Can It Really Be This Simple?

[JerryK]

Folks 6 years ago I was diagnosed with Depression and Anxiety. To make a long story short, I was given multiple trials of medications, even an atypical anti-psychotic(which made me gain 30 lbs).

(No kidding, this drug made me wake up in the fridge eating....)

Eventually I stayed on a low dose of Lexapro. Can't say that it does that much, but for the last 5 years I've been relatively functional.

I've always had this sense that something about me had changed. Couldn

[Ursa Major]

Ah, but Jerry, antidepressants are big business, and the psychiatrists need to make a living, too, don't you know?

I have never heard anybody suggest to me that my depression, anxiety, aggression, meltdowns, angry outbursts etc. could be food related. It seems NO doctors seem to know that there could be a connection. And family and friends will look at you as if you have gone completely off your rocker when you suggest to them that maybe certain foods make you behave like that.

My husband is fond of suggesting that it has nothing to do with food, but that I am influenced by demons instead. And that I am sinning if I have angry outbursts and should be able to control them. Right. In the meantime, he leaves his crumbs everywhere.

[Nancym]

Well, don't step in front of the bus now! You know how to make it better.

Now I still don

[Guhlia]

Ah... Jerry... It IS that simple. It's a real shame that doctors don't get it, but sadly, most of them don't. Thank goodness your dentist had half a brain and mentioned something to you. Would you have ever found us otherwise? I'm sorry that you're feeling crummy right now from eating gluten, but I'm really glad that you've discovered the length to which your symptoms go. Perhaps you'll be able to ditch the antidepressants after a few months on the gluten free diet. I did, it took me a year, but I felt SO much better off of them when I finally went off. Are you still going to be looking for a doctor's diagnosis or is your mind made up?

[tarnalberry]

but for so long, depression was seen as being made up. and then it was just a chemical thing in the brain. can't be connected to anything else of course.

bah.

docs are slow to change what they know. it'll happen, but it'll take years.

btw, if you can get in to see a urologist, you should be able to get the low testosterone treated. (I was told that I couldn't have that as an issue - I was 24 and female. turns out, my levels were undetectable. it makes a subtle, but *very* important difference - in mood as well. do not let your HMO stand in the way of your health. you may have to be demanding, but sometimes we have to stand up for ourselves.)

[happygirl]

Yes, it is that simple.

And yes, its frustrating that most doctors know little to nothing about it.

Hence why NIH has launched a celiac awareness campaign among medical professionals because even NIH recognizes that our current doctors just don't get it.

Its not taught in med school to the degree it needs to be, and incorrect/outdated info is still being passed along.

Undiagnosed Celiac is related to unfavorable outcomes with pregnancy or those who have trouble conceiving, and yet, its not part of the general screening process. However, Dr. Green and his colleagues are working on that.

Little is known about Celiac, but even less is known about non-Celiac gluten sensitive/intolerance. Try throwing THAT one around to your Kaiser people :)

[celiacgirls]

For me it was that simple. I wasn't on the a/d's as long as you but I started tapering off them 2 days after I went gluten-free. My daughter was diagnosed with depression and had behaviour issues at home that have gone away. She's still tapering off her a/d. But when she went gluten-free, we were thinking we would have to add an anti-psychotic or mood stabilizer. Instead, she watches her diet and is getting off the a/d. Her psychiatrist is surprisingly open to the idea that this is helping, but even he also thinks it is "maturity".

I read another board for children with behaviour issues and tell them many times about my daughter and that their child might respond well to the gluten-free diet, especially when there are gi issues involved, but so far, no one has tried it. The gluten-free diet seems like a miracle to me, still, after 9 months.

[Aizlynn]

I notice a BIG difference within a day that I get that moody fog and get sad. When I cleanse my body by going back to gluten free and couple it with gluten-free green tea it helps. I also take a vitamin B-Complex. Something about the gluten products alters your ability to absord B vitamins. I make sure that the vitamins I have contain no allergens. I double up on that time of the month and that helps with PMS>>>> everyone else seems to enjoy me better that way I am not a doctor, but I this is what my chiropractor/nutritionist has me on. When I go without my vitamin supplements I notice a big difference.

[msutherlin]

Folks 6 years ago I was diagnosed with Depression and Anxiety. To make a long story short, I was given multiple trials of medications, even an atypical anti-psychotic(which made me gain 30 lbs).

(No kidding, this drug made me wake up in the fridge eating....)

Eventually I stayed on a low dose of Lexapro. Can't say that it does that much, but for the last 5 years I've been relatively functional.

I've always had this sense that something about me had changed. Couldn

[lonewolf]

If you knew what I

[jerseyangel]

Hard to believe at the beginning--but it is that simple!

I was continually misdiagnosed for more than the last 20 years. Everything from allergies to depression, to having too small a sinus, to ear problems etc, etc.

A couple of years ago, my GP told me I would just have to live with some of my symptoms (because, evidently, she didn't know what was wrong, so I was nuts)

The only reason I even suspected Celiac was that I reluctantly saw an alternative practioner (Kinesiologist) who my sister swore by. He was going to be in town the same week we were to go up for a wedding.

