How Do You Know?

[7-cody]

I'm sorry, I'm in a negative mood atm. I know there's been a million posts on this topic already but how do you know? How do you guys know how real Celiac is?

From what I've seen, every "Celiac" out there goes gluten free but still has so many problems.

Is there anyone that has gone gluten-free and feels GREAT? Is it possible?

I started the gluten-free diet on 7-27, and even went dairy free for a few weeks as well until my enterolab result for dairy came back as negative. I was tested positive for gluten, though. It's now the 3rd of October.

I still feel drunk, lightheaded, confused, dazed, brain foggy, can't think right, like I'm somewhere else in my mind all the time and not in the real world.

It's been TWO MONTHS.

On the 10th of September, I ate a Cliff bar. Immediately, and it was amazing because it happened so fast, about 10-15 minutes later I suddenly felt tired as HELL. I'm always tired, but I mean tired as in couldn't stay awake. My head started pounding a little. I layed on the couch for about a half hour wondering what the hell was going on. So, I thought about everything I'm eating (I prepare almost all of my food, except for gluten free salsa and what not) and the only thing I could think of that may contain gluten was the Cliff bar.

Now, the Cliff bar says it's wheat free. Looking at the ingredient list, it looked gluten free as well. I grabbed my laptop, did a search, and discovered that indeed, the cliff bar is NOT gluten free.

That's how I know it's real. That's how I'm a believer. What about you? How do you know? And, shouldn't I feel any better after TWO MONTHS of being gluten free? I'm sorry, it's hard to keep faith when you don't feel anything different. I feel drunk, lightheaded, forgetting simple words, like I'm out in this other world and irritated, angry often, sad, mood swings, etc. How do you know? What if I don't get better? What if...

[melmak5]

I was diagnosed June 28th and I would love to know when it gets better.

I know people say "it takes time for your body to heal" and I get that, but I need a smidgen of progress here. Throw me a frickin bone.

cody - maybe our bodies are just taking the slow road to being super healthy and awesome (that's the delusion I am rocking today)

[buffettbride]

Sounds like you still might be getting some gluten or have issues with other foods like dairy or soy.

I know gluten-free diet works because 6 months ago my daughter was sick with no hope in sight and after 4+ months gluten free, I have a new child who is healthy and bright. Celiac is much more, though, than just gluten-free. It's a constant process of monitoring your GI health and how it effects other parts of your body. Every accidental glutening is a step back and can trigger other affects. For example, she has never had a problem with dairy, but after 3 accidental glutenings in 2 weeks at school, for some reason her body isn't tolerating milk very well right now. It's a non-stop balancing act.

The healing process is different for everyone. You have been gluten-free just over 2 months. If you are an adult, you might start feeling a little better right away, but it could take much longer for the rest of those symptoms to dissipate.

I do hope you start feeling better soon.

Have you been diagnosed as Celiac by a doctor or just as gluten-intolerant via Enterolabs?

[kbtoyssni]

Celiac is real to me because as soon as I cut out gluten, I got my life back. I was bedridden before and couldn't concentrate and was depressed and in general a mess. And now I'm living my life and have more energy than I've had in years. I'm one of the lucky ones that went gluten-free and felt better immediately which I think is why I'm so positive about this whole thing. I'm lucky because I don't have any other food intolerances, except peanuts which wasn't too hard to figure out. One problem is that many celiacs have so many other health issues due to years of non-diagnosis that just going gluten-free doesn't always make you 100% better. After two months, it might be time to take another look at everything you're eating and all your pet food/pots/pans/personal care products to make sure they're gluten-free. After another month or two I think you have to keep looking for more answers in addition to the gluten. I wish I could be more helpful here.

