Still Adjusting, Too

[Strawberry-Jam]

Just a bit of venting I guess. Been gluten-free as I can since march and soy-free for a while too. My symptoms from a glutening is primarily terrible reflux that lasts for days, lots of gas/bloating, and then fatigue and headaches that set in a few days later. With soy I get depressed within 12-24 hours, and gassy immediately.

But my symptoms are not severe such as vomiting or D. I don't spend hours in the bathroom. Instead I just get reflux so bad that I can't eat more than maybe cream of rice for breakfast and brown rice or something small for dinner--I have to run on less than 1000 calories for three or more days and my chest hurts and I feel like I'm choking but it's invisible to others mostly so they don't get it.

My family's been really supportive but they're finding it hard to adjust too. Had to stop 'em putting eggs in our dinner that were cooked with pam, which is mostly hydrogenated soy oil. They know better but just weren't thinking. They also forget about cutting boards, but since they only use one main wood cutting board for bread (which I avoid like the plague), I think the rest are safe prolly. They're good as long as I'm in the kitchen cookin' with 'em but I don't trust 'em if I'm not there. They did give me my own separate cabinet for my gluten-free food, which is cool. And they buy me gluten-free SF stuff from a local dedicated bakery and they know not to eat things I bought special since it's expensive. But they find it really hard to take seriously sometimes. idk.

siiiiiigh. I cannot track down what glutened me. I just moved from OH to CO. Lived with gluten-eaters this whole time. I'll get better then worse, better then worse, and I cannot for the life of me figure out what specific things cause it. idk if I have other allergies or intolerances either. It's too much to worry about at once. My chest just hurts and hurts. idk if I'm getting little crumbs of CC here and there--entirely possible. I try to wash my hands and only use safe dishes and such, but you never know. There's crumbs all over the kitchen. Mama bakes most of her own bread. (not since I've been here, tho; I do know to steer clear of floury air.) I've had to eat at restaurants a lot during the move... I almost always pick specifically celiac-friendly places and then tell them about that and my soy allergy. One time I picked a non-friendly place I talked to the manager and got a plain steak cooked on foil with steamed broccoli and they were careful and all. Went and stayed at a monastery for a while and brought mostly my own food but told 'em about my allergies... I feel like, tho, my food I brought caused me more trouble than what they gave me. Know I musta got some gluten there tho. I know I did get soy'd (argh, it was in the soap, I didn't check beforehand)...

this makes no sense atm. whatever. just needed to type it out. I keep getting sick but people don't understand it ("you know reflux isn't only caused by celiac" -- yeah well then explain why it goes away completely sometimes no matter what I eat. and darnit I don't eat tomatoes and i don't drink or smoke and i don't do what you're not supposed to do with reflux and i still get it... because of effin' celiac). I don't understand it because I can never track down the source of it. there's too many variables. how do you start cutting down on all the variables without being more paranoid than you already are? paranoid enough that the fam thinks you might not be able to have dinners together anymore because it's too hard to be safe for you? idk. I feel totally paranoid but I can't explain it to people who aren't sitting here with an aching chest and all.

that's it. good night.

[notme]

i totally feel ya. i feel paranoid about my FOOD o my gosh don't touch my FOOD!!!!!!! WHY are you eating a samwich over my FOOD - why in God's creation are you shaking it??!! i am always swooping in and grabbing spoons before they hit the whole pan of FOOD and make it inedible. i have always been an alpha - i do not know how a shy or non-assertive type personality would be able to stay healthy with celiac

[LenaHyena]

I totally feel you about living in a family of Gluten Eaters. My partner has gone gluten-free with me so that we can keep our house safe but we went to a BBQ at my parents house for Memorial Day and it was a mess. Nobody understood why I wouldn't eat all the meat with the BBQ sauce on it (I checked the bottled and it had modifice food starch) I was chatting with my Aunt who has Crohns disease and my brother swooped in and sweeps his battered and fried shrimp through my cocktail sauce, my dad is a little more understanding and had boiled some shrimp for me, so of course I yelled "DUDE QUITE CONTAMINATING MY FOOD" and he got huffy "Oh chill, Lena, it's not a big deal." It is a big deal.

My mom gave me a lot of passive aggressive s$#& for wandering around the kitchen checking labels and not eating everything that was put in front of me.

It sucks having to eat with people who do eat gluten. I've only been gluten-free for a little under 2 months and I'm not looking forward to having to have a meal with my partner's mother who is very proud of her cooking and already dislikes me (She really liked my partner's first girlfriend despite that he didn't I will forever be "Not-Marianne")

It's a mess but hang in there, it sounds like your family is at least way supportive which is a huge start, you'll make it. Just keep experimenting. Everyone around here keeps saying you should eliminate/limit your lactose in the beginning, so that may be an idea.

Chin up!

[shadowicewolf]

OH i know that chest crap stuff. I suffer from it constently. Come to find out from my endoscopy today, my throat is really inflamed/damaged (can't remember which to drugged up). See if you can get on a good antiacid.

[Strawberry-Jam]

got off the antacids because of acid rebound from nexium. My reflux went completely away for a while but comes back now when glutened. I still have nexium I guess I could take when glutened... usually I rely on gluten-free Tums for the short term. only real help when glutened is to limit total food intake because any and all food will cause reflux at times like that.

reflux is mostly gone atm, but energy level now is saggin. good grief.

[Strawberry-Jam]

Like I said before, I have no idea when I got glutened or what by.

But today I basically slept all day. I went to bed at eleven last night, slept ten hours, got up for breakfast, slept for an hour or so, watched some TV, ate a tiny lunch, slept a few more hours, and then ended up sleeping from one pm to six pm (which is now). I'm tired enough to go back to sleep right now prolly, but I'm going to eat something first at least, and feed the poor dog.

Basically since I got up this morning I've been asleep more than I've been awake. My head feels funny. I don't have a fever or anything like that. Is this from gluten? I'm a pretty lazy person but not this freakin' lazy.

[viviendoparajesus]

Perhaps it is cross reactivity. Apparently my body is crazy and thinks yeast and buckwheat are like gluten so it reacts the same way. The test I had for cross reactivity also looked at seasame, hemp, sorghum, millet, amaranth, qunioa, tapioca, coffee, corn, rice, and potato. Issues with dairy are common - there are something like 24 proteins in milk, so there is a lot to react to. Casein (a milk protein) intolerance often occurs with gluten intolerance I have this too and maybe it is effecting you too. I have heard a lot about nightshades (potatoes, eggplant, tomato) causing problems but I have not noticed a difference when I eat them or when I do not. i am also trying to figure out what causes some of my problems - it is tough having celiac's and allergies and intolerances. is it a lack of education on your family's part? i always hope it is a lack of knowledge versus insensitivity. celiac's is so hard for people to get since it is invisible and internal and the annoying way even small amounts of gluten can have such lasting negative effects. i read about low stomach acid having similar symptoms as too much stomach acid. my doctor said that low stomach acid was a problem for me and had me take betaine and pepsin to remedy the situation. Best wishes!