Gluten Paranoia

[Gutbomb]

So now I am completely paranoid that I am not eating gluten free. I try researching all the ingredients but there are always a few I am not sure of. I am still really tired and crampy. No D though. I do have the worst heart burn. So it makes me think I am getting gluten even though this is only my second day going gluten free and I must admit last night I did finish up my favorite ice cream which has gluten in it.

I have been through so much I am just afraid this isn't going to work. That this isn't my problem.

Am I crazy?

[GlutenGalAZ]

Once you go completely gluten free you can start to tell the difference, if it is working. If you are still eating gluten then your body is not getting the chance to heal.

When I first went completely gluten free I almost felt worse then during the 1st month things started to improve a lot. If you are willing to give it a try and see it if the diet helps then that is great. A lot of foods you can look at their website and see what they say about gluten or you can do a search on here (a lot of foods have been talked about). During this you can learn to read labels (takes a little while but does get easier). You can also call the 800 line on the food item you are wondering about.

Just wondering -- Why do you say:

QUOTE: I have been through so much I am just afraid this isn't going to work. That this isn't my problem.

What type of symptoms are you having?

Good Luck

[Beth in NC]

Amanda,

There's no point being paranoid and then going and finishing the ice cream. I understand the paranoia. I've only been at this for 2 weeks. I told my husband that I feel like I have self imposed OCD...I worry about where I set a spoon down when I'm cooking, since we are trying to have a "blended" kitchen. Actually, the kitchen is supposed to be off limits, but my husband and son can eat glutened products at the breakfast table. Well, tonight I was eating dinner with my husband and laid my knife down on the table. Then it dawned on me that it was "their" table. I changed knives. I was afraid of a stray crumb. Then I remembered to put the new knife on the edge of my plate when not in use.

It's hard, but what is harder is feeling like crap when you eat something that is like poison to you! I used to make my own whole wheat bread. I miss it, but I miss feeling my own age more. I don't like feeling like a senior citizen at 45 years old. I could see myself mirroring my mother and I don't WANT that!

I would suggest that you take it a few days at a time...make you a menu for all meals and snacks. Keep your items few and simple. No prepackaged stuff. Plain meat...you can just use salt and pepper at the beginning. You can bake it, roast it, crock pot, or grill...once you clean the grill really well. Simple vegetables. Season with spices that the people hear have told you are ok. Eat eggs...if you don't like to have to cook them at the time, boil several and keep them in the frige. I did 6 at a time. I would peel a couple at a time and use a new container of Hellman's mayo and make some egg salad. I just ate it right out of the bowl. I like grits...I'm from the south, what can I say!? Eat simply for a couple weeks and see if you can tell a difference. But I tell ya, planning ahead makes all the difference in the world. I cooked some chicken breasts in the oven, several of them, and kept them in the fridge to use on salads.

My point is...first of all, you CAN do this. But you have to decide to either feel gross or to take the bull by the horns and just do it.

I want a cookie right now really badly...but I won't get one...even though there are tons of them for my family in the pantry. Because it will make me sick...plain and simple. I'm just STARTING to feel better and I don' t want to go back.

[Gutbomb]

6 years ago I started have D, occasional vomiting, gas, cramping. I have always had a "weak" stomach but this was so bad I had to drop out of college. That is why I went to the doctor to start. After a bazillion test, a blood test showed that I had UC. So the Doc told me that is what it was even though my colonoscopy was clean. He gave me meds, asacol, which didn't work. So then he gave me something for IBS, hycosamine. Well that Doc retired and I got sent to a new Doc. I went to see him a few months later because I was still having stomach issues. Hedid another colonoscopy and said thateven though the blood test says I ahve UC that I don't it or at least any internal signs of it. He told me besides the hycosimine there was nothing he could do for me.

Prior to all this I had been put on antidepressants for anxiety, depression, ADD and fatigue. I have tried a whole bunch but when I got on lexapro it worked really well and for the most part in the past 5 years I have only had one IBS flare up.

