Hypoglycemia aka Sugar Shakes

[colormist]

On Saturday I went grocery shopping. I found some new foods that read safe and was excited to possibly expand my safe food collection. One item was dill pickle spears from the Pittsburgh Pickle Company. The ingredients are: Cucumber, vinegar, water, salt, garlic, dill. I had one pickle spear and went about my day. No symptoms on Saturday and I was able to exercise.

On Sunday, I wake up and am starving. I eat toast, drink coffee, and head outside to trim back the trees around my mailbox. I come inside, grab my drink (iced tea) in my right hand and this happens: fructose-free.tumblr.com/post/172962320205/this-is-happening-today-im-hoping-its-just-low

Left hand, nothing. Right hand, violent shaking (I'm right-handed). My right hand is fine at rest, but as soon as I try to hold anything or make a fist, the shakes set in. The harder I flex my muscles, the worse the shakes get. This is a pretty severe instance for me. Usually my hand just trembles when I try to hold it flat--it was doing that as well. Both my arms felt weak all day long--like I had been holding my arm up in the air for a really long time and then let it rest. They were just exhausted.

I spent the rest of the day just taking it easy, drinking lots of milk, and eating super-safe foods. I felt incredibly tired all day long, but today I'm feeling better. No shaking at all. Still have some weakness in my arms, but it's better today than yesterday.

I took the video because I wanted to share what's going on. I mean, this is pretty much our only visible symptom for HFIers and it's the easiest thing for parents of HFIers to notice when things are starting to take a turn for the worse.

I shared the video on facebook and was really surprised to see the responses from non-HFI families. I had several people telling me to go to the doctor/emergency room asap. (OMG, if I went to the ER every time I started shaking, I would be homeless from the insurmountable debt.) I know that most of my friends know I can't eat sugar, but they don't really understand the repercussions because so much is unseen. All this from one pickle spear that had all safe ingredients listed on the label.

[antonia]

Thanks for sharing. I've never seen Palmera shake like this but have felt for a long time that her reactions can be delayed. She often seems off the following day of a new or iffy food or even after a lot of exercise. I pay attention to the way she feels when she wakes up in the morning and her level of hunger.

Feel better and wishing you better luck with the new foods!

I'm curious about the garlic. Has it not been a problem in other pickles?

[colormist]

Yeah, exercise seems to greatly exacerbate hypoglycemia. Today my right arm is achy. I presume I was using it the most for leverage in chopping through the branches. I was only outside for a half hour, but that was enough to make things much worse.

Exercise also seems to speed up hypoglycemia reaction--much like getting bit by a venomous snake. Stay still and you'll make it longer than if you're up and active.

I tend to tolerate garlic okay so long as I don't use a lot of it. I think the garlic + undercooked cucumber + dill was enough. Another instance of things piling up that would be okay alone. My sister was trying to get me to try Kroger brand ranch oyster crackers, but they had tomato powder, garlic powder and onion powder. It's just too much to risk.

[rysmom14]

colormist, I hope you are doing better. That's awfully scary. Im glad you took it easy after that and made your you were on the mend.

Thanks for sharing, because you're right, the low blood sugar is hard to spot and is hard to bring up because you cant use traditional foods to spike it. There are just so many unknowns with HFI, if things were black and white and people choose not to follow it then you would expect a negative outcome, but the things that can be safe sometimes, but not other times because of external factors like exercise make this such a hard condition to manage.

[colormist]

On my facebook post, I keep having people suggest I eat protein. The problem is, ready-to-eat proteins have sugars in them and I do not have the energy to cook a 100%-safe chicken breast or a hamburger at that point. Last time I tried to cook when I was hypoglycemic, I put my hand on a burner I had JUST TURNED OFF and then (not 30 seconds later) grabbed a pan out of the oven with my bare hand. My danger-alert system only kicked in after I put myself in harms way.

Also, safe proteins are flipping expensive and I don't have that kind of budget to be able to eat protein every 4 hours.

Milk, cheese, and crackers will have to do. I suppose I could start keeping a stock of yogurt in the fridge, but I really do not enjoy eating plain yogurt...

And, honestly, I really don't expect protein to help all that much considering I had just ate 20 minutes prior.

[Mimi]

If it were me, I'd more likely have hypoglycemia from the toast and coffee + exercise than from eating a dill pickle the day before. I need lots of protein and fat for breakfast. The only times I've gone hypo in the morning were when I had coffee (with milk) and plain bagel before walking a few blocks from a hotel to a breakfast restaurant. By the time I got there, I had to put my head on the table and could barely force myself to eat.

[colormist]

I can't handle heavy foods in the morning. They upset my digestive track something fierce. Even eggs are too much. The most I'm ever able to handle is something from the grain family (oats, cereal, waffles). I do usually have to eat something more substantial a few hours later. It definitely doesn't tide me over for the long haul, but that's what my lunch is for.

I have yet to find a bagel that doesn't have sugars in it. I did recently find a bagel recipe without sugar, so I'm super-stoked to try that this weekend!

[gerri]

Colormist, can you provide that bagel recipe that is sugar free. Thanks

[hfimomof3]

I'm going to blame the cucumber here. I can taste the sweet in it and pickle is made from cucumber so I think it's a reasonable guess.

[colormist]

I think maybe the longer a cucumber is cooked to make a pickle (the cheaper generic pickles) the more fructose it loses. Those "fresh" pickles always make me a little iffy. I'm not certain what kind of vinegar they used either! Just gotta steer clear of white pickles from now on.

