Did The Blood/stool/urine Tests Today

[MommaNerd]

So today, I took my son Logan, who is 18 months old to a GI dr. I described to him his symptoms and told him that I personally believe that Logan has Celiac Disease. He looked over Logan, and ordered a full panel of tests (about 15 tests in total). I asked him what he thought and he said that it quite possibly could be celiac disease, but he wasn't going to give a diagnosis until he had all of the blood work. He said that it was quite possible that all of the tests would come back normal because Logan has been on a gluten free diet for about 2 weeks. (Although, Grandma decided to give Logan baby food that had some wheat in it, which caused a rather horrible diaper rash over the weekend). He said that for the tests to turn positive, Logan would have to consume at least 4 pieces of bread for at least 30 days. I asked him "Well if the gluten is making him sick, why would I give it to him? What benefit is there to having a formal diagnosis for celiac disease?" He stated that he understood my concerns. I raced over to the lab to have all of the lab tests done for Logan. He had 8 (yes, 8) viles of blood taken. They also needed a stool sample, and Logan was very considerate to give them a sample while he was there.

His pediatrician diagnosed Logan with "Failure to Thrive" last week. Poor kid is 18 months old and weighs about 18 lbs, with no significant weight gain or growth for about 5 months. Overall, this was a good thing because that helps confirm my thoughts that he has celiac disease. For some reason, his pedi thinks that I am nuts and doesn't think he has celiac. Why is that? I have no clue. I'm just getting upset with the fact that everytime we go to see his pedi, its another visit to a specialist for more ultrasounds, blood work, this that and the next thing. I just wish I could go to the dr and not have something wrong with my baby.

We should find out the results by the end of the week. Poor kid just needs some relief.

I just could really use some help/support on this. Anyone have any advice for me?

Thanks everyone!!

[mushroom]

Hello, and welcome.

I think you definitely did the right thing in taking Logan to a GI and getting him tested. We have seen on the board parents complaining that their pediatricians do not take their children's complaints seriously enough (although some GI's are like this too - it sounds like you got a good one ) It would be interesting to hear the pediatrician's theories on causes of failure to thrive. It's no wonder so many of us are self-diagnosed, because if we didn't do it, who would?? By the time we decide to go gluten free it is too late for us to test positive, but we are feeling so much better we would not eat gluten again. I am assuming that Logan showed considerable improvement on the diet, when you mention the poopy diaper after Granny's gluten intervention. Nevertheless, this one little episode would probably not be enough to sufficiently reactivate the antibodies. Now some have a high enough level of antibodies that two weeks off the diet will not make much difference in antibody levels, but for most they drop off quite quickly once gluten is withdrawn.

With any luck, by this time next week you will have a diagnosis. But even if the diagnosis is not celiac, it sounds like he is definitely gluten intolerant and should avoid it. The celiac diagnosis makes a neat little package, but gluten intolerance does not begin and end with celiac. Non-celiac gluten intolerance can give the same symptoms and have many of the same ramifications.

Since this is a genetically based problem, he would have inherited his gluten intolerance from either you or his father (or possibly both). Do either of you have any digestive problems? If Logan is positive, you should both be tested as well.

Good luck on getting a clearcut diagnosis. If you have any specific questions, don't hesitate to holler.

Here are some {{{{hugs}}}}} for support while you are waiting.

[Jestgar]

I asked him "Well if the gluten is making him sick, why would I give it to him? What benefit is there to having a formal diagnosis for celiac disease?"

You sound like the best mom ever! If you feel they've run all the tests they can possibly run, then you have nothing to lose by controlling his diet and seeing if what he eats is making him ill.

Do the gluten-free, dairy-free thing and see if it helps.

[MommaNerd]

Mushroom, what is the difference between being gluten intolerant and having celiac disease?? I thought they were the same thing!! Man...I need to be doing some more research!!

I did describe the gluten incident with Granny to the dr, and he seemed interested in the incident. He examined Logan's diaper area to see what type of sores he had, although, since removing the gluten from his system, the sores have cleared up. I also read that most blood/urine/stool tests done on children under three come back negative, even though they might have an intolerance to gluten and/or celiac disease. I won't be surprised when it comes back negative. I think my worst fear at this point in time is Logan having Crohnes diease. I researched it on the internet, and thankfully, the only symptom that Logan exhibits at this time is the diarrhea and the vomiting (which are also symptoms of Celiac disease!).

Also, a lot of people have commented on removing diary from his diet also. Do gluten intolerance/celiac disease and lactose intolerance go hand in hand? From what I read (again, from the internet), most adults think that they have a form of lactose intolerance, but in actuality have celiac disease/gluten intolerance. Unless its a necessity, I hesitate in removing things like diary from his diet, because he needs the extra milk fat.

I forgot to mention that since I put Logan on a gluten free diet, he has gained almost 2 lbs in 1 week! He hasn't gained that much weight in such a short period of time EVER! I had the GI re-weigh him, just to make sure he was correct. I was very excited to see that.

Even if the blood tests come back negative (which I am pretty sure they will), I plan to keep him on a gluten free diet. I believe in being your own medical dr. When you go to the dr, and tell them your stomach hurts, they are going to suggest thousands of different things. If you go to them and tell them "I believe I have Celiac Disease" at least it narrows down the field.

When you talked about either my husband or myself having celiac disease, I totally believe my husband has it. He exhibits all of the symptoms, but when I approach him about it, he thinks I'm nuts. Whatever.... I always slip in gluten free bread and pasta into his diet. He doesn't know the difference.

Thanks for all of your help!! I really appreciate all of the advice!

[Cara in Boston]

The blood tests are all likely to be negative, but don't let that stop you from trying out the gluten-free diet. He is so young. If you find you need an actual diagnosis later (school?) you can try a gluten challenge then, when he can communicate his feelings better.

Perhaps one of the tests was a genetic one? While that won't give you an answer, it may motivate your husband to get a blood test.

My son was diagnosed with celiac (by blood and biopsy) and my husband STILL hasn't been tested. Maybe he already knows the answer and just doesn't want it confirmed.

[MommaNerd]

The lab sent us home with a urine collection bag and a couple of containers for some stool. They also put the lab slip in the same bag, so I took a photocopy of it and plan on looking up what tests the dr ordered, so I know exactly what I should be looking for. Man, I feel like I am going to medical school!