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Crazy? Or Actually Gluten Intolerant?

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I'm really getting frustrated / confused with my docs, so I'm looking for advice from folks that I figure should be in-the-know... and apologies in advance for the long post. I'll do my best to be succinct.

I'm 32 years old, 140 lbs. In HS and college I slept frequently in class. I never thought anything of it, I thought it was normal. But when I started working, I found that it would be literally impossible to stay awake in meetings, after lunch, etc. I was careful to ensure 8-9 hours of sleep a night ,healthy diet, nothing helped. I compensated by drinking 8-10 cups of coffee a day. I didn't think anything of it, until I began falling asleep behind the wheel. After one particularly scary near-miss, I went to a neurologist who declared me "hypersomniatic" (since I didn't have many signs of real narcolepsy), and prescribed Provigil. It worked amazingly. Suddenly I could stay awake at work, and while driving. After ~1 year I started having a reaction. I'd empty my bowels within minutes of taking the pill. My doc switched me to adderall, and I've been on that since.

Life goes on for 5-6 years this way, without me thinking much of it. Until....

I start to notice I *cannot* skip a meal. Too long between meals will leave me weak, and feeling feint. Easy to handle: eat regularly.

Then later I found that if I go out drinking on the weekends I'd be completely laid out the next day. I'd have anxiety and a terrible hangover. I could mitigate some effects by eating a good meal before going out, drinking lots of water when I got home, and eating a small meal before bed. Easy to handle: adhere to this regimen.

But then things started getting worse. The day-after-drinking would leave me with such a high level of anxiety that I didn't want to leave the house. (at the time I would drink once every 2 weeks or so). I thought it was just me getting older, and losing my tolerance to alcohol. (I was married at 28, and we don't go out as frequently). But then...

The first "incident" was at work. I skipped breakfast to get into the office early. Drank a couple cups of coffee to get some pep, and off to work. Around 10am I started feeling ill. By about 10:30 my mind... "shut down". It's hard to describe. I felt terribly weak, and I *sort of* felt the need to throw-up... or for diarrhea... but they were mild urges, not the key thing. The biggest effect was the mental shut-down. I literally couldn't think straight. I laid down on a couch, but the feeling didn't pass after 10 minutes. So I shuffled to a vending machine and ate a snack. After about 30 minutes I was mostly recovered. I was able to get up and eat lunch, and was much improved. I kept working the rest of the day.

The second incident was much scarier. Friday night we had an early dinner, then went out drinking with friends. No snack that night. We planned on a Saturday brunch out. I woke Saturday actually feeling fairly well, no serious anxiety, no hangover. (Good remedy: try drinking some pickle juice before bed, it really helps!). We were delayed until about 1pm until we finally left. (So no meal for ~18 hours). Walking to the cafe I started to feel a little ill. Nothing serious, just a bit queasy. Arrive, get a seat. Order. It's taking a while. Over the course of the next 10 minutes while waiting for the food I go from not-feeling-so-hot, to total shutdown. Again that sort-of need to throw-up and BM urge, and mental shutdown. But this time I start turning completely white, and I break out in a cold sweat. I completely soak my clothing and the seat I'm in. My wife is in a panic, not sure how to handle the situation. I want to go to the bathroom to throw-up... maybe diarrhea... but I'm too weak to go, and I'm too weak to try to vocalize this to my wife. I rest my head on the table and try not to move. Eventually her juice arrives, and I drink a couple sips... and within minutes I'm starting to feel better. Over the course of the next 45 minutes I slowly take more juice, then eat a little, and finally was able to even walk home.

I was working in China at the time, which is why we didn't go to the ER for this incident. But we immediately scheduled an appt with my doc. Got a full physical. Blood test. Any problem? Am I diabetic? The doc tells me I'm in perfect health. Pats me on the back and says, nothing to worry about.

The next few months I'm extremely careful to eat on schedule. But I also start reading online if there are any conditions related to my symptoms. After a string of clues I finally read the description about celiac, and it sounded like it may be a match. Lactose intolerance, gas, frequent soft BMs... I figured well, it's easy enough to run a test case. Just cut out gluten, and see if I feel better. Right about this time, my overseas assignment ended, and I was moved back to the US.

