New At This

[pullieq2]

Hi everyone! First, I am so glad I found this site. Sorry if this is a long post, but feel a little overwhelmed. Im a lil overweight and have put on 30 pounds in the past 4 months.

This all started 2 year ago. It was as if someone flipped a switch and stole all of my energy. I had stomach aches, head aches, fungal infections and lots of UTI's. The doctors did blood work, gave me meds and it kept comin back. They gave me B12 inj since it was a lil low. No good. I finally switched docs cause this one thought I was nuts.

New doc finally sent me to a urologist in June. By July I was schedule for a Kidney lithotripsy due to phosphate stones and a cyst on my right kidney. He didn't get all the stones. Then he sent me to a Gyno that same week for incontinence and ovarian cysts. I had a total hysterectomy, ovary removal and bladder reposition end of July. I felt so bad after both surgeries and had terrible stomach and head aches. My liver enzymes have been high, but they attribute it to the surgeries. My gyno finally sent me to a gastro doc.

Since seeing her, i had an Upper Gi endo in Sept. My small intestine is really inflamed and my stomach is inflamed too. Biopsy showed nothing. She told me to go gluten and lactose free and take an antibiotic called xifaxan. She scheduled a blood test, but I've been on the diet for 10 days already. I take the blood test tomorrow.

I have to say, for the ten days I've been gluten free, my stomach pain has stopped, my belching has almost disappeared and my energy has almost returned to normal. I feel like a fog has lifted. My only complaints...I still get headaches, prolly from the meds and when i eat meats, like pork or mess up on gluten i get massive headaches and a stomach ache and belching. I really need to know what the labels say. I have no idea what half the stuff on them mean. If it doesn't say wheat etc, im lost. And, why would pork bother me like gluten? Pork ribs and bacon? Its strange.

Nice to meet you all and I hope to learn a lot.

[pullieq2]

I forgot to mention, Im 41, so it's late onset. And my sinuses have never been so clear. No diarhea or constipation. Just gut pain, like a brick, bloating, belching and gas. Almost all gone.

[shadowicewolf]

It is also possible that you could be intolerent to pork. Something i haven't really heard of but who knows?

Another thing, pork often has a lot of fat in it. If you have an issue with grease, that would do it.

Have you been strictly gluten free? As in no CC, nothing?

[pullieq2]

I wouldn't know about CC. My hubby and son rely on me to fix meals and wont eat gluten free. I haven't had money to buy my own new dishes and they lay food on mine in the fridge. Not sure about all of my bathroom stuff, i have no idea what half the ingredients mean on the labels. I bought a lot of food items from a specialty aisle in Kroger. I live in a small town and sort of know someone who has Celiacs and he recommended it. But, like I said, the guys don't clean and they will never change their habits.

[rosetapper23]

Whenever I read that a person who has just switched to a gluten-free diet is reading labels, it sets off bells. You see, when you first start going gluten free, it really is best to just eat natural foods. That way, there are no labels to read, strange gums, or unusual grains that you're not accustomed to eating. It also cuts down on cross-contamination and just plain mistakes from being new at the game.

For many of us, eating only natural foods has become a way of life. It's easy to do--just eat fruits, vegetables, meats, nuts, rice, and nuts. It does mean that you'll need to cook more, but you'll feel great! You'll also need to get a new toaster and perhaps some new pots if yours are scratched. Don't forget that most lipsticks contain gluten as do many shampoos. Once your symptoms are gone and you're feeling more venturesome, you can add things like gluten-free tamari sauce, gluten-free pastas, gluten-free crackers, and gluten-free bread (Udi's, Rudi's, and Against the Grain Gourmet all make great gluten-free breads).

I'm glad to hear that you're feeling better--that is great news!

[nvsmom]

I'm glad you are starting to feel better so quickly. Unfortunately, because you have been gluten-free for 10 days, there is a chance that your celiac tests (I'm assuming that's what was ordered) will be negative, or a false negative. For cliac tests to be truely accurate, you need to be eating gluten uo until the time of the test. It is possible that 10 days gluten-free isn't long enough for the antibodies to leave your system but for some people it is. I think your doctor goofed by starting you on the diet right away.

That being said, with a biopsy that shows problems and symptoms that resolved with a gluten-free diet, it sure does look like you are a celiac. I'm sorry you had such a bumpy road to get here.

I did want to mention about the bacon, if smoke flavor is added, rather than smoke, that flavoring can have gluten in it. Be careful of that. I don't know about the ribs... except I'm drooling at the thought.

