Lost And Confused And Sad

[sandsurfgirl]

Also this morning when I woke up I almost fainted and I don't know why it was very scary. Have you had this.. I don't no if I got up to fast out of bed but left me feeling anxious.....

First of all make sure you are eating enough. I think I read on the thread you are just days into the diet right? Your body needs A LOT of fuel to do all the healing and fixing it needs to do. You need a ton of rest. I spent a lot of evenings and weekends in bed when I was healing. Hubby just had to take the kids so I could rest.

Dehydration is a big problem for people with autoimmune diseases and especially new healing celiacs. You must keep on your water intake. I mean be vigilant about it. Even now, 1 1/2 years into it, if I have a lazy or busy morning and forget my water I'm dizzy and shaky. I also need electrolytes once in awhile but when I was healing I had to have them every single morning. I could only tolerate good old Gatorade. I tried the natural electrolytes from the health food store and all of them gave me D and make me sick. I wasted a lot of money on trying different ones to avoid Gatorade because of the dyes, but I wish I had just stayed with the tried and true product and saved my money.

When I was going through that dizzy phase I drank Gatorade with breakfast every morning and then kept water with me all day long. I also ate every couple of hours and I still have to do that. If I wait too long to eat, I get the shakes. Today I didn't eat for 4 hours and I was really really shaky.

Are you on a clean simple diet to promote healing? You must eat simple lean protein foods, fruits, vegetables, plain rice. Maybe some brown rice pasta, a simple bread. I always tell people to try Gluten Free Pantry Basic Sandwich bread mix. It has simple ingredients and it tastes great.

Don't eat a bunch of gluten free cookies and stuff like that now. Your system cannot handle it. Don't try gluten free pizza and all that fun stuff yet. It will come later. Right now your body is on overdrive patching up all that celiac damage.

Hang in there! Tell people you were diagnosed by blood tests and leave it at that. Do not tell people too many details. It's none of their business and they will either annoy you or their eyes will glaze over. You have celiac. Gluten makes you very ill. If somebody doubts you and acts like an ass, just start telling them in detail about lengthy bouts of diarrhea. That shuts them up every time. Somebody told me I was "picky" about my son's diet so I gave her a gory story about how he accidentally ate one Milky Way bite size and had awful D for 3 days. While she was eating her breakfast. Be a b%$@# to me about celiac and you're gonna listen to some stories about poop!

[marie33]

Thanks for your advice. and how did you know I was going right for the gluten-free chocolate chip cookies....lol??? I feel a little better everyday...I don't feel dizzy today...My stomach feels good but I'm still pretty grumpy hopefully that will go away.. Thank you for all your advice..This is very helpful....I appriciate you taking the time to care enough to write to me and tell me about your experiences and how I can make this whole transition easier...

Hugs and I will no longer explain the celiac thing to anyone it just is going to be what it is... that is helpful advice that I will start using from now on......

[Jungle]

Don't be discouraged. The process would be wonderful if it was instant but....no luck. It takes time, lots of time before we are all better. And gluten withdrawl is a real thing. I felt horrible for the first week and since then I have been up and down.

It is hard to isolate all the sources of gluten and it is a learning process. I just think about how much healthier I am just making an effort to avoid all sources I know about and I find a new source every so often and remember this is a process.

[Poppi]

I feel for you. I chose not to get the testing done at all for a couple of reasons. The first one was that I simply could not put myself and my family through a 3-4 month gluten challenge. If I have a tiny crumb wind up in my food I am bedridden for a week and not much use for another week after that. The second reason was that I do not yet have life insurance or critical illness insurance and do not want a celiac diagnosis on my medical records. If it's not "official" then nobody has to know and with the possible long term health problems associated with celiac we should all have good critical illness insurance.

