I Must Be Crazy, Or Am I?

[CarlaB]

With lots of gluten, I feel intoxicated the brain fog is so bad, I'm more likely to be constipated than have d, I have extreme fatigue so I lay around a lot. After some time like that, I get so that I feel unsafe driving because of the brain fog and lightheadedness. I have almost fainted. When we were Christmas shopping during my gluten challenge, I would have to sit down on the floor so that I didn't fall down. I remember knocking down a bunch of videos at Best Buy, my husband asked what happened, and I just pretended I had been clumsy, but I really had just caught myself before I fell down (he gets so worried), but I didn't trick him ... I had to sit down, then he helped me out of the store. It wasn't this bad at first, I felt a lot like you have described, but it got very bad towards the end.

I often joke now that I don't need alcohol to feel intoxicated, I just need a biscuit, but that I'll get a worse and longer hangover from the biscuit!

And, as you say, a normally functioning person would not feel that different getting off gluten. Although, my hubby can feel a bit gassy if he eats a lot of gluten ... but he doesn't have nearly the symptoms I have!

[Guest nini]

you don't have to be consuming gluten for them to test for chrons or colitis, AND you can have those along with gluten intolerance or celiac... and honestly, to me there is NO difference between gluten intolerance and celiac. Yeah, technically celiac is confirmed villous atrophy, but what if you are not to that point YET? Like Ursula said, are you going to continue eating gluten and possibly poisoning yourself UNTIL you have a positive result? NO? Well then why do it for a challange. To me that's just silly. And you did show improvement on the diet. That's good enough for me. They can continue to rule out other things without you having to put gluten back into your body. That's what doesn't make sense to me.

[Mango04]

I'm really sleepy, and foggy. I'm surprised I'm not sick. Maybe gluten isn't my problem?

C, weight gain, sleepiness and fogginess can all very well be gluten symptoms. If you don't feel great, overall, all the time when you're back on gluten, you could should still consider gluten being a problem. I seem to notice a lot of people who go back on gluten or dairy, and they feel kind of "yuck" and have weird new symptoms they can't figure out, but just since they don't have violent reactions right after they eat the offending food they don't attribute their problems to those foods.

Okay I'm rambling so I'll just say...I hope you feel better and get to the bottom of your health issues soon!

[penguin]

you don't have to be consuming gluten for them to test for chrons or colitis, AND you can have those along with gluten intolerance or celiac... and honestly, to me there is NO difference between gluten intolerance and celiac. Yeah, technically celiac is confirmed villous atrophy, but what if you are not to that point YET? Like Ursula said, are you going to continue eating gluten and possibly poisoning yourself UNTIL you have a positive result? NO? Well then why do it for a challange. To me that's just silly. And you did show improvement on the diet. That's good enough for me. They can continue to rule out other things without you having to put gluten back into your body. That's what doesn't make sense to me.

I know that I can have all of the bad digestive things at once. My line of thinking is that as long as they're sticking cameras into my digestive tract, they may as well do a biopsy, and I'm not going through all of that gluten-free. They're going to have to come at me from both ends to make a colonoscopy worth my while.

You know what the biggest difference between celiac and gluten intolerance is? Insurance. I didn't self-diagnose, my doctor diagnosed me, and therefore, it's on my permanant record. I want a second opinion to know it's correct. If there's any way to take that pre-existing condition off my record, that would be great.

Will I go back to the gluten-free diet? Probably. I like having the full use of my brain and body.

It may be silly, but I'm simply not confident in the way that I was diagnosed. After nearly four years of being sick, I probably do have atrophy if I have celiac, and hopefully they can catch it. If they don't, so be it.

I know you care and that you don't want people to make themselves sick, but this is something I have to do for myself.

[Guest nini]

oh hon, don't get me wrong, I am supporting your decision to do this, I just have had it about up to here with the medical community and I have no faith in them right now. That's just me. I have it on my permanent record too and have been denied insurance, which really does suck and I can completely understand... What gets me with insurance companies is that they consider this a bad news pre existing condition but the majority of us are much healthier WITH this dx than without. I'm not saying you shouldn't do this, I'm just thinking out loud about why it should even be neccesary. Not just for you, but for anyone.