I would sneak gluten-free into your men's life as much as possible. Lots of potatoes, rice, yams, beans, coucous... stuff like that. It's hard to cook separate meals for everyone. Most spouse will go along with gluten-free as long as you use good substitutes like quality rice noodles over regular wheat noodles... stuff like that.

In the fridge and pantry, your food should be on the top shelves so crumbs can't fall into it. Rearrange the kitchen into his and hers shelves. Even my 7 year old learned not to use my butter so I'm sure your family will come around in time too.

Best wishes. I hope you continue to feel better.

[pullieq2]

I was a healthy eater before, but im always on the go. It would be impossible for me to cook all day. I generally only cook dinner. I need things that are quick and portable. I can't do fresh veggies, the gastro doc told me not to at this point. I've been left with fish and chicken, cereal, almond milk, bakery on main granola, gluten free chips and rudis bread, grapes, etc. I steam all my rice n veggies and i look at labels for chicken broth and worchestershire and seasonings. I can't eat just plain food. I don't like almonds or peanuts and can't afford walnuts, brazil or pistachios. Not enough for the amount you pay. This kind of thing is hard when you're poor. When the only reason you ate a lot of fluent was because it was cheap.

[pullieq2]

Well, I took my blood test yesterday. Nurse said it's for a full panel, whatever that means exactly. Apparently, its a super expensive test.

In the interim, I decided to do a gluten challenge, just to see what would happen. I ate a slice of bread with lunch yesterday...I will NEVER do that again.

After 30 min my breathing was off, my nose was running and I was shaky. By 3 hours I was belching, stuffy, felt like i had a fever,even tho i didn't, and I could feel a headache comin on. By bedtime i had a good head ache, but nothin i couldn't live with.

Well, I wake up at 3 am out of a dead sleep with the worst head ache I have had in my life. I thought my head would split in half and explode. Im a lil better now, but i feel spent and used up.

Next time i eat bread, it will be at gunpoint.

[1desperateladysaved]

I would recommend not eating gluten, except at gunpoint, even if your test comes back negative!

Keep us up to date.

[pullieq2]

Ty. I will. Just a waiting game now. I can understand why this is so important. That was the most awful feeling ever.

Although, Im curious to know why it just showed up out of the blue so late in life. No one else in my family has ever had this problem.

[bartfull]

Pullieq2, have you read the "newbie 101" thread? Check it out. And for quick and easy meals for yourself, use a crockpot and freeze the leftovers in seperate zoplock bags. You can pull one out of the freezer and microwave it at mealtime. That way there are no leftovers for your guys to cross-contaminate.

I like to cook my rice, add meat and some sort of vegetable, then I either cube up some cheese or just add butter. Sometimes I will use a baked potato instead of the rice. I just mush it up in my hands and then add the meat, veggie, and cheese or butter. Then into a bag it all goes. That way I only have to cook once or twice a week. You can even keep a tub of butter in the freezer until cooking day. Take it out to thaw so you can use it, then back into the freezer it goes so the guys don't use a gluteny knife on it.

If you don't like things so plain, you can always add whatever spices you like to the mix. Just make sure you use spices and not seasonings. Seasoning mixes often have hidden gluten. Pure old spices are safe though.

Do you use a toaster, or a toaster oven? If it's a toaster you can't use it because you can never get all of the gluten crumbs out. But if it's a toaster oven, you could just put your bread on aluminum foil before putting it in. Oh, and Rudi's is OK, but if you can find Udi's MULTI-GRAIN, I like it much better. Tastes like french bread and doesn't fall apart like Rudi's sometimes does. Just make sure it's the multi-grain and not the white.

Read as much as you can here, and ask lot's of questions. Also, feel free to whine all you want. We have all done it, and you won't find a more sympathetic, empathetic, or more supportive group of people anywhere.

(((((HUGS))))) to you.

[pullieq2]

Tyvm. Ill check out Newbie corner. So much to learn. Ill check back in when i get my test back.

[IrishHeart]

You said:

Biopsy showed nothing. She told me to go gluten and lactose free and take an antibiotic called xifaxan. She scheduled a blood test, but I've been on the diet for 10 days already. I take the blood test tomorrow.

It may be that your blood test will also be negative as a result.

I do not know why a GI doctor would tell you stop etaing gluten BEFORE a celiac panel.

Makes no sense at all--- since the test is looking for high antibodies. No gluten--no antibodies.

What is the antibiotic for? Do you have an infection of some kind? if not, why the drugs?

After a course of antibiotics, you should take probiotics to replenish the good guys.

[Takala]

I wouldn't know about CC. My hubby and son rely on me to fix meals and wont eat gluten free. haven't had money to buy my own new dishes and they lay food on mine in the fridge.

