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Newly Diagnosed: Are My Symptoms Typical?


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#1 Nichelob

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Posted 06 January 2009 - 09:09 AM

Hello All,

First off, I am sorry this is so long - I am an amateur Celiac :D

I was diagnosed with Celiac on the 22nd of December. Matter of fact, I was driving back to hometown for Christmas when the doctor's office called to confirm - biopsy and blood panel were positive. I am 31 and was raised in an Italian family (so gluten has been a staple). I never had any syptoms, until around October when I was under a lot of stress and received a flu shot around the same time. My GI said that I have had this for years because my Villi were so flat - as he saw in my biopsy. So why no symptoms until now?

I am very concerned if my symptoms seem consistent with Celiac Disease.

I have a loss of appetite, loss of sex drive, an overall feeling of just not being well. I have a mild headache and almost a lack of concentration, "head in the clouds" feeling. I have lost weight - I was 182 (a little heavy for me anyways) before my colon/endoscopy on December 10th. I am at 171 now. Sometimes my stools are loose, sometimes they seem to want to begin to form.

Over the holidays, I really made sure I was eating "Gluten Free" products. My stomach gurling began to subside a bit. During the holidays, I was feeling better, less of the symptoms above. I was drinking Vodka (Burnett's Quadruple distilled) and Diet Ginger Ale (Seagram's) the entire time. For New Years I switched to Burnett's Vanilla Vodka and Diet Ginger Ale. After New Year's, I have had this mild, lasting headache, my stools have become loose, and just an overall anxiety feeling that something else is wrong. My girlfriend has been amazing in supporting me, but we didn't know that hazelnut coffee (not syrup flavored, but in the bean) may have gluten in it which I had been drinking, now back to black. We also weren't 100% educated on de-contaminating our kitchen either. So these things may have been the cause. Since New Year's, these feeling have lasted, today is January 6th. My headache is beginning to subside and my stools are a little more formed. My stomach activity has also slowed a bit.

I am really concerned with my weight loss and the headache/concentration "head in the clouds" feelings.

As soon as I found out my diagnosis, I have been doing my best to avoid Gluten containing foods and have been pretty religious reading this site and others out there. I am slowly but surely getting there though.

Thoughts and opinions are greatly appreciated.

Thank you all!

Cheers!
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#2 cat3883

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Posted 06 January 2009 - 10:28 AM

Yep you have some of the symtoms. My main symptoms were brain fog, depression, migraines, and fatigue. I was diagnosed October 15th, 2008. My brain fog was gone within 2 weeks after going gluten free but the fatigue went on for about 5-6 weeks. My gastro told me it could take up to 2 years for the small intestine to heal completely. And he said I will probably be on my depression meds for about a year. Over the holidays I got glutened somehow. I am extremely careful but it happened. That is when I got stomach aches and diarhea. I had not had those symptoms before. It took me about a week to feel completely better. My husband is Italian so I completely understand how hard it is for the family meals. But I make my pasta and take it to their house! It works. It has to. It sounds like your girlfriend is very supportive. My husband is as well. It really helps. Let me tell you if you get the gluten out of your body you will feel like a new person. I didnt know how sick I was. I never want that poison in my body again. People on this forum are very helpful. Dont be afraid to ask questions. And remember to read all labels. Dont forget to check your shampoo, soap, toothpaste, and meds. My Dr told me one crumb can make me sick and less than a teaspoon of cake causes damage. Good luck to you. By spring you will feel like a new person.
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#3 kkkkaty

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Posted 06 January 2009 - 11:49 AM

Hello All,

First off, I am sorry this is so long - I am an amateur Celiac :D

I was diagnosed with Celiac on the 22nd of December. Matter of fact, I was driving back to hometown for Christmas when the doctor's office called to confirm - biopsy and blood panel were positive. I am 31 and was raised in an Italian family (so gluten has been a staple). I never had any syptoms, until around October when I was under a lot of stress and received a flu shot around the same time. My GI said that I have had this for years because my Villi were so flat - as he saw in my biopsy. So why no symptoms until now?

I am very concerned if my symptoms seem consistent with Celiac Disease.

