Newby With Many Questions...

[NaomiR]

I want to begin by stating that this post will most likely be extremely long, so I want to begin by thanking everyone for reading and advising me. I also want to inform you that we have had many problems with insurance and so for the first year of my sons

[tarnalberry]

An IgA deficiency is not uncommon for celiacs. I'm surprised they didn't run the tTg, and IgG's as well - they're part of a full celiac panel. Really, getting the full panel shouldn't be a problem from the doctors (though you may need to go in with some research about the best testing, and order them to request it so that they are not found negligent), but from what you describe, I can only hope you can convince them. Can you simply try him on a gluten-free diet and see how he resonds? That is fairly diagnostic in and of itself.

[AmyandSabastian]

Let me start at the beginning. My third son was full term, 7lbs 13oz, normal pregnancy and delivery. He was growing, gaining weight, and meeting all of his developmental milestones right when he should. Then at six months of age, January 2003, we traveled to NC. While there we began to introduce infant cereal (oatmeal) to him. He started having problems with diarrhea. We weren't sure what to attribute this change in bowels to as he was teething and we were using filtered (Brita filter) tap water. He was breastfeed until 1 yr of age. However, at home we would substitute with an occasional formula bottle, but we always used distilled water. The diarrhea continued for 13 days. Suddenly everything changed again. He began experiencing chronic constipation and that continued for many months. The ped. recommended many short-term fixes ranging from Milk of Magnesia to dark caro syrup.

I have to talk to you. You story sounds JUST like mine. EXCEPT my son is 6 months. We caught it early and I thank god everyday for that. We are at the stage where he stop developing, laughing, smiling, sitting up etc. About the same time as we introduce oatmeal and bitter snacks. He was also breastfed and due to a lack of milk I had to put him on formula. After a month of gas, stomach and pooping probelms we switched him to Nutriemgen (hypoallergnetic foumla) and all was well again. Until we started solids. Oatmeal!!

I am crying just reading your story and what could have happened to my son. My sugesstion is to go gluten free. My doc told me to do a 10 day wash out period and call them with the changes. And of course they were drastic. In 2 weeks time he caught up on all of his milestones and surpassed the next months. it has been 4 weeks for us. And only because of my mistakes have I had any more probelms.

I wish you luck and god bless.

[AmyandSabastian]

one more thing. I was wondering if you could email me. I would love to talk to you. I dont want to post my number on the forum so I would prefer to do it through emails. Hope to hear from you soon.

[NaomiR]

A few weeks ago I posted an extremely long post explaining my son's entire medical history. He was diagnosed failure to thrive, experienced diarrhea/chronic constipation since eating his first bite of infant cereal (oatmeal), major developmental delays...ect. His test results showed up inconclusive...due to his body not producing immunoglobulins.

Amazingly and thankfully, Amy contacted me off the board and urged me to try the diet for 2 weeks. That first weekend we made a trip to our local Whole Foods store and stocked up on waffles, Amy's frozen meals, and some pasta. We bought a supply of potatoes, rice, fruits & veggies, and some other staples from a local grocery store.

Now for the UPDATE...within four days he no longer had constipation. He is going regularly everyday! His stomach is no longer bloated/swollen. Three weeks later he is much happier and playing more. He is beginning to babble (he is 2 and not speaking). He is beginning to understand simple commands also. And, if my husband and I measured accurately, he has grown 1/2 inch.

So I must assume that he has Celiac's. I am wondering if there is an age, I think I read that children under the age of 2 test negative, when testing becomes more reliable. What is the recommended age of testing or is there not a set time?

It is a VERY hard diet to live with in regards to cross-contamination and contacting companies. I still have not dived too in depth with that area. Can someone also tell me how necessary it is for them to have their own toasters, colanders, pots/pans? Are they really that sensative?

[Boojca]

To be honest, I am not sure it's a matter of age. Well, I mean, obviously a baby that has never been introduced to gluten isn't going to test positive...but a child that is eating it should test accurately. What the issue is, is the test that was used. From what my Pediatric GI specialist told me, the usual blood tests, that can be run just about anywhere, are VERY inconclusive. Lots of false negatives and positives. The most reliable blood test right now is called a TTG test, and there are only 5 labs in the country that have the experience to run these tests accurately. I live in VT and our sons test (he is 2 1/2) was sent to the Mayo Clinic. However, for any of these tests to be accurate the person being tested must be ingesting gluten. For how long, I have no idea. It defintely sounds like Celiac, though, if your results going gluten-free are this great. My son was the same way, a complete, almost immediate turn around.

It is VERY necessary for you to have a separate toaster, and to keep it exclusive. What happens is the crumbs from the bread sticks to the "wires" in the toaster and then transfer. Some people are more sensitive than others, but until your child can tell you verbally how they feel after ingesting gluten my theory is to just do everything you can to avoid it. I bought a new toaster for $7 at Kmart that works just great. As for the colanders, I would get new ones for gluten-free simply bc those little slats or holes are tough to really get clean. And, again, until you can REALLY know how they feel when they ingest gluten and how much is too much it's better to be safe than sorry. And always remember, just bc they don't have an external reaction to, say, "one cookie" the gulten is still causing internal damage. Whether it's one cookie or one crumb. And "one crumb" quickly addes up if enough are ingested here and there.... I use the same cookware, though, for us and my son. Just be careful if yours have rivets or other things on the inside where reside could hide. Some people have also said Teflon needs to be separate as well, although I have no idea why and I haven't changed ours. I did get new wooden spoons and spatula's etc....for baking.

[AmyandSabastian]

I am jumping up and down right now. I am almost in tears. I am sooooooo glad you decided to try the diet! I cant tell you how happy I am for you and never have met you. Congrats!! Super Congrats. I am so happy he is feeling better. Stick to the diet!! Who knows what will come next. Read and learn as much as you can. I am still contacting manufactors, still emailing and calling. Still researching. I havent slipped in a long time and Sabastian is as healthy as ever. He doesn't look like a potato and is reaching normal weight levels. And at 7 months he took 3 steps yesterday!!!! So, I wish you luck. If you need any help please post!!