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OBXMom

Am I Missing Something?

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I am feeling very guilty all of a sudden, as I read more and more posts and see how much I have been missing. I feel so guilty about all of the times I didn't pay enough attention to my son before his celiac diagnosis (for a morning tummyache - "Just eat something, sweetie, you're probably just hungry") and I don't want to make any more mistakes.

We are of course following a gluten free diet, though I am still learning about some things I need to be more careful about, like natural flavoring. We are in the middle of an elimination diet to see what is still causing his tummy to hurt (so far soy & milk.) We are scheduled to begin counseling to deal with his fear of most foods. But what else should we be doing?

We aren't doing any vitamin supplements other than gluten free gummy bear types because my son won't take the powder kind that you can put in pudding or the liquid kind that our nutritionist recommended. He doesn't eat any kind of combined ingredients, and zero fruits and veggies. I also am worried about his bone pains. Should an 8 year old celiac get a bone scan? I feel that if I had pushed harder earlier to get a diagnosis, we could have saved the little guy so much pain, and now I just don't want to miss anything else.

- Jane


Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy

Elimination diet resulted in avoiding dairy, soy & corn for a time

Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself

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Hello there, I can't offer much advice, but I can say I understand. I, too go through days of beating myself up that I didn't push for a diagnosis. It is very easy to look backward and beat yourself up. You are not alone.

I down played stomach aches and itchy skin. I even think that I led the doctors astray by saying what I thought was the issue, when I was dead wrong! One example: My daughter threw up nightly when she was smaller. Well, She had allergy problems, and the allergist and I agreed that her little tummy couldn't handle the post nasal drippage. That might have been true, but there is very little post nasal now that we are 10 months gluten free. Did my commenting on her allergies mean we didn't see that something bigger was going on. How did I miss that the painful tummy aches, the throwing up, the ...... You get the picture.

All I can say is this: We are both doing the right thing now! That is all we can do. Keep fighting for your child and trust that you are on a path to better health for him. You will do a wonderful job for him. (Even when we make mistakes)

Best Wishes, Christine


Kat's Mommy - Christine

dd2 confirmed Celiac by biopsy 5/07 age 6

Probably Intolerant myself, by positive response to diet, but the ttg was normal

Still trying to figure it all out a little bit at a time.

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I can empathize with your feelings as well. We just took my 3 year old off gluten almost 3 months now b/c of growth issues, and she is doign pretty well. I look at my 6 year old, who has off and on complained of stomach pains, always has the dark circles under his eyes, and generally less energy than the other. He was tested at age 3, and the results were negative, when I was sure they woudl be positive, so we carried on with his regular diet. I think I just decided today to take hime off completely. He is OK with everything except pasta-his absolute favorite. Ifeel guilty for not jumping ont this earlier, but with MD saying it was OK, and so many other things going on, . . .sigh

He was very ill last summer with Lyme disease, and the diagnosis took months. I had trouble getting the MD to take his symptoms seriously, in part because I wasn't taking them seriously (exteme lethargy and decreased appetite were for starters) He also has some speech regression which no one believed was related for a long time, turns out it was neurological lyme. When he started losing weight, I finally started fighting with the MD a little, but it was still a battle. I first took him to the MD in the end of May, and he didn't get an IV line until the middle of August, and was markedly better in 3 days. It killed me that I didn't push for it earlier. My little guy lost most of his summer. Point being, we can only do the best we can, assuming we made the best choice with could with the information we had at the time, and keep moving forward. it did make me loose faith in doctors.

On vitamins front, my kids love the sour calcium bears as well as the regular vitamin gummies. They think those are the best part of being gluten free. You can sneak a lot of fruit into smoothies- my guys do drink soy milk but you could use rice milk, mixed with frozen bananas, and other fruits, we like it with orange juice concentrate (calcium enriched) it tastes like an orange julius. We also use frozen berries, and frozen pineapple. I just empty a can of fruit into tupperware and freeze. When you use frozen fruit it comes out thick and icy, like a milk shake. You can also sneak those other vitamin powders into them.

I hope things starting looking up soon.

Patty

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Patty & Christine,

Thank you for sharing your feelings and stories, they really do help. Especially in the last couple of days, when my little guy has been very sick, and I've been wondering how he could possibly have gotten any gluten, or if that is even what is going on. I hope you and your children have a good week-

Jane


Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy

Elimination diet resulted in avoiding dairy, soy & corn for a time

Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself

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First, we all have felt (and unfortunately, will feel again) that guilt. I have spent many very down days (in fact, several weeks at the beginning) beating myself up with guilt. The best I can say about that is to just try to be logical; the guilt for things you've done in the past isn't helping anyone. In fact, it's probably hurting. So, do your best to let it go.

As for bone pain, definitely have him tested for bone density. Dr. Michelle Pietzak (pediatric g.i. doctor who specializes in Celiac Disease, www.glutenfreemd.com) recommends it for ALL newly diagnosed Celiac Disease patients, regardless of age. The bone pain may be nothing but growing pains, but have it checked out just in case.

