Worried About Nicole

[Nikki2003]

Good afternoon everyone. I am very worried right now. Nicole has been on the diet now since July 22nd. The past few days she hasn't been doing so bad she is actually eating okay. But evn though she is eating and getting pediasure she is still dropping weight fast. When she went for a follow up with the GI dr she was at 28.3 lbs that was august 3rd 2006. This am at home she is only 26.9 lbs. And our scales are pretty close. What could be causing this? I know it takes time to hael but not losing weight even though she is eating better. I am sad to admit I have been denying it for a few weeks but she also has signs of Lupus. She gets red swollen joints, She has the malar rash that gets worse in the light(but not neccesarily the sun),she has some photosensativety,Gets sick alot,rashes,fatigued often,mouth ulcers. And I can't think of any more right now. But she has at least 4 of the criteria for lupus. If it keeps up I will bring her to the dr,But her ped is the one who said she was fine,even though she has celiac disease he blamed the swollen tummy on gas and did no tests. I don't know what to do. Any advice would be great.

Thanks a bunch

Celina &Nicole

p.s. I had my older daughter tested the other day for celiac we won't know anything until next week. I hope she doesn't have it. It is tough enough with one. And she is in school,so that would be even tougher.

[Esther Sparhawk]

When Annie was really little, and we didn't know she had celiac disease, I fed her Pediasure all the time. That stuff caused her to throw up even more. It may have milk in it, I can't remember. Like many celiacs, Annie was lactose intolerant at the beginning. Is Nicole lactose intolerant? You might want to check what's in Pediasure and make sure there isn't something in it causing problems. That was the case with my daughter, anyway.

Vitamins can do a world of good, too. Don't give her Flintstone, because they are not gluten-free. We use Yummi Bears vitamins.

Even after being on the diet for a whole year now, Annie has only gained about two pounds. It takes time. Hang in there.

Have you bought Danna Korn's book, Kids With Celiac Disease? It was the best thing I did for my daughter's diet. Best of luck to you.

Mechelle

[Nikki2003]

They checked for a milk allergy and she was neg. Also I called the pediasure company a while ago and it is safe for celiacs. But carnation instant breakfast is not. I do have that book. It is good. The reason I am worried is because she was starting to gain,But now she is losing.

The GI wants me to make an appt with the ped.

Thanks

[Esther Sparhawk]

They checked for a milk allergy and she was neg. Also I called the pediasure company a while ago and it is safe for celiacs. But carnation instant breakfast is not. I do have that book. It is good. The reason I am worried is because she was starting to gain,But now she is losing.

The GI wants me to make an appt with the ped.

Thanks

Be sure to bring up your suspicions about Lupus, when you visit the pediatrician. Best wishes and God bless.

[Guest nini]

They checked for a milk allergy and she was neg. Also I called the pediasure company a while ago and it is safe for celiacs. But carnation instant breakfast is not. I do have that book. It is good. The reason I am worried is because she was starting to gain,But now she is losing.

The GI wants me to make an appt with the ped.

Thanks

just because she was neg. for a milk allergy it doesn't mean that she isn't lactose intolerant. MANY Celiacs are latose intolerant until the damage begins to heal because they just can't digest it. The area that digests lactose is on the tips of the villi and if the villi are completely flattened there is no area to absorb or digest lactose. I would eliminate all lactose/dairy from her diet for a while until she begins to really get better. Lupus may be a very real possibility BUT Lupus also responds very well to the gluten-free diet as long as you are 100% strict with it. You need to be absolutely 100% sure that everything she comes into contact with not just food, is 100% gluten free, no cross contamination or minute amounts. If she started to gain and then is losing again, I would suspect that gluten is somehow making it into her system.

[key]

She may possibly have lupus, but don't let your mind run crazy. She is probably just recovering from having celiac and needs adequate time to heal. I think you should probably take her off of dairy. It will cause her to be bloated and not want to eat well. Most celiacs are lactose intolerant for like 6 months. Lactose intolerance can cause nausea and diarhea.

I think it is hard to weigh her on two different scales. My son fluctuates sometimes too. He is two years old and has celiac disease.

I hope she is feeling better. Try not to worry. It isn't good for MOM! I know, I have three boys and I have to becareful not to worry to much.

MOnica

[Nikki2003]

I have taken her off milk. She has been on soy and the almond milk which both are lactose free ,They both have very close the same calories etc. I started this a few weeks ago. I think it is the pediasure that is bothering her but she did fine with it yesterday afternoon. So I am confused,But hopefully get better with time.Thank you for all your advice.

celina

[chrissy]

how old is nicole?

