As I posted before, my fiancé Alex is still quite ill after being diagnosed with Celiac about 4 months ago. We weren’t sure if recovery was just slow due to a bout of pneumonia or if something else was going on. She was scheduled for a follow-up endoscopy in early June but we ended up getting some answers sooner than that.

I came home from work Friday to find Alex in pretty bad shape. She’d been throwing up all day and was weak and feverish and had intense stomach pain. I figured she had picked up a stomach bug so I just tried to keep her comfortable and hydrated (but NOTHING would stay down). Soon she became so weak she could hardly sit up and was confused and incoherent. I realized we needed to get to the hospital but when I tried to help her up she passed out. After a few seconds of panicking, I smartened up and called 911. It’s hard to even remember all that happened but Alex remained unconscious (but breathing) while we waited for the ambulance.

In the ER, I wasn’t able to be with her at first and had no idea how she was doing. Thankfully, a wonderful nurse also got me into a quiet little room and got a pastor to come sit with me. The pastor was able to go in to see Alex and reported back that she was now conscious and getting IV fluids while the doctors ran tests to figure out what was going on. Finally (half hour later?) someone came out to tell me they had stabilized Alex and brought me in to see her. She looked pretty rough but I’ve never been happier to see her in my life!

Well, it turns out Alex also has diabetes, probably developing over the last month or so. She was experiencing diabetic ketoacidosis which the doctor gently told us can be fatal if not treated . The doc said diabetes is genetically linked to Celiac. Apparently type 1 diabetes often develops quite rapidly so a fair number of people present in crisis like Alex did. She was admitted to the hospital and both her dad(who I called once Alex was stable) and I were able to stay with her the first night. They also ended up doing an endoscopy. Her villi have done some healing but aren’t back to normal yet. But they also discovered that Alex has some serious bacterial overgrowth of her small intestine which is likely partly why she was still feeling so sick and probably also impeding villi regrowth. They put her on an antibiotic and new probiotics which will hopefully take care of that problem.

The doc said in the end it’s probably a combo of the bacterial overgrowth, slowed recovery due to the pneumonia, and the onset of diabetes causing Alex to still feel so crummy. They’ve been teaching Alex (and me) how to monitor her blood glucose and to give insulin injections. Things might be difficult at first while she’s still not absorbing properly and having GI symptoms but ultimately it sounds like something we can handle. She’s tough, so I know she’ll be able to force herself to eat to keep her blood sugar stable even though her tummy still isn’t feeling too good. She should come home on Friday but will need to be monitored closely at first while she continues recover.

Wow, sorry for basically writing a novel about this. It has been a crazy few days. I didn’t realize how much I needed to let this all out. It was a pretty scary experience and I think talking (or typing!) about it helps. It’s weird – It’s not like I want Alex to have diabetes or a small intestine teeming with bad bacteria but it feels good to know what’s going on so that we can deal with it and hopefully get her feeling herself again. Thanks for listening and for past support!

Glad to hear you found out what was going on. What a lucky way things worked out. Hope she feels better soon.

I am so glad you finally found out why Alex was not getting better! This is great news!

I know what you mean that you are happy for the diagnosis, but not necessarily happy about the disease. I was giddy the day I got diagnosed with Lyme! Not because I was happy to have it, but because I was happy to know what needed to be treated.

I bet she'll see rapid progress now!

Oh my gosh. I'm so glad they were able to figure it out.

Let her know we're all thinking of her and praying for a speedy improvement.

Nancy

My goodness! (((hugs))) to you and Alex, what a frightening experience!!! But I am glad you now know what is wrong and that she's on the road to recovery. I said a prayer for a quick recovery and that the diabeties will be easy to control. What a roller coaster for you both, I can only imagine how scary it must have been!

Good that you were there for her - very scary. She will feel better as she recovers. Its an emotional roller coaster at the beginning (both my son and I are Type 1). Especially with the infections she has and recovering from pneumonia.

Alex has to remember -that with diabetes there are lot of things that can impact blood sugar control - hormones, stress, infection. She will have high readings and low readings that are unpredictable - esp at first when they regulate her..its not that she is doing anything "wrong"....I found it frustrating and kept trying to figure out what I missed or what I needed to do different. Some things will be beyond her control and she HAS to giver herself a break.

It is manageable, and treatable....but you both will have a steep learning curve. You are not alone at all! When she feels better, she should come here and vent, ask for support or just tell us how she's doing - same for you!

Take Care and best wishes.
Sandy

Wow.

Alex is so lucky you were there and figured out to call 911 and get her to the hospital.

I hope things continue to improve.

No wonder the poor thing was so sick and not getting better.

I'm so glad you found out and Alex can now be on the road to recovery--for real this time

I am so glad you finally found some answers. She is so lucky to have you. I hope she can recover quickly.