Oh, you mean they aren't housebroken yet ?

(S)he who cooks the food, calls the menu. They will find it in their best interests to keep the cook healthy.

That's a shame your toaster just broke. Be sure to get your own when you go to the store and replace it with a "his" and "hers." The folks at Goodwill can take the old one. And that was such a cute new wooden cutting board in the next aisle. Oh, look, a colander, on sale. You're now on the Kitchen Tool of the Week Plan. Holidays are coming for gift suggestions, too. Don't forget a sharpie permanent marker to mark all the gluten free tools as such. In Large Letters.

Oh, and for a rolling pin, until you snag a new one (and they do make them in ceramic, which you can clean thoroughly), just use a tall drinking glass, and put the dough between two sheets of waxed paper to roll it out. Don't forget to replace the bakeware if it has grunge on it and have a new category of Never Used For Gluten, especially if it is non stick coating. Don't buy really, really cheap, imported nonstick coating bread loaf pans, because I've had the coating come off on some of them, and the stuff is toxic to birds if the oven overheats. Watch out for newer pyrex glassware, it is not as nice as the older pyrex, which was sturdier. The newer stuff is relatively brittle, must be handled very carefully when it is hot, and you need to set it down on a towel or oven mitt... oh, yes, btw, WASH YOUR OVEN MITTS or replace them.

Untrained males will generally eat anything put in front of them. Example: Betty Crocker gluten free brownie mix. They don't really care that it is gluten free as long as it has butter and sugar in it. They will eat a gluten free pizza crust if you put a cup of shredded cheese and some basil in the dough. There are very few of them that would turn down spaghetti once you get the hang of the noodles (cook to al dente in salted water with a bit of oil, rinse, salt again, toss with olive oil before adding sauce. ) Trained males may be taught to actually make the the stuff itself.

Rice cakes and pure gluten-free corn tortillas can make bread substitutes for in a hurry occasions . Corn tortillas or gluten-free rice tortillas can also make quick thin crust pizza bases, or are also good with refried beans.

If you are having a vegetable problem, you can take a bunch of different kinds of vegetables, even leafy greens and a bit of herbs, put them in a blender or a magic bullet type cup, add a bit of water, and give it a whirl until all are blended up completely. Add a dash of salt, spice if you need it, a dash of vinegar or tabasco if you like that, and then either ice, to drink it cold, or pour it into a bowl to make fresh soup you can heat in the microwave. This is about 10 times more nutritious than anything in a can, and you can customize it, and you won't need thickeners. You can also add a bit of mashed leftover potato, canned pumpkin or fresh cooked mashed squash, or some yogurt to thicken it further. You may find in the beginning you don't want to eat vegetables, but you may also find that you don't do well on a lot of grain substitute carbohydrates.

-edited to fix html failures again.

[Takala]

I do not know why a GI doctor would tell you stop etaing gluten BEFORE a celiac panel.

Yeah, but.... somebody says this at least once a week around here. I've even had it happen to me, that I told a doctor I'd not eaten gluten in years, and they ran a panel anyway. At least that one came out negative, too. Of course, now, I am even more non- officially diagnosed than I was with the previous doctors, other than this doc accepts that I am really a gluten- avoider, who had this miraculous cure of my other problems.

[pullieq2]

Doc actually wanted the test same day, but due to a prob with my insurance i had to wait. The day before i took it, i asked about the possibility of there being a bad result, but she said there shouldn't really be a prob. ? Idk why she prescribed the Antis. We never got a straight answer about that. All she said was she could find no cause for all of the inflammation, put me on the diet, pills and ordered the test. When i looked up the uses of it, it is generally used for ppl with travelers diarhea (i don't have), or bacterial toxin build up in the gut when the liver is not functioning properly. Anybody's guess.

[IrishHeart]

Yeah, but.... somebody says this at least once a week around here.

and it still makes me shake my head in disbelief, Takala.

We read more current medical journal info than the whole lot of them.

[pullieq2]

Well, test is back. Can't believe she only did one.

tTA AB, IGA <1...<4 negative

So, according to this i show negative. So, Ill never really know tests, cause I won't go back on gluten for a new one.

I kind of decided to put it to the test. If non celiacs are intolerant and it is basically an allergic reaction, then it should work the same way. I ate a bite of a beer brat. Within 10 min I was having all the same reactions. I decided to take an allergy pill in hopes it may help. Lo and behold, it stopped some if the more severe parts of the reaction. It didn't go away, but it helped. So, its nice to know there is help, even if not a complete resolution. If anything, it confirms the NCGI.

[pullieq2]

Forgot to add my IMM was 142 out 81-463.