I have a loss of appetite, loss of sex drive, an overall feeling of just not being well. I have a mild headache and almost a lack of concentration, "head in the clouds" feeling. I have lost weight - I was 182 (a little heavy for me anyways) before my colon/endoscopy on December 10th. I am at 171 now. Sometimes my stools are loose, sometimes they seem to want to begin to form.

Over the holidays, I really made sure I was eating "Gluten Free" products. My stomach gurling began to subside a bit. During the holidays, I was feeling better, less of the symptoms above. I was drinking Vodka (Burnett's Quadruple distilled) and Diet Ginger Ale (Seagram's) the entire time. For New Years I switched to Burnett's Vanilla Vodka and Diet Ginger Ale. After New Year's, I have had this mild, lasting headache, my stools have become loose, and just an overall anxiety feeling that something else is wrong. My girlfriend has been amazing in supporting me, but we didn't know that hazelnut coffee (not syrup flavored, but in the bean) may have gluten in it which I had been drinking, now back to black. We also weren't 100% educated on de-contaminating our kitchen either. So these things may have been the cause. Since New Year's, these feeling have lasted, today is January 6th. My headache is beginning to subside and my stools are a little more formed. My stomach activity has also slowed a bit.

I am really concerned with my weight loss and the headache/concentration "head in the clouds" feelings.

As soon as I found out my diagnosis, I have been doing my best to avoid Gluten containing foods and have been pretty religious reading this site and others out there. I am slowly but surely getting there though.

Thoughts and opinions are greatly appreciated.

Thank you all!

Cheers!

I get headaches when I've been glutened. Also, fatigue, body aches, D, unsettled gut. The symptoms really vary for each person. It can be really confusing at first- I finally started keeping 2 diaries (advise from another member here) One to keep track of everything I eat and another to keep track of symptoms. Also, I keep track of my environment, special events, exercise, stool. Keep checking and re-checking everything you use (meds, chapstick, shampoo, hand cream,spices). I've been surprised several times. I have also been glutened from cc- especially at other peoples homes. Get rid of all your flour, mixes, etc. I replaced my sugar because I figured it had been contaminated.

Also, as I got better, the glutening episodes became really intense and long lasting- I was shocked! It is frustrating to be glutened and not know how- the dairy helps.

One more thing, After being Gluten free for a few months, I realized I was also lactose intolerant. I found that out by giving it up for two weeks, then having it again. Night and day.

Good luck, keep reading!
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#4 rumbles

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Posted 06 January 2009 - 11:58 AM

The symptoms vary from person to person, and over time. It's not
unusual for someone to have celiac disease and not have any
symptoms. Brain fog and headaches are quite common.

You're going to need to check everything that goes into your body,
touches your body, or touches the food that goes into your body.
That not only includes food, it includes toothpaste, medications,
vitamins, shampoo, moisturizers. Burnett's vodka is grain based, -
some of us are so sensitive that we can't grain based products
even though they've been distilled multiple times; you might want
to switch to one of the potato based vodkas, at least until your
system heals and stops reacting. Careful with wine, - while it isn't
normally made with gluten containing products, sometimes it is
aged in barrels that were sealed with gluten, and can cause a
reaction if you are very sensitive.

You need to be concerned with cross contamination. If a
manufacturer makes other products on the same production line
as their gluten free products, there is the possibility of cross
contamination, - some of us are so sensitive that we will react
even though the manufacturer cleans the equipment twice between
products (U.S. industry standards).

Celiac causes nutritional deficiencies, - you might want to start taking
gluten free sublingual B-12 (dissolves under the tongue and goes straight
into the blood system without having to go through the digestive process)
if your doctor isn't giving you B-12 injections. Also consider taking zinc,
magnesium, calcium, D3, E, C and iron; make sure that they are gluten
free (if not listed on the packaging, either check the manufacturer's web
site or call the manufacturer).

You might want to go on a very basic meat/potatoes/rice/fresh vegies/
fresh fruit diet until your system starts settling down, then slowly add
items one-by-one to make sure that you aren't reacting to them.

