Finally Recovering! (I Hope)

[CGally81]

Well, it's been over 6 and a half months since I first diagnosed myself with celiac, by going gluten-free and watching the horrible symptoms (brain fog, liquid d, blood sugar drops, and others) go away. Before being promptly hit with extreme, constant hunger. And weeks later, gluten withdrawal symptoms. And "recovery" symptoms (the withdrawal symptoms were distinct, but I consider the frequent headaches to be something else). Over the past few months, when I'd also been casein free (hello, casein withdrawal), I had frequent headaches, would often feel knocked out after a meal or some foods (sometimes it would happen, sometimes it wouldn't. It was random), and I was hungry a lot.

Well, in the past few weeks, these symptoms had been more and more reduced over time. And the hunger! It's so much lower, that, yesterday, I ate only about 1600 calories (I would have eaten more normally, but it just didn't occur to me too), went for a bike ride and a walk, and felt surprisingly (mostly) fine! (Oh yeah, and I'm male, and males need to eat more than females. So factor that in)

And only a month ago, and 2 months ago, I'd been averaging 3500 calories a day.

It's incredible. Granted, I go to great lengths to avoid gluten and casein (which I also have a problem with) in my gluten-eating family. I rinse any utensils I use with HOT water (and a little bit of dish fluid) to make sure they're fine. I put tinfoil on every pot I cook on, on the spatula itself, and on the lid. (It's either that or buy separate utensils and cookware, which a celiac coworker of mine actually did) I have my own separate peanut butter jar, so there's no "stick knife in peanut butter, put on bread, stick back in jar carrying the poison with it" occurring.

But the recovery symptoms and withdrawal symptoms (itchiness, muscle spams, chills in my legs and forehead - the others have already disappeared) are going away. I still feel knocked out sometimes after eating food, with a headache, but it happens less often, and tends to be less powerful when it does. I sometimes get mild headaches, but they used to be much worse. I still get fatigue, but I used to have much heavier fatigue. But these symptoms are noticeably getting better over the weeks, and the hunger is pretty much gone. There are people on here who said that after going gluten-free for a while, they were less hungry than they were before they had celiac! Same here. I've had several days with less than 2000 calories, whereas before I had celiac, 2500+ was normal for me.

Anyway, to those of you who recently learned you had celiac, or who have had celiac symptoms longer than I have, I can tell you that things do get better, even if they take a long time to get there.

[sandsurfgirl]

Well, it's been over 6 and a half months since I first diagnosed myself with celiac, by going gluten-free and watching the horrible symptoms (brain fog, liquid d, blood sugar drops, and others) go away. Before being promptly hit with extreme, constant hunger. And weeks later, gluten withdrawal symptoms. And "recovery" symptoms (the withdrawal symptoms were distinct, but I consider the frequent headaches to be something else). Over the past few months, when I'd also been casein free (hello, casein withdrawal), I had frequent headaches, would often feel knocked out after a meal or some foods (sometimes it would happen, sometimes it wouldn't. It was random), and I was hungry a lot.

Well, in the past few weeks, these symptoms had been more and more reduced over time. And the hunger! It's so much lower, that, yesterday, I ate only about 1600 calories (I would have eaten more normally, but it just didn't occur to me too), went for a bike ride and a walk, and felt surprisingly (mostly) fine! (Oh yeah, and I'm male, and males need to eat more than females. So factor that in)

And only a month ago, and 2 months ago, I'd been averaging 3500 calories a day.

It's incredible. Granted, I go to great lengths to avoid gluten and casein (which I also have a problem with) in my gluten-eating family. I rinse any utensils I use with HOT water (and a little bit of dish fluid) to make sure they're fine. I put tinfoil on every pot I cook on, on the spatula itself, and on the lid. (It's either that or buy separate utensils and cookware, which a celiac coworker of mine actually did) I have my own separate peanut butter jar, so there's no "stick knife in peanut butter, put on bread, stick back in jar carrying the poison with it" occurring.

But the recovery symptoms and withdrawal symptoms (itchiness, muscle spams, chills in my legs and forehead - the others have already disappeared) are going away. I still feel knocked out sometimes after eating food, with a headache, but it happens less often, and tends to be less powerful when it does. I sometimes get mild headaches, but they used to be much worse. I still get fatigue, but I used to have much heavier fatigue. But these symptoms are noticeably getting better over the weeks, and the hunger is pretty much gone. There are people on here who said that after going gluten-free for a while, they were less hungry than they were before they had celiac! Same here. I've had several days with less than 2000 calories, whereas before I had celiac, 2500+ was normal for me.