Fast forward to this January. I tried the South Beach Diet. I eliminated all grains and probably a lot of glutened products as well for 2 weeks. After the 2 weeks I started to slowly add carbs back into my diet. The first thing I added was sarah lee delightful whole wheat bread. About an hour after eating it I got a head ache. The next day the same thing. Thought it may have been the HFCS so the third day I had wheat bulgur. I got very sick, migraine, fogginess and my face got really red. Stupid me didn't put it together as an allgery or intolerance to wheat until later. I kept eating it and eventually everything went back to normal until I went off of lexapro this month. Hubby and I want to start TTC and I knew I needed to be off of it. Now my IBS is back and I think it is worse. I started talking to my PCP about the whole wheat thing and she said she wanted to test me for wheat and gluten allergies.

I really just want an answer and to feel better but considering over the past ten years I have had so much testing done not just for my stomach but the fatigue and generally feeling cruddy and everything coming back negative, I am not expecting anything different from that.

BTW GlutenGal...your doggie picture makes me laugh!!

[Donna F]

So you haven't yet been blood-tested for Celiac?

My symptoms were mainly neurological for many many years. Headache and fogginess were big symptoms for me. Years ago a doctor swore I had MS b/c of the symptoms I was experiencing: numbness, lack of coordination, weakness, pain, twitching, etc.. Then it started affecting my blood sugar. I was crashing severely almost daily, so I was sent to an Endocronologist. He was the one that discovered the anitbodies for Sprue, but insisted I didn't have it b/c he assumed the main symptom was "d". I went on the diet anyway and IMMEDIATELY felt fantastic. Symptoms started to diminish right away and were completely gone after a few weeks (it took me a few weeks to fine-tune the diet. I messed up a few times). So it may make some people feel worse at first, but I felt improvement immediately. I hope that is encouraging to you. Btw, I eventually went off the diet and gradually the symptoms came back. A different doctor confirmed I had Celiac and I went right back on the diet.

It's hard to believe something like a crumb can make you so sick. It took my mom years to accept that. I totally sympathize with Beth's post. It's like having OCD at first - you constantly have to be on guard, but you really will get used to it and it won't drive you insane anymore! And just ignore the ignorant folk (like my mom) who insist you don't have to be so careful! It'll be easier to treat gluten like poison (which is essentially how your body reacts to it) and avoid cheating and get past the silly comments from the ignorant once you've been faithful to the diet a while and are feeling your best again!

Don't give up! Get on your way to feeling good again and get that gluten grub out of your life!

Btw, Beth, if you are craving cookies, try Pamela's. Feeling good is worth a splurge. Dark chocolate chocolate chunk, or peanut butter chocolate chip, or chocolate chip.... Mmmmmm...... You really don't have to deprive yourself on this diet. I am 7 months pregnant and doing very well. No hunger or craving here!

You'll find great substitutes for all your favorites here. Just ask away! The gluten-free products section was my daily reference when I first started the diet. Oh! And I just discovered that Amazon sells several hundred gluten-free products at the lowest prices I've ever seen - and free shipping with orders over $25 (which is really easy to do b/c everything is sold by the case). Stock up! I don't usually buy that many gluten-free specialty foods, but being pregnant has made me eat tons more than I used to: gluten-free gravy, bread, prezels, crackers, pasta, cereal, cookies. After the pregnancy I'll have to put my budget on a restricted diet

Take Care~

[Beth in NC]

Thanks for the cookie suggestions. If I wasn't fat, I'd likely take you up on it!!

Only having the bad ones in the house for my men are helping ME not give into the sweet craving! I DO have some Pamela's brownie mix here though....I'm thinking about making them for a gathering tomorow.

Do ya get the same thrill licking the bowl from a Pamela's mix?

[Donna F]

Thanks for the cookie suggestions. If I wasn't fat, I'd likely take you up on it!!

Only having the bad ones in the house for my men are helping ME not give into the sweet craving! I DO have some Pamela's brownie mix here though....I'm thinking about making them for a gathering tomorow.

Do ya get the same thrill licking the bowl from a Pamela's mix?

I am all about convenience right now, so no bowl-licking for me....

I forget there are overweight issues for some people with Celiac. I've always been so thin and attributed it to the Sprue, but even after more than 4 years on this diet I am still thin, so I guess the issue isn't gluten.