Many of us react to dairy products, at least in the beginning, until our
systems heal. You might want to take dairy out of your diet, at least
until your system calms down, then try slowly adding it back in. Many
of us also have other food intolerances, to such things as gluten free
soy, sugar, tapioca flour, etc., - a basic meat/potatoes/rice/vegie/fruit
diet, - and then slowly adding things back in after healing can help
determine if you have other food intolerances.

If you're not sure of something, ask questions on this board, - there
are so many people here that have been down this path already that
it's likely someone will have the answer. I hope you feel better real soon!
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#5 Tallforagirl

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Posted 06 January 2009 - 01:06 PM

You're going to need to check everything that goes into your body,
touches your body, or touches the food that goes into your body.
That not only includes food, it includes toothpaste, medications,
vitamins, shampoo, moisturizers. Burnett's vodka is grain based, -
some of us are so sensitive that we can't grain based products
even though they've been distilled multiple times; you might want
to switch to one of the potato based vodkas, at least until your
system heals and stops reacting. Careful with wine, - while it isn't
normally made with gluten containing products, sometimes it is
aged in barrels that were sealed with gluten, and can cause a
reaction if you are very sensitive.


I think the key here is "if you are very sensitive". There are a very few celiacs who would be this sensitive (though I do not dispute that they are). Unless you are swallowing it, it is not going to gluten you. You do need to check any vitamin supplements and medication you take though. Check the label or ask you pharmacist.

Most celiacs don't need to worry about distilled alchohol, unless a gluten ingredient is added later in production. I've never heard of the wine thing - again it seems like unless you are one of the few who are very sensitive, you won't need to worry. There wouln't be enough gluten in the barrel to cause gut damage.

Use basic kitchen hygiene with regard to crumbs and good sense (not stirring gluten-free foods with the same spoon you're using at the same time to stir the gluteny pasta, no double dipping for condiments etc). Soap and water and a good scrub will cleanse your kitchen items of gluten, though in the long term it may be easier to get seperate items for gluten-free such as bread board, pasta strainer. A toaster is very difficult to rid of gluteny crumbs, so you may want to get a new one just for your gluten-free bread.

Different people feel better at a different rate. For some it's immediate, for some it can take many months, so just eat healthily, and see how you go.

I strongly recommend seeing a good dietician, who is experienced in celiac disease, this is one thing that helped me enormously.
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#6 Nichelob

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Posted 06 January 2009 - 02:55 PM

Thanks for all the replies. They all help.

I have a few other questions and want to thank all of you for reading and helping.

1. As for my symptoms and being new to all of this, I am concerned about my mental well-being also. This feeling of not being healthy, almost a denial it is Celiac and something more severe...has anyone else felt this?

2. Please don't think I am crazy even though this just might be me just going crazy, but I feel like since all of this has been going on, my vision in my left eye is either blurring, lazy eye or gets blurry at random times. I find myself trying to check my sight from time to time by reading signs far away. It's almost as if my ability to focus has gone out the wondow. I have always been 20/20 and in 100% health and now I feel like I am falling apart. Has anybody ever experienced vision issues or thoughts that their vision was being effected?

3. My old coffee pot. Do I need to replace the whole thing? It has the metal strainer in it, not the paper strainers. I never used to check the coffee I was brewing until this diagnosis.

4. My headache is not severe, but very dull and just to the point where noticing it more of a nuisance. Is that a typical Celiac (Gluten) headache?

5. Can somebody describe their feeling of "fog" and what they experienced? I am just really concerned and nervous about all of this.

I know I should be thankful that it is celiac disease and not worse, but I am trying to cope with all of these new and often unpleasant feelings I am having.

Thank you all again...
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#7 Grrranny

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Posted 06 January 2009 - 07:50 PM

Hiya Newbie,

Welcome to the club! I bought a bottle of Smirnoff Triple Distilled vodka before Thanksgiving. I had a few drinks, and left it alone for a while. Around Christmas there were a few days when I had a couple of drinks each evening. That set off a flare-up like crazy. I found out that most vodka is made with grains, hah, guess what?