Wow. At least you both know whats going on, and begin the process of recovery.
My prayers are with both of you.
Take care.

My regards to both of you.

HI
Good to here everything is getting better, You sound like you care very much about Alex. Will she have to be insulin dependent or can it be controlled by diet with checking her sugar before and after meals. If she has to insulin depent, have her ask for a insulin monitor. It is a monitor permately attached to her with a little wire connected to her insides pancreus and the other end is connected to a small monitor that has insulin and will inject via the wire when needed it sounds pretty cool but I don't have to wear one. I have seen soome of my past patients have these monitors they seem to like it, no finger pricks I think
Congradulations
Donna

Based on her ketoacidosis, its a sure bet she has Type 1 - the insulin dependent form. The monitor which Little d refers to - is an insulin pump. Speaking from experience - the insulin pump is not recommended until the patient has been under treatment and regulated for one year. It does not connect to the pancreas. A small catheter is placed under the skin and is operated by computer chip to send small amounts of insulin into the patient and then boluses of rapid acting insulin are given for meals..the patient controls that. Some monitors are able to monitor gluciose levels ($$$) but for the ones that dont , you have to test your blood sugar frequently and adjust the pump accordingly. The catheter has to be changed (moved to a new site) every 3 days.

They are not for everyone plus they cost a small fortune. Our insurance plan does not cover them - we checked into cost and they are 6,000 - 8,000 dollars.(Canadian).

Right now they need to correct the metabolic imbalance and electrolyes in Alex, get her feeling better and then the bumpy road to living with it forever. There will be tears and frustration, I have pelted a few syringes at the wall It gets better as health and vitality are restored though - squishy hugs go a long way

Sandy

Hi Sandy

Thank you for your information I was not sure where the pump led to, I have only seen the pump once mabye twice since I have been working at my hospital and I am not a nurse just a Patient care tech in a Dr's office Medical Assistant. But I still hope that Alex can get all her level up to where they need to be and get married to her Fiance

Donna

Ohhh I'm so glad you all figured this out!! I've been thinkin abt u and Alex. Hoping that she gets better! Yay!

Scary!

Luckily you got her to the hospital in time. Hopefully this will be the final piece of the puzzle needed to get Alex on the road to recovery.

Geoff

Thanks for all the kind words and information. It's been a crazy few days since Alex came home at the hospital. It's frustrating and stressful but Alex seems more herself than she has in quite awhile so we're thrilled about that. She's still very sleepy but feeling less weak and definitely less sad. We’re finding episodes of low blood sugar hardest to deal with. She gets queasy and shaky and quite irritable/emotionally labile. I’ve already learned that if my usually calm Alex is angry or crying we really need to check her blood sugar because it's almost certainly too low! It's also hard because many of the suggested foods to raise blood sugar are hard on the stomach or we're not certain about their gluten-free status -- Coke, milk, candies, etc. We've been using fruit juices but I know that can worsen her diarrhea. Any suggestions on high sugar, gentle-on-the stomach-foods? So many things to figure out! It's a struggle but I think we're managing.

Ryan

Okay, I am not at all knowledgeable about diabetes, so forgive me if this is stupid, but would a spoonful of sugar work?

A friend of mine who has a diabetic sister said her sister uses icing. There are many gluten-free varieties.

What about a sugar syrup? You know those flavored syrups Starbucks uses? They have one that's just plain sugar syrup.

A lady in my church who is diabetic keeps glucose losenges with her for emergencies. They're available in the pharmacy area of a drug store. They're like hard candy, but the glucose, unlike sugar or frutose, does not have to be broken down to be used so it can go immediately toward raising the blood sugar level.

Dextrose tablets are the easiest to absorb. There are flavoured varities as well as plain.. my son and I both use about 3 dextrose tablets first then once the shakiness is gone, have a starch and protein with something to drink.
The BD dextrose tabs are soft and melt in the mouth or with minimal chewing. When you are low, even sucking a hard candy isnt fun.
Any sugared pop works well, coke can be hard on some people's stomach.

Nausea and inability to reason is common during a low. As time goes on, Alex will be able to recognize the symptoms earlier on and be able to treat before she gets too low. I remember hating the lows at first because I felt so vulnerable and scared and still learning to cope.
I have really good link for charts to recognize lows and how to treat, we hung them in the house when Matt was first diagnosed at 9 yrs old, because I had had diabetes so long, I knew what it felt like and what to do....but it was all new to Matt so it helped.
I get really cranky when dh startes asking me questions when I'm low, I have spewed swear words at him when he keeps asking me : " are you low, what do you want?", "do you want coke?". "Yes" and " I dont friggin care what you get", or "I dont know"" as I sink to the ground and my arms go limp.
I will get the link and add it....
Sandy

Here's some info you may already have, if not I hope its helpful..

