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Diabetes Dx

ryebaby0

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ryebaby0 Enthusiast
ryebaby0
Posted

My son was back to the doctor a week ago, because I thought he had a UTI he was peeing all the time. I noticed on his lab results (he has bloodwork done regularly for another condition he has) that one of his glucose results were high -- out of range, but not horrendously so-- and I realized he could be developing Type 1 diabetes. So I went home (he is commuting to camp with his dad this week) and sat on the floor and had a crying fit. I know type 1 is one of the "partner diseases" of celiac....

His doctor didn't even mention it, they are assuming all his abnormal labs are a result of the powerful immunosuppressant he takes (which has, as a side effect, Type 1 Diabetes in some patients) and are adjusting his dose. More blood tests next week. So between now, and then, all I can think of, all I can hear, is another dx of another awful life-changing, food limiting chronic illness. I tell myself I'm just borrowing trouble, but I can hear the freight train of disaster coming again and am experiencing a lot of flashback stress.

I think I am just venting to a sympathetic audience. My mom was "well, that's not so bad, you can do this" but I am just DYING inside, thinking of this possibility too. He's celiac, and allergic to eggs, and immunsuppressed. Can't go in a pool, can't drink from a water fountain, can't eat pizza, can't go to a county fair, can't be out in the sun without a hat and sunscreen (lymphoma is common in immunsuppressed patients.....)

ARgh! Feel badly for me, I'm having a pity-party.... :)

Thanks for the forum

Joanna

mom to my 12.5 yr old-- celiac, egg allergy, autoimmune enteropathy (self-rejection of his GI tract)

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ehrin Explorer
ehrin
Posted
My son was back to the doctor a week ago, because I thought he had a UTI he was peeing all the time. I noticed on his lab results (he has bloodwork done regularly for another condition he has) that one of his glucose results were high -- out of range, but not horrendously so-- and I realized he could be developing Type 1 diabetes. So I went home (he is commuting to camp with his dad this week) and sat on the floor and had a crying fit. I know type 1 is one of the "partner diseases" of celiac....

His doctor didn't even mention it, they are assuming all his abnormal labs are a result of the powerful immunosuppressant he takes (which has, as a side effect, Type 1 Diabetes in some patients) and are adjusting his dose. More blood tests next week. So between now, and then, all I can think of, all I can hear, is another dx of another awful life-changing, food limiting chronic illness. I tell myself I'm just borrowing trouble, but I can hear the freight train of disaster coming again and am experiencing a lot of flashback stress.

I think I am just venting to a sympathetic audience. My mom was "well, that's not so bad, you can do this" but I am just DYING inside, thinking of this possibility too. He's celiac, and allergic to eggs, and immunsuppressed. Can't go in a pool, can't drink from a water fountain, can't eat pizza, can't go to a county fair, can't be out in the sun without a hat and sunscreen (lymphoma is common in immunsuppressed patients.....)

ARgh! Feel badly for me, I'm having a pity-party.... :)

Thanks for the forum

Joanna

mom to my 12.5 yr old-- celiac, egg allergy, autoimmune enteropathy (self-rejection of his GI tract)

I know you feel like it's the end of the world, but truly diabetes is a very manageable disease - I've had it, complication free, for 26 years! (dxed at the age of 3). Just so you know there really are no limitations on foods these days. The food limitations are for T2 diabetics that control with diet and exercise. So if your son is dxed he will be able to eat anything he wants. These days we carb count - the old "diabetics can't have sugar" rule is out the door. I do hope that your son is okay though...

hang in there!