To avoid that altogether, only buy vodka that is potato vodka only. No mixtures or anything. There is a brand, Lubo(somethingorother), which is potato vodka only. That will not set off a reaction, but you can still have a drink. Good news??

We are ALL amateurs at this.

Good luck with everything.

Grrranny

Hello All,

First off, I am sorry this is so long - I am an amateur Celiac :D

I was diagnosed with Celiac on the 22nd of December. Matter of fact, I was driving back to hometown for Christmas when the doctor's office called to confirm - biopsy and blood panel were positive. I am 31 and was raised in an Italian family (so gluten has been a staple). I never had any syptoms, until around October when I was under a lot of stress and received a flu shot around the same time. My GI said that I have had this for years because my Villi were so flat - as he saw in my biopsy. So why no symptoms until now?

I am very concerned if my symptoms seem consistent with Celiac Disease.

I have a loss of appetite, loss of sex drive, an overall feeling of just not being well. I have a mild headache and almost a lack of concentration, "head in the clouds" feeling. I have lost weight - I was 182 (a little heavy for me anyways) before my colon/endoscopy on December 10th. I am at 171 now. Sometimes my stools are loose, sometimes they seem to want to begin to form.

Over the holidays, I really made sure I was eating "Gluten Free" products. My stomach gurling began to subside a bit. During the holidays, I was feeling better, less of the symptoms above. I was drinking Vodka (Burnett's Quadruple distilled) and Diet Ginger Ale (Seagram's) the entire time. For New Years I switched to Burnett's Vanilla Vodka and Diet Ginger Ale. After New Year's, I have had this mild, lasting headache, my stools have become loose, and just an overall anxiety feeling that something else is wrong. My girlfriend has been amazing in supporting me, but we didn't know that hazelnut coffee (not syrup flavored, but in the bean) may have gluten in it which I had been drinking, now back to black. We also weren't 100% educated on de-contaminating our kitchen either. So these things may have been the cause. Since New Year's, these feeling have lasted, today is January 6th. My headache is beginning to subside and my stools are a little more formed. My stomach activity has also slowed a bit.

I am really concerned with my weight loss and the headache/concentration "head in the clouds" feelings.

As soon as I found out my diagnosis, I have been doing my best to avoid Gluten containing foods and have been pretty religious reading this site and others out there. I am slowly but surely getting there though.

Thoughts and opinions are greatly appreciated.

Thank you all!

Cheers!


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#8 hknowlto

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Posted 07 January 2009 - 08:03 AM

[quote name='Nichelob' date='Jan 6 2009, 02:55 PM' post='498044']
Thanks for all the replies. They all help.

I have a few other questions and want to thank all of you for reading and helping.

1. As for my symptoms and being new to all of this, I am concerned about my mental well-being also. This feeling of not being healthy, almost a denial it is Celiac and something more severe...has anyone else felt this?


I can respond to your symptom listed above. I felt for a long time that anyone feeling like I was feeling must have a fatal illness and I would not live long. That is so nerve wracking. I had been gluten free for about 3 months BEFORE having a gastroscopy---it did not show a problem ,but blood tests verified my antibodies were elevated.

I have been gluten free for about 6 months and am doing so much better. I think I still get some contamination now and then. It is almost like a cycle of feeling great for a few weeks and then problens for a week or so. I continue to work on it. My wife is a saint and has virtually become a gluten free chef. I am not deprived of excellent tasting meals at all! Garbonzo bean brownies are one of my favorite desserts.

Your girlfriend sounds like a keeper! Keep working at it. It does improve.

Herb
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#9 Nichelob

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Posted 07 January 2009 - 08:16 AM

So my fav. drink of choice was Vanille Vodka/Ginger Ale, that is until New Years. I think maybe the flavoring has Gluten in it somewhere. So now I will switch to potato vodka and Ginger Ale.

My question is about Ginger Ale though. I have read on this forum that ginger ale is gluten-free. I also read that caramel coloring contains Gluten. If that is the case, how can Ginger Ale be Gluten Free.

Does anyone know about Ginger Ale? I prefer the Diet variation because I am not big on consuming so much sugar.