I also have 5 kids at home and a week ago we made the switch to 100% gluten free. We are lucky enough to have 2 kitchens. For the summer when everyone is home there will be no gluten in the house. None. Upstairs kitchen or downstairs. Once school starts again we will allow our three teenagers who share the downstairs kitchen to prepare themselves gluten lunches for school but they have to clean up after themselves really well and eat their food outside the house. I don't ever prepare food downstairs so cc shouldn't be an issue. If I start getting sick again once they are making gluten lunches then the gluten will go bye-bye again.

Upstairs is now and forever 100% gluten free. That's where I cook for everyone. It's also where my 2 younger kids (2 and 5) eat and spread their mess and touch everything. I was constantly getting glutened. I'd just get to the point where I was feeling awesome for a couple days and BAM! right back at the bottom again with a 2-3 week climb back to feeling good. Not worth it.

I won't lie, my little kids are a bit whiny and miss their sandwiches and Campbell's chicken noodle soup but they'll get over it. My health is more important than them wanting PB&J on squishy bread. Now that they are gluten free I can kiss them and cuddle them and not worry about what they have eaten.

You can do this and it sounds like you are lucky to have a supportive and loving husband. That will make all the difference in the world. Good luck and feel free to message me if you want some tips on feeding a family of 7 gluten free. I've only been at this for a few months myself but I've done a heck of a lot of research and learned quickly.

[josh052980]

Well I have had two negative celiac blood tests. But I know this is what I have. I get sooooooooo sick from wheat. Symptoms are severe bloating,alternating constipated,diarrea,acid reflux,ibs,gastritis,anxiety,depression,exhaustion,fatigue,muscle aches,joint aches, stiffness,nasea,stomach cramps,pain or severe discomfort in my stomach,extreme irritability,mood swings and brain fog, geo graphic tongue, skin itchiness with no rash, and constant sinus poblems,itchy throat and ears inside most of the time...

If I avoid wheat almost all the symptoms disappear and the ones that don't are 80% better.

You described almost exactly what I go through! You're not alone here, we'll all be here for you!

[TeacherInTexas]

First, you neeed to forget about the blood tests....and ran the other way if they mention surgery to get a piece of your intestines to test......

You need to ABSOLUTELY do a stool test for gluten .....they are not too expensive....easy to do....

I didn't even go the blood test route BECAUSE I heard they were highly inaccurate. They are about 3 labs in the country that did the stool test back in 2006

If you think about it...most of the immmune system is in the intestines....not the blood.....so yup....the stool is where they find it.

Here is an article...a must read that can help you get the test without begging a doctor (aren't they a pain)

Open Original Shared Link

When I showed my doc the results she argued that I went out of the medical system to get the results...HELLO>.....Dr. Kenneth Fine was the head of departments of HOSPITALS......PHD people run the stool tests...not lab flunkies as in many labs throughout the county

By the way...most blood tests are highly inaccurate....the lyme test catches about 31% of lyme infected people on one test and only 18% on another....if even that much. I have SO MANY things wrong with me....it is completely ridiuculous that I went through like 14 doc....

But yup...AFTER you do the stool sample test and go gluten free and you STILL AREN"T 100%

Want to find out what else is wrong? Hmmmmmmm?

GOOGLE or youtube QXCI scan THEN.....youtube rife machines.

My QXCI scan confirmed the lyme disease...and listed all the stuff below (WHICH I ALREADY KNEW BY THE WAY)...though the scanner person didn't since us onery Texans like to check things out.

I DO NOT think the QXCI can heal (since I think they are knock off rife machines)....but diagnostic possibilities......priceless

quantum physics rocks...

*******Have begun testing a rife machine on me....but have only had a few days so no conclusions yet on it...

Gluten Intolerant

Heavy Metal Toxicity

Ehler Danlos

Lyme Disease

Autoimmune - unkown origin

osteopenia

misaligning spine/extremely weak muscles/numbness

hypertension

Allergies to EVERYTHING

gigantic sinus cyst in sinus cavities

Lipid something....hope I don't have that...wasn't good

Problems with hormones (hundreds of hormones run the entire body)

problems with potassium

Past kidney stones (current crystals)

Extreme fatigue

Extreme pain

Magnetic field is messed up

[Ben Y.]

