Could I Have Celiac'S Disease?

[Jamie Michael]

I am 21 years old and a college student who is very frustrated with my daily stomach problems. I have been to the doctor and they ran different blood tests (not one for celiac though) and he concluded that I probably had IBS and that there was nothing I could do for it. Not want I wanted to hear. So after I found out about celiac I have been watching what I eat to see exactly what gives me problems. I really think this could be what I have.

Here are my symptoms:

-Bloating

-Constipation

-Diarrhea

-Gas

-Rumbing Stomach all the time

-Daily headaches

-Eczema on hands, buttocks, legs

-Fatigue

-Can't seem to gain any weight

I have lost about 5 pounds this year which is not good at all. I need to be gaining weight but my doctor says I just have a high metabolism and it's nothing to worry about.

It seems like when I have a stomach issue it is only about 30 minutes to an hour after I eat something with wheat or bread.

What do you all think? I know I should get tested but it takes so much time to get an appointment and I want to start a gluten-free diet now to see if I can get rid of these symptoms.

Thanks!

Jamie

[jackay]

I am 21 years old and a college student who is very frustrated with my daily stomach problems. I have been to the doctor and they ran different blood tests (not one for celiac though) and he concluded that I probably had IBS and that there was nothing I could do for it. Not want I wanted to hear. So after I found out about celiac I have been watching what I eat to see exactly what gives me problems. I really think this could be what I have.

Here are my symptoms:

-Bloating

-Constipation

-Diarrhea

-Gas

-Rumbing Stomach all the time

-Daily headaches

-Eczema on hands, buttocks, legs

-Fatigue

-Can't seem to gain any weight

I have lost about 5 pounds this year which is not good at all. I need to be gaining weight but my doctor says I just have a high metabolism and it's nothing to worry about.

It seems like when I have a stomach issue it is only about 30 minutes to an hour after I eat something with wheat or bread.

What do you all think? I know I should get tested but it takes so much time to get an appointment and I want to start a gluten-free diet now to see if I can get rid of these symptoms.

Thanks!

Jamie

[jackay]

Oops! I tried to reply and I posted nothing.

It definitely sounds like you have gluten intolerance. You may or may not have celiac.

Doctors just seem to paste the IBS diagnosis when they don't come up with anything else.

I lost 38 pounds and was told I had a high metabolism. Well, I didn't have a high metabolism in the past. I gave up eating gluten and didn't get any better. I then made sure that I wasn't getting contaminated from gluten in supplements, prescriptions, soaps, cutting boards, nonstick pans, etc. I started washing my hands before they even came close to my mouth. Things started changing.

The only way to know if gluten is bothering you is to eliminate it completely and see if you start feeling better. If you can tell withing 30 minutes that wheat or bread bothers you, most likely you are intolerant.

I hope you start feeling better soon! Check out other topics in the gluten-free forum and you'll get tons of information.

[nutralady2001]

The "eczema" could be dermatitis herpetiformis which is conclusive of celiac disease

[rueyn]

Just a heads up - going gluten-free before you get tested will effect the test. The docs can't test for antibodies if you've been off gluten for any amount of time.

I'm pretty sure you can get tested for Celiac other places than a GI doc, so if there is a long wait for your GI doc, you can always try your GP. Or just call your GI and tell him you want to get tested. You might not have to wait for an appointment, just go in and get the blood drawn, especially if you're already under his care for other things.

If a blood test confirmation doesn't matter to you either way, then whether or not you try going gluten-free now is up to you. Just wanted to let you know

[Jamie Michael]

Just a heads up - going gluten-free before you get tested will effect the test. The docs can't test for antibodies if you've been off gluten for any amount of time.

I'm pretty sure you can get tested for Celiac other places than a GI doc, so if there is a long wait for your GI doc, you can always try your GP. Or just call your GI and tell him you want to get tested. You might not have to wait for an appointment, just go in and get the blood drawn, especially if you're already under his care for other things.