Thanks again!
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#10 NoGluGirl

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Posted 07 January 2009 - 08:29 AM

Hello All,

First off, I am sorry this is so long - I am an amateur Celiac :D

I was diagnosed with Celiac on the 22nd of December. Matter of fact, I was driving back to hometown for Christmas when the doctor's office called to confirm - biopsy and blood panel were positive. I am 31 and was raised in an Italian family (so gluten has been a staple). I never had any syptoms, until around October when I was under a lot of stress and received a flu shot around the same time. My GI said that I have had this for years because my Villi were so flat - as he saw in my biopsy. So why no symptoms until now?

I am very concerned if my symptoms seem consistent with Celiac Disease.

I have a loss of appetite, loss of sex drive, an overall feeling of just not being well. I have a mild headache and almost a lack of concentration, "head in the clouds" feeling. I have lost weight - I was 182 (a little heavy for me anyways) before my colon/endoscopy on December 10th. I am at 171 now. Sometimes my stools are loose, sometimes they seem to want to begin to form.

Over the holidays, I really made sure I was eating "Gluten Free" products. My stomach gurling began to subside a bit. During the holidays, I was feeling better, less of the symptoms above. I was drinking Vodka (Burnett's Quadruple distilled) and Diet Ginger Ale (Seagram's) the entire time. For New Years I switched to Burnett's Vanilla Vodka and Diet Ginger Ale. After New Year's, I have had this mild, lasting headache, my stools have become loose, and just an overall anxiety feeling that something else is wrong. My girlfriend has been amazing in supporting me, but we didn't know that hazelnut coffee (not syrup flavored, but in the bean) may have gluten in it which I had been drinking, now back to black. We also weren't 100% educated on de-contaminating our kitchen either. So these things may have been the cause. Since New Year's, these feeling have lasted, today is January 6th. My headache is beginning to subside and my stools are a little more formed. My stomach activity has also slowed a bit.

I am really concerned with my weight loss and the headache/concentration "head in the clouds" feelings.

As soon as I found out my diagnosis, I have been doing my best to avoid Gluten containing foods and have been pretty religious reading this site and others out there. I am slowly but surely getting there though.

Thoughts and opinions are greatly appreciated.

Thank you all!

Cheers!

Dear Nichelob,
You symptoms are typical. Cross-contamination is so difficult to think of everything. Your toothpaste, mouthwash, even kissing your significant other can gluten you. A microscopic amount makes me violently ill, so I have to be extremely careful. It is best to get new cookware if you can as well as utensils. This is a lot to deal with, so do not feel bad if you are overwhelmed. Feeling this way is natural. If you like, I can e-mail you a list.

Sincerely,
NoGluGirl
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Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985
Asthma - 1994
Ovarian Cyst - May 1999
Anemia - 2000
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Bloodwork for Celiac - November 2000 negative
Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy
Fibromyalgia - June 2001
IBS - June 2001
Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.
Thyroid Disease - August 2004
Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

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#11 JNBunnie1

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Posted 07 January 2009 - 08:37 AM

So my fav. drink of choice was Vanille Vodka/Ginger Ale, that is until New Years. I think maybe the flavoring has Gluten in it somewhere. So now I will switch to potato vodka and Ginger Ale.

My question is about Ginger Ale though. I have read on this forum that ginger ale is gluten-free. I also read that caramel coloring contains Gluten. If that is the case, how can Ginger Ale be Gluten Free.

Does anyone know about Ginger Ale? I prefer the Diet variation because I am not big on consuming so much sugar.

Thanks again!

If you google your ginger ale's brand name and the word gluten together, you can usually find something somwhere that tells you if it's safe.

And you can always just add a dab of vanilla flavoring to your drink!

As for whether your symptoms are normal or not, ALL symptoms are normal! Because of the way this disease affects people's nervous systems, pretty much anything from ataxia to depression to zits can be from Celiac. It will get better, I promise. And brain fog is something 99% of Celiacs have at first. Basically you just can't think straight and your brain is fuzzy. It passes.
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If you're going through hell, keep going. ~Winston Churchill

#12 Nichelob

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Posted 07 January 2009 - 08:45 AM

If you google your ginger ale's brand name and the word gluten together, you can usually find something somwhere that tells you if it's safe.

