Hi I'm New W/ ? Re Testing My 2 Yr Old

[Nate'sMom]

Hi - it's great to find this forum! I have some questions about testing for my 2 yr old DS. Here's some background:

He's 26 mos & we've been going thru a lot of testing w/ an allergist & a GI. He was 50%tile for weight at birth but dropped off the charts to below zero when solids were introduced at 6 mos. He also had bad reflux until he was 6 mos (but his weight gain had been ok until then). He developed respiratory symptoms around 12-15 mos which we began treating w/ allergy meds at 18 mos. At 23 mos we added asthma meds for the chronic cough. He also started having a lot of diarrhea.

There was so much going on that I didn't pay much attention about the diarrhea at first, so I can't say exactly when it started. It just seems like I've always gone thru as many diapers a day w/ him as a newborn & there have only been a handful of times when his stools were formed at all. I should also mention that my 4 yr old DS is on the autism spectrum & also has life-threatening food allergies & I work full time, so there's a lot to keep track of.

My younger DS is so much smaller than my older one. He just has a sickly look about him - very thin w/ dark circles around his eyes. He also has teeth that seem gray - my ped once said it looks like the enamel may be thin. But, he's also extremely active & his milestones/dev has been okay (which is what I worried about most b/c of my other son's autism). At around 20 mos I took him to see a nutritionist b/c of the poor weight gain. I started him on pediasure & he improved some in regard to weight.

A couple of months ago a light went off in my head & I thought - this just isn't normal. He's had this chronic cough & diarrhea for months & he looks sickly. I decided to take him to the allergist & GI specialist. I was pretty sure he had food allergies, since my older DS has so many. But, nothing showed up. He was also tested for cystic fibrosis which thank God was normal. The GI ordered a whole bunch of blood work & stool tests. Everything was ok, excpet his IgA was low (15 mg/dl) and his IgG was high (1309 mg/dl). The tissue transglutaminase antibody, IGA was normal (<3). The GI ordered that these tests be repeated. I have an appt next week for the results.

All this background is a long way of asking, what do these results mean, and what should I do next? If the blood work is still inconclusive should a biopsy be done? If the bloodwork comes back positive, should the biopsy be done? I'm hesitant to do the biopsy if the only treatment is to do the gluten-free diet anyway. Should I just do the diet & not the biopsy, regardless of the blood test results? I have so many food issues w/ my older DS who is allergic to peanuts, soy, fish & shellfish, plus his autism-pickiness, that it's already such a struggle to feed them. Are there any other blood tests that should be done? Also, I have a lot of GI troubles & am lactose intolerant. Should I be tested?

Sorry for being longwinded! Thanks for any advice you can offer!

-Fran

[Mommax4]

I'm new to all of this as well, so I can't offer much help.

Here comes the "my opinion" lol... From what I understand the biopsy is pretty intrusive, especially on such a little one, I could be wrong on this..I would try the gluten-free diet and see if there are improvements.

It sounds like you have a bunch on your plate, but you are dealing great!! You are a very good mommy to worry.

Celiacs is genetic and if you are having those problems, I would say definately go get tested.

Best Wishes to you!!!

Lisa

[hez]

Let me start by saying that I am not an expert. I have two childeren. One has had blood work which has come back negative (could change later). My second child will be tested in October (need to wait until well child check up). So, I have no experience with endoscopy and children. However, if having a firm diagnosis would give you peace of mind, I would do the procedure. I am not sure I would choose this diet unless I had to nor would I do this to my kids. But this is a personal call that you will have to make. The other upside to having a firm diagnosis would be with your other child and yourself and getting tested. I have heard that there are some children with autism that improve with a gluten-free diet. Again you would need to research that since I have no experience. Take a deep breath and listen to yourself. Trust your instincts! Good Luck, Hez

[skoki-mom]