[Nikki2003]

She is 33 months,I know it is rare for kids under 5 to get it. But it does happen.

Celina

Alot of this started after a high fever for 3 days of 105.

[taweavmo3]

Just some random thoughts here...but I have some ideas for ya.

You might try her off of the soy milk, I didn't see major changes in my dd until I did this. She used to drink a ton of soy milk, but it seemed to effect her just like gluten. Also, regarding the high fever.......could she have possibly been glutened? My dd sometimes run a fever w/a glutening, but not always. But, with such a high fever, Roseola also comes to mind. Emmie had this last year, she ran high temp w/no other symptoms, then a small rash popped up days later. That could also cause her to not eat well, lose weight briefly, etc.

This probably doesn't help ya much, but I hope she improves soon. It wouldn't hurt to bring up Lupus to your ped if it's a concern of yours. Hopefully, she just needs more time on the diet to heal properly.

[Nikki2003]

We may be visiting the Ped's office tomorrow anyway because my older daughter has been running a fever of 104. all day I give her motrin and it goes down until it wears off. Usually with her indicator of strep throat. But if we go I will bring up nicole with him.

Thanks

[Rikki Tikki]

She is 33 months,I know it is rare for kids under 5 to get it. But it does happen.

Celina

Alot of this started after a high fever for 3 days of 105.

Hi Celina:

She is almost 3? How tall is she and how much does she weigh? Is she built like you? I think as parents we just worry and worry. I would take her to the baby doctor and express your cocnerns. It is fortunate that she got diagnosed at an early age, I am not sure it is so unusual to have it before age 5 but other people might have a better answer for you.

Just remember it takes time for the intestines to heal, make sure she has plenty of fluids and let her eat as much gluten free food as she can tolerate.

Just curious, do you have celiac? Have you gotten the results of your other daughter's test for celiac? I don't think it's harder to have 2 kids with celiac, it almost makes preparing food easier because they are both then on the gluten-free foods and less worry for you about cross contamination. Keep us posted

[Nikki2003]

She is 37" tall and weight 27 lbs exact. A few weeks ago she was 28.3 at the dr's. But we are waiting for my older daughter's results,We won't know until sometime this week. I am always offering her the gluten free food,It just depends if she wants it or not. But if my older daughter has it it will be harder in some senses because she is already in school and it will be harder to monitor what she eats. Where nicole is not yet so we still have time to teach her what she can and cannot eat and give the school plenty of notice and time. It would be easier at home I know. My older daughter still has the fever so we may be going to the dr anyway tomorrow. I have been tested and do not have it. My husband has not been tested. But my mother In law said she may have it but has not been tested. So I don't know how she got it,really.

I will update tomorrow,If we do go to the dr I will express my concerns about lupus in nicole also.

Thank You

Celina

[chrissy]

celina---if it's any comfort to you, my youngest is almost the same age and weight as your daughter. (and we are very pleased with her size since she was failure to thrive for 2 years) she does not have celiac disease. celiac can appear at any time after someone starts to eat gluten.

it really is not harder to have more than one child with celiac------in fact, i think it is probably easier not to be the only one with celiac. even though only 3 of my children have celiac, we cook gluten free for the entire family,(10 of us at home), it is just easier. i do buy crackers, cold cereal and bread that is not gluten free for the rest of the family.

my girls have only been gluten free since jan. 1 of this year----so we started the gluten free diet mid-school year and my girls have adjusted to the diet very well. my 11 year old has followed the diet so well that she is the only one of the 3 girls that had her TTg levels back to normal after 6 months.

definitely talk to your ped about your concerns, but it might be a good idea to check into other food intolerances also.

i had my youngest on pediasure for quite a while trying to put weight on her (to avoid a g-tube) she gained weight, but she also developed chronic diahreah (i can never spell that right!!) it took me awhile, but i finally figured out the pediasure was causing the gi problems.

[Nikki2003]

Nicole has an appt with a pediatric Rheumatologist on the 28th,Because over the summer her knee and foot swelled up about 2X the norm size and was very red and warm. Without doing any injury to herself.

Celina

I think it's diarrhea. I will ask about other intolerances also.Thank you

[TCA]

If it's any comfort to you, I'm one of those that has terrible joint pains with gluten. Had them all of my life. Went to rhuematologists and was tested for everything, but all was normal. I went gluten-free while nursing my celiac daughter and the joint pains went away. I would sometimes run a fever and my joints would swell with the pain, but not always. Since being gluten-free for almost a year the pains are gone unless I get gluten accidentally. I hope Nicole is fine and will keep you in my prayers.