What is low blood glucose?

When the amount of blood glucose (sugar in your blood) has dropped below your target range
(less than 4 mmol/L) it is called low blood glucose or hypoglycemia.
What are the signs of a low blood glucose level?
You may feel:
· Shaky, light-headed
· Nervous, irritable
· Confused
· Hungry
· Your heart rate is faster
· Sweaty, headachy
· Weak
· A numbness or tingling in your tongue or lips

What causes a low blood glucose level (hypoglycemia)?

Low blood glucose may be caused by:
· More physical activity than usual
· Not eating on time
· Eating less than you should have
· Taking too much medication
· The effects of drinking alcohol
Low blood glucose can happen quickly, so it is important to take care of it right away. If your
blood glucose drops very low you may:
· Become confused and disoriented
· Lose consciousness
· Have a seizure
You will need assistance from another person. Make sure you always wear your MedicAlert®
identification, and talk to your doctor or diabetes educator about prevention and emergency
treatment for severe low blood glucose.

How do I treat a low blood glucose?

If you are experiencing the signs of a low blood glucose level, check your blood glucose
immediately. If you don’t have your meter with you, treat the symptoms anyway. It is better to be safe.
Eat or drink a fast-acting carbohydrate (15 grams):
· 15 g of glucose in the form of glucose tablets
· 15 mL (3 teaspoons) or 3 packets of table sugar dissolved in water
· 175 mL (3/4 cup) of juice or regular soft drink
· 6 Life Savers® (1=2.5 g of carbohydrate)
· 15 mL (1 tablespoon) of honey
Wait 10 to 15 minutes, then check your blood glucose again. If it is still low:
· Treat again
· If your next meal is more than one hour away, or you are going to be active, eat a snack,
such as a half-sandwich or cheese and crackers (something with 15 grams of carbohydrate
and a protein source.)

http://www.diabetes.ca/Section_About/highs-lows.asp

Sandy

PS, chocolate isnt always the best because of the fat in it - it takes longer to absorb. If in a pinch - we use caramilk bars - the caramel inside is sweet and seems to absorb quickly.

Thanks for the ideas everyone. Also, thanks so much Sandy for the great info from that link . The Dextrose tablets sound like a good idea. Her first low after she came home from the hospital we used sugar water and she promptly threw it up. I don’t think it was really the sugar water that caused it, probably just a combo of recently taking her antibiotic on an empty stomach and the nausea from the low blood sugar, but still Alex was reluctant to have anymore sugar water. Sounds like with the dextrose, even if she does throw-up she’ll get the sugar in her system since it’s absorbed so quickly.

I think her blood sugar might be more predictable if her intestine would cooperate! We’ve adjusted her diet a bit and have to limit bananas (our go to food since she’s been sick) so I think that might be exacerbating her diarrhea. I guess it can only get easier, as her intestine continues healing and she gets better at maintaining a stable blood sugar. Everything that we’ve been told and that I’ve read says that fibre is great at helping to stabilize blood sugar. But won’t fibre also serve to worsen diarrhea? I know fibre is good for constipation but we’re definitely not dealing with that. We’re reluctant to increase her fibre intake because we don’t want to worsen her GI distress. Are we wrong about fibre? Should we try increasing it?

Thanks,
Ryan

Holy cow.

I have a lot of familiarity with diabetes, as both dad and aunt and an ex-girlfriend have type 1. I can't imagine the difficulties of figuring out and dealing with Celiac and Daibetes at the same time. Tell Alex we're all rooting for her.

With my dad, irritability was the 1st sign his blood sugar were dropping. He'd get grumpy and beligerant. And a little twitchy. We'd recognize that, and tell hime to eat something (even as little kids). Off course, being grumpy, he'd argue and tell us we were wrong.

Geoff

Much to my surprise, my doctor told me that metamucil is great for both D and C. I often complained about D and she told me to get some metamucil and that would help. It sort of did, but not enough for it to go away. Gluten free isn't even helping me too much!

Can Alex eat rice?

Gosh, that must have been so scary, but I'm glad you got to the hospital in time and figured out another piece of Alex's health issues. Hopefully this will be the final answer.

Alex is also still recovering from ketoacidosis, that can take while for everything to sort itself out. My son has celiac and diabetes. Once his intestine healed, his blood sugars stabalized.
and yes, fiber is used to treat constipation and diarrhea. Pumpkin is quite good for the intestine if she can handle that. Only a tablespoon or two of pure pumpkin (not the pumpkin pie filling that has suagr and stuff). You can find it in the canned vegetable isle of the grocery store. It can be mixed in muffin recipes too...
Fibre settles the gut down an stabalizes it's rhythmic movements. A gentle source such as metamucil is great if foods are restricted for whatever reason


Sugar water would make me throw up too. The dextrose tablets are pleasant tasting and a small volume, I can close my eyes and just let them dissolve....during alow I cant really do much more than that. The icky part of being low is that you know you need to eat, you're shaky and nauseous...nothing appeals to me at that point... flat gingerale isn't too bad if I dont have dextrose tablets.