Hi there, I'm not an expert and I'm newly diagnosed myself. My sister was diagnosed, and based on her allergies to anesthesia, she did not have a scope. She and her GI agreed her symptoms, history, and the + blood test were sufficient. As a first degree relative, I got screened, never thinking it would come back + as I have none of the symptoms of celiac disease. However, it did come back +, so I opted for the scope just to really confirm it and to get a baseline of the extent of the damage. As an adult getting the scope, it was really no big thing. I had a conscious sedation, all I remember is them spraying my throat (tasted terrible), putting a block between my teeth, and vaguely feeling the scope coming back out but no gagging or anything. I went home within the hour and experienced no discomfort, sore throat, anything. I am suspicious my almost 5 year old has it since she has complained of "my tummy hurts" and diarrhea for the last few months. Since this all started, I have held off on testing her until I got in for my scope, since I felt having an accurate family history would help her diagnosis. She is booked for her routing check up the end of next week and I will be requesting both my kids get blood testing. I have pretty much already decided that I will *not* scope them if the blood work is + given the positive family history. While I said it was no big deal, a scope for a small child would be a little more traumatic. It does involve getting an IV and just being in the hospital for the day. I really don't feel the need to put her through it under the circumstances in our family. If she continued to have symptoms on a gluten-free diet or if her symptoms became worse, I probably would do it at that point just to see what was going on. I've given it a lot of thought, and even talked to my GI about it. He also seemed to agree that if either of my kids had + antibodies the scope would really not be needed. HTH.

[Guest Lucy]

My son had the scope done at 2 years old. We were in and out of the surgery and on our way home in 4 hours. He is also diabetic. If he wasn't diabetic we would have been home earlier.

The surgery wasn't nearly as bad as I anticipated. He was very hoarse the day of. Very tired and gassy. (air in stomach for scope). But by morning the next day he as completely his normal self.

My son was ASYMPTOMATIC. NO NO NO symptoms. His diabetes dr. screened him for all auto immune diseeases and he tested high with blood for celiac, so we went in then next week and did the scope. His GI Dr. thought it looked good. He still sent the results into the lab for further evaluation. They are the ones that discovered very slight villi damage. But nothing else would damage his villi but celiac.

So I am truly glad we did the scope. It was scary (especially with diabetes, blood sugar control is hard when you can't eat before surgery). But he held his own. I would definately recomend doing it if there are any concerns. It is worth the knowledge of knowing.

If you do not want to put him thru it, you could just adapt a gluten free diet for 3 or so months and see where it takes him. You should be able to tell in temperment, and weight gain by then.

[brdbntL]

Wow Lucy- Our stories are so similiar it is kinda spooky, except my daughter was 3 when she had the endoscopy. She was diagnosed with diabetes at 22 months. And she is asymtomatic. small world.

the worst thing for my daughter with the endoscopy is that she couldn't play on the playground before we left (because of the anestesia). Sorry it is late and I can't spell.

[Merika]

Hi Fran,

The archives here have a wealth of info that you may find useful and maybe reassuring. Testing for kids under 2 (or maybe even 3) can be unreliable. Something is going on with your son, as you say. Since the tests did not give you a clear answer, i would try the diet for a month. Then see how he is. Feed him a gluten-rich meal at the end of the month if you want, and see what happens. Most likely, if he is celiac, you will see dramatic improvement in the first 2 weeks, and never want to feed him gluten again.

It is also worth testing yourself and your older child, as celiac is genetic, and symptoms can vary wildly. Many adult celiacs I know, myself included, are allergic to numerous foods - however, with a gluten-free diet and intestinal healing, some of these allergies disappear. Celiac can also delay development - both physical and mental, because of the malnutrition it causes.

Biopsies, IMO, are not worthwhile for kids, and will soon not be done routinely to test for celiac. A child may not have had celiac long enough to really show inner damage that they look for.

Hth,

Merika

[Indea88]

My 2 year old has tested positive for the DQ2 gene. I know his father has Celiac but is in denial. He had his first formed stool since birth after being on the gluten-free diet x 4 days. That was enough proof for me. All of his so called " autistic traits" have disappeared since the gluten-free diet! Its been an incredible transformation. I wont have him go through the biopsy, the blood draw was tough enough. I dont need this proof. He may not even have enough of the intestine involved yet to show a positive biopsy. He has gained weight and the dark circles under the eyes are gone as well. I am almost relieved with knowing he has the gene. At least now it somewhat verifies the need to be strictly gluten-free so he may not suffer the way his father does. No biopsy for my toddler, just my take on it