I understand your pain in seeking a diagnosis. Mine is bad enough that the why I started seeking a diagnosis was that I was vomiting blood on a daily basis. I tested negative for celiac with 2 tests as well. When I tested negative the second time, I was told by my doctors to "eat bland foods like bread and plain pasta." I listened to them, and started eating bland wheat based foods almost exclusively. Unsurprisingly, I got sicker.

I was in and out of the emergency room 10 times in 9 months, had a colonoscopy, 2 endoscopes, several X rays, a few ultrasounds, and more blood tests than most can imagine. The pain I was experiencing was incredible. I was n multiple oxycodone a day, and my indicator for going to the ER was when oxycodone was insufficient for managing the pain. I was 22 at the time. Finally, on the second endoscopy, they took biopsies. The biopsy suggested that I had a few indicators for celiac disease, so they suggested I try keeping gluten free. Within a week I had cut my oxycodone intake in half, and after a month of doctor ordered rest I was back on my feet feeling better than I had my whole life. The best advice I can offer is to be persistent, and just start on the diet anyway. I know better than most that it feels hopeless right now, but it does get better. I promise.

[Sammyj]

So bummed tonight. I'm so sorry to complain but I just really need you all. I'm feeling a little discouraged tonight. I have been off Gluten for about 3 days now and tonight I'm seriously bloated and I feel sick to my stomach. I don't know why....this is what confuses my mind.....

It took me a while to realize, what I eat today can and will effect me weeks later.

I am 12 days gluten free, and the last two have been very bad. Bloated and gassy again. But this two will pass.

[lilu]

It's gonna be ok. When my DH went gluten-free he felt great for a few days, then super crappy for a day or two, then better again... There are ups and downs during healing. I'm no expert, but my personal theory is that part of healing is detoxing, the body letting go of stored poisons and garbage. On those days where your system decides to throw out a load of garbage, it can make you feel pretty icky. But those days do pass, and slowly they become fewer and farther between. One morning you'll wake up and realize it's been weeks, or months, since you had a dumping day. That is a golden moment! Keep the faith. You're moving in the right direction.

Hugs,

Lilu

[come dance with me]

It took about 4 months for my little girl to feel better after being gluten free but now she's on top of the world! They told us it could take up to 12 months but because she's so young and because we had a diet of mainly rice and fresh vegetables anyway the damage wasn't too severe so it didn't take her as long to feel better.

[MacheHill]

I hear ya. I'm sorry you're having so much trouble. I am too. Have they checked into fibromyalgia? I have been diagnosed with that as well as celiac disease.

[love2travel]

I hear ya. I'm sorry you're having so much trouble. I am too. Have they checked into fibromyalgia? I have been diagnosed with that as well as celiac disease.

Me, too! I feel your pain. In fact, if I were to choose between the two I would find celiac to be easier to deal with than the pain of FMS. NOT easy having both, that is for sure.

Hang in there, though. There are better days ahead!

[eluvsphish]

So bummed tonight. I'm so sorry to complain but I just really need you all. I'm feeling a little discouraged tonight. I have been off Gluten for about 3 days now and tonight I'm seriously bloated and I feel sick to my stomach. I don't know why....this is what confuses my mind.....

I just recently went gluten free and I was SO sick at first. I thought I was going crazy because it made my hives SO much worse. I was sick and miserable until about day 5 or 6. Just remember that your body has had that "crap" in it for many, many years. And, it will take a while for your body to get back to any sense of normal before you will fell better. It has been 3 months for me now and I feel better than I ever have in my entire life.

[faithforlife]

So bummed tonight. I'm so sorry to complain but I just really need you all. I'm feeling a little discouraged tonight. I have been off Gluten for about 3 days now and tonight I'm seriously bloated and I feel sick to my stomach. I don't know why....this is what confuses my mind.....

