Losing Hope

[BelievinMiracles]

I've been gluten free for almost a month and a half with major slip ups here and there. At first it cleared up a lot of symptoms but lately they are back, but then again I'm getting sloppy with the diet. I find it so hard to keep up on this diet. I was never diagnosed with either celiac or gluten intolerance, just recommended to go on the diet. For diagnosed I've had a endoscopy with a biopsy of my stomach lining and blood testing which i believe were IgA, both negative. Since being gluten free I've still been getting sick and so my doctor is sending me to a rheumatologist. And I'm only going because I had an inflammation type test done and it was abnormal. I feel so confused to where I feel hopeless and I don't know what works and doesn't work anymore. It seems like everything is blending together and I don't know what's what anymore. I just want to feel better or normal again. I hate being sick, tired, sore, etc. Sorry I just needed to vent.

[Guest Happynwgal2]

Oh, how I feel for you! I know how it is to so very discouraging to be so sick and now know why. I wish you the very best, and just don't give up. Eventually you will find out what is making you so sick. It could be both gluten AND something else, like the case is with myself. Or it could be something entirely different than gluten.

You write that you have been gluten free for only a month and a half. For many people, it takes much longer than that to feel better after ingesting gluten for a life time - if that is what is making you so sick. I have been gluten free for almost two years, but it is only the past few months that I have felt well as far as my digestive track is concerned. I adhere to a strict no gluten and a "no many other kinds of food" diet, and it is only lately that it is paying off.

I discovered long before being diagnosed with Celiac that certain types of foods - in my case something to do with carbohydrates - got me sick. It took a couple of years before I realized it was gluten, though... So try to figure out what kinds of food make you the sickest; carbs, fruits, some veg's, diary, eggs and so on - it is a frustrating and time consuming path to walk, but the rewards are great when you finally figure it out.

Just hang in there, and keep asking questions - and seek answers on the Internet, and from trusted sources. If you are able to, visit with a naturopath since they are often more open to different diagnoses than regular MD's are - although many MD's are now coming around to the fact that many conditions cannot be dismissed by a quick trip to the drug store.

Good luck! And do not give up...

[Amyleigh0007]

I am right there with you. I am also getting really discouraged. It seems like ever since I went to the dentist a few weeks ago I have been sick. Until then I felt great. I was sick last night and I'm sick again tonight. I won't give up but I am so frustrated. I'm starting to not want to eat at all for fear of getting sick.

[Fiddle-Faddle]

Please hang in there. THose slip-ups are costing you big-time--your reactions will likely be WORSE each time you slip up, not better, and each slip-up is like a slip-up for a drug addict--it activates the gluten craving (did you know gluten has an opioid effect?), and makes you want it again.

If you can get past the 2-week mark and be STRICTLY gluten-free, you will likely feel much better. To help counteract those cravings, try Fritos and Guittard chocolate chips (but not together)--both available in bulk at your local Costco or Sam's Club.

Also, stay away (FOR NOW) from gluten-free breads, cookies, cakes, etc--the gluten-free flours they are made from are VERY hard for gluten-damaged tummies to digest, and will be much easier on your system once your tummy has healed (which usually takes a couple of months at the least). Eat plain rice and baked or mashed potatoes instead.

Good luck.

[Beth in NC]

Another one right there with ya! I took F-F's advice and I have had nothing in the last 24 hours but grits, rice, potatoes, chicken and grapes. I'm not even using any type of butter/margarine product. Something was getting me or just my intestines could not handle anything at all! I also started taking probiotics.

Something is helping. Isn't it amazing when we get excited over a semi-normal poop!

I had several opportunities for CC. Those Blue Diamond Nut Thins. I was also using up the last of some green beans I had canned last year. Shoot...I could have stirred with the wrong spoon or possibly double dipped into the salt I was using. Who knows. But I'm just staying away from anything like that from now on.

I refuse to just dump everything in the trash though. When my son comes home from 8 weeks in Alaska, I can give him some of the marinated meat I have in the freezer. But I've gotta get all possible CC things out of my house.