Laura--G Rookie
Laura--G
Posted
:( I do feel bad for you. I feel your pain. My son was diagnosed with Type 1 Diabetes first (when he was 3) and Celiac this year, he's almost 9. On top of that, he's allergic to peanuts, fish, eggs, apples and he has athsma. I actually thought life was great when I had the Diabetes under control and it wasn't so bad because he could still eat a lot of things. Then our endo started testing all her Diabetics for Celiac. I thought for sure his tests would be fine. He was cranky and moody but I just figured that was his Diabetes. Sure enough, his tests were positive. I have never been more upset in my life, thinking to myself, "it's always something." It's been 4 months of having both diseases now and we are adjusting much better. Whatever happens, you feel the initial shock, but after a while it's just normal life to you and your child. The hardest part was my son went to a private school at that time and he already felt different for having Diabetes and, maybe it's because he was older when he was diagnosed with Celiac, but he kept saying "what else am I going to get? am I ever going to just be normal?" It's so hard to see them like that. Things have turned around and he's much happier now but it is always hard to find these things out. Feel free to talk to me anytime if you need to.
2kids4me Contributor
2kids4me
Posted

My heart goes out to you, I know it seems like an old saying - but things will get better. The hardest part for me was waiting to find out and then dealing with the initial aftermath. It is good that you came here. posted and are looking for support - I felt so alone one year and I even asked my children's doctor - is there a support group for parent of kids with multiple issues??

It started in June 2003 with my daughter becoming very ill and having Kawasaki diesease (she already had hypothyroidism, hypotonia,and Aspergers .......she was just recovering from that when my son was diagnosed with diabetes. I literally had to double check which kid had the appt so I'd bring the right one - cause they both now go to the same endo. Son adjusted well to the diabetes (he had seen mom take insulin every day) ......then D was being investigated for celiac. Months after she would be diagnosed with celiac, followed in 6 weeks by son diagnosed celiac and inbetween thew two celiac diagnoses - son broke his arm. I laughed when the hosp phoned to book appt for cardiology - and they started telling me where parking was and what floor to go to - I simply said - we know all the specialties - D has been to neurology , endo, cardilology, ortho, gastro, genetics, day surgery, diagnostic imaging ......... I asked if I could get a reserved parking spot..... the person on the other end did not understand my black humour.. she replied very business like and said those spots were for staff....

I wanted to go somewhere where time stood still or someone could at least get me off the *&%! *roller coaster. I felt like I was on a different planet some days...

I do know exactly what you are talking about - please vent when you need to cry when you need to and come here and tell us about it. I wish I had known about this board 3 years ago - it would have been my haven for my mind. This IS the place where you can come and most are dealing with multiple issues with themselves and/or their kids, no other one like it.

Hang in there!!

TCA Contributor
TCA
Posted

VENT all you want and the vent some more. this is the place to do it. I come here for my kids all the time. My daughter has multiple issues, my son has celiac, my hubby has Type 1, so we're balancing a lot and it's working well (except we haven't figured it all out for DD yet). If you get a diagnosis of diabetes, it is so easily controlled now. My husband has a pump and it is WONDERFUL!!!!!! When he wants to "Cheat" he just gives himself a bolus. I'll keep you in my prayers!

Ursa Major Collaborator
Ursa Major
Posted

Joanna, you're entitled to that pity party. I hope it isn't turning out to be diabetes, but I know that if it is, you'll learn to deal with it. But it is okay to be upset and even angry about it, don't suppress these emotions, it is better for you to come here and vent.

I will pray for your son, you, and your whole family.

Tony'sMom Rookie
Tony'sMom
Posted

I hope your son is ok. I know how you feel, my infant was just diagnosed with diabetes on Monday. Now I have 2 diabetics, both of them diagnosed at age 1.

Hugs.

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ryebaby0 Enthusiast
ryebaby0
Posted
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His for-right-now doctor called this afternoon, and now SHE is leaving for vacation, too. She assured me that the peds gi doctors are always consulting on certain cases (and his is one of them, that's true) and I asked if I should be concerned about the elevated glucose. She said no, since it wasn't truly a fasting test(He'd had a donut hole or other bite of something before we left for that early am bloodtest, so it would be the ONLY thing he'd had to eat since the previous night) but said if I really worried about it, to make sure the test on Wednesday was taken under fasting conditions and they'd look.

But I called the lab to make sure the script was there today,and glucose isn't included on the order, anyway.....another phone call round to make. Arg.

Sighhh... the roller coaster analogy is so apt. Although some days it feels like I'm tied to the bumper!

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