Endocrinology anyone? Low Glucose - What do you make of this...
September 28, 2012 10:38 AM   Subscribe

YANMD - I just discovered from 2 recent bloodworks that my 15 year old son’s non-fasting glucose levels are in the mid-60’s after eating what could be considered a “carb bombs” – cake, hot chocolate among other carby things. Is this some rare condition that no one has heard of? Something like the opposite of diabetes? Or does this mean nothing at all?

Background - For years we have been on this medical odyssey. He’s been complaining of headaches since first grade. The headaches were probably there prior to then but he was unable to accurately express it. He originally stated it was eye pain. He has been dealing with stomach discomfort/gas since birth. We’ve been all over, multiple specialists in neurology, gastroenterology, endocrinology, ophthalmology, etc etc etc... at four major medical centers in the eastern PA area. No one is connecting the dots.

The last neurologist stated flat out that this is not migraine headaches and referred us to GI. GI doc was like “Idunno...” and at the second visit stated flat out that “no one at (their HUGE medical center) seems to have an interest in carbohydrate metabolism”. We were once again dead in the water...

It’s definitely food related, primarily around processed foods that contain Corn Starch, Maltodextrine, most fruit juices, among others. This stuff will cloud him up, can get emotional, attitudinal, wanting “stuff” to the point of not letting it go, and if it’s enough of a hit he’ll get a headache that will lay him flat. The biggest hits have him seriously throwing up. (those episodes are only relatively recent, the first of which ended up in the ER resolving on its own without a medical cause found by ER docs)

Advil Gel Caps have been the medicine of choice and resolves the problem. (interestingly, regular Advil does not work, we suspect, due to the microcrystalline cellulose used as a filler)

We finally found a sympathetic GI doctor at a major medical center in NYC. All of her testing was negative. While doing bloodwork when trying to provoke a reaction looking for metabolism oddities, we discovered that after eating, his non-fasting glucose level is low – mid 60’s. (fasting glucose levels have been always normal) She has now referred us to a colleague in endocrinology.

Question – does this look like hypoglycemia to you? Is his body overcompensating for the carbs/sugars he is consuming, essentially crashing his glucose levels to the point of hypoglycemia? Is this some wildly rare condition that the medical community is not aware of? It kinda looks like the exact opposite of diabetes.

He is otherwise healthy, looks/sounds good (especially when he is eating "clean") but at this point overweight (5’8” 180 lbs) probably because he’s craving carbs from low blood sugar.

I’m posing this question because we are continually getting shot down by presumably high-level major league doctors. We are basically left to do our own research. We noticed/questioned the low glucose levels ourselves. Our appt with endo doc in NYC is coming up in a couple weeks based on this new evidence. Are we on to something here or is this yet another red herring?

Can anyone offer any thoughts on this? Has anyone ever heard of this? We are genuinely afraid of getting shot down yet again.
posted by jamesalbert to Health & Fitness (21 answers total) 12 users marked this as a favorite
IANAD but it sounds to me like reactive hypoglycemia.

I have this to a very mild degree, where eating sugar bomb-type food makes me sleepy and cranky. I can avoid bad symptoms almost entirely with 15-20 minutes of moderate exercise IMMEDIATELY following eating, like "put down the fork and head out the door" immediately. No clue whether that's helpful to you, but if these symptoms are really wrecking his life and you aren't already doing this, you might give it a try.
posted by KathrynT at 11:01 AM on September 28, 2012 [2 favorites]

I can't speak to what's going on but if you want to gather more data you can buy a blood glucose meter for twenty bucks at any pharmacy and take readings as frequently as you want.
posted by XMLicious at 11:11 AM on September 28, 2012 [6 favorites]

Have you investigated the migraine possibility, beyond the last neuro dismissed the idea? i.e. was that the end of a long consideration that it was migraines? Has he tried triptan meds during a headache, to see if it works? Because honestly, after doing extensive research into migraines, that's what it sounds like. They come in very strange forms for some people and many doctors think tons of migraines are misdiagnosed or undiagnosed.