**a note, it is common to feel cold after a low, its due to the adrenalin response in the body trying to mobilize glycogen stores............get Alex a blanket, a warm soft one, when she is low, and wrap it around her... at least for me and my son we have both said afterwards , how nice it was...

Sandy - someone who lives with it

*P.S. We get grumpy and beligerant because there is not enough glucose for our brain cells to function properly, I do not understand questions, I can't even tell you what I need other then to keep saying (yelling) "I'm Low"...or worse I dont recognize it, others do and I fight it. I have a friend whose husband gets so combative, it takes two paramedics to hold him down to treat him.

Please forgive us when we get like this, its a medical condition and we are in an emergency situation. We dont mean to argue or be difficult...imagine what it's like for us to come out of it and realize how we acted.......

Thanks for all the info Sandy. Every time I’ve asked a Celiac/Diabetes question, I wake up the next morning and you’ve answered it in great detail – it’s like magic.


Good to know. She’s had some teeth chattering chills in the aftermath of lows in the past few days and it’s relieving to know that’s normal. Lows are so scary for her – she feels so out of control of her body. I think wrapping her in a warm blanket will definitely help her feel more comfortable and safe.


This part is really hard on Alex. She was so upset with herself for getting angry at me for trying to check her blood sugar when I could tell she was low but she was insisting she wasn’t. As much as I tell her it’s not her fault, it’s still very hard for her to handle. I pray that she’ll always have someone helpful around her during a low if I’m not there or that she’ll get so good at recognizing the early signs that it won’t come to that.

Thanks,
Ryan

Maybe print off some replies so she knows she is not only normal - she is not alone. If she wants to PM me - please tell her to do so - that way she can have a conversation separate from the forum.

Ryan - you must love her very much - you are seeking help and understanding and you are thinking of her first - you are definitley not self centered.
Did you know it's also normal if you feel angry and resentful sometimes too? Find ways to deal with that too, you are not "bad" if some day in the future, you dont handle a low so well - its part of a new life you will come to be more comnfortable with as time goes on.
Any time a life changing diagnosis arrives in our lives - we go through stages of grief as we say goodbye to "normal" and have to learn all this stuff we really could do without - and that includes the loved ones of the person who is sick.
Take care of yourself too.

Sandy

it's hard because it goes against who she is and she knows you helped her, yet she was snarky. Humour works sometimes - depends on the individual - my hubby will say : "Do you feel bad enough to bring me a beer while I watch TV ?" (He says it with a chuckle and he waits til I am fully recovered).

That might be taken badly by someone newly diagnosed - you know her best ... just suggesting a way to make light of it. get her to smile about it and if you are making wisecracks then she knows it really is no big deal
I was diagnosed in 1986 and my son in 2003 so we are "old pros" now.

A Note - very high blood sugars make me irritable in a different way - usually very teary and negative. That too passes as the blood sugar comes down.

If Alex has a severe low (usually a reading below 2.5 mmol) and then treats it - there is something called the Somogyi effect. A very high blood sugar at the next check - its not anything she did wrong - it's that the body mobilized glycogen and there is the sugar she ate + all those stores of glucose that the body shoved into the bloodstream. Dont panic if you see that.



http://www.diabetesselfmanagement.com/article.cfm?aid=388

Although they state it is most likely in the morning - I have seen it happen to Matt when he has had lows near 2.2 - 2.8



Glad I can be of help and support

Sandy
PS - my son made a dartboard out of corkboard, its fun distraction for any needles that hurt or if he is just having a day where he wishes he didnt have to take needles. He made a bullseye and tries to hit it with the needle when he's done. We found out its better if its on the floor and he drops it from above - needles dont make good darts for the walls!
You can also cut out pictures and try and hit the face (Yikes)

I love that idea. I think you've inspired me to make that for Alex's upcoming birthday. I think a picture of wheat on the bullseye would be fun! Some times the needles go well and some times they take a bit of anger and swearing to get through. Getting to throw the needle at something after would be very therapeutic for her I think.
Thanks again for all the great info. We have been finding her blood sugar does dip in the middle of the night and she usually wakes up with a nightsweat. We will definitely be vigilant about possible highs the next morning due to that.

Ryan

She is lucky to have someone so supportive. At such a young age you both have a lot ot deal with. Good luck