Jump to content
Entries in this blog
I'm a 35-year-old woman with hereditary hemochromatosis. I'm supposed to have zero problems til menopause, but in my 20s I had severe iron overload.
After the bloodlettings, things went along OK. But now I'm diagnosed celiac and gluten-free...and my celiac anemia tendencies are removed, allowing the iron free rein in my system. It's running in my system like toddlers after cake.
So I feel like crap. Yay. Thanks, genes.
BUT I also have crazy high blood sugar after eating. This is an Easter egg for iron overload. And since all fructose causes bad things to happen for me (extreme leaky gut issue or hereditary fructose intolerance? Hopefully I'll get some answers soon.) I have to eat only white rice, safe fats, and lean meat/fish.
So, basically, a starch-rich diet with tons of iron. Yay once again. Ooh, or mercury, since I hate all seafood but tuna.
Did I mention I'm dangerously underweight? And I lost even more when I stupidly tried the SCD thinking this was all just SIBO. I'm up to 99 lbs (I'm 5'2") but I can't both control my blood sugar spikes AND eat enough extra calories to gain weight. Since I feel awful when my blood sugar's above 130, guess which one wins out.
Ironically, if I was my proper weight I could just saunter over to a blood bank and shed the excess iron. But with my current condition I'd just do what I always do when someone tries to take a full bag of my blood--pass out. No thanks.
Am I complaining? No, I'm blogging. Complaining would be explaining to my coworkers exactly why I can't eat the constant snacks in the kitchen, in meticulous, medical detail.
Hells bells, this is a crazy runaround of intestinal delights. Looks like I'll have lots to talk about at Mayo next month.
I tried Celiact this week. For two and a half days only -- and then I had to stop.
It seemed like a great idea. It has a ton of stuff in it, all of which I was taking separately and some of which I had on order and didn't have access to. I don't have anywhere to buy gluten-free vitamins, since I live in Japan and they aren't very gluten-free-friendly here, and the US bases stock what the servicemen want, and that doesn't seem to be the same stuff I want. So everything comes to me from Amazon via a slow cargo ship. Given the trial and error of supplements, it's slow-going to find something that fits my needs.
[b]Strike one for Celiact:[/b] I emailed them to ask if the probiotics in them would survive being mailed to me, especially since the website recommends keeping them in a dark, cool place. Normally I take freeze-dried probiotics, which can take that kind of journey and remain viable. But no response from Celiact, almost a month later.
[b]Strike two:[/b] Once it arrived in the mail, the first thing I see, right on the bottle, is that it contains TRACE AMOUNTS OF CASEIN. So -- I wondered if I should take it or not? I was on day 5 of an experimental casein-free diet. I was pretty excited to try it, since I was hoping the magnesium would help with C and bloating. Meh. I could always just start that again. So I started it. But anything specifically made to help celiacs heal should be dairy-free. Even the wildcard box of gluten-free goodies I get from [url="http://gfreely.com"]G-Freely[/url] are dairy-free (and AWESOME), even though they have some products oats and beans, which I can't handle. They know dairy is basically taboo to a lot of celiacs.
[b]Strike three: [/b]The bloating and C were not noticeably better than they had been with the other supplements I was taking. Plus, I still had stomach aches and whatnot after eating, which Digestive Gold had minimalized. But now I had new problems, and I don't just mean the unexpected gift of neon-gold urine from excess Riboflavin. The day after I started Celiact, I woke up with a sudden dizziness and depression that lasted all day, and then went to bed with an insomnia that even melatonin couldn't crack. This lasted two days until on the third day I noticed the dizziness and depression lifted just over seven hours after I took the Celiact with breakfast, just when my urine had turned back to a normal shade. Coincidence?
So today I'm officially going back off Celiact and picking back up my sundry digestive enzymes, probiotic, multivitamin, and D3. If the dizziness and depression are still gone tomorrow, I'll have greater evidence that they're connected to taking Celiact. If that's the case, I can't be sure it's the casein -- especially since I haven't really done a casein challenge yet -- but at least something in the Celiact would have been the problem. Casein's a likely culprit, though.
For what it's worth, the label on the bottle also said that they were planning to release a casein-free version sometime soon. But by then I'll have already found my rhythm with a different set of supplements.
I've lost cheese!
I put two and two together and am now on a two-week casein elimination diet. HOLY COW. It's day 4. (On day 2, my rennet arrived in the mail. It was a sad day.)
I just made a dinner for my husband and me that took an army of hands. There was my gluten-free pasta, his gluten-ful pasta, my homemade meatballs with fennel seeds, his homemade meatballs with parmesan.
Why not make gluten-free pasta for both of us? Because it's freakin' expensive and a waste on him. He sees pasta as a meaningless sauce conveyor so he gets cappellini. I see pasta as mana from heaven, so I get super-pasta-y elbows.
Why not make meatballs for both of us? He hates fennel seeds and I...miss parmesan and want someone to be able to eat it.
Tricky to make food you can't taste to check and see if it's all right. But I had so many irons in the fire that I overcooked the meatballs. Sigh.
Then I ate some mini-snickers, like an idiot. Hello, trace amounts of casein (not to mention the possible cc).
No cheese, no butter, no decent candy. They don't have vegan Dagoba chocolate here at a US base, folks. And Larabars? Forget it, Amazon won't ship them to an APO address (but water kefir crystals -- sure, no problem, go crazy).
The local specialty is delicious taco rice, which is exactly what it sounds like. Greasy, cheesy taco filling on pure Japanese rice. Except I had to ask for no cheese, and it ended up being shredded lettuce and ground beef on rice. Suddenly, it's just half a dish.
Cheese, butter, tiny bits of milk in chocolate -- this is the glue that holds deliciousness together. And since I've reacted RIDICULOUSLY well to my casein elimination diet so far -- like a dark cloud has lifted -- I have to consider the idea that this may be my future forever. Oh, sure, there are wonderful work-arounds, lots of consolation prizes (Van's gluten-free waffles are DAIRY-FREE!), but for the moment, I'm just sad I've lost my cheese.
I told my mother. "Oh," she said. "I couldn't live." Then, ten minutes later, she said, "I've thought of something you can eat. You grate some parmesan..."
"No mom," I said. "No. That's the entire point."
Everything I ordered when I went gluten-free arrived in a heap in the mail today. We have a slow boat from the States, and none of this is available locally that I can tell. I got my freeze-dried probiotics, my medical powder for leaky gut, and my gluten-free jerky. I already have digestive enzymes.
The probiotics seemed great. I mean, no problems anyway. But I had a mild reaction to the jerky and a slightly heavier reaction to the medical drink. All are gluten-free, but all also have small amounts of sugar. Could this be a fructose malabsorbtion problem? Or maybe just normal leaky gut malabsorbtion issues that will go away over time?
No idea. Par for the course.
I haven't been able to eat normal food without problems for as long as I can remember. The problems used to be worse, but I unconsciously identified some as causing me a problem. I have always been a picky eater.
Today I tried to eat normal food for lunch with digestive enzymes, for the first time. Normally now the problems I have when I eat is that I get a headache, I'm dizzy, I can't think, and I go into a sort of daze. It starts about a half an hour after I eat and lasts for two hours, usually. So far, only ten foods are exempt from this rule, and unfortunately they are not enough for a full diet, only slightly less than half of one.
Today, an hour and a half after lunch, I have all the usual symptoms, but they're muted, and I can think through them. Not 100%, but [i]at al[/i][i]l[/i].
Does this mean I can really eat now?