[horsegirl]

Have you looked into ALL possible sources of gluten, such as your vitamins, supplements, other medications, toiletries, etc? If you are super diligent about all of that, have you looked into other food intolerances too? I was doing great on the gluten free diet, but would still have increasing muscle & joint pain, along with other symptoms. I had Enterolab test me for soy, & BINGO - super high levels. So I cut that out, & was feeling better for a bit, but now am having pretty bad symptoms again, & I'm suspecting something else I'm eating. It's SO hard, because it's hard to know what sets us off.

And, don't forget that the more serious the damage from the gluten, the longer it can take to heal (I heard from one source that it can take up to a year or longer!)

Good luck!

[7-cody]

I was diagnosed June 28th and I would love to know when it gets better.

I know people say "it takes time for your body to heal" and I get that, but I need a smidgen of progress here. Throw me a frickin bone.

cody - maybe our bodies are just taking the slow road to being super healthy and awesome (that's the delusion I am rocking today)

Sounds like you're in the same boat as me. I keep convincing myself that it just takes longer than two months and I'll feel better. But like you said, and like I was saying, wouldn't I feel ANYTHING different? I should be feeling somewhat better by now...

Sounds like you still might be getting some gluten or have issues with other foods like dairy or soy.

I know gluten-free diet works because 6 months ago my daughter was sick with no hope in sight and after 4+ months gluten free, I have a new child who is healthy and bright. Celiac is much more, though, than just gluten-free. It's a constant process of monitoring your GI health and how it effects other parts of your body. Every accidental glutening is a step back and can trigger other affects. For example, she has never had a problem with dairy, but after 3 accidental glutenings in 2 weeks at school, for some reason her body isn't tolerating milk very well right now. It's a non-stop balancing act.

The healing process is different for everyone. You have been gluten-free just over 2 months. If you are an adult, you might start feeling a little better right away, but it could take much longer for the rest of those symptoms to dissipate.

I do hope you start feeling better soon.

Have you been diagnosed as Celiac by a doctor or just as gluten-intolerant via Enterolabs?

I'm 19 years old. I was tested by Enterolab, my levels weren't way high or anything. In fact, they were barely above the normal range of 10 or whatever.

I guess the number doesn't matter, or so they say. So I was tested positive for gluten. As you can see, I have several symptoms, mainly in with my mind and energy.

I really liked what you said about celiac though. That makes so much sense. The problem I'm having is what do I do now? I was tested negative for casein by enterolab. Now what?

Celiac is real to me because as soon as I cut out gluten, I got my life back. I was bedridden before and couldn't concentrate and was depressed and in general a mess. And now I'm living my life and have more energy than I've had in years. I'm one of the lucky ones that went gluten-free and felt better immediately which I think is why I'm so positive about this whole thing. I'm lucky because I don't have any other food intolerances, except peanuts which wasn't too hard to figure out. One problem is that many celiacs have so many other health issues due to years of non-diagnosis that just going gluten-free doesn't always make you 100% better. After two months, it might be time to take another look at everything you're eating and all your pet food/pots/pans/personal care products to make sure they're gluten-free. After another month or two I think you have to keep looking for more answers in addition to the gluten. I wish I could be more helpful here.

Your story of how you felt better gives me hope. Thanks. Would you say you feel uh huh, okay, good, great, of fabulous now?

Have you looked into ALL possible sources of gluten, such as your vitamins, supplements, other medications, toiletries, etc? If you are super diligent about all of that, have you looked into other food intolerances too? I was doing great on the gluten free diet, but would still have increasing muscle & joint pain, along with other symptoms. I had Enterolab test me for soy, & BINGO - super high levels. So I cut that out, & was feeling better for a bit, but now am having pretty bad symptoms again, & I'm suspecting something else I'm eating. It's SO hard, because it's hard to know what sets us off.

And, don't forget that the more serious the damage from the gluten, the longer it can take to heal (I heard from one source that it can take up to a year or longer!)

Good luck!

