I'm New To All This, And A Bit Scared.

[Davyn]

Hey there everyone,

My name's Davyn, and I'm 20 years old. For the past few years, I've been having many and varied symptoms, and at first I brushed it off as being linked to my lactose intolerence. Then, when I started reading about Celiac, I realised how many of the symptoms I display, and have been displaying for years. So, I started going Gluten-free a wekk or so ago, but I'm miserable. I got to college in New Hampshire, and although the school is small and well-knit, the cafeteria food always seems to contain gluten.

I'm going to talk to the head cook today, and give him a list of safe and unsafe things. Hopefully, he'll be able to come up with things I can eat. Its better than starving, I guess.

A lot of my symptoms just started getting worse a month ago, which is why I started seeking a diagnosis. Here's my symptoms:

Loose, pale, and foul-smelling stools

Weight loss (probably due to my avoiding most food)

Back pain (which I'm not sure is related)

Gas

Stomach pain/bloating

Mouth sores (I had a really bad one about 6 months ago, right on the center of my tongue)

Tooth sensitivity (Probably from enamel loss)

Indigestion

Dizziness

Mood swings (probably because I'm hungry, haha...)

Constipation

Weakness/fatigue (I've felt like my legs are going to give out beneath me)

I'm a little scared, for many reasons. One is that I'll go in, and the tests will come back negative, and I'll have to go through more testing until they figure out what IS wrong with me. Another fear is that I have it, and I'll have to be careful for the rest of my life. Yet another is that the test will come back negative, but it woudl be a false positive. My family's always seen me as a hypochondriac. I've been treated for depression, anxiety, and gender dysphoria for 5 years now.

If anyone has any advice that they could give, or even just some encouragement, I would appreciate it.

Thanks,

Davyn

[spunky]

I had all of the above except for the dizziness...plus, I really had something i called constarrhea...as it seems i had both C and D every day, hard to explain, but it was very uncomfortable. I felt like I had some weapon about to blow out my a@@ all the time. I read about celiac too, thought it was worth a try for myself, and then got totallly off the gluten. I have lists hanging up where I can quickly refer to ingredients in case I'm not sure, and when I'm still not sure, I don't indulge. I'm just self-diagnosed, and self-treated, but my symptoms are almost unnoticeable by now, after almost 8 full months gluten free. It takes a while, though, and you might not see improvement for some time.

I had already been totally away from dairy products for the last 10 years.

[CarlaB]

Welcome!

The first thing I want to mention is that you should not be eating gluten-free until AFTER the testing is completed or you are in danger of it being a false negative (which can happen anyway).

If you feel better gluten-free, you may have a gluten intolerance that current testing just does not find or your damage is just not bad enough to find ... but worry about that if you testing comes out negative.

Gluten intolerance can have many neurological consequences, especially for those with gluten intolerant genes rather than the actual celiac genes. Many of your neurological issues may clear up on a gluten-free diet.

Stick around here and ask lots of questions. Don't be anxious over things you don't know yet (test results). You will only have one scenario to work out, you don't need to worry yourself to death over working out several different scenarios now!

Edit -- what kind of testing are you having done next week?

[Davyn]

I had all of the above except for the dizziness...plus, I really had something i called constarrhea...as it seems i had both C and D every day, hard to explain, but it was very uncomfortable. I felt like I had some weapon about to blow out my a@@ all the time. I read about celiac too, thought it was worth a try for myself, and then got totallly off the gluten. I have lists hanging up where I can quickly refer to ingredients in case I'm not sure, and when I'm still not sure, I don't indulge. I'm just self-diagnosed, and self-treated, but my symptoms are almost unnoticeable by now, after almost 8 full months gluten free. It takes a while, though, and you might not see improvement for some time.

I had already been totally away from dairy products for the last 10 years.

Hahaha! I totally know what you mean about the C and D thing. I have that. It's like...nothing comes out, and when it does...geez. And I feel REALLY bad because I live in a dorm, and, well...Let's just say it stinks. I should really get away from dairy products, too. I've cheated a few times by taking Lactaid. Maybe that's not such a good idea anymore.

[CarlaB]

Hahaha! I totally know what you mean about the C and D thing. I have that. It's like...nothing comes out, and when it does...geez. And I feel REALLY bad because I live in a dorm, and, well...Let's just say it stinks. I should really get away from dairy products, too. I've cheated a few times by taking Lactaid. Maybe that's not such a good idea anymore.

It's really not a good idea in case you're sensitive to the casein rather than the lactose. Casein sensitivity can cause the same symptoms as gluten sensitivity, and many of those sensitive to gluten are sensitive to casein as well. If it is the lactose bothering you, lactaid would fix the problem, but you won't be able to test that until you're gluten-free.