And you can always just add a dab of vanilla flavoring to your drink!

As for whether your symptoms are normal or not, ALL symptoms are normal! Because of the way this disease affects people's nervous systems, pretty much anything from ataxia to depression to zits can be from Celiac. It will get better, I promise. And brain fog is something 99% of Celiacs have at first. Basically you just can't think straight and your brain is fuzzy. It passes.



Hey JNBunnie1,

That's exactly the feeling of my brain fog. How long typically does this last?

It's so hard to believe that Gluten can make all this happen, so the hypochondriac in me plays mind games thinking it is something must more severe. Is that a feeling some of you get?

Thanks!
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#13 Nichelob

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Posted 07 January 2009 - 08:58 AM

Thanks for all the replies. They all help.

I have a few other questions and want to thank all of you for reading and helping.

1. As for my symptoms and being new to all of this, I am concerned about my mental well-being also. This feeling of not being healthy, almost a denial it is Celiac and something more severe...has anyone else felt this?


I can respond to your symptom listed above. I felt for a long time that anyone feeling like I was feeling must have a fatal illness and I would not live long. That is so nerve wracking. I had been gluten free for about 3 months BEFORE having a gastroscopy---it did not show a problem ,but blood tests verified my antibodies were elevated.

I have been gluten free for about 6 months and am doing so much better. I think I still get some contamination now and then. It is almost like a cycle of feeling great for a few weeks and then problens for a week or so. I continue to work on it. My wife is a saint and has virtually become a gluten free chef. I am not deprived of excellent tasting meals at all! Garbonzo bean brownies are one of my favorite desserts.

Your girlfriend sounds like a keeper! Keep working at it. It does improve.

Herb
[/quote]


Yeah, those feelings alone I think are killing me, at least the anxiety of thinking something is much more severly wrong with me that a Gluten intolerence.

My GI really emplained my gastro/endoscopy results to the "T".

First the biopsy: He too said everything with the colon/endoscopy looked normal. Then they looked under the microscope and said my Villi were so flat that I have had this for years.

Then I was sent for a blood panel to confirm, and it came back positive.

The puzzling thing is that I haven't had any symptoms for over 30 years until about October of this year when I was under a lot of stress. It all started with "D" after I got a flu shot and antibiotics at a physical I went for. That last for a week straight and then the bloating, gurgling stomach, (which still gurgles from time to time). Sometimes my stools are loose, and sometimes they want to form.

I guess I have a long time to wait before I am normal again because I have been doing this damage to my insides for so long, but just never knew it.

It's hard and difficult, but I know I will get there.
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#14 hknowlto

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Posted 07 January 2009 - 09:27 AM

YOU HAVE CELIAC'S. The biggest gift you can give yourself now is to accept and believe it! I was a cynic for quite a while. It does seem strange that it hits what appears to be out of the blue. My wife said for years and years there must be something wrong with me.

I had gall bladder removal and a kidney resection 4 or 5 years ago. I also retired after 37 years of teaching chemistry and math. Those appear to be the precipitating events.

Herb
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#15 rumbles

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Posted 07 January 2009 - 11:22 AM

I have the vision problems that you mentioned, plus was having a problem
with halos around lights at night (so much for the 20/15 vision after RK!).
One eye is worse than the other. B12 helped some with night vision problems
and halos. Leutine helped a bit more, - before the leutine, I couldn't read the
clock in my car without squinting, and I'd have to be pretty close to a speed
limit sign to focus clearly; it got me through a DMV eye test a couple months
ago, but just barely. Since then, I've added zeaxanthin to the leutine and B12,
and within about an hour after taking it, my distance vision is back to perfect,
and my reading glasses are a bit too strong. It wears off though, - when I go
to bed at night, I can read the digital clocks in the room perfectly, - by the
time I get up they've gone blurry again.

As for the headaches, - there's no magic answer as to how long it will take
for them to clear up. They could be directly from the celiac, or they could
be from an associated ongoing food allergy/histamine reaction.
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