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Diagnosed 2 Weeks Ago

pnltbox27

By pnltbox27
in Coping with Celiac Disease

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pnltbox27 Contributor
pnltbox27
Posted

hey guys my name is rob im 37 years old and the doc told me 2 weeks ago i had celiac disease, ive been gluten free for 4 days or at least i think i have . its pretty overwhelming looking at food labels for everything. man i didnt realize how many products had gluten in it. my entire pantry is off limits.i think i got a pretty good start on the gluten free diet, but my question is are there different levels of celiac, because my only symptoms are EXTREME GAS and diarreha which ive delt with pretty much my whole adult life so it just seems normal to me. my wife and coworkers beg to differ lol which is why i went to doc in the first place.it seems from reading these forums most people have some pretty severe reactions to gluten, so i guess what im wondering is it normal to expect my condition or the reaction to gluten to get worse over time??

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Lisa Mentor
Lisa
Posted

Rob:

Welcome to our world.

Celiac can have over 200 symptoms and you seem to have just a few. Perhaps you are one of the lucky ones that get an early diognosis. But, on the other hand, there are several people here that have Celiac and they have no symptoms. Celiac can cause damage, even if you are non-symptomatic.

I would not expect that you symptoms to worsen if you are totally gluten free. If so, they will improve greatly.

As you noted, gluten hides everywhere. Soy Sauce, toiletries, lotions, shampoos, (lipsticks ;) ) and cross contamination is a biggy.

There are some great folk here that can get you started with some gluten free grocery store products, that will be helpful.

Again welcome and feel free to ask away...

Lisa

CarlaB Enthusiast
CarlaB
Posted

Welcome!

Rob, for a pregnant woman a test is either positive or negative. Obviously the baby grows from being very small to quite large, but whether or not she's pregnant does not depend on the size of the baby.

In the same way, you either have celiac or you don't. The variable is how much damage you have.

Once you start to heal, you will most likely become more sensitive to small amounts of gluten. I have another analogy. Think of a smoker. The smoker's health is generally bad, so he quits. After some time goes by, a single cigarette will make him sick, where he used to smoke a pack or two a day and never felt sick from one. This is how it is, you felt bad in general (gas and diarrhea is not comfortable!), then you go gluten-free and a small amount makes you feel ill, but your overall health is very much improved.

Hang around, you'll learn a lot!

cathzozo Apprentice
cathzozo
Posted

Rob,

You may notice over the next few weeks that some weird symptoms that you would never connect to Celiac are better. In fact, they may not be symptoms that you really even noticed or thought were worth addressing. I never realized how badly my shins always itched until they stopped itching. Then the next time I got glutened, I realized, oh yeah - my legs used to feel like this all the time - how horrible!

It's possible for your reaction to gluten to become more severe or just change slightly once your intestines have a chance to heal. So you may become more sensitive or you may not. But since you currently have diarreha, you probably will continue having that as a symptom. You'll probably be able to tell when you accidentally get glutened.

Good luck on the diet!

happygirl Collaborator
happygirl
Posted

Rob,

Just wanted to welcome you to the board. You have been given some great advice so far.

Celiac Disease is Celiac Disease.....some people have NO symptoms, some people are debilitated by all 200 symptoms, and everyone else lies somewhere in between. Ingesting gluten sets off the autoimmune response (turns the switch "ON") and our goal is to keep the switch set to OFF. Doesn't matter if you know its been turned on or not--damage can still occur, even without the presence of symptoms. Lesser symptoms doesn't make you a lesser Celiac... :)

Stick around and ask away....

Laura

pnltbox27 Contributor
pnltbox27
Posted
  • Author

thank you all for the awesome advice ,it really helps, i am absolutly ready to commit to this huge life change.after reading some of the posts in other threads i kinda felt like my symptoms didnt merit such a huge life change, but with your help i realize celiac is celiac and the best thing is to get this thing in check. so thanks again ive learned more on this site in 2 days than my doctor ever told me about celiac he just told me i had it and sent me on my way

zansu Rookie
zansu
Posted

The worst celiac symptoms are the ones YOU have :lol:

the ones other people have can't possibly as bad ;)

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pnltbox27 Contributor
pnltbox27
Posted
  • Author
The worst celiac symptoms are the ones YOU have :lol:

the ones other people have can't possibly as bad ;)

you are probably right .but ive lived with them for so long without knowing what was wrong it somehow seemed normal

happygirl Collaborator
happygirl
Posted

Rob, I think your experience with a lack of knowledge from the general medical community is very common, unfortunately. Many of us have experienced the same thing, which led us to read, research, read journal articles, asking questions, etc. We learned that it was up to us to learn what we needed.

Its frustrating, but I've learned that generally, those who live this every day are the ones who know it best! Plus, this board has a self-check feature per se, in that people post, and if incorrect information is posted, generally, someone will come along to correct it. There are a lot of seasoned celiacs on this board with invaluable information.

pnltbox27 Contributor
pnltbox27
Posted
  • Author
Rob, I think your experience with a lack of knowledge from the general medical community is very common, unfortunately. Many of us have experienced the same thing, which led us to read, research, read journal articles, asking questions, etc. We learned that it was up to us to learn what we needed.

Its frustrating, but I've learned that generally, those who live this every day are the ones who know it best! Plus, this board has a self-check feature per se, in that people post, and if incorrect information is posted, generally, someone will come along to correct it. There are a lot of seasoned celiacs on this board with invaluable information.

thanks again to all of you its nice to know that there is help out there

DebbieInCanada Rookie
DebbieInCanada
Posted
... There are a lot of seasoned celiacs on this board with invaluable information.

But we are all seasoned with gluten-free spices, and no MSG!! :P:lol::blink:

(Ok, and some of us think we have humor too)

Debbie

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      how much gluten do I need to eat before blood tests?

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