Anyway, to those of you who recently learned you had celiac, or who have had celiac symptoms longer than I have, I can tell you that things do get better, even if they take a long time to get there.

It's good to hear!

[CGally81]

It's good to hear!

Yeah. I had a hard time believing it myself, as things would seem to get better, then worse. Then I had to remove casein from my diet since it was causing the same symptoms as gluten, though milder. (They were gradually getting worse) That caused a spike in hunger and withdrawal.

I am still holding out for the possibility that things may somehow get worse again. But I'm feeling better than I have in a while, and I've eaten less than 2000 calories the past 3 days (1900, 1600 and today, 1700). I know, I'll eat more again, but I'm amazed that I can actually afford to do this and not feel terrible, or be craving food badly or having nasty headaches.

How long have you had symptoms?

[sandsurfgirl]

Sadly I've had symptoms my entire life and just got diagnosed at 40. It has waxed and waned and been awful at times and seemed to be gone at other times. I've been diagnosed with IBS, allergies, lactose intolerance, wheat intolerance (but never went as far as eliminating all gluten and was told to go ahead and eat wheat in moderation) so my healing is not happening very quickly.

[CGally81]

Sadly I've had symptoms my entire life and just got diagnosed at 40. It has waxed and waned and been awful at times and seemed to be gone at other times. I've been diagnosed with IBS, allergies, lactose intolerance, wheat intolerance (but never went as far as eliminating all gluten and was told to go ahead and eat wheat in moderation) so my healing is not happening very quickly.

I'd been consuming casein until I realized it was causing problems in early January. And I continued to eat a food that had "malt powder" when I first went gluten-free, not knowing that malt powder contains gluten. So I too wasn't being perfect in my dietary changes.

If I do consume gluten now, I know very quickly.

Anyway, you'd have symptoms your whole life, so your healing, I think, could very well be slower than mine. I'm 28 and had overt symptoms since 27, which I realize is not a long time. But I had silent symptoms before then - half a year before the overt symptoms, I developed fructose malabsorption, and couldn't tolerate any fruit other than bananas (which contain a mix of sugars different than other fruits), without immediately craving sugar. Going gluten-free long enough caused me to tolerate fruit again. But celiac had caused that symptom before I knew I had a problem with gluten, or had any way of knowing. Celiac is a nasty disease.

[sandsurfgirl]

I had cut dairy but wasn't worrying about casein until today when I ate butter and felt awful. So that's out too for awhile. I hate celiac disease. I really really hate it.

It's hard to know how long you've had it too, because some people get non GI stuff like headaches or allergies, or whatever. It's seriously the stupidest disease ever.

[CGally81]

I had cut dairy but wasn't worrying about casein until today when I ate butter and felt awful. So that's out too for awhile. I hate celiac disease. I really really hate it.

It's hard to know how long you've had it too, because some people get non GI stuff like headaches or allergies, or whatever. It's seriously the stupidest disease ever.

Seemingly every news article on celiac mentions only gluten, and not casein. It's like people don't know celiacs often can't have casein, but at least they're starting to report more details on how celiac can affect people and on what grains (not just wheat) contain gluten.

I have a coworker who had asymptomatic celiac, and didn't have any way of knowing she had it, until she got lupus. When checked out for lupus, they also found out she can't tolerate gluten, casein, soy, or chicken! She later told me that she tested NEGATIVE for celiac. Quite the useful tests they got for celiac, right? I failed that stupid meaningless gene test myself.

I'd love to see gluten outlawed or at least declared a health hazard by the government, if it's so commonplace and nearly impossible to avoid and is poisonous to a good 1% of the population, but I don't see that happening ever. I'd at least like to see its use in medications and non-food products outlawed.

That such a common food ingredient is dangerous to so many people and has been affecting them for years, without being recognized as a hazard, is pathetic. But I remember something I was told in history class once. People in medieval times lived in rat-infested towns and didn't realize rats caused disease. When a classmate said "how'd they not know that something they lived with everyday was making them sick and killing them?", the teacher said "well, they didn't make the connection, and it was part of everyday life. Imagine if flourescent lights were discovered to cause cancer. Future generations would look back and say 'what idiots! They were sitting underneath those things the entire time, not knowing they were killing them?'"

Future generations might look back on us the same way. They'll look at us consuming poison and wondering how society could have been so stupid. Heck, wheat germ is being discovered to be really bad for you, and there's a relationship supposedly between many diseases and the wheat-eating (non-celiac) population. Wheat is a crossbreed of two different grasses, and is essentially unnatural, and we eat it anyway. What will future generations think if wheat is ultimately found to be responsible for a bunch of diseases? "How could they be so stupid?! They were eating that poison every day?"