I certainly have. I recently started taking a liquid dropper type sublingual vitamin B12 that goes under my tongue. Forgot the brand name on it, but in the ingredients it was just vitamin B12 and something else, I forget. Also, started taking a powder packet that I put into my bottled water every morning, which is electrolytes and vitamin c's and what not. From the ingredient list, it looked safe to me. Are these things I should call up on? What are the chances of my vitamins having gluten in them?

edit: it sounds like a lot of celiacs have soy intolerances... should I get tested for that as well? and can soy cause constipation?

[Kaycee]

I know it is real, but I have at times I wondered whether it was all in my head.

To start with I felt better immediately, but then I didn't feel any more improvements. Like everyone says, it was probably because I was healing and my stomach was coming to terms with everything.

Remember, it has probably taken us years to get to where we were before we cut out gluten, and it should not be unreasonable to expect it to take a little time to come right. I know I was impatient, but everytime I accidently ate gluten I then realised how much I had improved.

I have been gluten free for nearly 2 years, I can't say I am 100%, but I do feel better than what I did at the outstart. In this decade I feel better than what I did in the previous, but in having said that I felt pretty good then, until coeliac was taking a bigger hold on me.

We need to be patient but at the same time, it is hard to be that, as gluten is still on my mind every waking hour of every day, and coeliac is constantly on my mind, as in how I feel today, and what had I eaten to make me feel like this. I wish I could relax a bit more.

Hoping you feel better soon, as it is hard to give up something and not see any difference.

Cathy

[Motorboater]

Sounds like you're in the same boat as me. I keep convincing myself that it just takes longer than two months and I'll feel better. But like you said, and like I was saying, wouldn't I feel ANYTHING different? I should be feeling somewhat better by now...

I'm 19 years old. I was tested by Enterolab, my levels weren't way high or anything. In fact, they were barely above the normal range of 10 or whatever.

I guess the number doesn't matter, or so they say. So I was tested positive for gluten. As you can see, I have several symptoms, mainly in with my mind and energy.

I really liked what you said about celiac though. That makes so much sense. The problem I'm having is what do I do now? I was tested negative for casein by enterolab. Now what?

Your story of how you felt better gives me hope. Thanks. Would you say you feel uh huh, okay, good, great, of fabulous now?

I certainly have. I recently started taking a liquid dropper type sublingual vitamin B12 that goes under my tongue. Forgot the brand name on it, but in the ingredients it was just vitamin B12 and something else, I forget. Also, started taking a powder packet that I put into my bottled water every morning, which is electrolytes and vitamin c's and what not. From the ingredient list, it looked safe to me. Are these things I should call up on? What are the chances of my vitamins having gluten in them?

edit: it sounds like a lot of celiacs have soy intolerances... should I get tested for that as well? and can soy cause constipation?

Hello, I also was diagnosed the end of June this year via biopsy and within 10 days of going gluten free I was a new person feeling much much better, my TTG # was greater than 100 so I was bad.....I can tell you that if I accidentially get "glutened" I know quickly. Everyone is different with a time frame but I get the symptoms you described within 2 hours and if I really think about what went in my mouth I can figure it out, both times was eating out which makes a person apprehensive to do, but my phlosiphy is you can't live in a bubble..........It's not pleasant being ill and if I was you I would go plain rice and plain chicken and see if you can't kick your system into a better mode and start healing. This past week I was not feeling good and I think it was left over in my system from being "glutened" a week prior. Good luck.