[spunky]

I just realized my above posts seems rather cold and insensitive. Sorry about that. I'm pretty new here, myself, and a little wary about advising others.

But whatever route you go, if you find out or attempt to find out if gluten is the problem, it doesn't really seem like such an awful thing. I say this because I am so GLAD to be done with these sypmtoms. I actually feel like a normal human being these days. I know there's more healing before it's really behind me, but when I think of the hassles of being careful about diet vs. the way I felt every day, I'll choose the diet anyday. It's nice to feel good, whatever the price.

[Davyn]

Welcome!

The first thing I want to mention is that you should not be eating gluten-free until AFTER the testing is completed or you are in danger of it being a false negative (which can happen anyway).

If you feel better gluten-free, you may have a gluten intolerance that current testing just does not find or your damage is just not bad enough to find ... but worry about that if you testing comes out negative.

Gluten intolerance can have many neurological consequences, especially for those with gluten intolerant genes rather than the actual celiac genes. Many of your neurological issues may clear up on a gluten-free diet.

Stick around here and ask lots of questions. Don't be anxious over things you don't know yet (test results). You will only have one scenario to work out, you don't need to worry yourself to death over working out several different scenarios now!

Edit -- what kind of testing are you having done next week?

Thanks a bunch! I guess I really shoudln't worry about it until then, eh?

I'm not exactly sure what's going to happen next week, but I'm going to make sure something gets done. I'm basically going to my doctor to tell him my symptoms, and see where it goes from there. I want to get it done asap, though. There a lot of other issues in my life right now that a really taking a toll on me as well.

I also forgot to mention that I have what my Mom seems to think is eczema, but I've done a bit of research, and it looks like mild dermatitis herpetoformis. I've had it for about a year now, and its starting to spread.

I guess I really just don't know what to expect, is all.

Thanks!

I just realized my above posts seems rather cold and insensitive. Sorry about that. I'm pretty new here, myself, and a little wary about advising others.

But whatever route you go, if you find out or attempt to find out if gluten is the problem, it doesn't really seem like such an awful thing. I say this because I am so GLAD to be done with these sypmtoms. I actually feel like a normal human being these days. I know there's more healing before it's really behind me, but when I think of the hassles of being careful about diet vs. the way I felt every day, I'll choose the diet anyday. It's nice to feel good, whatever the price.

Its ok! I didn't take affense to anything anyone has said on here. Its actually quite helpful! And in my opinion, even advise of people who are new to something can be really good advice. Sometimes it gives you more insight then you would ever think.

[ehrin]

Hi Davyn - Welcome!

I also am in NH, Manchester, and also went to school there. Where do you go?

I went to NHC (now it's SNHU).

[Canadian Karen]

I just realized my above posts seems rather cold and insensitive. Sorry about that. I'm pretty new here, myself, and a little wary about advising others.

But whatever route you go, if you find out or attempt to find out if gluten is the problem, it doesn't really seem like such an awful thing. I say this because I am so GLAD to be done with these sypmtoms. I actually feel like a normal human being these days. I know there's more healing before it's really behind me, but when I think of the hassles of being careful about diet vs. the way I felt every day, I'll choose the diet anyday. It's nice to feel good, whatever the price.

Hi Spunky,

I saw nothing that suggested "cold and insensitive" in your above post. You are doing just fine!

Davyn, you have gotten great info so far. If it turns out celiac, you know the route to go, but if tests come back negative, there is also the possibility that you have gluten intolerance without actually having actual celiac. Also, added to the possibilities, is the fact that the test results quite often cannot be trusted when it says negative because it depends on the severity or advancement of the disease (i.e. you may be at the beginning stages, and not enough to register on the tests yet), or the lab doing the test could be inexperienced and not doing the more current, more accurate tests now available.

We have come to realize more than anything else that by doing the actual diet for a period of time is really the best diagnostic tool there is. Nothing validates your suspicions more than a positive response to the diet......

Glad you found us, and if and when you decide to try the gluten-free diet, let us know, we have a wealth of information for you!

Karen

[Davyn]

Hi Spunky,

I saw nothing that suggested "cold and insensitive" in your above post. You are doing just fine!

Davyn, you have gotten great info so far. If it turns out celiac, you know the route to go, but if tests come back negative, there is also the possibility that you have gluten intolerance without actually having actual celiac. Also, added to the possibilities, is the fact that the test results quite often cannot be trusted when it says negative because it depends on the severity or advancement of the disease (i.e. you may be at the beginning stages, and not enough to register on the tests yet), or the lab doing the test could be inexperienced and not doing the more current, more accurate tests now available.