Wish we could do an online transfer - I'd love to put on a few more pounds!

[laurelfla]

I just wanted to add in that YES, I get a big thrill from licking brownie batter! And if you can find Gluten Free Pantry Truffle Brownies (they've become scarce around here), I think that they are slightly better than Pamela's, although I am a die-hard Pamela fan.

Gutbomb, your symptoms sound very Celiac-ish... if you can get the blood test done, definitely do it. It is hard I am sure to expect any relief, but many, many people have found that this diet is the answer to their problems. Maybe it could be your solution!

And as far as eating the ice cream, the diet is a huge adjustment, and without a diagnosis maybe it is hard to take it completely seriously... in the midst of my testing and waiting for results, I ate the pudding out of some banana pudding... and then, since I really always liked the cookie part best, I ate the wafers as well! I didn't realize until later when I learned more about the diet and Celiac what a bad choice that was. Just make the decision to get the blood testing done and then if needed go whole-hog gluten free! This forum is a great place to get help and tips. Hope you feel better soon.

[RiceGuy]

Well, after only two days, I wouldn't expect to see much improvement. That's not to say it never happens that fast, but many need more time to really feel better. Also, a lot of the members here have found it necessary to avoid dairy at first. It may be added back into your diet later, though it's not a guarantee. If you don't have any trouble with dairy, consider yourself fortunate. But do keep it in mind in case you don't get relief of all symptoms.

[elonwy]

Just an extra reminder, if you are going to get the blood test, you have to stay on gluten for that. Going gluten free before your test can give you a false negative.

That being said, it takes a while to feel better, especially if you've been sick for a while. It does get better though

[Beth in NC]

Well, after only two days, I wouldn't expect to see much improvement. That's not to say it never happens that fast, but many need more time to really feel better. Also, a lot of the members here have found it necessary to avoid dairy at first. It may be added back into your diet later, though it's not a guarantee. If you don't have any trouble with dairy, consider yourself fortunate. But do keep it in mind in case you don't get relief of all symptoms.

She can't even count two days at this point, if she ate the ice cream. I would think she would have to start over, really.

[GlutenGalAZ]

Prior to all this I had been put on antidepressants for anxiety, depression, ADD and fatigue. I have tried a whole bunch but when I got on lexapro it worked really well and for the most part in the past 5 years I have only had one IBS flare up.

Fast forward to this January. I tried the South Beach Diet. I eliminated all grains and probably a lot of glutened products as well for 2 weeks. After the 2 weeks I started to slowly add carbs back into my diet. The first thing I added was sarah lee delightful whole wheat bread. About an hour after eating it I got a head ache. The next day the same thing. Thought it may have been the HFCS so the third day I had wheat bulgur. I got very sick, migraine, fogginess and my face got really red. Stupid me didn't put it together as an allgery or intolerance to wheat until later. I kept eating it and eventually everything went back to normal until I went off of lexapro this month. Hubby and I want to start TTC and I knew I needed to be off of it. Now my IBS is back and I think it is worse. I started talking to my PCP about the whole wheat thing and she said she wanted to test me for wheat and gluten allergies.

BTW GlutenGal...your doggie picture makes me laugh!!

Thanks he is sweetie He likes to grab as many toys as he can and also likes to hog them so our papillion has to chase after him haha.

I never had anxity until last year and it got REALLY bad. After taking all gluten out I started to feel better in about 2 months then even more as time went by. Growing up I always had stomach problems and my dr's did a lot of tests and just said acid reflux. The medicine never worked and I never really gave them a try though b/c I would get the worst stomach pains ever after taking them that I would stop with jus the 1st 1-2 days of trial pills they gave me. After going gluten free I don't get the heartburn anymore.

I would say if you aren't wanting to or can't get tested for celiac I would just try to be really strict with eating and being gluten free and stick with it and see how you feel in a month. You should be able to tell some differences in that time and things should keep getting better after a month time as well. You might find (as others do) you have other food intolerances (I have) and you can eliminate those as well and see how things go.

Hope you can figure out what is going on. Good Luck with everything.