It's Been 10 Months Since I Found Out I Had Celiac

[CGally81]

After having "silent" symptoms in 2008 (such as fructose malabsorption that came out of nowhere), and very nasty "overt" symptoms starting in early 2009 (severe brain fog with temporary short-term memory loss, liquid D, depression, low blood sugar reactions, headaches), I did some reading on the internet and diagnosed myself with gluten intolerance/celiac disease in July 2009. I went gluten-free shortly after.

Or I thought I did. The first thing that happened was nasty withdrawal. First I was hungry ALL THE TIME and had to eat like 4000-5000 calories a day just to not get horrible headaches and feel like I was about to pass out. I also got muscle twitches, chills in my legs and forehead, itchiness, and other stuff. (I occasionally still get these in a mild form, often going away if I use the bathroom)

I had to learn the hard way that Fudgsicles contain gluten (malt powder). I would get a low blood sugar reaction about an hour or two after eating them, and I was somewhat addicted to them. After removing them, my constant hunger, which had been going down, shot back up again and seemed to go down much much more slowly than before. I began putting on weight, considering the sheer amount of food I was eating and the fact that I no longer had liquid D removing the nutrients from me.

In December 2009, I began to suspect I had casein intolerance as well, as many celiacs here reported having to go dairy-free months after they went gluten-free. I tried reducing my dairy, and my hunger went up along with my withdrawal symptoms.

I began keeping a food, symptoms and calories log in January 2010, which I still keep even now. I noticed that I would get a headache, become hungry, and start to zone out shortly after eating gluten-free food that had casein (milk protein) in it. I removed THAT from my diet, and that problem went away, though I still still hungry a lot.

But then, slowly, something strange began to happen.

My hunger started to go down more rapidly than it had before. I had my "get better, then feel worse, then get even better than last time, then feel worse, then get better than last time, etc." curves, like I did with my withdrawal and hunger before, but in February, I had a surprisingly large number of days where I could eat less than 2500 calories and actually be able to handle it. I even had the occasional hour of feeling totally normal, which NO headache (mild or otherwise), hunger, or anything. Sure, it was only for an hour or so a day, but it was a massive improvement.

Things went up, with the occasional down, from there. I would occasionally have a time when I could have sworn I ate totally gluten-free casein-free stuff, the same things I ate the day before, but would get a headache or have some liquid D anyway, as if it had randomly occurred. But that began to happen less often. Sometimes, on some days, at random (not after eating necessarily), my stomach would make periodic noises. But I was improving in general, it seemed.

Currently, my hunger level is largely such that I eat within 2100 calories a day. I'm losing weight in a healthy way, for once. I'm down from 185 pounds to 159 within 6 months. I feel normal far longer.

However, it's not perfect. Sometimes I get itchiness, and the occasional muscle twitch (though the twitch never lasts). I sometimes get headaches on some days. I wonder if I am having my "down" moments inbetween the "ups", or if instead I'm still being exposed to trace amounts of gluten? I stopped taking L-glutamine when I saw the gluten symptoms go away. Maybe I should have it once a week just to be sure and recover any residual damage that may still be there.

I cook my food, such as hamburger patties, chicken and such in pans wrapped in tinfoil. I wash utencils with soap and hot water, rubbing the soap on it with my hands directly rather than using a sponge (who knows where that sponge has been?). I am careful to try to avoid any risk of cross-contamination, considering I live with my parents, and you can bet my diabetic dad, whose diet is limited as it is, would not want to suddenly go gluten-free for my sake. (Considering what he's been through, I can't blame him)

I've come so far. I no longer have the constant hunger. I can concentrate and enjoy things again. I just feel like I haven't changed in the last few months.

Do you think I am still being exposed to trace amounts of gluten? Should I do what one celiac coworker did and buy my own utencils and cookware and limit them to myself? Or is it just that the last 10% of recovery is always the slowest?

Does anyone who feels they recovered mostly or totally from celiac damage have any views on this?