You have to do what is right for you no question, and I am 100% supportive of you, I'm just guilty of thinking out loud (in print)

[Lister]

i know its not a answer for evevryone but you should consider looking into candida as well/ unless you became perfectly fine gluten free but if u still had symptoms after 3 months look into that,it can cause sensativity to foods not intolerancy but it can cause sensativity, and lots of other things. im seriuse though eat a cheesy gordidta crunch for me mmmmmm

[Guest nini]

oh yeah. I'm still having issues with Candida three years after going gluten-free. I had real bad systemic candida from years of antibiotic use.

[penguin]

i know its not a answer for evevryone but you should consider looking into candida as well/ unless you became perfectly fine gluten free but if u still had symptoms after 3 months look into that,it can cause sensativity to foods not intolerancy but it can cause sensativity, and lots of other things. im seriuse though eat a cheesy gordidta crunch for me mmmmmm

There is definitely taco bell in my plans, no worries! I'm not nuts about the gordita crunch though...

About candida, I don't really believe that it happens all by itself. I think it happens as a secondary kind of infection to a larger problem. Candida is always present in your body, so when the good bacteria that keeps the yeast at bay gets flushed out of your system or is killed by antibiotics, the candida can take over. That's why yeast infections happen.

Thing is, a lot of the symptoms are the same in celiac and candida, and I kind of think the celiac (or other autoimmune thing) causes the candida more often than not. Your immune system has to be comprimised somehow.

I think I've only been on antibiotics maybe 3 times in the last few years, always for short courses (usually a bladder infection). I will admit that I was doing really well until I had to take strong antibiotics for a cellulitis infection. That was only 5 days though. I don't crave sugar anymore or anything.

Plus, the classic candida symptoms that are more exclusive to candida infections, I don't have. Thanks for the suggestion though!

[schuyler]

Chelsea,

I understand exactly where you're coming from. If you are not comfortable with the way you were diagnosed, then do whatever is necessary to confirm your diagnosis. I know that I'd do the same thing if I was unsure. Good luck with everything.

Danielle

[CarlaB]

You've already determined you're sensitive to gluten ... you want celiac removed as a pre-existing condition ... maybe having the endoscopy gluten-free is the way to go ... just a thought. I KNOW I have a gluten problem, but my endoscopy was "negative" therefore the medical community considers me "healthy" based on their definition of it. I guess I got lucky! My internist has my enterolab results in my file, but I don't think that qualifies as a diagnosis, does it?

[penguin]

You've already determined you're sensitive to gluten ... you want celiac removed as a pre-existing condition ... maybe having the endoscopy gluten-free is the way to go ... just a thought. I KNOW I have a gluten problem, but my endoscopy was "negative" therefore the medical community considers me "healthy" based on their definition of it. I guess I got lucky! My internist has my enterolab results in my file, but I don't think that qualifies as a diagnosis, does it?

With the enterolab thing, I guess it depends on what your doctor and insurance company think. Since it's not widely accepted by the medical community, you're probably ok.

I hadn't thought about being gluten-free to get the pre-existing condition taken off, not a bad idea, really. I'm ok with having a celiac diagnosis, as long as I actually have celiac. I see it as a win-win. If the biopsy is positive, then I really have celiac and know exactly what I'm dealing with, and that I risk passing it on. If it's negative, then I'm just intolerant, my insurance doesn't care, I have some peace of mind, and I can go on with my life.

[CarlaB]

Technically speaking, I am only intolerant. I do, however, have the celiac symptoms, but only the intolerant genes. So, I could fall into the 5% of celiacs who do not have the genes, I could just be intolerant. Since I'm barely absorbing my food, I'd say there is some kind of intestinal damage they just didn't find. I also get joint pain, brain fog, etc. Whether it's celiac or gluten intolerance, it's just as serious to your body if you ingest gluten.

My point is that if you have the attitude that it's "just" a gluten intolerance like it's something less than celiac, then 20 years down the line when you're my age, you might see more serious consequences.

Okay, now I'm sounding like a Mom, but I can't help it ...

[penguin]

My point is that if you have the attitude that it's "just" a gluten intolerance like it's something less than celiac, then 20 years down the line when you're my age, you might see more serious consequences.

Okay, now I'm sounding like a Mom, but I can't help it ...