I just started reading the Migraine Brain, and while it's pop science in tone, it's written by Carolyn Bernstein, one of the top migraine/headache researchers in the US. Worth picking up to see if her descriptions and explanations have any connection to your son's issues.
posted by barnone at 11:31 AM on September 28, 2012

More info on reactive hypoglycemia, including some possible causes.
posted by barnone at 11:38 AM on September 28, 2012

Have you done a proper elimination diet? Where you re-introduce one food type at a time, and watch for symptoms? Then go back to the elimination diet, then re-introduce another ingredient?
posted by barnone at 11:42 AM on September 28, 2012

Just a tip, if you do get a glucometer -- go for a store brand (Target, some grocery stores, etc.) that has the cheapest strips. All the meters are cheap, but the strips are where they get you. I had a brand name monitor and needed new strips, and it turned out I could get a new Target meter and twice as many strips for the same price or even cheaper, so I switched over.
posted by katemonster at 11:46 AM on September 28, 2012 [5 favorites]

Response by poster: Yes, reactive hypoglycemia seems to fit the bill. I'm having a difficult time believing that after all these years no one picked up on it. That was the primary diagnosis that I am banking on with this endo doc.

I had read somewhere that glucose meters aren't very accurate below 70. Not sure how valid that is but that was another question for endo doc.

Regarding "migraines", we've been around the block multiple times with 4 or 5 neurologists at 3 different medical centers. The last neuro doc (dept head) said "atypical migraine" and that the characteristics, severity and frequency (once a week typically, no light sensitivity, resolved with advil) would not warrant further intervention from them.

We've done a fairly decent amount of elimination, focusing on CF/GF diets. Interestingly he got sicker on that diet which led us down the path of fructose and corn products and legumes being problematic.

Of course, I'm not discounting *anything*. Especially if the new endo doc comes up blank.

Exercise has come up on the radar to help this... I have to go now. He just called from the bus sick..... brb
posted by jamesalbert at 12:07 PM on September 28, 2012

I've got this too. I also had horrible migranes as an adolecent and young adult. I find that Excedrine helps the fastest and the most. It's packaged in all different "formulas" but it's the worst kept secret in marketing, every single bottle has the same ingredients, Asprin, Acetominophen and caffiene.

Sugar exacerbates the problem, especially in the fuzzy headed thinking department.

It really, really helps to avoid carbs/sugar, and fats and protein and veggies and nice fiberous fruits are great!

There are hormone components and as I got older and my body settled into a more regular hormone release program a lot of my symptoms abated. But I was a mess between the ages of 11 and 21.
posted by Ruthless Bunny at 12:13 PM on September 28, 2012

I had read somewhere that glucose meters aren't very accurate below 70.

Even if they aren't, it would still confirm or deny your suspicion that he has unusually low blood sugar levels when he's feeling bad and also show you whether it's just when he's feeling bad or all the time.
posted by XMLicious at 1:12 PM on September 28, 2012 [1 favorite]

I wouldn't be too hard on your prior physicians. If it actually is reactive hypoglycemia, having headaches and mood changes alone are pretty nonspecific and not typical symptoms of hypoglycemia either - without the low blood sugars on the labs this doesn't sound like a diagnosis that would come to mind. Headaches that are pretty severe with vomiting are certainly more typical of migraines.
posted by treehorn+bunny at 1:26 PM on September 28, 2012 [1 favorite]

This sounds a lot like what I had in my second pregnancy. I got a 69 on a pregnancy glucose challenge, and had a hell of a time convincing my ob/gyn that was a problem, because the test was only meant to measure gestational diabetes, so as far as they were concerned, under 200 was just fine.

Meanwhile, I was having symptoms of being foggy-headed, irritable, headachy, constantly starving. Eating would fix the problem for about fifteen minutes, and then I'd be back to feeling like a zombie. It was so bad that it wasn't until that baby was nearly a year old that I could talk about how awful it felt without actually tearing up at the memory.

It was in fact reactive hypoglycemia. Once identified, it was at least very easy to treat. They put me on a diet that was close to all meat all the time -- fats and protein every time I ate, and neither dairy nor legumes counted as a protein for this purpose.

Note also that my daughter has had problems with recurring stomach aches, and via elimination diet, we've figured out she has a fructose intolerance. She does much better without honey, dried fruit, smoothies or juices, and only very, very limited amounts of fruit.