[chasbari]

Sounds a lot like the battles I have fought day in and day out. I was relying heavily on fruit for a while and thngs started to get worse again which was distressing. I won't go into the detail you have but relate to much of what you have experienced. I would go back and double check for what I might be missing. Hard to live in a shared environment. The hunger and withdrawal were tortuous for the first half year. I now know that as long as I keep fruit intake to a minimum and keep the protein intake high that my appetite has finally settled down a bit. Even to the point where I can go several hours between food instead of grazing all day long just to keep the hunger at bay. Good luck.

[Mari]

I have some suggestions for you but wanted to say first that you are doing just great. It seems to me from what you wrote that you may have a problen with intestinal yeasts or other organisms which have overgrown the normal intestinal flora. Many of start out with this problem and sometimes we have to find out what is causing it. Lately I've seen several people refer to Metametrix Laboratories and so I visited their site. They have many panels which may be helpful to you - especially the panels to assess intestinal health, in particular parasites and intestinal organisms such as yeasts and bacteria. I usually use alternative/herbal programs for intestinal problems but in the past few years the medical treatments have greatly improved and some people are satisfied with the results.

The Specific Carbohydrate Diet is a good food guide for what you can eat. It works by starving the nasty intestinal microorganisms but providing you with good nutrition. I started using goat's milk yogurt and this last week have started making my own as it is so easy to make.

Intestinal yeasts like Candida may take some special treatments to get rid of. Drs usually offer antibiotics but for my problem I chose to take Candida herbs and Neem leaf capsules. These little invaders actually produce something which stimulates your appetite when they hungry. Gluten free diets deprive them of carbohydrates so they don't grow as well but still can cause problems when you eat sweets or carbs.

[T.H.]

Oh congratulations! I just hit my 10 month mark 7 days ago, too! :-D Seriously, way to persevere and do all this for yourself, and to have it working so well is wonderful. I definitely had that crazy hunger issue going on in the beginning, for months. I'm down about 60 pounds from where I started when I was diagnosed. It's a great weight loss program, eh? For myself, recovery has been slow, but I think the last bit of recovery was actually faster, for me. I'm not sure if that's the typical recovery schedule or not, though.

You said you were keeping a food journal there for a while, are you still doing that? That's something I did, too, and with you still having trouble, that might be useful again. As you mentioned, a lot of celiacs have trouble with casein, but we also tend to have more food allergies and sensitivities in general, as a population. Perhaps it's not gluten but another food that is getting you?

My own food journal was helpful for my finding out some of the other foods I had problems with. They don't test as allergies, and the reactions aren't hives and itching, they are things like you describe. I'll get headaches from peanuts, for example, or certain foods will give me stomach pain or the runs. Some of the foods were, like gluten, really hidden in a food, and it wasn't until I noticed symptoms in the unchanged version of the food and did some research that I found the hidden sources.

I imagine that would be helpful for the yeast possibility too? If your journal shows you are reacting after lots of yeast feeding foods, perhaps?

Or you could be right and you're getting gluten elsewhere. I have found out that I am sensitive enough to react to gluten in my dishsoap and my shampoo. I can't get enough dishsoap rinsed off my dishes to not react sometimes, and the shampoo a few times has gotten past my lips when rinsing off my hair and glutened me. Do you know if products like that might be glutening you? Perhaps something like a makeup that your mom wears that might somehow touch something you touch to your lips? I would think the tinfoil would protect your food very well, although if you have wood or plastic utensils, they are porous to gluten, so they will absorb it and release it back into the food you are cooking. Seems to be a problem for really sensitive celiacs. So if you share those, that might be worth getting a set of your own.

good luck, and congratulations again on making it this far!

[CGally81]

The headaches I had in the past few days reduced after using the bathroom A LOT. I noticed sometimes I get big headaches and increased hunger shortly before I have to use the bathroom in a big way, and they reduce afterwards. So that might have been part of the problem there. But I'll see if they truly go away or not.