Tell Me I'm Not Crazy!

[luvtorunn]

I'm new to this site. I have been devouring everything about celiac disese on the internet for about 2 weeks now, since my husband mentioned maybe I have a gluten problem.

Well, from the first minute of reading the symptoms it just all seems to make so much sense. I can totally see myself over the past (actually as long as I can remember). all my symptoms, which I could never describe to anybody just fit into place now. I have stopped eating anything with gluten for about 2 weeks now and have my first gluten related doctors appt. on May1. But since I never complained to anybody and tried to live as normal a life as possible nobody knows and it seems the more I have to explain to people the more it seems so crazy in my head. It seems that a lot of the symptoms are things you can't really explain to anybody (i.e. mental fog, forgetfulness, feeling mixed up, writing words messed up, you know....) It will sound like a total mental case. Am I crazy or is this for real? Sounds like I have lived this secret life all these years (which actually I have). But even reading about nightblindness, which on my last nightdrive was the worst ever, all of a sudden getting a sick feeling about a food item, rumbling in my stomach and total discomfort to a point where I just give up eating all together ( people right away think I'm anorexic).

Not being able to finish a long run without stopping in between, saying that I can't breath, my back hurts when I run and my last 19km run I finished with sheer will power. I have a strange rash around my mouth which comes and goes....and concentrating at work has become harder and harder, I come home totally exhausted. But, ever since I stopped eating gluten I come home and I can actuallt sill function. It's a miracle!! Does that sound real?? I have also discovered that I have somewhat of a problem with lactose. Anyways, you guys know al the symptoms. How do you go from appearing normal for years and years ("oh well, she's just in one of her moods") to all of a sudden explaining a disease? I never told my doctor anything as I never wanted to labelled as one of those people "where it's all in their head'. Plus, I just did not have words to describe what was wrong with me. So I just pretended that I was this healthy athletic person. It's gonna sound really stupid telling her now after all this time.

Just tell me I'm not crazy!

By the way--has anybody experienced excessive mucouis build-up before stopping gluten. It was getting to a point of unbearableness (?) constantly snorting, horking and blowing my nose. It's pretty much gone, but I'm wondering whether it was just the winter wheather, though hoping that it's yet another symptom disappearing???

[foxglove]

Hey there-

I just got diagnosed with celiac about a month ago, and I can definitely tell you that for years I felt completely crazy. I went to numerous doctors and hospitals and they kept telling me all my symptoms were from stress - basically, in effect, that it was all in my head. I don't know about all the symptoms you described, as a lot of them are different from my own experience, and I'm no doctor. But if celiac symptoms are ringing a bell with you, definitely get tested! Either way, there's something going on in your body, so don't let anyone make you feel crazy! I would suggest that you make sure you describe all your symptoms to your doctor - I made the mistake of only mentioning a few symptoms, because I was starting to feel like a hypochondriac since I had so many and they seemed so random. But now they make sense!

[Nantzie]

You're not crazy at all. It all sounds familiar to me.

Welcome to the boards.

Nancy

[NoGluGirl]

I'm new to this site. I have been devouring everything about celiac disese on the internet for about 2 weeks now, since my husband mentioned maybe I have a gluten problem.

Well, from the first minute of reading the symptoms it just all seems to make so much sense. I can totally see myself over the past (actually as long as I can remember). all my symptoms, which I could never describe to anybody just fit into place now. I have stopped eating anything with gluten for about 2 weeks now and have my first gluten related doctors appt. on May1. But since I never complained to anybody and tried to live as normal a life as possible nobody knows and it seems the more I have to explain to people the more it seems so crazy in my head. It seems that a lot of the symptoms are things you can't really explain to anybody (i.e. mental fog, forgetfulness, feeling mixed up, writing words messed up, you know....) It will sound like a total mental case. Am I crazy or is this for real? Sounds like I have lived this secret life all these years (which actually I have). But even reading about nightblindness, which on my last nightdrive was the worst ever, all of a sudden getting a sick feeling about a food item, rumbling in my stomach and total discomfort to a point where I just give up eating all together ( people right away think I'm anorexic).

Not being able to finish a long run without stopping in between, saying that I can't breath, my back hurts when I run and my last 19km run I finished with sheer will power. I have a strange rash around my mouth which comes and goes....and concentrating at work has become harder and harder, I come home totally exhausted. But, ever since I stopped eating gluten I come home and I can actuallt sill function. It's a miracle!! Does that sound real?? I have also discovered that I have somewhat of a problem with lactose. Anyways, you guys know al the symptoms. How do you go from appearing normal for years and years ("oh well, she's just in one of her moods") to all of a sudden explaining a disease? I never told my doctor anything as I never wanted to labelled as one of those people "where it's all in their head'. Plus, I just did not have words to describe what was wrong with me. So I just pretended that I was this healthy athletic person. It's gonna sound really stupid telling her now after all this time.

Just tell me I'm not crazy!

By the way--has anybody experienced excessive mucouis build-up before stopping gluten. It was getting to a point of unbearableness (?) constantly snorting, horking and blowing my nose. It's pretty much gone, but I'm wondering whether it was just the winter wheather, though hoping that it's yet another symptom disappearing???

