Where Do I Begin?

[eah4me]

I am looking for some advice for my 9-year-old daughter. We've already been through quite a bit with her but are still grasping at straws to find answers for her symptoms. I will try to make her story short! ha, ha

My dd was a VERY colicky baby and at 6 months of age had a violent GI reaction to rice cereal. ER said it was a virus but I knew it wasn't. Tried rice cereal again at 8 months of age with the exact same reaction. ER called it a virus again but now I was certain she had a food reaction. Never fed rice cereal again!!! Starting at about 1 1/2 years of age she started complaining of frequent tummy aches. Seemed to get diarrhea more than her sisters, but overall not an unhealthy child, just lots of complaints of her tummy hurting. Doctor always said she just had a sensitive stomach and that we shouldn't worry. By age 3 she started with frequent strep throat, still lots of tummy aches and weird behavioral things (very moody, volatile personality...very up or down). At age 5 she got really nasty croup and then ended up with a cough that went on for months so she was placed on an inhaler presumably for allergic asthma. Finally at age 7 a friend of mine pointed out that she may have food allergies or celiac disease. I pursued this with our pediatrician who ordered a blood test for celiac disease along with a CBC and BMP which all came back normal. At that point we did an elimination diet at his suggestion and took her off of all dairy products. Her symptoms finally improved for the first time!!! chronic cough went away, tummy better, appetite improved, behavioral problems went away completely. Aside from periodic relapses of tummy aches she did great for about a year. Then she started having more and more frequent tummy aches until now they are almost as frequent as they were before we took her off dairy. Oh, forgot that 3 months ago she had her tonsils removed because of chronic strep throat. Whew. My poor dd. She has been through a lot and now I am so frustrated because I feel like we took 10 steps backwards because she is sick again. I'm wondering if she could actually have celiac disease on top of the dairy allergy even though her blood test was negative. I am hearing the blood test is not that accurate so we should still consider gluten as a problem for her potentially. My question is...where do we go from here? Take gluten out of her diet and see if she gets better? Pursue the genetic blood test? I don't want to submit her to endoscopy and biopsy. Hoping someone here will have some insight for me. I'm going nuts! Thanks

[Takala]

Have her retested for celiac by a blood test, and also ask for guidance on getting her tested for other allergies. If none of this pans out, you can try an elimination diet.

[Roda]

WARNING...THIS IS LONG

I would get her retested(blood work) while she is still eating gluten. As for a scope/biopsy that is a very personal decision. You can test negative and then test positive down the road. That is what happened to my youngest. Your story with your daughter sounds similar to my youngest son who is now 6 1/2. He broke out in a rash on his head when he ate oatmeal or rice baby cereal. I ended up feeding him barley as he "seemed" to tolerate it or I should say didn't break out on his head. He was breast fed and I had to eliminate dairy, oats, rice and tree nuts because he would get colic or a rash. He had reflux really bad up until he was 9 months old and it caused his reactive airway problems. He was on nebulizer treatments from age 14 month to 3 years old. He had to many infections(step/rhinosinusitis) that required antibiotics. He had to have his adnoids removed at 19 months due to the rhinosinusitis. As a baby he developed thrush, yeast infections in around his boy parts and eventually he had yeast overgrowth in his bowel from the antibiotic use. At 2 1/2 he developed what we were told was another strep tonsillitis infection, but despite two different antibiotics he never improved. I insisted on a throat culture and he had MRSA. It took 24 days on clindimycin to clear up the infection. We deferred a tonsillectomy and he didn't have any problems out of them until last fall which is when he was diagnosed celiac. He always has had temper tantrums which we thought were age related, until in June 2010 when he was 5 1/2 when they escalated. It didn't seem normal. He also started becoming fixated on shoes(didn't matter what you did they were ugly, too tight, too loose etc) and had this obcession with them that lead to daily temper tantrums for almost 5 months. He also started complaing of belly aches randomly and I noticed two times that he had fat in his stool and he was complaining of reflux (he called it puke burps). I had him retested in Nov. 2010 and he was positive. I didn't do the scope on him because of having the positive test and my diagnosis. Slowly I saw improvements: no more belly ache, no fat in stool, temper tantrums less frequent and the shoe obcession was gone! My hubby later regretted not getting the scope on him so we chose to do a gluten challenge after 4 1/2 months. All his symptoms came back, even the shoe issue. So after three days my hubby called it off and definately is a believer when there was a little doubt before. In hindsite he probably had a problem with gluten since he was a baby. I wasn't diagnosed then, but my restricted diet while breast feeding led me eventually to my diagnosis.