Good luck to you. It can be so frustrating to get a diagnosis -- I think sometimes you're better off doing a little trial and error yourself, because it can be nigh on impossible to get a doctor to actively advocate for you. Even worse when it's your child suffering, and not you.
posted by Andrhia at 1:56 PM on September 28, 2012 [1 favorite]

In my experience it can be hard to get doctors to take diet-based problems seriously. I agree with others that combining a glucose meter with your own experimentation with elimination diets is your best bet. At the very least, a notebook with a record of everything he eats plus glucose levels and how he felt an hour after breakfast/lunch/dinner each day will give you and your doctor more ammo at your next appointment.

They put me on a diet that was close to all meat all the time -- fats and protein every time I ate, and neither dairy nor legumes counted as a protein for this purpose.

This is the first thing I would try, given the triggers you mentioned. Meat and (non-starchy -- corn and potatoes are out) veggies only; avoid packaged foods. Water or unsweetened iced tea to drink. It can be a little tough when you're out to eat, but not too much so... you can get salad, an eggs/bacon breakfast, or a burger without the bun almost anywhere. If this diet helps, he can try to add in things like dairy, nuts, and fruit again. Make sure he gets plenty of fat -- in the absence of carbs, fat is the body's primary energy source, so fatty foods will help cut down the carb cravings.
posted by vorfeed at 3:42 PM on September 28, 2012

Response by poster: So.... he called me from the bus sounding awful. He wasn’t supposed to be on the bus. He was supposed to stay with friends until the football game tonight. I was expecting a train wreck to come off the bus. Well.... the reason he came home was because his phone battery was almost dead and he needed to recharge it before the game. Argh!!...(sound of my head banging on a brick wall – this stuff is making me punchy...) But I digress.....

“Even if (glucose meters aren’t accurate), it would still confirm or deny your suspicion...”

A very, very good point, thank you. Even if it is off, it certainly shouldn’t be off by a huge amount. I think I am going to take a run to Target tonight ($8.99 woohoo!) and pick one up. And do it on myself first. I’ve always had this nagging feeling about myself.....

“I wouldn't be too hard on your prior physicians”

Yea, I know... The symptom list could add up to just about anything. Unfortunately, more than a few docs were very dismissive and/or condescending and/or pushing their own agenda pretty hard. There was a DAN doc along the way that pushed hard on the GF/CF diet and food in general. That doc was a dead end for us but we did learn a lot and started to narrow down what exactly the triggers really were. No one, not even the previous endo docs, suggested doing non-fasting labs.

The idea of a heavy protein/fat diet is something we were seriously starting to look at. My son’s diet is in fact very carby. (oh and BTW he did test positive for Fructose intolerance, negative on Lactose) We are just waiting for this new endo doc appt to see if we can have some sort of medical support to help guide or at least follow what we are doing. We basically have no one now.

Are there any good sources of information on the web (before I delve into Google yet again) on high protein diets?
posted by jamesalbert at 5:25 PM on September 28, 2012

I've had something akin to this since forever. Asked my Docs about hypoglycemia and insulin resistance, but they just shrug it off and say that stuff doesn't happen unless you're a true diabetic. A couple of my friends have it and get the migraine thing if they don't eat protein first thing in the day, don't eat breakfast, or eat on time. I got crashes late in the morning and felt like crap. If I didn't eat on time, I felt like crap.(no migraines thank God) So I just learned to deal with it by NOT eating any sugar products in the mornings. I eat protein first and foremost. No pancakes, waffles, or cereal for breakfast. If there's toast or bagels they have to have peanut butter, cheese or cream cheese. Another thing I did was check for high glycemic(sp?) index foods. Almonds, peaches, and even canned peaches are high on the list and they really last me a good part of the morning. Later in the day it doesn't seem to be as much of a problem so if I need pancakes or cereal I have them for supper. lol Its no biggie, you just have to know your body and know what you need.
posted by PJMoore at 6:08 PM on September 28, 2012

There are lots of resources for low-carb high-protein diets. One of the popular ones right now is nicknamed "Paleo" -- no refined grains at all. Some of the Paleo talk is a bit over the top, but there are some good recipes and it might help with the search. Lots of folks feel TONS better on low-carb high-protein diets. I'd try it for a month and see what happens.