Pam

[scotty]

you need to just take your time with this. YES!!!! your going to feel like poop poop poop for awhile maybe longer (but not 19 years)

in fact that might be almost all you do is poop poop poop everyday until you can figure out what works and what does not. Hell i have this yeast problem and some turkey patties--totally gluten free and all (called manufacturer)--which have like autolyzed yeast extract or whatever in the ingredients which i never noticed; anyway they straight blitzed me. i was beginning to absorb you know slowly feeling myself pick up; then WHAM, 2 months of sloshing and nothing tasting right or sticking...mind you no gluten!!

i thought some fruit might be worth a shot since i can't bear fruit right now--teehee...--bladder problems and all...one pear has entagled me into this awful flare so things that worked before and pepped me up just sink through, still no gluten

you may want to concentrate on meats and veggies and fruits if you can tolerate them--caveman diet

i know it is working because i aint had no tests; in 29 years of poor life i aint had no diet that i tried gradually make me feel a normal human process and digestion like a gluten free diet; has made me aware that my guts had never sucked on nutrients before; i know because my veins down my arms and legs and such are protruding now

[kbtoyssni]

Your story of how you felt better gives me hope. Thanks. Would you say you feel uh huh, okay, good, great, of fabulous now?

Most days I feel fabulous, with the occasional day of good or great. I do seem to have a more sensitive stomach than most people I know (or maybe I'm just aware of the fact that upset stomachs aren't normal and there should be a solution), but it's not too bad. I'm also lucky that my gluten reactions aren't *too* bad. I know when I've been glutened, but I'm still functional. My biggest problem is that when I do get glutened I pick up every illness going around (like right now I have Whooping Cough!) I suppose I used to feel this good way back in the day, but I was too young to even remember those times so this is certainly the most healthy I can ever remember being.

[7-cody]

Most days I feel fabulous, with the occasional day of good or great. I do seem to have a more sensitive stomach than most people I know (or maybe I'm just aware of the fact that upset stomachs aren't normal and there should be a solution), but it's not too bad. I'm also lucky that my gluten reactions aren't *too* bad. I know when I've been glutened, but I'm still functional. My biggest problem is that when I do get glutened I pick up every illness going around (like right now I have Whooping Cough!) I suppose I used to feel this good way back in the day, but I was too young to even remember those times so this is certainly the most healthy I can ever remember being.

So you basically feel just fine... that's great. I'm happy for you! I wish I could feel good. I like hearing stories of people who recovered. It gives me a new kind of hope.

I just did some research on soy and YES, it does cause constipation... I'm not going to order an expensive test to find out though. I'm just simply going to eat nothing but rice and chicken for a few weeks and then try it. It sounds like I'm reacting to something else as well. I remember there was a guy on this board who said he didn't feel better on the gluten free diet until he went soy free as well. Maybe I'm the same way.

[scotty]

I'm just simply going to eat nothing but rice and chicken for a few weeks and then try it. It sounds like

make sure you rotate; you can mess yourself up eating the same things

[cruelshoes]

From what I've seen, every "Celiac" out there goes gluten free but still has so many problems.

Is there anyone that has gone gluten-free and feels GREAT? Is it possible?

I will tell you unequivocally that it IS possible to feel absolutely wonderful after being diagnosed with celiac disease. I went 18 years before I was diagnosed. I was clasically, drastically sick for most of that time. I went many years having to get fed daily through an IV just to survive. I had to be hospitalized and was near death from malnutrition just before my diagnosis. Once I got my diagnosis and removed gluten from my diet and my life, I experienced a rapid turnaround. Within 3 days, my D went down from 50x a day to only 3. Slowly and steadily, I saw improvement, and within a few months I was symptom free. I used to have to take 8 prescription meds a day just to stay alive, and now I don't take any.

I know you have heard it a million times before, but it does take some time for many people to recover. I had the benefit of IV nutrition that bypassed my gut entirely, so maybe that is why my bounce back was so quick.

Honestly, if you are still feeling such symptoms after 2 months, it really seems like you either haven't been as gluten-free as you think you have (this is not a criticism - there is a step learning curve with this diet and mistakes do happen), or you have something else going on. Maybe another food intollerance? Have you ever tried to keep a food diary to track your symptoms? I know it is a lot of work, but it might give you some answers. Maybe you could ratcheting down to the basics and add new foods one at a time and track your reactions. Many people here have learned a lot from an elimination diet.

