LonelyWolf307

As an update, I've been following the gluten-free diet pretty much since I made this post. I've felt infinitely better, my stomach isn't distended anymore. Honestly I'm about 99% sure this is what my issue is, it's been a problem pretty much since I last stopped going gluten-free after being told I didn't need to.

I see the doctor next in late January - seeing if my ALT or AST levels have normalized will kinda confirm it in my mind. Either way it's most definitely worth it to stick to the diet if it's helping this much after like a week or two. An official diagnosis would be lovely so that doctors don't think I'm nuts but otherwise the only thing I need is "do this to feel better".

All right, so long story time.

I'm currently 20 and have had GI problems for years. When I was 15-16 or so is when it started, I had a lot of pain when I ate, a lot of bloating, nausea, sometimes vomiting, etc. It caused a lot of problems just with eating. I've been tried on reglan, zofran, most of the anti-nausea meds along with things like prilosec, etc for "acid reflux" which was their initial diagnosis (it never felt like acid reflux though, it was a bloating sort of pain not a burning one). It went on for almost a year before I finally saw a GI about it. Pretty much the first thing the nurse practitioner I saw thought I was a suspected case of Celiac, but they ruled it out with the blood test. The GI nurse practitioner suggested I try a gluten-free diet anyway, and scheduled me for an upper GI with biopsy just to be sure. So I was on a gluten-free diet for a good month or two before we got a chance to do the upper GI, but my symptoms were all but resolved at that point. The biopsy came back negative, though they said they found a lot of very small ulcers in the upper portion of the small intestine and re-prescribed the antacids. They also did a stomach emptying study which came back fine. They told me that I could go off the gluten-free diet, I stayed on it for about 6 months just because I felt better like that, and then I gradually re-introduced a few things like oats, and the rare piece of bread and other things that were previously off-limits.

Now ever since re-introducing it I've had on-and-off problems with my GI tract. They've never been horrible, but I've also never been a big fan of most wheat products. I don't eat much for grains, and most of my gluten exposure is through things like soy sauce and things that have wheat as an additive but not a main ingredient. The symptoms are roughly the same, bloating, nausea, occasional vomiting (rare), that hungry-but-don't want to eat sort of feeling, you know? Recently it's gotten REALLY bad though, ever since my fiance moved in with me several months ago I've been eating a lot more wheat products because that's what he's used to eating and he makes french toast, etc a lot. It didn't really flare up or get bad until that point. It's pretty bad right now, I've gained around 10 lbs since he moved in in June (I'm only about 140 lbs, was 130, and 5'8", so 10 is a lot for me) and it's almost entirely abdomen as far as I can tell because my belly both looks and feels bloated 24/7, even if it's morning and I haven't eaten in 12+ hours. Eating is extremely uncomfortable and it's hard not to just avoid eating entirely at this point.

Now I have been stressed out the last month or so, so I thought it might be that, but I hadn't realized that Celiac had some other symptoms as well... My liver enzymes have pretty much always been elevated. The last time I had them checked my ALT was around 80 and my AST was around 200. I was evaluated for those of course but everything came back just fine so they weren't sure why mine were so high; I never drink and I don't have hepatitis or any problems with the liver and I'm not on any drugs that would elevate those enzymes (can't take NSAIDs and don't take anything else but birth control). My hematocrit and hemoglobin are pretty much always a bit lower than they should be (hematocrit around 35% and Hb around 10-11 on average), and my other blood cell counts are on the low end of normal. I've been treated for iron deficiency anemia a few times and the iron pills have been sorta effective but only brought my Hb up to around 12.5ish (barely high enough to donate blood) even after being on them for a month, which is odd because I eat a lot of meat, spinach and greens, etc and my diet isn't deficient in iron at all (and even when I try to eat more of those things it's ineffective).

I'm wondering how accurate the blood tests they use for Celiac are, and if it might be a good idea to re-try a gluten-free diet? I'm kind of at a loss for what else to do because this won't resolve. It started when I was about 15 and I'm now 20, and while it's waxed and waned I don't want to deal with it anymore. Should I bother to try to get re-tested even though they were negative last time, or should I attempt self-diagnosis if trying a gluten-free diet is effective in relieving symptoms? If it is am I stuck gluten-free for life??