The first thing he said while checking for food related problems was wheat, oats, barley and rye. This was absolutely the first time anyone had ever suggested my problems might be food related.

As soon as I got home, I studied everything on the subject I could get my hands on. I ended up taking my newfound info and my symptoms to a new gastroenterologist--who listened and scheduled me for testing.

If it hadn't been for that meeting, that just happened to work out, I might still not know what was really at the root of my health issues. I believe everything happens for a reason.

So, after all we go through to get here, it turns out that it's pretty simple. It just dosen't seem like it should be, after the sometimes long road that leads us here.

As for why don't the doctors tell us, instead of us telling them? That made me mad and resentful for some time. I had to work that out in my own mind--I was extremely upset thinking of all the years I wasted being sick, when there was a real medical cause that could have been treated.

After a year and a half, and having a lot of my depression and anxiety helped by the diet, I have come to grips with it (pretty much) and am moving on with my life.

Keep writing here, Jerry. It helps to get it all out to people who can relate.

[JerryK]

I guess to my psychaitrist's credit, he did ask me how my mood was when I went gluten-free.

So there is at least some understanding out there in mainstream medicine, that there

might be some connection.

The hard part is, now that I know gluten is what turns my world dark, dreary and anxious,

how do I continue eating it long enough to get an official diagnoses?

On the one hand, I'd like to have an official diagnoses, to send a message to the HMO that

they "dun me wrong". However, since I now know that an apple fritter will screw up my whole day

and possibly the next...do you think I'm going to want to eat one?

The docs had me convinced it was me...

What do I do ?? What would you do? I don't want to eat it ever again, but I want a diagnoses to push in my doctors face and ask him if he's learned something!!!

Do I just do what works for me and to hell with what other people think, diagnosed or not?

[Guhlia]

Have you shown him your Enterolab results? I know most doctors don't put much weight in Enterolab, but some do. Perhaps he will accept that as an official diagnosis. It's worth a try. If I were you, I'd probably go back to going gluten free since it's solidified in your mind. You know you have a problem with it, there's no need to prove it to your doctor. You can tell him that you found gluten to be your problem and perhaps he'll keep his eyes open with the next patient. Unlikely, but possible.

[Jestgar]

Cool, huh!

[jerseyangel]

I agree with Angie--take your Enterolab results, along with a detailed account of how you feel on and off gluten to your doctor. Include the conversation you had with your dentist.

It's possible that your doctor will accept those--maybe he will order a gene test as well. You will never know unless you try.

It's a difficult situation, I know. I wish it were easier.

[AliceW]

I guess to my psychaitrist's credit, he did ask me how my mood was when I went gluten-free.

So there is at least some understanding out there in mainstream medicine, that there

might be some connection.

The hard part is, now that I know gluten is what turns my world dark, dreary and anxious,

how do I continue eating it long enough to get an official diagnoses?

On the one hand, I'd like to have an official diagnoses, to send a message to the HMO that

they "dun me wrong". However, since I now know that an apple fritter will screw up my whole day

and possibly the next...do you think I'm going to want to eat one?

The docs had me convinced it was me...

What do I do ?? What would you do? I don't want to eat it ever again, but I want a diagnoses to push in my doctors face and ask him if he's learned something!!!

Do I just do what works for me and to hell with what other people think, diagnosed or not?

I believe you only started the gluten-free diet in mid-December, and have been on and off of it since then? If that's the case, your blood test results might still be positive for celiac (if you have it) if you just keep eating gluten for another week or two. So it might be worth getting the blood tests, at least. That way if they are positive, you can have one more clue as to what your diagnosis is, and then you can decide whether or not you want to do the biopsy. If they're negative, that might be more suggestive of a non-celiac gluten intolerance, and then you can just go your merry way being gluten-free and feeling better.

I know how you feel, though. I'm starting to feel so much better on the gluten-free diet that if the improvement continues, I'm going to be afriad to do a gluten challenge, even though it's important to me to confirm that it really is gluten that is my problem (scientific method and all that).

Alice

[CMCM]

I don't know why so many of us (I'm including myself) want so badly to have a doctor confirm our diagnosis...we want someone who knows little or nothing about celiac disease to tell us we do or don't have it! Why is this?

When I demanded a traditional celiac disease blood test from my doctor, after a lengthy conversation with him, he said "Well, you certainly know more about celiac disease than I do!" So yep, I want this guy to confirm things just because his shingle says "doctor"???!!!!!

I'd say get a gene test...$165 from Enterolab. Then you at least know what predisposition you might have genetically. Beyond that, the diet tells the story. It's funny how reluctant we are to give up gluten even if eliminating it makes us feel good. Unless you have full blown celiac disease which is wasting you away due to malabsorption, it looks to me like no one can tell you you DO or DON'T have celiac disease instead of gluten sensitivity, which Dr. Fine at Enterolab thinks is just as serious as celiac disease, and that both conditions warrant 100% avoidance of gluten.

