Diagnosis...

[Ox on the Roof]

Well, guys, it looks like gluten wasn't the main problem. I had a 6-hour glucose tolerance test run, and the results showed that I have Reactive Hypoglycemia. Basically, my insulin doesn't know when to stop. I don't know if this is an isolated problem, or if this, combined with the vitamin deficiencies, are a result of some overarching problem. But at least I can figure out a way to stop shaking in the mornings. Going gluten-free helped somewhat because I reduced my carb intake.

My test results (if anyone cares):

Baseline, fasting: 74 (reference range 65-100)

After which I downed 100 g of glucose drink

One hour: 88 (60-110)

Two hours: 78 (120-200)...when the glucose should have hit, I was going DOWN

Three hours: 61 (60-140)

Four hours: 48 (60-110)...the doctor said most people pass out when they get this low

Five hours: 65 (60-110)

Six hours: 74 (60-110)

So that's that. I'm officially off the gluten-free diet, although I'll pretty much be gluten-free anyhow because I can't have a lot of carbs unless paired with lots of proteins. I have to meet with a dietician because I have NO idea what to eat anymore.

I also wanted to thank all of you who have helped me navigate the diet these past two months. You have all been encouraging.

Jenny

[kareng]

You could be an honorary Celiac.

Glad you know something and can make a plan of attack!

[Skylark]

Wow! I'm glad you figured out your trouble. I hope the dietitian is helpful and good luck with the new diet. You probably can't eat a whole one, but have a bite of a really fresh, flaky croissant for me, will ya?

[starrytrekchic]

Wait, I'm confused... Why did you suspect celiac at first? Reactive hypoglycemia was one of the things that cleared up for me when I went gluten free--but the symptoms aren't like a glutening. I'm curious what (all) your symptoms are that led you here.

[missy'smom]

Wow, that is interesting. Mine went just the opposite way LOL, if you don't mind my comments. I'm interested in data relating to blood sugar. Helps me understand the body more.

I hope you have a meter and will test regularly just like someone with diabetes. Getting lots of data will help you see how your meals affect you and help you make decisions. Keep charts, recording meal contents and BG readings to help you see patterns. I would invite you to keep an open mind and consider doing a low-carb trial-lots of protein and fats and see if that helps keep your BG stable. I don't officially have hypoglycemia DX but my BG can go low- I can be anywhere from 65 to 300 depending on what I eat. But I seem to have fewer lows and highs, stable BG overall with a low-carb diet. I buy low-dose glucose tablets(1.66g each) over the internet to help correct lows. It's more predictable than drinking juice or fruit, candy etc. and keeps me from over shooting, which would take me high and possibly take you lower.

Glad you found another piece of the puzzle. Good for you for getting tested. Best wishes on this new journey.

[missy'smom]

I follow Dr. Bernstein and he considers 83 a perfectly normal blood sugar. I just say that because IMHO the upper limits of ADA reference ranges are too high, they would indicate diabetes. Just to give you some perspective. Be sure to ask for enough strips to test at least 4 times a day, maybe more given the number of below target numbers you had. Docs often recommend testing fewer times but if you ask for more, they should oblige. In time you should find a good balance and then be able to test less often but it would be good to always have a meter in case you feel low, so that you can check and correct and be safe.

[georgie]

I have Reactive HypoGlycemia ( 5 hour GTT) and Coeliac. What makes you think you no longer have Coeliac? You may also want to check for Adrenal Insufficiency. Your Primary Care Dr can run a fasting 8am cortisol test and you can order your own saliva tests - although many Drs do not recognise these. RH can be mistaken for low adrenal function. My AI dx came 2 years after the RH dx. It was and still is low cortisol for me.

[jerseyangel]

Best of luck with it, Jenny. Glad you found your answer

[mushroom]

Glad that you got the diagnosis, Jenny. Just a word of caution - I think I would reintroduce gluten very gradually, just on the off-chance that it is also a problem for you

[Ox on the Roof]

Thanks, everyone!