Oh something else relevant - I have many bad allergies already so I wouldn't be entirely surprised at an autoimmune problem. My list of barely avoiding anaphylaxis-responses includes soaps, lotions, beestings, and MSG; I'm also extremely allergic to cats but I don't get the hives/throat swelling with them.

Just one specification; I've heard it's only maltodextrin in foods that is regulated, and is always from corn unless otherwise specified. Meaning things like medications with maltodextrin as fillers aren't necessarily gluten-free, to my knowledge. Might want to look out for things like that. Personally I try to avoid any processed foods at all, save things like rice flours, and do all my own cooking just to avoid cross-contamination issues. Plus it's a whole lot healthier that way.

Wow, solid poop would make me want to cry... I had chronic constpiation with diarrhea, so I consider myself lucky when my colon's not impacted... That's great that you're having regular stools though!

I'm relatively newly self-diagnosed and I have problems digesting anything but fresh fruit and veggies, and limited amounts of soy. Just give it a little time, a few months at least, and if it doesn't start to clear up you might have a problem with beef.

...your family thinks you're crazy for not tasting their new chocolate chocolate chip cookie recipe, because surely a little nibble couldn't hurt right?

Yeah, it could very easily have been the flour dust, if nothing else getting on my food and contaminating it. I eat little other than fresh fruits, soy by-products and beans, fresh veggies, and small amounts of brown rice, grits, and mashed potato flakes. On rare occasion I'll have some gluten-free bread that is oil-free save some flax seed I use as oil replacement, but I don't like to do that because it has egg whites in it as egg replacer doesn't work well for me in bread recipes. Perhaps I should wear a surgical mask while making anything with flour in it? Or just stop making anything with flour in it and see if that clears things up after a month or two.

That's probably a good idea - but I can't afford to make cookies out of rice flours, so my dad and everyone else will just have to go without. I only bake breads for myself because that's what's most economical, being a college student who has more than enough on her plate without making the part-time job a full-time by doing night shifts at the nursing home as well. I'm always good about washing my hands VERY thoroughly (damn medical training taught me to wash my hands relatively obsessively), but I use the same pans and dishes as my dad does, who still eats gluten and won't go gluten-free. Am I damned to keep getting glutened because of possibly contaminated dishes until I move out or if I wash them thoroughly enough can I avoid it? I really can't afford to keep getting glutened - I ride my bike to and from work and school, half an hour ride up and down hills each way, and am on my feet lifting and rolling old people all day, and because I tend to cause problems and on rare occasion accidents when I'm this sluggish I really can't afford get this tired.

I had a jar of the Slim-Fast that you mix with water to make your own smoothies not long ago, the label says that it may contain traces of wheat. I wouldn't risk it.

Does anyone else get sluggish after an accidental glutening? I had something yesterday that must have gotten some of the wheat flour dust that I have for baking stuff for everyone else in the family/when I feel like making cookies to bring to the nursing home residents I work with on it. I feel like a slug today, and while I know I'm not physically tired, and I'm not hungry or anything, I just can't get moving at all. Does anyone else get like this, and how long will it take until it's worn off and I have the energy to go for a run or something again?

I've actually had very good luck with a model made by Sunbeam, it's sold at Wal-mart stores for about $40, and you can buy it through their online store if you want. I haven't tried any of the settings other than white bread(it has 12, 3 crust settings, and the option of making a 1 1/2 pound loaf or a 2 pound loaf), but it's always managed to turn out good gluten-free and regular loaves for me. And the price is right too. It never seems to get breads over or underdone for me, and I experiment with recipes and everything so that's always a plus. I've never tried the Zoji so I wouldn't know, but I don't plan on buying one because they're out of my price range.

If you can find any dairy-free chocolate chips, semisweet maybe, it seems like pretty much everyone except me likes this recipe (I don't like chocolate unless it's in its bitter, unsweetened form). It's from Bette Hagman's vast collection.

3 cups marshmallows

1 cup chunky peanut butter, or creamy, but add peanuts to taste

2 cups chocolate chips

1 stick butter

Melt in a microwave, put in a container and let set for a while in the refridgerator, and enjoy.

On top of it all, it's next to impossible to mess this one up too

I just made cornbread today actually, and I think it turned out pretty tasty. I just followed the recipe on the corn meal box with the following modifications:

-double the amount of egg whites called for

-replace the wheat flour called for with either white rice flour or gluten-free all-purpose flour

-replace the oils called for with double the amount of flax seed meal, and add as much water as needed to make it the right consistancy

-add one and a half times as much baking powder as called for

That's all I did and I think it turned out pretty tasty.

