What Should I Do?

[JessicaL]

Hi, after reading all of the informed replies that you all gave to the mom of four girls, I thought you certainly could help us too. Sorry it may be long.

My son is going to be two this month. He weighed 7lbs 12 oz at birth and seemed very healthy. When we brought him home he cried and would not ever let us put him dowm. He didn't sleep through the night until 12 mos old. He had thursh for 3 mos. And I know almost immediatly that he had some type of allergy to food. I kept telling the doctor that he spit up sooo much, but he said all babies do and so I believed him. Anyway, fast forward till June of 2005 when we decided to take him to an alternive doctor to do allergy strenght testing and discovered that he was allergic to wheat, soy, corn, milk, yeast, and coco. She also thought there could be more.

Based on those specific allergies she reccommed that we have him tested for celiac (which I had not ever even heard of). So we did and his results were: gliaden was high-normal range and he had no detectable endomisum(sp?) so they concluded that the test was negative. But the Ped. still sent us to a Ped. GI. We were so excited that after almost two long years of trying to figure out why our son wasn't healty (and family thinking I am crazy) that someone would actually help us.

No luck, the GI said that the blood work was negative and he was sure he did not have celiac disease, He told me not to put him on a gluten-free diet because that would make his life hard from no reason. And it would keep later test results from being acurate. He concluded that he just had food allergies, he isn't going to test for because it's too hard at his age so I should just put him on the allergy challange diet and see what else he's allergic to. I was crushed. And shocked at his indeference to our plight.

But....after reading about celiac disease, I realized that I had it. I have always had trouble concentrating, stress fractures (Dr.said from running/Walking too much) anemia, low white blood cells, high and sometimes low liver enzymes. In fact after my son was born, my doctor sent me to an oncologist who told me that my blood work was showing all the signs of an autoimmune disease, but he couldn't find it and told me to eat healty and excercise and maybe it would resolve. UGGGGG! I took the blood test and sure enought it was positive. I had a biopsy last friday and the GI's office called yesterday to tell me that it was positive. I actually started a gluten-free diet the same day as the biopsy. And since I have been eating gluten-free my son has had much less and his stomach is flat and he seems better, no diarah! Duh.

So now what do I do? Do I keep him gluten-free? Do Or keep gluten in his system until he develops a positive blood test? Is the GI right or should I call back and insist on a biopsy? What do I do? I just want my son to stop hurting and be healthy. Help!

[hez]

You might not like my answer. You need to do what is best for you and your family. I am not a doc but I am a Mother. You need to balance the info from the doc and your instincts. You are the one who is with him all the time, not the doc.

[Rachel--24]

You might not like my answer.  You need to do what is best for you and your family.  I am not a doc but I am a Mother.  You need to balance the info from the doc and your instincts.  You are the one who is with him all the time, not the doc.

<{POST_SNAPBACK}>

I agree. Do you *need* that official diagnosis for your son? If you do then listen to your doc and test him later. Do you feel he's suffering from eating gluten? Do you see an improvement w/out gluten? These are things you need to think about. Since you already know the chances of him having it have increased drastically w/ your own diagnosis you just need to decide whether or not you want to keep him on something that could potentially be harming him. Trust your instincts.

[ryebaby0]

No doubt by now you've come across the information that many doctors feel that testing children under 2 is inconclusive (even if they later turn out to have positive bloodwork) so they don't put much stock in results before 2y.o. And many doctors, with good intentions and training, just aren't very knowledgable about celiac. Even doctors are people, who are just wrong sometimes.

If you are positive, your son is much more likely to be. The simplest thing is to put him on a gluten-free diet, and see what happens. You've nothing to lose -- it isn't easy at first, but it's not that awful, either. Definitely do-able. We're here to help!

If he had a positive dietary change, you could go back to the peds GI and relate that information, say, when he is 3 or so. Most doctors won't do a gluten challenge anymore, but if you/the doctor felt it was really important to have an ironclad diagnosis based on pathological results (rather than clinical observation) it wouldn't be impossible to then briefly re-introduce gluten and re-test. (But it would be unpleasant!)

Your motivation? If he is an untreated celiac, his other "intolerances" may just be reflecting the damage inside, and may resolve in time once he is gluten-free and healed. If he is an untreated celiac, he may just get sicker and sicker and sicker (or maybe not, there's no way to know, everyone varies).

I would try the diet, and see what happens. Make sure you stay positive and matter-of-fact, and no cheating!

Joanna

mom/wife to celiacs dx. 12/03 and 12/04

[JessicaL]

Thanks so much for the responses. I guess my only dilema with the iron clad diagnosis is that I want him to know for sure at some point in his life. gluten-free diet seems like it would be difficult for a lifetime if you weren't sure, but maybe he'd be so sick that he would'nt want to eat gluten? My gut says that he will become healthy shortly after going gluten free. My husban's too. I think we'll try it. Our little guy could sure use a break from being sick!

I can't thank you enough for the posts, it's so nice to know that aren't alone.

Sincerely,

Jessica

[Rachel--24]

Thanks so much for the responses.  I guess my only dilema with the iron clad diagnosis is that I want him to know for sure at some point in his life.

<{POST_SNAPBACK}>

I honestly don't think he'll question not having had an official diagnosis. By the time he's old enough to know the difference you're family will already be accustomed to the gluten-free diet. It shouldn't be hard for him since he's starting out so young...he won't be making the same adjustments you're having to make with your own diagnosis. gluten-free will just be natural for him as he gets older....he wont know any different. If he ever does get curious I'm sure the symptoms will "verify" that he needs to be gluten-free.

[Indea88]

I can empathize, I too have a two year old, sickly, pale had dark circles under his eyes, never slept, irritable, never had a formed stool since he was born. Not only did all those symptoms disappear after the gluten-free diet his behavior and so called autistic traits are gone. Had him tested after seeing a ped GI specialist who has Celiac. The celiac panel was negative but his gene testing was positive. Dr. said the only way to know is to put him on Gluten for 4 months. There is no way on Gods green earth would I even consider this. My sons transformation after being gluten-free is more than enough for me to go on.I personally never need to have him tested again. Im convinced and look forward to seeing him finally feel better and begin a healthy childhood. His father has Celiac. I dont want to tell anyone what to do I do enough of that with my DH he wont stay gluten-free, but I would think your child sounds somewhat like mine and gluten-free would be best