Here's a intro book on reactive hypoglycemia.
posted by barnone at 8:57 PM on September 28, 2012 [1 favorite]

I have the same issue, along with slightly elevated fasting glucose. My doctor told me that these sorts of low blood sugars show evidence of blood sugar dysregulation. He said that in his experience, most people who have hypoglycemic episodes eventually develop diabetes.

So, even though there might be different issues at play, it would probably be prudent for your son to follow a diabetes diet, which limits carbohydrates and regulates portions eaten at one time, spreading them throughout the day. Also important to eat high quality, healthy foods that are close to their natural state. A nutritionist can help with that. Exercise is also important.

The good thing about the above approach is that this is a good healthy plan for anyone to follow, whether someone is particularly at risk for diabetes or not.
posted by mintchip at 9:37 PM on September 28, 2012 [2 favorites]

Fructose malabsorption can cause reactive hypoglycemia so you should look more into that connection. You should also look up FODMAP foods as there is a group of foods that can cause problems for some types of fructose intolerant people to see if he reacts to those as well. But basically if he has been eating foods that he is intolerant to, his gut will become irritated and much more reactive to other potential irritants such as gluten and casein in addition to the fructose containing foods.

You should look into the paleo diet and especially to versions of that focused on autoimmune/gut healing and low carbohydrate. You'll want to focus on healthy fats, quality proteins and well tolerated vegetables. With healing diets it is often best to go very strict for at least a few months, then things can potentially be tried for reintroduction once he is on an even keel.

The lucky thing for your situation is that paleo is getting quite popular and there are lots of websites and books available. Lots of people come to paleo due to food intolerances so there is lots of anecdotal data as well. I'd suggest starting out with Mark's Daily Apple and Chris Kresser's site.

Best of luck with your endo but even if you don't find resolution there at least you have some new avenues to pursue and the search terms to do it with.
posted by tinamonster at 3:58 AM on September 29, 2012 [23 favorites]

Carb/sugar heavy diets deplete magnesium and low magnesium can trigger migraines. Reduce carbs, go heavy on veg with a decent helping of meat (not beans or legumes) and supplement with magnesium. Your son should balance out soon.
posted by Feisty at 8:00 AM on September 29, 2012

Nthing Mark's Daily Apple...my dad and I both have a type of reactive hypo that can really crank on the emotions, cause brain fog, and bring on blistering headaches. For us, Paleo diets have worked wonders.

Best of luck to you and your son. I've been in that medical no-man's-land before, including the obligatory dismissive/agenda-driven docs. Unfortunately, in my (limited) experience that treatment seems to be the norm these days, even in renowned medical establishments. Keep pushing till you find a doctor who is receptive.
posted by Kibby at 9:08 PM on September 29, 2012

My husband's a type 1 (insulin dependent) diabetic. The glucose meters are still pretty accurate below 70. They have to be, since diabetics need to calculate how many carbs to eat to bring their blood sugar up during a low blood sugar episode.

If you're looking at sugar issues, you'll probably want to follow the same regimen a Type 1 diabetic follows:

- test fasting level BG 1st thing upon waking
- test before eating
- test 2 hours after eating

The standard recommendation is to keep a food log, and track the blood sugar readings and any other information (mood, stress levels, amount of sleep the night before, illness) that might affect sugar readings. There are ready made logs out there, but you can also just use a spiral notebook.

I'm surprised no one thought 60 was a low reading. That's low territory for a diabetic - that's when they start eating carbs to bring the blood glucose levels up.

Good luck.
posted by RogueTech at 11:50 PM on September 29, 2012

Response by poster: Hi all, just a followup on this thread, especially for those who happen upon it doing their own research....

The mid-60's glucose was considered a non-event with the endo doc. A GI scope/biopsy was performed - all negative.

So we are back on our own. After years of specialist doc visits and research (PA/NJ/NY area), no one in the medical community is taking ownership of this or can identify what is going on. We are basically back on our own.

We have recently found a medical advocacy group that we are consulting with to act as our representative (we are exhausted) with finishing up the last endo and GI doc and with two final (niche) specialists that we are pursuing.

Beyond that, we are dead in the water. Currently, the only solution for my son is to avoid the offending foods as best as possible and take Advil Gelcaps when he can't. I will continue to review this thread to experiment with the suggestions posted here. Thanks all for your input.
posted by jamesalbert at 11:10 AM on January 12, 2013

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