[curlyfries]

You haven't been at this long enough to reap any benefits from it, and if you're being "sloppy with the diet", you are not yet gluten free. Take a deep breath............now, start off with a basic meat, fruit and veggies diet for a while. This will get you started while you are trying to wrap your brain around this whole concept and you won't have to read labels. I remember how hard it was at first. I spent a lot of time reading old threads and collecting all the information I learned in a binder. This is how I was eventually able to shop and cook with confidence. It will get easier.

[Calicoe]

Yeah, count me in. I was just crying the other day on the cancer is a fungus thread because it felt like my entire life had become a fungus. I am sick all the time, and allergic to everything. But, I haven't been completely clean with my diet either, but it is sooo hard. Especially since I also can't do dairy. Right after my crying spell, I realized I had one of those little sores on the inside of my lip that always indicates a glutening. However, I can't blame it all on the gluten, because I am or was really tired and at the end of my rope. I felt like I couldn't take being sick anymore. But, it's a completely new day. I will get better.

[GFinDC]

The advice to simplify your diet is good advice. Here's some idears, free for the taking or not. Avoid any processed foods. Buy yourself a big old bag of brown rice or several smaller bags of different kinds of rice. Get yourself a bunch of interesting looking veggies to throw in the rice and some salt and pepper and garlic if you like it. Avoid spice blends and anything packaged with a sauce. So plain frozen veggies are usually good, but veggies with a butter tastin' sauce would be better left in the freezer. By using whole foods more you can eliminate a lot of time reading labels and that's good. Once you have been on a simpler rice based diet for a while you can add other things in one at a time and have a better chance identifying problem foods. Simplifying lets you cut down the number of things to worry about and that it is a nice benefit. You can always add things back just take a cautious approach. Learn to make several version of rice, red one with tomatoes and a white one with coconut milk and pineapple papaya etc is good. Give your body some time to heal and don't overwhelm your gut with hard to digest things for a while. The basic idea is to simplify though, at least to start out. I hope you feel better soon but you will need to take the bull by the horns and not take chances with your diet. Yes, just grab that 'ol bull and wrastle it down to the ground. You are in control of what you eat, so you can do it!

[Calicoe]

Thanks so much, G.F. in DC. That is excellent advice, and simplicity works for me. I also see you are in DC. There are a bunch of Gluten-free meet ups going on, but I haven't been able to go to any yet. Hope to see you around.

[BelievinMiracles]

Sorry I haven't been on but it's so refreshing to hear all of your guys' support. It can be super frustrating especially because you pretty much have to go cold turkey, and I bet a lot of time people second guess themselves. I haven't been to a nutritionist yet (i plan to once school starts because then I can make an appt that i'll be able to go to) but it didn't cross my mind that I should start eating the simpler foods like rice. I've been eating gluten free bread and all that other fun stuff and that would make sense if my body is damaged from gluten. Thanks for the advice. i didn't get a chance to go to my rheumatology appt because my parents recently switched insurance and now insurance doesn't cover anything where I live, which is also stressful because now it'll make it harder for me to figure out what's wrong with me if there is other problems. My mom makes it sound so easy to make an appt near my home town but that is 6 hours away, i'll have to take off of work and school to go. I know i have to hang in there but I really think i just reached my breaking point, getting sick is interfering with everything and I just want it to go away. But I'm determined to stick with this diet, hoping in return it'll eliminate me getting sick all the time. Thank you all for your support, you don't know how much that helps, haha well actually you probably do! Thanks again! and God Bless you.

[Fiddle-Faddle]

Thank you all for your support, you don't know how much that helps, haha well actually you probably do! Th

Yep--we've all been where you are! It DOES get better--much, much better, and very soon.

I'm betting that, it gluten is the culprit for you, you might not even need the appointment with the rheumatologist, as your symptoms just might disappear with gluten and casein 100% gone from your diet (and yes, wait on the gluten-free breads, and eat Very Simple Stuff)!