Dear luvtorunn,

Welcome to the site! You sound like all of us have in the past. We worried we were just insane like every doctor we went to see said. They dope you up on pills (you name it, I was probably on it) and they did nothing but make me sicker, terribly drowsy, or did not help at all. They tell you it is just anxiety and depression. All of these things you experience are not uncommon at all.

Symptoms can be gastrointestinal (my reaction is very violent), or they can manifest is only Dermatitis Herpetaformis. Everything from ear infections to rashes can be caused by this nasty disease. I was sick for so long, and even had blood tests run in 2000, and was told I was not Celiac. However, when I told the holistic physician about it that I began seeing, she told me those tests are not very accurate. She has had a handful of patients who were Celiac that the tests did not show it in.

She felt I am Celiac because I had symptoms from birth. I have a typical history for the disease. I spit up every formula they put me on as an infant, and had to be placed on 2% milk at three weeks of age. As I got older, I had miserable allergies and broncchitis as often as twice a year. I also frequently was nauseated as a child and nearly became anorexic because I was often afraid to eat.

In my teens, I developed Ovarian Cysts and anemia. I had to have my gallbladder removed at 20. At 22, it was discovered I had Thyroid disease. I am not thrilled about having to be paranoid careful, but I was so happy to have an answer to the unbearable symptoms I have endured my whole life.

I have a present for you! I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

[Fiddle-Faddle]

You are not crazy!!!

Welcome to the board.

You might try printing out a list of your previous symptoms and how many of them have resolved since stopping gluten. Bring that to your doctor. If he has it in his records (or her records), he is less likely to call you crazy because that would be setting himself up for malpractice.

Unfortunately, too many doctors do not "get it." They would rather write a scrip for expensive meds that mask the problem, cause side effects, and do nothing about the cause of the problem than consider that something you eat might be causing all the problems.

You might also google whatever symptoms you have, one at a time, along with the word "gluten," and see what pops up. If something convincing pops up, print it out and bring it along with you to your appointment.

Oh, I hate to say this, but any blood work that would show a problem with gluten (the Celiac panel) would come up negative if you are already off gluten. You have to be eating the equivalent of 4-5 slices of bread a day for months for the blood test to come up positive, although I believe the IgG will still come up positive, but they don't use the IgG as the main diagnostic tool, I think they use the IgA more. Someone please correct me if I'm wrong!

Anyway, some doctors do consider dietary response to be a valid diagnostic tool. Really, more should, as there are false negatives, but no false positives.

Good luck!

[luvtorunn]

Thanks so much for the quick replies and advise. Thanks so much for the looong list of items that can be eaten. Finally something positive.

Having only been offf gluten for two weeks, should I really be starting with gluten again for the blood test? Does the body change that fast?

[happygirl]

luvtorunn:

Welcome to the board! Happy that you have found this resource...it truly is invaluable.

You don't "need" a test to stay gluten free the rest of your life. However, if you want to be diagnosed as a Celiac, you want your testing to be as accurate as possible, which means you HAVE to keep eating gluten. Think of it like diabetes...if a diabetic takes their blood sugar while their diet, etc., is well-controlled, their blood sugar would be normal. That doesn't mean that they aren't a diabetic...it means their diet is well-maintained. Same with Celiac. When you get the diet under control, your body stops reacting (nothing left to react to!) so then you don't "look" like a Celiac on blood panels.

It is a personal decision, we are just trying to provide you the facts (I wish I knew that before all that I went through)!

Also, keep in mind that you might be non-Celiac gluten intolerant, which doesn't have villi damage....so a biopsy would be negative anyways.

Point is, no matter what you choose, at the end of it all, even IF you test negative, but you know you do better on a gluten free diet, STICK WITH IT. You know your body the best. Not eating gluten can't hurt you. We have many diagnosed Celiacs on this board, and many people who know they just do better on the diet. But, we all live the same gluten free life everyday....hence, why we are here.

Best of luck, and let us know what else we can do

Laura

[gfp]

Thanks so much for the quick replies and advise. Thanks so much for the looong list of items that can be eaten. Finally something positive.

Having only been offf gluten for two weeks, should I really be starting with gluten again for the blood test? Does the body change that fast?

The thing is its not a presence or absence the tests measure... but whether its above "normal" or not...

Its not impossible to test +ve after longer... but it just means the chance of the test actually being positive decreases....

Its one of those things that IMHO if your going to do it at least do it right and give the tests the best possible chance...

Its not like taking an exam or driving test etc. where your aim is to pass ... your aim is to get the most accurate information for you... so maximising the accuracy is the best thing...

[NoGluGirl]

Thanks so much for the quick replies and advise. Thanks so much for the looong list of items that can be eaten. Finally something positive.

Having only been offf gluten for two weeks, should I really be starting with gluten again for the blood test? Does the body change that fast?

Dear luvtorunn,

Wait! Scratch that list! I did not realize you were in Canada! Many things there are not gluten-free that are here! Do not worry! I have a link that will help you! I took the liberty of looking up gluten-free products for Canadians. I do not want you to get sick! Go to Open Original Shared Link to get a full list of items you can eat! I apologize for posting the previous list.

Sincerely,

NoGluGirl