Understandable

I didn't mean to undermine an intolerance, although it is a bit more "just"-y than celiac. I'd still be gluten-free, since it would make me feel better. I really don't like feeling stoned all the time

I also want babies, and I don't want to interfere with being able to do that!

[Becky6]

I am nost sure if I have celiac but at the least gluten intolerance. I also have micropscopic colitis. And many people deal with colitis with a gluten free diet. Don't quote me but I have read that Microscopic colitis is on the same gene as celiac. Not sure but if you do have colitis you could still need to be gluten-free to control it. Good luck!!

[CarlaB]

I don't know that I'd consider it more "justy" than celiac. I guess it would depend on the severity, if there is a varying severity with gluten intolerance. My problem is very systemic, and my absorption after almost three months gluten-free was just barely within limits. I kinda feel like I just caught it before I was too damaged because it's pretty clear there was damage judging by the absoption, depression, low thyroid, joint pain, off and on anemia, etc. which was in addition to the intestinal symptoms and losing a pound a week for four months. I also had numerous emergency room visits due to dehydration over the past 25 years, even though I'm constantly drinking water. I also had very difficult pregnancies. If it were a lesser illness, I wouldn't think it would have those systemic symptoms, rather just the intestinal ones, more like an allergy.

I actually think that it's more likely that rather than being a lesser illness than celiac, it was just caught before it fit the definition of celiac. It seems that most of those on this site who were diagnosed with damaged villi were VERY ill! I was on my way there ... fast ... My enterolab results indicated an autoimmune reaction, not just the gluten antibodies. So, maybe you would be correct for someone with the gluten antibodies alone.

I'd consider gluten intolerance to be more like finding cancer early. It's a little easier to treat and more likely to completely heal, but still needs to be seriously treated before there's irreversible damage.

That's just my opinion ... for what it's worth. BTW, don't take this as me thinking you are undermining gluten sensitivity, I just want to point out that it can be very serious in it's own right and you can do damage to your body even if it is "just" gluten sensitivity.

[penguin]

My body is definitely not happy with me. If anyone ever decides to do a gluten challenge, try some tabouleh! Good Lord, I had some last night and was SO bloated and my neck hurt. Nothing like straight bulgar wheat to tear you apart! It may have been that and the combination of the two Taco Bell chalupas and taco, though.

I have an insatiable appetite! I just had a big bowl of cream of wheat and now I'm eating pizza because I'm still hungry. No wonder I'm gaining weight. I usually don't have such a huge appetite! Sheesh.

What sucks is that I'm still getting the D cramping, just without the D. I'm still having to go rather often, but it's a lot more difficult. Where did I put those prunes?

Carla - I didn't mean to undermine. The way this is going, I know that gluten certainly isn't good for me. I'm tired, bloated, ravenous, and foggy. I can say with 98% certainty that I'll go back to the diet once this is all over. Intolerances are bad news also.

[key]

ChelsE,

It is possible to that the gluten free diet helps people with IBS, so it helps alot of people even if they don't have celiac. It sounds like you are having some symptoms from eating wheat for sure. My blood tests were borderline for celiac and my son has it, but it is hard for me too. WHen I am not feeling better at times, I think it isn't celiac and something else, so I test myself about every two months. I understand your dilemna. I have never made it, but for a couple meals eating wheat, because it makes me SO sick. I swear that can't be in my head.

GOod luck and be sure to follow through while you are actually eating it.

Monica

[CarlaB]

Try some seitan ... I think it's almost straight gluten!! It makes good tasting fajitas.

[VydorScope]

Wow Chelsea! I missed this thread till just now. You being carefull of your Hyposugar Stuff while you do this?

[penguin]

Wow Chelsea! I missed this thread till just now. You being carefull of your Hyposugar Stuff while you do this?

Yes sir, I am! I knew about the trademarked condition long before I knew about gluten-free, although my trademarked condition is much worse on gluten. It runs straight through my blood! I'm keeping watch on myself

[VydorScope]

Yes sir, I am! I knew about the trademarked condition long before I knew about gluten-free, although my trademarked condition is much worse on gluten. It runs straight through my blood! I'm keeping watch on myself

Okay when you said you were on major "carb overlaod" I got worried!