Back in the States: time to switch to gluten-free as a test. And *bam*, I felt GREAT. For the first time in nearly 10 years I could stop taking my wake-up-pill... I didn't need it to stay awake in even the dullest of meetings, or the longest of drives. Not only that, but I eventually found out that if I skipped breakfast or lunch the only effect was that I'd be a little more hungry at the next meal. It was a great time!

I was "mostly" gluten-free, but it was only the obvious things. No bread, no pasta. I didn't check labels, and occasionally I'd indulge myself with something like fried chicken. At first all was well. I'd eat fried chicken once a week, no problem. But later I found that if I ate fried chicken, without about 30-60 minutes I'd have diarrhea. So I figured it was time for the experiment to end, and I made a doctors appt with a GP. I explained the situation, she did a blood test for celiac, and declared I was perfectly fine! Go eat all the gluten I want! What a relief! Maybe my problem was just stress. "Sometimes people can make themselves anemic", she told me.

That weekend my wife and I celebrated the announcement by going to Pizza Hut, to satisfy a now months-long craving. What happened next... at first, it was the "weird mental" thing. My brain just wouldn't work right. She drove us home. Within about 30 minutes or so the diarrhea started, and lasted for several hours, until I felt I'd been turned inside out. Also, I'd "feel my heartbeat" in my gut. Not my stomach, but in my gut I could really feel the individual beats. My heart wasn't beating overall fast, but it was STRONG. Each beat would *thump*. Eventually those subsided, but that weekend I kept that "weird mental" after-effects throughout, and I had EXTREME anxiety. I also had something I describe as "body panic". Where it feels like someone took a crotchet needle and stirred it around inside of me... a week ago. So there's no real PAIN, just the weird feeling of a PAST pain.

Ok, time for a new doc. So I make an appt with a GI specialist. He tells me that if I've been gluten-free for months, the blood test wouldn't necessarily show anything. He scheduled an upper-endo to take a look at my intestines first hand! He advised me to eat gluten for 4 days before the test. My wife and I were dealing with family the weekend before and I didn't want to risk any side-effects, so finally I only ate some smaller things for the remaining 2 days prior. I didn't eat anything too big (maybe a mistake?), but I did have similar reactions, diarrhea and "head cloud", but very mild compared to the pizza-eating adventure.

After the upper-endo, the doc tells me I do have an ulcer- a lot of inflammation in the stomach. He gives me meds to help, and tells me to cut back on caffeine and alcohol for the next 2 months. No problem. But then he also says, "Great news! Your intestine looks fine! You don't have celiac!" He then said that all my problems must have come from my ulcer. He said it's no problem if I felt more comfortable to stay off of gluten for a while, and then after the ulcer was healed I could begin slowly re-introducing it.

So, later that month I found out I DID have an ulcer. At first it was no problem, I "cut back" on caffeine and alcohol, but within about 2 weeks if I had any at all I'd get a sharp pain on my lower right side. (Stomache?). Blah. So I totally cut out all caffeine and alcohol, and those pains totally subsided. But then...

We're trying to be gluten-free. One quick-meal for me would be lipton-rice-meals, with some extra veggies and meat mixed in. One night, after eating a big helping, I suddenly had that strong "head fog" again. This wasn't the body panic or anything... just... I couldn't think straight, or of anything in depth. After ~15 minutes it passed, I tell my wife, and she immediately goes to check the ingredients on the Lipton Rice pack... and she sees that wheat is the 2nd or 3rd ingredient. (Clever girl... I never thought about it. I actually thought since I'd eaten a good rice meal, there CAN'T be any gluten in it, and since I had the "head fog", it must be proof that I'm NOT gluten-intolerant!)

From that point on we became gluten-free religious. *NO* risk of any gluten anything. (Soy sauce was a surprise). And I'm feeling great again, and the ulcer is also gone, hurray. So fast forward a couple months, and I indulge myself with a "spider roll" (favorite sushi, breaded shoft-shell crab), I thought a little would be OK, but 30 minutes later... diarrhea. *sigh*.

Phew, OK, so there's the history. I know it's long, but I saved many of the stories. (Ask me about the hefeweizen beer story...)

