop.) She's often too fatigued to even run around once!

Probably the easiest thing for you to do is as FreyaUSA suggests - put her on the gluten-free diet and see if it helps. But it may have to be a month or two to see any real results.

If you could get her to be blood tested again, I think that might be helpful - especially for additional allergies. BUT, I'd make sure you went to someone who knows what they are doing - someone who does it all day long like in a hospital lab. My daughter was very fearful and upset too. Unfortunately, our doctor doesn't draw blood on children very often. He tried three time and couldn't do it, her veins kept collapsing. Finally I took her over to the hospital and had it done there - it was no problem at all! She screamed and yelled the whole way over and was going to be stubborn about it. But I was not going to let her out of it, I felt it was too important. I told her she could make it hard or she could make it easy, but either way she was going to do it. Surprisingly enough, she decided to not complain and she went in and did just fine.

An allergist doing scratch tests may or may not help - they aren't very accurate and they didn't come up with anything for my daughter. An allergy elimination diet (where you take out all possible allergens then gradually re-introduce them) might help you find what she's allergic to, but it is pretty difficult to follow and it's sometimes hard to recognize symptoms and what foods caused the symptoms. It's especially tricky if your daughter is allergic to multiple items like mine. Many celiacs find that their other allergies go away, though, after being on a gluten-free diet and avoiding the other allergens then reintroducing them after a few months.

If you do want further testing, the other options are that you can do a stool test through enterolab or a pinprick test through York labs. Both seem to be reputable companies on the internet, but I have no idea if insurance would pay for them so you might end up footing the bill.

Freyausa, a few questions for you on this quote:

With gluten sensitivity, if you have it, you have it forever.

How is gluten sensitivity different from Celiac's, then? Is it that celiac disease is an autoimmune disease that can lead to big health problems, and gluten sensitivity cannot? celiac disease is hereditary, is gluten sensitivity? If gluten sensitivity is not an autoimmune disease and not hereditary, I think it would be important to have a pretty accurate diagnosis for Celiacs so we could know if the rest of the non-symptomatic members of the family should be tested. Also, I know Celiacs cannot cheat because it can damage their intestines and lead to the worse autoimmune disease, but can those who are gluten sensitive rather than Celiac occasionally cheat knowing that they may have a reaction? (When we only knew my daughter was lactose intolerant, occasionally she'd eat an ice cream even though she knew she'd get bloated and have a stomachache. )

Can gluten sensitive people turn into Celiacs or are do you always have celiacs from the day you are born?

How do you know that if you are gluten sensitive you have it forever? Can you not outgrow it like other food allergies? I know if you have Celiacs, you have that forever, how is gluten sensitivity different?

I hope I don't come across as challenging your statement, I'm just curious about it. I did ask something similar to this board under another topic, but I don't think I asked it quite right to get the answer I wanted.

My daughter's IgG was 161 - super high. (Her IgA was 21, which was a weak positive.) Does that mean she's always going to be gluten sensitive? If you have a high positive on the antigliadin IgG, could you just be sensitive to one of the grains (like wheat) instead of all of them?

In testing for Celiacs, the standard procedure is the antigliadin blood test, a bioipsy, and then following the diet. If you test positive on the blood test, the biopsy shows damage and you feel better on the diet, then aren't you considered a celiac? But can't you have a biopsy that doesn't show damage and still have celiacs (because you haven't progressed that far in the disease yet)? If your biopsy is negative, but you have a positive blood test and you feel better on the diet, do you have celiacs or could you just be gluten sensitve? And why do you need the diet confirmation if the blood tests show you are gluten sensitive? Is there a high rate of false negatives or something?

Sorry about all the questions! Maybe I'm just asking the same thing over and over, but I guess I'm just wondering what the difference is between celiacs and gluten sensitivity.

Thanks!