Licking my wounds

[irisheyes13]

Hi All,

Well I'm back after a short stint away. Not actually away because I logged on and read as much as I could but just haven't had it in me to post.

I feel like I am right back at square one or maybe even a few steps behind square one and am struggling to eat enough to sustain life. I know so many of us have been here before so I'll figure it all out and hopefully start to feel a tiny bit better soon.

I can attest to the fact that stress can completely shread the entire GI tract with no assistance from food because that is where I have been since last week. Last Tuesday I ended up in Children's Hospital with my daughter, Logan who had just turned 18 the day before. She had been complaining of extreme thirst so I told her we needed to get it checked out. The short version of the story is that she was admitted that night to the hospital with the diagnosis of Type I/Juvenile Diabetes. How is this possible?! This is my type A personality, organized, health-conscious, athletic kid. I'm heartsick and lost right now. She's doing amazingly well, all things considered and is out of the hospital and hasn't skipped a beat giving herself her insulin shots like a champ and testing and treating her lows accordingly. She's so strong but me- not so much right now.

I'm doing everything I can to make sure her diet is spot on and watching her like a hawk. I'm not even sure where to begin getting back on track myself however. I've been following Joe's thread regarding his MRT testing and the surprise with rice being a reactive food and I'm beginning to believe that it may be a problem for me as well. It's starting to feel like there aren't many food options left or maybe it's all stress and no matter what food I eat right now, there will continue to be cramps, gurgling and raging D until life settles down some.

The one blessing has been that my daughter took a look at her diet limitations and her insulin/eating schedule and said "this is easy compared to what you are dealing with mum" and "we can commiserate together when we are feeling sorry for ourselves". She thought maybe we could have a sugar free jello party but I told her I can't have that either and we just started to laugh.

Sorry for the sobfest but I needed to jump back on and post so that I can attempt to get focused again on my health so that I can get strong for my kiddos, especially Logan. Maybe Paleo might be a good starting point...

[mbeezie]

Kelly,

I was wondering where you were. . . . so sorry to hear about your daughter. It sounds like she is taking it in stride and will be able to manage the diet in time, once she learns more. It helps that she is health conscious and athletic. Did you know that there has been some research done linking gluten to diabetes? There appears to be a much higher prevalence of celiac in the diabetes population. It would be wise to get her screened.

I can only imagine how this stress is affecting you. Nothing gets to me more than when there is something wrong with my child. Hopefully once things settle down for you, you can do MRT and figure out your sensitivities . . . rice may very well be on the list.

Sobfests welcome here, sodon't worry about that.

Love,

Mary Beth

[Joefnh]

Hi Kelly that's not good news about your daughter, but it sounds like she has your great attitude and strength. What a trooper to look this diagnosis and say that you have it tougher mom.

Best wishes to both of you, you both are such an inspiration.

--Joe

[irisheyes13]

Yeah, Mary Beth, she is a trooper and always manages to amaze me. Last February she tore her ACL in her knee and had reconstructive surgery and a year of rehab and was just getting back on track with athletics -now this. I have spent much of the last week trying to read everything I can get my hands on to get educated on Juvenile Diabetes and I have read many of the correlations to other endocrine/autoimmune diseases but haven't seen anything specific to gluten although I have so much reading to do. They have done the standard blood tets for celiac and thyroid panels on her but the results are still pending. I don't want to overwhelm her too much right now with any additional restrictions but will consider eliminating or at the least limiting her gluten intake. We are working with a pediatric endocrine dietitian but the thing that isn't sitting well with me is the strong push for artificial sweeteners with these kids. I realize with diabetes the focus is on keeping blood sugars low/stable and limiting high glycemic foods but almost everything which showed up on her food tray in the hospital was sugar free via artificial sweeteners(syrup, yogurt, drinks, jelly etc).

If I could take this away from her somehow, I would. It is so stressful to watch helplessly when your child is suffering or hurt.

Joe-thanks for your kind words. She's tough as nails and will manage it like she does with everything- efficiently and eloquently. It just sucks.

Glad to hear you have your MRT back and will begin the LEAP diet soon. Good luck with it:)

[Polly]

Oh Kelly,

I am so sorry to hear about your daughter's illness. She does sound like a real trooper, however, with the determination and spirit to do what's best for her health. Amazing maturity for an 18 year old!

I can only imagine how agonizing this has been for you. And so hard on your gut, I'm sure.

Hang in there and feel free to rant and rave all you want. Your family has definitely hit a rough patch recently. You have every right to a "pity party" and we will be happy to commiserate with you anytime.

Love and a

Polly

[ant]

Dear Kelly

Logan said

"this is easy compared to what you are dealing with mum" and "we can commiserate together when we are feeling sorry for ourselves".

