Confronting the Doctor

[Kristie]

Hello Everyone,

I am sorry it's been so long since I've posted. 1st, my hubby became very ill with a respiratory infection. Then Matthew (ds) had a gluten and dairy run in. Actucally, it ended up being the Jelly daddy bought for his sandwhiches was processed on equipment that also handled gluten and dairy. It took a few days to find the culprit, but now that I have, he's back to normal. However, during that same time.. My daughter had a HORRIBLE reaction to Poision Ivy.. it's been awful!!!! She got it on her face, eyes, arms, legs, hands, lets just say full body! I was most worried that it would get into her eyes, or that because her faces was starting to swell pretty badly that her eyes would swell shut, but even though it took the Derm doc over a week to DX her, thankfully to God, the meds got in just in time. She's still pretty bad, but doing so much better. Anyway.. sorry to go OT a bit.. now to the reason I am posting..

It's been nearly a year since I've taken my son to the doc for GI. Well, I'll never take him back to the GI specialist in Chicago. (the one who said he just had "Diarrhea of Infancy" and will outgrow it) But I have been thinking, especially after this last run in. My hubby tried to blow it off to be that it could be from "anything" Matthew's Ped just described it as... "He has a very sensitive tummy." Forgive me, but this is frustrating. Otherwise, I feel I have a nice relationship with his Pediatrician. She is the one who ordered the Blood test for Celiac. which came back Pos. However, it was the specialist who dismissed it. I just can't help to wonder if it would be worth it again to talk to his Ped about Matthew not just having a "senitive tummy" and actually having CD. Maybe it's best to leave it alone at this point. He's had various blood and skin allergy tests to conflict one another. 1/2 came back pos to Dairy, and 1/2 came back pos to wheat. The blood test as I mentioned came back Pos Celiac. He's had 2 upper Endoscopies (sp?) and one lower, this was way before Celiac was ever in question so I'm not sure if it's something they would see for sure, or would have to look for, but it was never mentioned. (the last one he's had was at about 18 mos of age) he's nearly 3 now. The latest blood test and allergy tests came at 2yrs of age.
Basically, in my heart, I know he has CD. I just feel if I have confirmation from the Doc, things would be so much easier. I wouldn't get the strange looks from family when I talk to other people about CD. Also, Cross contamination is a big problem here. But when Matthew reacts, family will just say.. "I don't know why, he hasn't had anything"... and here I am thinking.. ok.. well, maybe it's because when you made Pb&J's, you used the same knife and didn't clean it off before changing to his bread.
Ugh.. I'm sorry. I'm getting pretty good at venting here. I'm sorry for being a heal.
Any suggestions would be most appreciated.

[Jeannine]

xxx

[Jeannine]

xxx

[mjbonsais]

I still have to remind family that I cannot tolerate some of the foods they prepare and they wonder why. Many, I feel, tend to think it's like hay fever or something but it is an autoimmune issue.

Also, when other members of my family have health problems or issues I go online to gather all the info I can to support them. I don't think too many of mine have attempted to understand what gene I carry and what other autoimmune diseases this health condition can possibly lead! That is frustrating to me. You grin and bear it but they must conform to your rules.

Maybe print out the main big rules and laminate it for each family member that has your child for any period of time and maybe they can attach to their refrigerator(s)? Just an idea here.

hugs

MJ
_________________
I Am Someone Special

[Kristie]

Jeannine,

Thank you for your input and sympathy. You're right, I have all the confirmation I need for myself. More from "tests" that different diets bring him than by the test results because so many of them contradict one another. What a firm Dx would give me, is in fact, a force of support from family. and when I say family.. I'm using polite terms for "husband" For the most part he supports me and Matthew, but won't say he has CD, nor will he be as careful as he needs to be. He's also positive he'll outgrow it, or that if he continues to have these types of food, his body will adjust to them. (sigh) Mainly cause that's what the doc is implying. (I know better!) I just know with a firm DX I will have his 100% support, I just feel bad for Matthew, because with all he's been through with tests and such, he shouldn't have to go through anything further. sigh! Right now, matthew's pretty much with me 24/7 My mother is wanting to take him out of state to her house for a weekend, but is afraid that she may over look something and he'll react which is why she's only willing to get him for a weekend and not longer. so i do have support from her, but it also keeps her from interacting with him more where as she's wanting to take my daughter for a couple of weeks. I offered to buy and pack all of his food, she has agreed to that for the weekend, now if she just doesn't back out.
we'll see.

[WheatFreePDX]

Hi Kristie:

I felt like you, too, that I KNEW my 18mo old son has CD. He got the bloodtest & while he did have anti-gliadins in his blood it was under the 10EU normal cut off. GI still thought (because I have biopsy proven CD) & he had all the classic sympoms of it doc did a biopsy anyways. Biopsy turned out normal. So I let him continue to eat gluten & he kept getting worse. I felt like I need an offical peice of paper or diognosis, too.

So finally I paid $118 with shipping for the Enterolab stool test for him & he came back at 13EU's; postive for gluten intolerance. I believe by 5 years old (when I had my biopsy) his small intestine would've shown damage by then. I felt so much better having that Entero lab result to show my family as proof. Now he's gluten free & they don't question it & he's been "miraculously" healed.

Of course, you don't need to pay for the lab result to know that gluten free is the way to go. But if your husband need a peice of paper to believe it; that's the way I placaded the skeptical. Hope my story helps you!

Erica (29, Portland OR)
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Diagnosed with celiac disease (bloodwork & biopsy). GF (again in my adult life) since March 2005.

[Jeannine]

xxx

[Kristie]

Jeannine,

[Jeannine]

xxx