And, if you are anywhere near southern California in the beginning of May, or if you're thinking of a trip, you should see if you can get to the CDF (Celiac Disease Foundation) Annual Education & Food Fair Conference on May 3. I went last year and learned quite a bit about the disease and the latest research, and this year Michelle Pietzak will be talking about follow up care as well as be available for questions during the breaks. It's expensive, but the amount of free stuff you get is at least equal to the price. The vendors give out a ton of samples. And it's also nice to have a safe gluten free lunch and breakfast included. Here's a link for more information on it:

http://celiac.org/newsEvents/conference2008.php

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First, we all have felt (and unfortunately, will feel again) that guilt. I have spent many very down days (in fact, several weeks at the beginning) beating myself up with guilt. The best I can say about that is to just try to be logical; the guilt for things you've done in the past isn't helping anyone. In fact, it's probably hurting. So, do your best to let it go.

As for bone pain, definitely have him tested for bone density. Dr. Michelle Pietzak (pediatric g.i. doctor who specializes in Celiac Disease, www.glutenfreemd.com) recommends it for ALL newly diagnosed Celiac Disease patients, regardless of age. The bone pain may be nothing but growing pains, but have it checked out just in case.

And, if you are anywhere near southern California in the beginning of May, or if you're thinking of a trip, you should see if you can get to the CDF (Celiac Disease Foundation) Annual Education & Food Fair Conference on May 3. I went last year and learned quite a bit about the disease and the latest research, and this year Michelle Pietzak will be talking about follow up care as well as be available for questions during the breaks. It's expensive, but the amount of free stuff you get is at least equal to the price. The vendors give out a ton of samples. And it's also nice to have a safe gluten free lunch and breakfast included. Here's a link for more information on it:

http://celiac.org/newsEvents/conference2008.php

Letting go of guilt . . . you're right, I'll try. And the CDF sounds awesome, but as an east coaster, unfortunately not a possibility for me. Please post anything interesting you hear and reviews of any great samples - I'll be watching. Hope its great.


Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy

Elimination diet resulted in avoiding dairy, soy & corn for a time

Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself

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Perfectly normal to be feeling guilty, and also like you need to be constantly vigilant. I will be honest and say I don't think I will ever get over the pain of some of the things we missed, but I try to let it go. And it's been 4 years!

Your son needs vitamins, both to grow and to feel better.He needs calcium. He may need extra zinc, iron and folate, but a blood test will be necessary to find that out. Don't pity him. Don't let him do the "I've been so sick and feel so awful" thing that ends with you going against parenting common sense and radar. You wouldn't let him play in traffic, or run with scissors. A normal amount of grieving and distress is to be expected -- but you be a regular mom like all the others and say "mr, if you want to feel better, you have to do feel-better things like eat a fruit or veggie . " and let him help do the choosing, or whatever the therapist recommends (i realize you have some multiple issues here!)

Milk intolerance is to be expected with early celiac disease diagnosis. That may well come back. Hang in there!

joanna


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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My 8 year old son was just diagnosed in December. We also lived through 8 years of leg pain, stomach pain, loose stools, dark circles, fatigue, runny noses, etc. Hind sight is 20/20. When I list it all out like that it looks like a big brick about to hit someone, but taken individually we (several doctors included in that "we") didn't see it. Try not to feel quilty. We went to a celiac support meeting last month. I saw all these older adults with so many problems resulting from years of undiagnosis. Our boys are just 8. Yeah, it would've been great if we caught it at 3 or 2 or better yet before then were even born. But we didn't. But we didn't catch it when they were 20 or 30 or 60 either. We're only human and we're doing the best we can. Think back to all the incredible parenting you've done over the last 8 years...including continuing to work to find out what was wrong with your son. I had so many doctors tell me my son was healthy, thriving, and doing great, but I never stopped questioning and it led to his diagnosis.

I've been struggling as well trying to figure out why my son has improved tremendously, but not 100%. We took him off dairy. No change. We limited diet. No change. We scrubbed, washed, watched, read labels, made phone calls. No change. Then we went to Disney! And spent 7 glorious days of him eating at restaurants and guess what. CHANGE! His stools were 100% normal! So how's that for a kick in the face? Here I'm doing everything I can and can't "fix it" but strangers in a kitchen filled with gluten are able to get it right. But I'm not giving up! I went out yesterday and bought new pans (they were the last thing to be replaced in the kitchen). Obvioulsy I don't know if that's the answer yet, but we have to keep trying. We'll get it! And our kids will be so healthy it will be amazing!! I'd love it if I could get it right immediately, but evidently that's not how it's meant to be.

And I agree with the post about not pitying your son. Yes it's hard. Yes something else out there is easier. But there is a heck of lot of stuff out there that is a lot worse. You and he really need to focus on the positive. You caught it when he was a young boy. He can still do (fill in whatever his favorite activity is). He can still eat so many wonderful foods. As you teach him to cook for himself you will have the opportunity to spend special quality time with him that you may not have had before. The list can go on and on. Maybe you should write down all the things you've done right, all the things you can still do, all the things you have to be thankful for. That kind of thing really works for me. And please don't feel any more guilt. It will only rob you of good times with your precious son!

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