I sometimes make peanut butter and jelly sandwiches with corn tortillas instead of bread, since I think that gluten-free bread doesn't taste quite as good in sandwiches as it does by itself (the kind you buy is too dense, the kind I make by hand is tastier without any other flavors added on top).

YES! I've been looking for something to use some ginger root I have sitting around the house right now. This sounds absolutely delicious, gotta try it when I get home Thank you!

I ADORE my lefse recipe, it tastes great, and it's fat-free too

3 cups mashed potatoes, usually 3 good sized potatoes will do, just peel, boil, and mash them

1/2 cup unsweetened applesauce

3 tablespoons sugar

2 teaspoons salt

1 1/2 cups white rice or gluten-free all-purpose flour

Combine all ingredients, flour last. Roll out like a tortilla, fry in a non-stick pan essentially like you would a tortilla.

The nice part about this recipe is that you can make a large batch at a time, and freeze the ones you don't eat right away. Just microwave for a short period of time and they taste like they're fresh.

When I go traveling, I usually like to make myself some gluten-free waffles and just bring one for every meal I'll need, and other than that I'll eat fruit which can be found anywhere, and salads (same applies). They seem to keep pretty well if you keep them in a plastic bag even if you don't freeze them, and the recipe I use is pretty tasty. I would be sure to keep them frozen or refridgerated if you use egg in your recipe though (I don't).

There are some gluten-free cake mixes you can buy as well, I've never tried them but I have a cousin that's gluten-free (for autism though, not Celiac) that has them on occasion, and they certainly look pretty good! I know there are brownie mixes out there that are gluten-free too, so if you wanted to give that a try that might be good. There's sure to be some ice cream options too, Rice Cream (made by the people who make Rice Dream) is gluten-free as far as I know and it's pretty good in my opinion.

As for foods, you can really make anything gluten-free, it's just a matter of finding a recipe. If you've got any requests I can certainly look up recipes for whatever you feel like having really.

As for potato chips, be sure to be careful about which ones you have. I've found some of them contain wheat as an ingredient, and I'd be especially careful about the ones that are flavored. Just read those labels

My god, someone would actually rather be skinny with a completely f*cked small intestine than be overweight with a perfectly healthy body?!?! I have one thing to say to that...

#$*(@&#$*(^$)(!@&*$*()&!^@*&^%#^@&*(^$@!!!!!!

Good lord people are morons...

I suggest getting Bette Hagman's book "The Gluten-Free Gourmet Cooks Fast and Healthy." It's got a lot of pretty good bread recipes in it, and most of them are a bit reduced in cholestrol and fat, when compared to the originals, so they're relatively good for you too. I have a modified version if one of her recipes that I tried last night and I really liked.

Wet ingredients:

1 2/3 cups warm water

1 teaspoon vinegar

6 tablespoons flax seed meal plus 1/4 cup water

3 egg whites or egg replacer for 3 eggs

Dry ingredients:

2 cups white rice flour

2/3 cup tapioca flour

1/3 cup potato starch flour

2 1/2 teaspoons xanthan gum

1 teaspoon salt

2 tablespoons potato flakes (the kind you use to make mashed potatoes)

1 packet or 2 1/4 teaspoons active dry yeast

Make according to bread maker recipe, but make sure to scrape the sides while it's in the mixing process so you don't get flours and things that stay on the side of the pan. They won't get entirely mixed, and you'll have flour chunks on the sides of your bread, which doesn't affect the taste but it's a pain when you're cutting or trying to eat it. Oh, and if you're not aware the dough for gluten-free breads should be about the consistancy of cake batter rather than a dough ball like regular breads, so that's perfectly normal and it should in fact be that way. Use the white bread setting, 1 1/2 pound loaf, and whatever kind of crust you like (personally I like the dark crust but whatever suits you).

Things like flax seed meal are usually all right, I tried substituting that for oils in the bread I made last night and it turned out pretty good, really nice flavor from the flax too. Olive oil usually makes me react, I've tried that in stir fries and things and it wasn't any good. I asked the grocery store to stock some egg-free egg replacer so I can use that in baking, they only had egg beaters when I went in yesterday but they've always been great about stocking things if you ask one of the managers to order it for you. They even got a new gluten-free section (I hadn't requested it, but since a Super Wal-mart opened recently they needed something wally world doesn't stock so they can stay in business), which is really nice for me as well.