But I'm still stuck. I've got two doctors telling me clearly no, I'm not celiac. I think my GP thinks it's all psycho-somatic, and the GI doc thinks I had an ulcer for the past 4-5 years (I guess?). But I can't help but think it can't be psycho-somatic because otherwise why would I have a reaction to food I *thought* was gluten-free, and only after the reaction checking labels or online proved otherwise? And I've never had a reaction as long as I stick to a pure gluten-free diet?

So, here's my shot-in-the-dark theory...

Maybe I do have celiac. That explains why I've always been thin-as-a-rail my whole life. It really picked up steam in HS and college and I lacked proper nutrition, so that's why I'd fall asleep. At first Provigil helped keep me awake. But it turns out that Provigil has something like 30mg of gluten per pill. Eventually my body learned it was bad, and taking the pill generated instant diarrhea. Adderall is salt and amphetamine, so no such reaction. For years I was covering the problem with Adderall. But as I aged, my tolerance to gluten dropped. I'd have such strong reactions day-after-drinking as a reaction to the gluten in beer. Once I switched to an almost-gluten-free diet in my first test I recovered quickly, but at the same time my tolerance to gluten dropped in a hurry, making me more and more hurt by even small amounts of gluten. The first doc couldn't detect it using the blood test since I'd been on such a low gluten diet for several months. The 2nd doc could find it with the upper-endo because I only had 2 days of eating small amounts of gluten, so the test was a false negative. But after the stress from the first doc, the excitement with pizza, and the fear of having some unknown thing wrong with my body, I developed an ulcer in the couple weeks leading up to the appt with the 2nd doc. (I don't recall having ANY ulcer-type symptoms in the years prior).

As a disclaimer, personally I don't believe myself to be a hypochondriac. I avoid doctors at ALL COSTS, and even in my early problems it actually took my wife to convince that maybe something was wrong with me. I just thought it was "me getting older". But hey, I'll stay open minded. If you think that the symptoms I'm describing don't match celiac at all, then I'm 100% open to hear the news. (Hey, it means I can plan another pizza night!)

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None of your tests for celiac were worth anything - you were either gluten free, gluten light, or hadn't been back on gluten long enough to make a difference. (Two days is CERTAINLY not enough time to show up on a biopsy - even four days isn't. It's three slices of bread a day (or the equivalent) for three months.)

What struck me about your description, at first, is that it sounds fairly classic for reactive hypoglycemia. For some, this can be connected to celiac, but not for everyone. It is NOT diabetes, and most tests for diabetes aren't going to pick it up, because it's not about a high fasting blood sugar, it's about a drop in blood sugar that occurs to quickly *for your body* after eating. There are "guidelines" as to what your blood sugar should be, but there is no absolute. (My blood sugar "tests" normal, but every doctor I've been to concurs that it's almost guaranteed that I have reactive hypoglycemia based on symptoms and reaction to treatment.)

But you went gluten free, and you felt a big change. That is an important test right there. It does sound like you may still have reactive hypoglycemic symptoms while on a gluten free diet, but the gluten free diet will not "cure" all cases of reactive hypoglycemia. If the diet makes you feel better, if you notice a change, why go back to eating wheat? You don't need a diagnosis to keep yourself from feeling crappy - you just need to make the choices that keep you feeling good.

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Tiffany gave a great reply and I don't have much to add except that I am in total agreement. If the desire for a firm diagnosis is important to you that would require a three month gluten challenge by going back to a full gluten diet. If the thought of that is horrifying to you then IMHO you have your answer. You could consider Enterolab testing, they don't diagnose celiac but they can find the antibodies for up to a year after we have gone gluten free.

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I totally agree with everything Tiffany (and on edit Ravenwoodglass) says. I have had the reactive hypoglycemia since I was a teenager, although a bit milder than you. I've learned to always keep food around (Lara bars are good) and my hubby has learned not to "deny" me meals when travelling! I also had the "heartbeat" in stomach and I've always fallen asleep in meetings: I can fight the sleep now in meetings but still have trouble with it, probably because I've had it for 30+ years and because I don't get enough sleep.

You should consider being gluten-free permenantly and completely. All that stuff you go through is just not normal. I, too, for years though that my food going right through me after eating, stomach/intestinal pain, gas, anxiety etc. were "normal" things that everyone dealt with. You will be able to relax and enjoy life more if you are gluten-free, even with the hypoglycemia.

Best of luck to you.

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