[ianm]

It really is that simple. My doctor said that the diet is obviously working so what more do I really need to know? According to her the only thing an "official" diagnosis is going to do is put a pre-existing condition on my medical records and make it difficult if not impossible to get any kind of insurance in the future.

[Creative-Soul]

It really is that simple. My doctor said that the diet is obviously working so what more do I really need to know? According to her the only thing an "official" diagnosis is going to do is put a pre-existing condition on my medical records and make it difficult if not impossible to get any kind of insurance in the future.

Amen!

Yes, JerryK, it is that simple!

How did I find out about neurological symptoms of Celiac/Gluten Sensitivity? From this board and putting 2+2 together when I began to feel so amazingly better after going gluten-free! I'd been clinically depressed most of my life; I'd also have the most horrendous panic attacks (I would sometimes 'whiteout' and was placed on a controlled-substance to manage it), agoraphobia and suicidal tendencies. At the worst point not that long ago I actually came thisclose on 3 occasions to checking out, so to speak. When I made the connection I told my present psycologist and she was thrilled for me.

I'm so glad that you've found some answers...stay commited to improving you health and I know you'll see even more improvement!

[Gentleheart]

Amen!

Yes, JerryK, it is that simple!

How did I find out about neurological symptoms of Celiac/Gluten Sensitivity? From this board and putting 2+2 together when I began to feel so amazingly better after going gluten-free! I'd been clinically depressed most of my life; I'd also have the most horrendous panic attacks (I would sometimes 'whiteout' and was placed on a controlled-substance to manage it), agoraphobia and suicidal tendencies. At the worst point not that long ago I actually came thisclose on 3 occasions to checking out, so to speak. When I made the connection I told my present psycologist and she was thrilled for me.

I'm so glad that you've found some answers...stay commited to improving you health and I know you'll see even more improvement!

Creative Soul,

How long did it take for you to see results after eliminating everything? Did you have any trouble with accidental glutenings or cross contamination along the way?

[JerryK]

I don't know why so many of us (I'm including myself) want so badly to have a doctor confirm our diagnosis...we want someone who knows little or nothing about celiac disease to tell us we do or don't have it! Why is this?

Thanks for asking...

I know why I want an official diagnosis. I want to walk in to my psychiatrist

[tarnalberry]

I want to thank my doctor for telling me that Depression is a chronic condition, a "Chemical Imbalance" that you must take an Antidepressant for, for the rest of your life (wonder who thought that one up)

To be fair, it *has* been relatively well established that true depression *can* be a chronic condition brought on by a chemical imbalance in the brain. That's not to say it's true for everyone, or that it should be the first type assumed. (I think most psych's assume situational, then chronic, and you're right that they don't adequately address causal medical issues.)

But dismissing the whole thing for those for whom it is true does the same thing that people who dismissed celiacs (or still do) does.

[TestyTommy]

Well said, Jerry. And I'm right there with you. I was sick for 8+ years and lost pretty much everything in the world that mattered to me. And the doctors just kept telling me that it was all in my head, that I was 'stressed', and that I need to be pumped full of anti-depressants. I don't have any 'official' diagnosis either, but after a year of being gluten-free I fell better that I have in many, many years.

I'd love to be able to go back to all those greedy, idiot doctors who 'treated' me and tell them that they were wrong. I wouldn't mind suing a few of them, either (that's the lawyer in me talking). But the truth is, they wouldn't care. They say, "Huh! What do you know?" and move on. Because medicine isn't about helping people, it's about making money. Doctors will help the people that are easy to help, because those patients are profitable. The rest of us are just 'dog' files --- cases that lose them money.

For what it's worth, the anger will lessen after a while. I try to keep my mind on re-building the life that I lost and looking forward to the future. When I find myself thinking about all the years I lost, that huge part of my life that I'll never get back, I do my best to shut it out. It's over; it's gone; there's nothing I can do to get back it back. It's a cliche, but focusing on the positive is the only way to keep the anger from consuming your life. Or driving you mad.

The best revenge -- the only revenge -- against the frickin' doctors is to live a good life. And to help the people that come after us to avoid the price that we had to pay.

[jerseyangel]

The best revenge -- the only revenge -- against the frickin' doctors is to live a good life. And to help the people that come after us to avoid the price that we had to pay.

Amen!

[JerryK]

But dismissing the whole thing for those for whom it is true does the same thing that people who dismissed celiacs (or still do) does.

Oh no, I'm not dismissing this thing called "Depression". It's real. The problem is "Depression" has become a catch-all phrase. When someone doesn't feel good and a doc can't easily figure it out, they are labeled "Depressed" and if the magic potions don't work..."Chronic Major Depression".

Then if you are REALLY lucky, you can become a life-long customer of one of our highly successful pharmaceutical companies. Since once they get you hooked on their drug du jour, it's pretty damn

hard to get off...regardless of whether or not the drug actually helps you.

I'm not minimizing depression and medication...I'm advocating a little more caution and testing before we decide that this person needs medication... gluten-free did more for me in 1 week than any of the medications they tried on me...turns out I was already drugged, by what I was eating.