[jenn123]

For ready to eat protein, i get London broil cut of beef and then make jerky with nothing in it. I store in refrigerator and it is our protein go to for my child to get on her own. She keeps a small bag on her for when she is at gymnastics or school.
Also, not sure what your water consumption was other than coffee and tea. Both of those will dehydrate and my child always has reaction when she is even slightly dehydrated.

[rysmom14]

I work in the hospital setting and was mentioning the low blood sugar bit to my friend for coordinates the EMS services and is an RN himself. he said that on the ambulances, they carry D50, which is 50% dextrose and 50% water. This is the bags that they would give as an IV via transport to the hospital. he was kinda thinking outside the box and wondered if I could get a hold of some of this and give it orally. since it is 50% dextrose, it is much higher more safe sugar concentration then milk and even pedialyte. rationally that makes sense to me, so I called a pharmacist friend and asked if this is even something that could be done. She said she needed to speak to Ryan geneticist, before she could help facilitate things for me.

Of course I called and spoke with the Dr. and she about hit the roof and told be absolutely not. I can see where she is coming from, because IV meds aren't ment to be given orally, and I am sure there are no studies or protocols done to know how much to give, ect, but it sure would be helpful in those situations where you need to get your sugar up quick.

I am not letting go of the thought just yet. the next time we have an appointment, I am going to bring it up again and have her explain to me why it cant be done.

Bringing up your sugar without drinking a big glass of OJ and eating PB crackers is really hard and takes a long time.  it would be nice to have the same amount of safe sugar as is in the OJ for non HFIers/ regular diabetics.  plus when you feel like crap the last thing you want to do is eat, so a safe dextrose solution is a win win in my book  

[antonia]

I was really shocked to learn (when I first started learning about HFI) that there was no such thing as a pharmaceutical grade dextrose. I wonder if we all started contacting the FDA and started requesting it for people with HFI if it would make a difference. Or if there is some other medical organization that we could write to expressing the need for it.

Currently I carry around tapioca dextrose powder because I think it may be more pure than that made from corn. No proof, of course, just my hunch given all the cross contamination that probably occurs with corn based products that's manufactured in the same plants as those making HFCS.

[ukbill]

My research into how they make Glucose and Dextrose seems to indicate that absolutely no attempt is made to remove the fructose or Sucrose that is present in the base stock before the process and no process is used post manufacture to remove the contaminating sugars.

I believe the "Gold Standard" is Japanese Dextrose and Glucose which is made from Rice which is far lower in residual Fructose than just about any grain / starch.

I would hope they have de hulled and de-germed the rice 1st because this is where the Fructose resides in the gains the main bulk of the grain is long chain glucose molecules (starch)

[Stefanie (Ziba)]

Colormist, I watched your video. So sorry you went through that!

Isn't it amazing how even with the same condition, everyone on this board has different reactions to the "maybes" on the safe lists? Clearly, there are some foods that are out for everyone, but when it comes to garlic, olives, baked goods, corn products, and especially when it comes to ratios of protein, carbs and fats, each person on here seems unique. We learn so much from each other, but there is also the reminder that not everything is clear cut and we have to watch for individual reactions above all else.

That said, uncontaminated dextrose would be incredible. For now, I suppose we have to hope that the benefit of taking dextrose/glucose in powder or IV form in a real crisis would outweigh the risk?

[colormist]

I know Smarties are contaminated (natural flavors alone) but I will still eat them if my sugar starts to drop and I'm away from home. They tide me over for 15-30 minutes until I can get to real food--so long as I'm not doing anything strenuous.

What I would give for some safe glucose, though!

[antonia]

Colormist, just an FYI, there is a Canadian company called Concord that makes dextrose candy with just the old fashioned, artificial flavors, no natural. Also, since made in Canada maybe the dextrose is derived from something other than corn. It's like the sweet tart candy they used to put in coin, candy machines when I was a kid. (Probably aging myself quite a bit here.) Anyway, Palmera has gone hypo off pixie stix candy before (never tried smarties after that experience) but doesn't seem to feel any effect after eating the Concord candy. Other than the general sugar swing that is really not good for her, but she doesn't go hypo. They also make Lego dextrose candy.

[antonia]

Also, for an easy and cheap protein source, I always make up a whole pound of ground meat just for Palmera at least once a week. Pork, beef, chicken or turkey I make into little, slider sized patties, fry them up and refrigerate or freeze for later. Then I can pop them in the microwave throughout the week. Sometimes I don't even take the time to make patties, I just fry up loose, ground meat. Go me! Then I try to have premade rice or pasta and grated cheese on hand too. For a quick meal I mix together the ground meat with the rice or pasta, heat it in the microwave and stir in some cheese. Palmera calls this a "burger bowl". She definitely does better when we balance her snacks and meals with plenty of protein and fat. I try not to do carbs alone, but she's the same way in the morning, she won't eat heavy foods. She usually has a piece of toast to start, then an hour or two later she'll eat a large breakfast or brunch.

[Stefanie (Ziba)]

Antonia,

I did a google search for the Canadian candy manufacturer, and the website for purchase is bulkcandystore.com. Is that where you purchase the candy (it says it is a Canadian company on the website, but the lego candy is Made in the USA)?

[gerri]

Hi Antonia,

Bulkcandystore.com shows when I search the company show it is 100% in USA, and not Canadian. Address is out of Palm Beach, FL