That just hit my in the heart (positively). Whoever says that young people are all materialistic (or whatever) have never met great people like your daughter, Logan!

I admire her and your spirit, love ant

[Kari]

Kelly,

So very sorry to hear about your daughter's (and yours) debacle, but glad you got back here and posted - it helps to get it out, and it's hard to find a more supportive and understanding group than this one. Logan's attitude is very impressive - have a feeling that no matter what happens, she is not one you have to worry about. She sounds like she'll manage any obstacle coming in her life path, and bounce back with ease.

As for your MC - yes, I'm sure the stress has thrown you for a loop. Just know that you will get back on track as soon as you are able to give it your attention again. It is a very hard battle to fight, as everyone here can attest to, but we are here to support you every step of the way!!!!

Lots of love and all the best to you and Logan,
Kari

[tex]

Hi Kelly,

I'm sorry about such an unpleasant turn of events. It seems that fate never tires of testing us, just to see how much more we can handle.

It's great that she's taking it so well, though. Obviously you've taught her well.

Concerning research showing a connection between type 1 diabetes and celiac disease:

“The presence of autoantibodies against tissue transglutaminase (anti-tTG) implies that celiac disease was present already at the time of Type 1 diabetes onset in all children having both diseases,” he said. “Hence, celiac disease may precede and cause Type 1 diabetes in children with both diseases.”

http://www.glutenfreesociety.org/gluten ... es-linked/

Also, note this quote from that site, (the red emphasis is mine, of course):

Gluten sensitivity is the only 100% confirmed cause of any autoimmune disease.

Here's a link to a more comprehensive discussion about the link:

http://news.healingwell.com/index.php?p=news1&id=622184



Tex

[sarkin]

What a great kid - my heart goes out to you, watching your wonderful girl deal with a tough diagnosis. She really sounds amazing - plenty of folks much older could learn from her courage, cheer and empathy.

We've had two neighbors with sudden Type I diagnosis in the past few years, and they are both doing great! The teenager in particular has just been an inspiration every step of the way. (We adults should give teens more credit - at least the ones like your daughter.)

It's interesting that they encourage artificial sweeteners. I can see why they want to remove the feeling of deprivation. If it were me, my inclination would be to retrain my tastebuds to be less sweet-craving (but that happens to be easy for me, and I wouldn't impose it on anyone else).

I hope you yourself are feeling better fast. I think it's great that your daughter is looking on this as a shared experience with you - it sounds as though she wants to be a real support and partner with you in health, and I wish you both all the best on your connected journeys. I'm heading Paleo myself - actually had sort of a scary day yesterday of feeling worse, but I think I was just hungry. I felt better almost as soon as I sat down to dinner and had a few bites. I hope you have that feeling TODAY.

Tex - just saw your post, and WOW. That's quite a sentence you highlighted in red. I look forward to reading it in context.

Sara

[nancyl]

Kelly,
I'm so sorry to hear about your daughter's diagnosis. She certainly is a trooper and will most likely handle it better than you. Once a mother always a mother, you never stop worrying no matter what their age. And, for you to have a flare on top of it all, it just doesn't seem fair. Hopefully, you'll get yourself turned around quickly. When you're feeling better you will most likely handle your daughter's situation better too.

Stay strong,
Nancy

[irisheyes13]

Polly, Ant, Kari, Tex and Sara,

Thanks for your kind words, hugs and support. It really does help more than you know. Logan is a very special young lady but I don't know how much of that I can take credit for. I am blessed with some great kids. She has surrounded herself with incredible friends who have rallied around her this last week and I believe it has helped her in accepting her diagnosis. She has a friend who also happens to be a neighbor and is the same age who has been living with diabetes since she was 2 years old who reached out to her in a big way and is giving her advice and tips everyday and told her "she has her back". Her mom has contacted me as well which has been an immense help. There really are some exceptional people in the world and many of them log in here daily.

Tex, thanks for taking the time to search out those links. It's not good news but none of it surprised me. There is so much to learn about autoimmune diseases, the causes, prevention and cures. The healingwell link offers a link to the juvenile diabetes research foundation website (which I have spent many hours on in the last week). The following is a quote from JDRF:

Celiac Disease occurs in 1 in every 10 people with type 1 diabetes, as compared with 1 in 100 cases in the general public.

That's some scary stats. Sigh. Logan is leaving in the fall to attend Penn State which is freaking me out just thinking about it. It's unfortunate that she has to deal with managing diabetes while in college and it is scary from a parent perspective to let go of any child to watch them leave for college let alone fresh off of a diagnosis like this. After reading some more this morning I think it is in her best interest to try to assimilate gluten free as part of her diabetes diet. I'm not sure how or when I want to approach her on this. She is doing so well and I don't want to rock that boat or add to her distress but it really seems like a "no brainer". In addition I think Enterolab testing are in in order.