Now my oldest is 10 1/2 and has his fair share of issues as well. He was a colicy baby also, but he had issues with constipation since birth to 3 1/2. He was on so many thing for it and had to have a barium enema. He also had anger issues when he was small and had temper tantrums as well. He is small for his age and suffers from bloating and belly pains. He has IgE allergies to all kinds of things and has been doing shots since he was 5 and was diagnosed with asthma (well controlled does not require meds). He also had chronic rhinosinusitis and strep and had his adnoids/tonsils removed. He has been negative three times on blood work, but I am now more convinced he needs to be gluten free too as does his allergist. We have a GI consult today. I am going to push for a scope/biopsy even with his blood work being negative. Hubby wanted to exhaust all testing before I put him gluten free. So that is where we are at. Sorry to be so long. I thought I would share our experience to help you in your journey. I don't regret not doing the scope/biopsy for my youngest since at least he had a positive blood test, but the older one we decided to pursue it.

[Sam'sMom]

Hi - This is my first post. After my 8 year old son spent a good part of the summer complaining of belly aches and tiredness and just not being himself, we took him to the Dr. where they ordered blood work for food sensitivities, Celiac, and some other things. His results were very high for Celiac and we immediately started him on a gluten free diet. He has been much better, but occasionally still gets the tummy aches when we discover that he had something with wheat in it.

I haven't been back to my Dr's yet to pick his brain about all of this, but I'm finding I have so many questions and just wanted to ask some things - mainly what should I expect? Is eating a gluten free diet the only treatment and does this prevent all flair ups? Do you all find your kids stay healthy as long as they eat the right foods? Is there any continual damage to the small intestine, or any other part of the body? Are there recommended supplements? I feel so green at this.

Sam has also had a history of cavities. His brother, raised in the same house with the same food, has never had one. I read where Celiac can affect the enamel on the teeth - have your Celiac children had more cavities? How about broken bones? Within days of his diagnosis, he broke his arm - could very well be coincidence, but I was reading about osteoporosis and Celiac and it got my attention.

In general he is not an unhealthy child and does not have a long history of anything chronic, so I am left wondering did something just trigger this or has he been living with it for many years?

Thanks for any thoughts you have. I'm feeling a bit overwhelmed right now.

[Roda]

Both my kids have had alot of cavities in their baby teeth despite good oral hygeine. My youngest son just cut his bottom 6 year molars and the one came in with a cavity in it. He had it filled on Tuesday. The dentist had a really hard time because of the soft/discolored enamel. We figure he is in for a long road with his permanant teeth. Even with all the symptoms he had as a baby he was asymtomatic when I was diagnosed. He even at that time had negative blood work so I thought I was doing everything right until his symptoms started last June. I can't or refuse to worry about what I could have done different. We do the best we can at the time. The damage from the untreated celac to his teeth is already done. At least now we know and can focus on being as healthy as can be forward.

Yes gluten free is the only treatment for celiac. By not following the diet it keeps the immune response going. Accidents are going to happen, boy do I know, even with me being "seasoned". It was a lot more to deal with with a child. There were things he wanted to eat that I either couldn't or didn't so I found myself checking things even more. He was getting cc'd because he had a bad habbit of biting his fingernails. He sucessfully broke that habbit and we celebrated by taking him out to dinner at a place that serves gluten free. Then we had an accident at summer ESP and he and I both got gluten contaminated(and the flu on top) while on vacation. The best you can do is stay as gluten free as possible and try to keep cross contamination from occuring. If doing this you should see the antibodies go down.

[eah4me]

Thanks for the replies! So we went back to the pediatrician today and they ordered a celiac panel, sed rate, CBC, CMP, urine culture and KUB (abdominal radiographs). Obviously we don't have any results yet, but her x-ray was pretty odd because her stomach was HUGE and full of gas. The tech couldnt believe she wasn't in more pain. Hopefully we get some answers tomorrow when the doctor calls with the radiologist report.