Everything Ive read says it takes a lot longer than 3 days to experience all symptoms going away. Your body will continue to auto-immune for quite awhile. Stick with the diet for more time. Ive been on it for over 9 months and am just noticing big changes! Plus its very possible there was still some traces of gluten in your kitchen.

[mamaw]

Hello

Have you tried some digestive enzymes half hour before eating?I use digest gold...And remember it takes a while to detoxify your body.

Glad you are on your way to better health....

blessings

mamaw

[Skylark]

So bummed tonight. I'm so sorry to complain but I just really need you all. I'm feeling a little discouraged tonight. I have been off Gluten for about 3 days now and tonight I'm seriously bloated and I feel sick to my stomach. I don't know why....this is what confuses my mind.....

Three days is not long in the scheme of gluten intolerance. My gluten reactions can go four or five days. By day three after getting glutened I'm an exhausted, anxious mess with a stomachache.

Your system has to settle down, antibodies go away, inflammation lessen, and your intestine has to rebuild. It's a process. Some gluten intolerant people get relief fairly fast, but if you're really celiac it may be a couple months until things really start to settle down. Stick to it!

Edit: OK that was weird. Marie's post showed as the last in the thread a moment ago. Now I'm realizing I replied to something from a few months back. Oops. I hope you're feeling better!

[Boss'Wife]

Hi all, just wanted to vent a little I am pretty new to this site which I love, I was diagnosed almost two months ago and it's been so hard. I never thought of the little things I need to watch for like using the same spoon in a sugar bowl as my husband, fixing my grandkids a pb&j sandwich then using the jelly or pb a day or two later for myself not thinking about the contamination factor from the knife I used to spread the Pb&J on their bread then stick back into the jar to get more. Or think about kissing my 8 month old grandson or five year old grandson after they have had a cookie or sandwich or something....

I am also frustrated that people I thought were close to me think I am faking when I say I don't feel good, or I have a headache, I'm exhausted !!!! I feel like crap 97% of the time I hate it, I have no energy or desire to do anything.....Sorry just having a super rough night....

Hugs to all <3

[rosetapper23]

Don't feel bad about telling us how you feel--we've all been there at one time or another. It's very hard at first to remember all of the necessary precautions that have to be taken. Many of us mark our own peanut butter and jam jars as well as mayo and other condiments. Actually, for ketchup and mustard, the squeeze bottles are great. Mayo squeeze bottles are good, too, but many of us can't eat most mayos because of the soy (could be what is making you feel poorly, too). Smart Balance has a mayo that is soy-free.

Your fatigue and complaint that you feel only 3% better is worrisome to me. Has your B-12 level been checked? How about your Vitamin D, folic acid, and iron? Also, your thyroid should definitely be checked. Since a B-12 deficiency can cause gastro symptoms, as well as fatigue and headaches, you might consider going down to the store to buy some sublingual Vitamin B12 tablets--just check to make sure the bottle says gluten-free on it (most do). Try taking 2000 mcg twice a day to see if you start feeling better; if so, you'll know that you ere deficient. Since B12 is a water-soluble vitamin, the body doesn't store it, so you'll need to make sure that you take it daily....and you'll feel the beneficial effects of the sublingual tablets immediately. Another common symptom of B12 deficiency is the feeling as though you're gulping for air.

I hope you're feeling better soon!

[ironcross]

I have had it for 20 years and no one could or did figure it out until last year. Im a father of two and a Fitness Therapist and struggle daily. I use an iphone application i downloaded, so if Im at the grocery store and even question it, i use the application. It shows me any type of food gluten or wheat free, its a great application to have. there is even one for Gluten wheat free eating out,it shows me all the resturants and what they have gluten/wheat free. You may want to try it. God Bless, please type if I could help you out. God Bless.