Sara- Let me first say hi and what a breath of fresh air you are:) I read your introduction thread while sitting in the hospital and it is unfortunate that you had to find us here but your personality comes shining through in your writing- Love it! I've really enjoyed reading what you have said in many of your posts and also glad to hear you are feeling better today.

During Logan's stay in Children's Hospital I met several inspiring kids similar to your neighbors. She was on the adolescent endocrine wing and they encourage the kids to interact and get out of their rooms once they are stablized. What is really scary is the increase in kids being diagnosed with diabetes. There has been 30 teen/preteen kids diagnosed in that hospital this month so far (this doesn't count the younger children under 10). The pediatric endocrinologist confirmed they are seeing an increase but of course they don't have any answers as to why i.e. environmental, dietary etc.

I have been encouraging Logan to keep with her water routine instead of Crystal Light etc but as most kids, she does have a sweet tooth and it is encouraged by her medical team to eat sugar free (substitute) rather than picking up an apple or some grapes which is what she is used to doing. I'm still trying to work this out in my mind so that I don't give her conflicting signals or wrong information.

On a personal note, I think I may pick up Cordain's book and get serious this week. For now I'm just hanging out and hoping for an end in sight.

[Gloria]

Kelly,

I'm sorry that your daughter has been diagnosed at a young age with diabetes. It sounds like she's handling it pretty well. She sounds very mature. I hope you both can adjust to your new challenges.

My DH has type II diabetes and has finally decided to pay attention to his diet. It's been challenging for me to watch what he eats along with monitoring what I eat. I can understand your concern and stress.

You are correct that the diabetes recipes all stress substitute sweeteners. I've tried to compromise by using 1/2 sugar and 1/2 substitute sweeteners in things I make for DH. Almond flour is naturally sweet and recipes containing it usually have less sugar.

The gluten connection to diabetes has always intrigued me and I'm considering having DH tested. Enterolab seems to have the cheapest genetic testing.

Gloria

[sarkin]

OK, I'll go pick up Cordain's book, if you will!

I remember hearing that artificial sweeteners can affect blood sugar, perversely enough. I just did a little Googling, and it primarily confused me (really hoping I get some brain cells back when the digestive dust settles). I think you're wise not to overburden your newly diagnosed daughter in one fell swoop - but maybe you can help her come to her own conclusions, once your delicious Paleo expertise starts tempting the whole household. And once you're feeling better.

She still has some months under your care while she builds her routines and coping strategies. College is such a great awakening, and also such a time for making the occasional foolish mistake. Luckily, your kid is already head and shoulders above the pack for common sense and a great attitude, so (despite trepidations), I think you will be able to count on her to minimize the serious risks. And of course she won't be truly on her own - her roommates, friends and residential/academic advisors will be part of her support system, as they are for kids who don't happen to be dealing with diabetes. Any high school pals headed to Penn State along with her?

I'll let you know when I get the Paleo book in hand,

Sara

[tex]

I have been encouraging Logan to keep with her water routine instead of Crystal Light etc but as most kids, she does have a sweet tooth and it is encouraged by her medical team to eat sugar free (substitute) rather than picking up an apple or some grapes which is what she is used to doing. I'm still trying to work this out in my mind so that I don't give her conflicting signals or wrong information.

This may be a tough issue to deal with, because I don't know about you, but it's very difficult for me to visualize any artificial sweetener as "healthy".

Speaking of artificial sweeteners, is it just my imagination, or is that all the hospitals serve, these days? When I was recovering from surgery, (a year ago), after they restarted my digestive system, I advised the hospital dietitian that I was gluten-sensitive, and they assured me that they could handle it. The first day was supposed to be liquids only, so what did they bring me for breakfast? Low-fat milk, unsweetened orange juice, coffee, etc. Any of that will go right through someone who has just had abdominal surgery. I figured that I had to eat something, so I tried about half of the milk, and paid the price later, with gas and bloating, (and at this point, I no longer had a colon, so obviously one doesn't have to have a colon to experience gas and bloating). Later, a nurse felt sorry for me, and smuggled in a small can of sprite, which helped to make me belch, and I felt a bit better.

At every meal, there were plenty of individual packages of a "sugar substitute". I picked up one of them and put on my glasses, (so that I could read the microscopic print). The list of ingredients was almost as long as my arm, but, the words "aspartame" and "gluten", are the only ones I can still remember.

Tex

[TooManyHats]

I'm so sorry to hear about your daughter. I'm glad to hear she's handling it so well. I'm hoping your stress levels off soon. There is nothing worse than watching your child suffer.