I just wanted to post and tell you to have hope because it does get better, and it is possible to feel great on a gluten-free diet.

[Lisa]

Yes, there is a light at the end of the tunnel.

I was diagnosed with something that they called Celiac Disease in August of 2004. As many of you, I learned what it was from the Internet, which found me here.

The first year was a bit wild. Learning and confidence took a good part of a year. The second year after being diagnosed was a creative one. I learned to cook and entertain totally gluten free. All the time, incidences became further and further apart. Dairy was an issue for a time, but that has gotten better.

Today and for some time now, I feel wonderful. All the symptoms which kept me house bound for two months are gone. I eat better, I exercise, I do not feel deprived and all is well. I am fortunate that all I have is a gluten problem.

The road to good health is not an easy one. But it can be done. There is a light.

[7-cody]

Thanks for the response guys. What are some good websites and information I can get on the elimination diet? I want to make sure that I do it properly.

Before I do an elimination diet, should I try just avoiding soy?

[LoriC]

So you basically feel just fine... that's great. I'm happy for you! I wish I could feel good. I like hearing stories of people who recovered. It gives me a new kind of hope.

I just did some research on soy and YES, it does cause constipation... I'm not going to order an expensive test to find out though. I'm just simply going to eat nothing but rice and chicken for a few weeks and then try it. It sounds like I'm reacting to something else as well. I remember there was a guy on this board who said he didn't feel better on the gluten free diet until he went soy free as well. Maybe I'm the same way.

I had my gallbladder out 2 months after i had my son in 1991 and my tummy problems started then. I had upper/lower GI's done, scopes, only thing i was told over and over again is that i have IBS and gastritis..I took myself off dairy it helped some. Then last year i developed a rash, my family doctors tried to treat me with predisone and creams, it did calm it down and in some areas took it away, but it never really ever left me. finally this July i was so sick, like you, i felt like my head was in a fog, my eyes were so tired, my body was just so tired all the time..i wanted to sleep constantly, but would lay down and never really fall asleep..my legs and feet ached me constantly, worse at night. Finally I went to see a dermatologist in the beginning of August, He put me on dapsone for the rash, but never said what he thought it was until i returned for my followup in late August, he asked me if the rash went away, i said NO, but its better. He said he didn't expect it to be gone completely and thats when he dropped the bomb on me..he told me i have DH aka celiacs disease. He put me back on dapsone and a gluten free diet..I cried for 2 days reading what celiacs was and about the diet. I can honestly say, I"ve been gluten free now for about a month and a half, my rash is almost completely gone, i have energy. My legs and feet do still ache me at times.

I pray you start to feel somewhat better soon, but i think you should check into other food allergies like the other posters have said. I tried eating some ice cream the other day, just 2 small scoops..NOPE, still dairy intollerant lol, but i was thinking it would be ok since maybe its just gluten allergy..I guess i still can't have dairy. Goodluck and I hope you feel better soon, Lori

[Glutenfreefamily]

I know its gluten for me as I dont have diarrhea within a half hour of ingesting it or a seizure from eating anymore but I had all my lovely food allergies and other intolerances come out once I was actually absorbing foods again. Now being gluten, soy, dairy, msg, and basically yeast free I feel really good but its taken a few years to figure them out once they started coming out. I also cant digest fats so its made me a strict vegan without nuts but Im okay with that. The important things are that I feel good now. I know where your at, I went through it myself and I couldnt believe how sick I got before I got better. I hope it doesnt take you near as long as it did me. With regards to the elimination diet I stuck to the basics meat, veggies and fruit with nothing else, very boring but it worked and I felt great then when I added foods that might be offending it really showed what it was.

scotty- autolyzed yeast protein is almost always MSG. It causes me to be sick as a dog anymore. I get spins, headaches, cant hear out my ears well, and so brain fogged that I cant even cook a recipe well at that time. Look up chinese restaurant syndrome and see if it fits for you. There are many names of msg.