Starry, to make a VERY long story short, my symptoms were all gastro (belching, nausea, bulky BM) and neuro (shaking, panic-attack-like symptoms early on, numbness in my fingers and feeling like they were twisted, depression). There's a bunch more, but I'll keep it short.

I tested negative for Celiac antibodies twice, a year apart. But after visiting this site to confirm the test results, I was told to try the diet anyhow. It seemed to help somewhat.

And now...

I ate gluten yesterday and I am belching my head off today!!!

I think with vitamin D and B12 deficiency, lactose intolerance (getting tested for that to confirm this week, but I already know the answer), and reactive hypoglycemia...and now being sick after eating a burrito yesterday...I am going to stay gluten-free a little longer and talk this over some more with my doctor.

But at least finding out all the little stuff should make me feel a bit better. (Trying to keep my chin up here.)

[Dr. Keiser]

This is great news for you! I obviously don't know everything about your case, but I would still be a little hesitant about some of your eating patterns though (especially with the symptoms after the burrito:) Like Georgie said, RH is usually associated with a constellation of other findings including AI. While eating a clean vegetable and protein based diet will go a long way, you might find some value in checking for yeast, GI infections, molds and heavy metals as these can often be root causes that will hinder your healthy recovery. Good luck and keep learning!

[starrytrekchic]

  On 1/24/2011 at 6:53 PM, Ox on the Roof said:

Thanks, everyone!

Starry, to make a VERY long story short, my symptoms were all gastro (belching, nausea, bulky BM) and neuro (shaking, panic-attack-like symptoms early on, numbness in my fingers and feeling like they were twisted, depression). There's a bunch more, but I'll keep it short.

Have you had an endoscopy to check for problems with your stomach? As well as bacterial overgrowth there (h pylori)? That would be my next step.

I had RH when I was eating gluten. I'd eat something like a sandwich, and 2 hours later I'd be starving, literally shaking with hunger, confused, disoriented, wobbly, and feeling like I hadn't eaten in weeks. It took a few months gluten free for this to clear up, and it's only happened once since (in a year+ gluten free.) I think in my case (as I understand it), it was that my stomach/intestines tried to get rid of the food too quickly, which meant my pancreas released more insulin than was necessary for the amount of sugar I absorbed. It was always worse during certain times of the month (around ovulation) when my hormones were in flux.

So if I were you, I'd stay gluten free ~6 months or so & see if that clears up or at least reduces the number of times this happens.

[Ox on the Roof]

Hello from Memphis, Dr. Keiser. This has been an almost two-year process for me and I went gluten-free because I wasn't sure what else to try. I've been gluten-free for two months until yesterday. The only reason I ate the burrito wrapper (okay, and a bun, I'll admit it!) was because with the lactose intolerance and reactive hypoglycemia, there wasn't much left to eat! I figured that maybe the RH was the only problem, after all, so I'd try some gluten. But it seems there is something overarching here; if not gluten, then SOMETHING.

Starry, they did an endoscopy when I first got sick, but they only checked for GERD! They took a biopsy of my esophagus only. So I'm always on the fence - were the negative IgGs and IgA's correct? Or false negatives? Am I gluten intolerant but gluten is sneaking in somewhere? Or is it something else? Or a combination?

It's hard, being a super-sleuth.

I know for sure that I've been tested for heavy metals and H. Plyori, among a myriad of other things.

Okay, that burrito and hamburger were good. Climbing back on the wagon. Sigh.

[ravenwoodglass]

  On 1/24/2011 at 8:49 PM, Ox on the Roof said:

Hello from Memphis, Dr. Keiser. This has been an almost two-year process for me and I went gluten-free because I wasn't sure what else to try. I've been gluten-free for two months until yesterday. The only reason I ate the burrito wrapper (okay, and a bun, I'll admit it!) was because with the lactose intolerance and reactive hypoglycemia, there wasn't much left to eat! I figured that maybe the RH was the only problem, after all, so I'd try some gluten. But it seems there is something overarching here; if not gluten, then SOMETHING.