The bread was pretty nice tasting though, and it worked out pretty well. I modified it from Bette Hagman's New Formula Yeast Bread in her book "The Gluten-Free Gourmet Cooks Fast and Healthy." Here's the recipe I used:

Dry ingredients:

2 cups white rice flour

2/3 cups tapioca flour

1/3 cup potato starch flour

2 1/2 teaspoons xanthan gum

1 teaspoon salt

2 tablespoons potato flakes (the kind you make into mashed potatoes)

Wet ingredients:

1 2/3 cups warm water

1 teaspoon apple cider vinegar (white)

6 tablespoons flax seed meal

1/4 cup water (to keep it moist, since flax seed is replacing the margarine/oils needed)

3 egg replacers, or 3 egg whites if you're out of that

1 packet or 2 1/4 teaspoons active dry yeast

Make according to bread maker instructions, makes a 1 1/2 pound loaf.

Oh, as for the water question, I drink about a gallon of water a day on average, plus whatever liquid is in the food I eat (I drink lots of frozen banana and soy milk smoothies for meals), so I doubt that's the problem... though I do exercise a lot and sweat a lot from that. I ride my bike about an hour every day, to and from work/school, carrying on my back whatever I need for those things (everything but school textbooks usually), and when I go to work on my days off of school I generally have either a 5 or an 8-hour shift on Wednesday and every other weekend. I'm on my feet all day at work, I'm a nurse at a nursing home and take care of old people in the dementia ward, so I do a lot of lifting and bending and relatively heavy physical work most of the day. I'll try drinking more liquids throughout the day and see if it helps any.

I've only been on a strict gluten-free diet for a few days, I reintroduced gluten a few days ago to ensure it was, in fact, gluten and not some other weird allergy. Obviously I reacted, and have avoided the stuff like the plauge ever since. However...

Perhaps this is just because my small intestine would still be harboring a lot of damage after only 2 or 3 days of going gluten-free, but I still experience a lot of pain when I eat anything other than unadulterated fresh fruits, veggies, and small amounts of soy milk (lactose intolerant as well). I'm hoping that's the case, because I'm a vegan and while I haven't quite gotten the hang of that in combination with gluten-free and have to cheat on the veganism now and then, I eat as few animal products as I can help, and won't touch meats (especially since I react to them too). The symptoms are all like when I intentionally glutened myself as a test, but last time I checked white rice flour and flax seed meal is gluten-free! (used them when baking some gluten-free bread, and reacted to it) Is it possible it's just a damaged small intestine causing the problems, or is it more likely to be grain allergies?

To the 16 year-old who began this thread:

...MAYBE, just maybe?...could your Dad not want to accept that HE may have passed on the disease? My father didn't want to hear that the gene I have (DLA-HQ8) is probably from his genes. He also announced that he will not get tested, as he is too old, at 77, to change his eating habits, even though he has diabetes and neuropathy.

I think it's more a case of he doesn't want to accept that I have a disorder that needs lifelong treatment, but that's a possibility too. In all honesty I think I got the gene from my mother's side of the family, there's a very extensive family history of severe allergies, and there have been a intolerances to gluten in a few of my mom's siblings, though they were only temporary. Who's to say, though?

I'll certainly print that out and at least read it myself. Thanks for the link!

Wow, and I was just going to bring my own lunch to the MN state fair. I'll have to stop by that booth and pick up a guide, thanks for the tip! Good to see I'm not the only Minnesotan on this forum too

Minor amounts of oils are ok, I just can't use any added oils and I'm supposed to keep my overall fat intake at about 15% of my daily calories or below. It's not too bad though, because it helps me avoid more complex foods that I have problems digesting still because I was only recently diagnosed and I'm new to the gluten-free diet. Maybe I can find some kind of oil replacement... Thanks for trying anyway.

As for using egg replacer, that's a good idea. Do you have any brand recommendations? As for being a vegan, I am for the most part, but I sometimes have to eat something like egg whites or jell-o because I don't get nearly as much protein as I should if I don't. My nails are always very britle and never grow more than 1/16 of an inch beyond my finger because I'm a bit deficent in protein, and I don't want to end up getting seriously sick over lack of protein. Unfortunately, gluten-free has to come before vegan does, so I cheat when I have to but never otherwise.