We have come to realize more than anything else that by doing the actual diet for a period of time is really the best diagnostic tool there is. Nothing validates your suspicions more than a positive response to the diet......

Glad you found us, and if and when you decide to try the gluten-free diet, let us know, we have a wealth of information for you!

Karen

Thanks! I'll keep all that in mind!

<3 Davyn

Hi Davyn - Welcome!

I also am in NH, Manchester, and also went to school there. Where do you go?

I went to NHC (now it's SNHU).

I go to what used to be called White Pinies Institute in Chester. It's now Chester College. Original, eh? It's a really tiny school, about 300 students total, and it specialises in Studio Arts, Graphic Design, Illustration, Photography, and Professional and Creative Writing. I'm studying Creative Writing and Illustration, myself. I plan on using my skills to write comics. I've started writing a few, and I do all sorts of other things, too.

I have another question.

If I'm going to the doctor for the first time to start the diagnosis process, should I be eating things containing gluten, or should I try avoiding it? I don't want to start eating gluten again, because I've been feeling better stomach-wise without it. Sure, I'm cranky, but is there any way that I can be diagnosed even if I've already started a gluten-free diet?

[Guest nini]

if you want to try to get the most accurate results from any medical tests then, yes, you still need to be eating gluten. If you stay on the gluten free diet before testing it will skew your results because the body is amazing in it's ability to heal and if you do have it, your body can start the healing process quickly. You may also be in early stages and not get an accurate test result anyway. Your other option is to simply stay on the diet. Forego any testing and see how you do on the diet, after a while on the gluten-free diet, you may or may not want to challenge yourself by reintroducing gluten into your diet. It's your call. I can only tell you my experience, many years ago I researched my symptoms and discovered Celiac and the gluten-free diet and I tried it, did well on it, but doubted my self diagnosis... I let a Dr. talk me back into eating gluten because he said it was "all in my head" and then almost four years later I was very nearly dying and was finally sent to a gastroenterologist that correctly dx'ed me with Celiac. If I had just believed in my self dx I may have been able to prevent some other health complications, but I also wouldn't have found out that my daughter also has it. All that being said, it's your call. Do you trust your self dx enough to simply stay gluten-free and get on with the business of being healthy or do you need a Dr. to confirm it for you? Positive dietary response IS a valid diagnostic procedure and I wish that more of us had the confidence in our self diagnostic abilities after all we know our bodies better than the Dr. that spent 5 minutes with us. Now, if you weren't getting better you could still explore other underlying causes while still sticking to a gluten-free diet, it wouldn't affect any of those tests... I hope I'm making sense... lol

[CarlaB]

From hanging around here for a while, I have found that many of us, me included, do get rashes that aren't DH. Yours may or may not be. If it is, I think it's a dermatologist who does a biopsy (someone please verify) of the skin near the blemish. That diagnosis is definitive if positive that you do have celiac disease.

My doc says my rash is a result of all the stress on my body -- from life and from inflammation -- and will go away as soon as I get my system working optimally again.

Nini, as always, has some very good recommendations. I was one of those who was gluten-free, ate gluten for my testing, which all came out negative anyway. Negative tells you nothing ... with positive tests, you have it, but negative tests don't mean you can rule it out. So, I felt really bad for a time for no reason! I ended up at Enterolab, which is another option for you. Check them out at www.enterolab.com. Their tests are more sensitive, but not widely recognized. There is a benefit to that though -- I was tested and know I have a problem, but my insurance company doesn't recognize it as a conventional test, so I have no pre-existing condition. As nini said, though, dietary response is the best indicator ...

Now, you have a lot of information to digest and consider!! Please feel free to ask any other questions you may have ... maybe we can get you to quit sucking your thumb!! (Referring to your avatar!) LOL

[ehrin]

<3 Davyn

I go to what used to be called White Pinies Institute in Chester. It's now Chester College. Original, eh? It's a really tiny school, about 300 students total, and it specialises in Studio Arts, Graphic Design, Illustration, Photography, and Professional and Creative Writing. I'm studying Creative Writing and Illustration, myself. I plan on using my skills to write comics. I've started writing a few, and I do all sorts of other things, too.

Well I think going to a school that small may benefit you! I'm sure the chef will be must more agreeable to helping you because his student base is so small!

So do you live on campus? Or do you rent an apt? If you live on campus you may want to see if you can get permission to have a microwave in your room (or do it illegally )

Interesting major - I have a BA in English Language & Literature myself. I'm no creative writer - but I can minpulate the English language quite well! Good luck!