Starry, they did an endoscopy when I first got sick, but they only checked for GERD! They took a biopsy of my esophagus only. So I'm always on the fence - were the negative IgGs and IgA's correct? Or false negatives? Am I gluten intolerant but gluten is sneaking in somewhere? Or is it something else? Or a combination?

It's hard, being a super-sleuth.

I know for sure that I've been tested for heavy metals and H. Plyori, among a myriad of other things.

Okay, that burrito and hamburger were good. Climbing back on the wagon. Sigh.

Some of us will have false negatives on blood work. I am one of them and it delayed my diagnosis for a very, very long time. Glad to hear your getting back on the diet and do be very strict with it and watch out for cross contamination. By the by can't say it will be the case for you but my BS issues were directly related to gluten.

[Dr. Keiser]

Memphis! nice! I hope you guys have been having fun in the snow lately too Glad to see you back on the wagon, with RH it takes a little while to get your pancreas and insulin receptors in your cells to get back on the same page. Be patient. While getting back to gluten-free, if you really want to tackle the RH it will be very important for you to do a couple things:

1. Eat breakfast-I don't know where you stand on this now, but it is an absolute MUST.

2. Make sure you are getting protein and fiber EVERY time you eat. When I say fiber I mean something that is a vegetable. This will actually slow absorption to a degree and make it so your insulin levels are more stable

3. Eat one of these small protein meals every 2-3 hours. Set your alarm if you must! Keep in mind this doesn't mean a full-on meal. It can be a few almonds and some celery if you want. The point is teaching your system to get back in rhythm and have a normal glycemic response.

I've seen a lot of people make some great changes, and you're going to do great! The fact that you are here and living your experience speaks volumes.

[Ox on the Roof]

Ravenwood - The first day I came to this forum, I saw your signature immediately noticed the false negatives. That is what made me decide to try gluten-free, even with the negative blood tests. So if it turns out that I am Celiac, and I get all better, you will be the first one that I thank! This made me do a double-take:

  Quote

By the by can't say it will be the case for you but my BS issues were directly related to gluten.

My BS issues are probably not related to gluten, although I'd love to have something to blame it on. (It took me a few minutes to realize that you meant BLOOD SUGAR!)

Doc - Yep, it is supposed to roll in again today! Then SUNSHINE for a few days, which I am much looking forward to. I am eating breakfast and have vamped up the protein since the RH diagnosis. This morning, for example, I had an egg, bacon, and some gluten-free granola (low-sugar). Of course, I'll probably end up with cholesterol levels out the roof! I do like veggies, so that's no problem. And this week I've been snacking on jerky and almonds throughout the day.

Again, thanks for the advice and encouragement. This is a great forum.

[missy'smom]

  On 1/25/2011 at 6:03 PM, Ox on the Roof said:

This morning, for example, I had an egg, bacon, and some gluten-free granola (low-sugar). Of course, I'll probably end up with cholesterol levels out the roof!

Not necessarily. I snack on bacon all day long and eat it every morning and my cholesterol is perfect! Doc gave me the green light for eating as much as I like! I even bought myself an I love bacon T-shirt as my little low-carb joke-I wanted to get the "powered by bacon" one when I was strugling to gain weight back. The fat itself is not the problem with health so much as the fat, high carb combo. Certainly the transfats are bad news. There are a few exceptions, some folks seem to have cholestrol issues despite a good diet, hereditary, my brother-in law seems to be that way.

Many folks on the low-carb diabetes board also say their cholesterol improved. It has something to do with the whole insulin/carb thing. Even my son's pediatrician said to keep the carbs under control when my son's cholesterol was elevated, I was quite suprized to hear him say that, it's pretty progressive, up to date thinking.