If a blood test confirmation doesn't matter to you either way, then whether or not you try going gluten-free now is up to you. Just wanted to let you know

Thank you. I have been gluten free for 4 days now. If I were to get tested this week would it make a difference? Also, I'm not feeling too much different than I did when I wasn't gluten-free. Does it take a while for the symptoms to go away?

[rueyn]

Thank you. I have been gluten free for 4 days now. If I were to get tested this week would it make a difference? Also, I'm not feeling too much different than I did when I wasn't gluten-free. Does it take a while for the symptoms to go away?

Unfortunately, yeah, it does matter. If you need/want to get tested, you'll have to go back to eating the gluten (major controversy on this...read some of the threads about doctors who make their patients go back on gluten before testing).

Some people immediately feel better when they go gluten-free, for others it takes a longer amount of time. For me it literally took a day, but I've seen some people where it takes a week or longer.

Honestly you can have Celiac without having any stomach-type symptoms; it's one of those fun diseases where you just never know

[mushroom]

Thank you. I have been gluten free for 4 days now. If I were to get tested this week would it make a difference? Also, I'm not feeling too much different than I did when I wasn't gluten-free. Does it take a while for the symptoms to go away?

I am not expert on this, but I believe if you were tested within a week of going gluten free the antibodies should still be sufficiently high to show up. But if the doctor wanted to schedule a biopsy by the time you got in for that it would probably be too late.

You say you have not noticed much improvement, so it may not be too painful for you to resume gluten until you get this resolved.

[CSU Grad]

I am 21 years old and a college student who is very frustrated with my daily stomach problems. I have been to the doctor and they ran different blood tests (not one for celiac though) and he concluded that I probably had IBS and that there was nothing I could do for it. Not want I wanted to hear. So after I found out about celiac I have been watching what I eat to see exactly what gives me problems. I really think this could be what I have.

Here are my symptoms:

-Bloating

-Constipation

-Diarrhea

-Gas

-Rumbing Stomach all the time

-Daily headaches

-Eczema on hands, buttocks, legs

-Fatigue

-Can't seem to gain any weight

I have lost about 5 pounds this year which is not good at all. I need to be gaining weight but my doctor says I just have a high metabolism and it's nothing to worry about.

It seems like when I have a stomach issue it is only about 30 minutes to an hour after I eat something with wheat or bread.

What do you all think? I know I should get tested but it takes so much time to get an appointment and I want to start a gluten-free diet now to see if I can get rid of these symptoms.

Thanks!

Jamie

Jamie,

You certainly are having some trouble, for sure.

Regardless of what you hear here, please do not take things from community members as a diagnosis of your problem!

You need to see your doctor about any difficulties that cause you to loose weight, especially if it is continuous!

That said, also be aware that not all doctors are good doctors. You as a patient need to be proactive and see other doctors and get other opinions from other doctors. If you are not satisfied with an answer from a doctor, go to another one!

The symptoms you describe do match many diseases, celiacs being one of them.

As you try to find out satisfactory answers from trained medical professionals, you also have the responsibility to yourself to attempt to adjust any behaviors of your own that may be causing the problems. Therefore, if you feel that wheat may be the problem, alter your diet, making sure to get adequate amounts of complex carbs, and protein, that you took away with taking away the wheat. Also, be sure to eat a balanced diet!

Additionally, check your food sources...are you eating food that may be spoiled, contaminated by bacteria, etc. ? These will also cause the symptoms you describe.

My personal belief is that IBS is a doctor's invention to cover the fact that they don't know what is really going on. But, its up to you to find the answers, they won't.

[Jamie Michael]

Unfortunately, yeah, it does matter. If you need/want to get tested, you'll have to go back to eating the gluten (major controversy on this...read some of the threads about doctors who make their patients go back on gluten before testing).

Some people immediately feel better when they go gluten-free, for others it takes a longer amount of time. For me it literally took a day, but I've seen some people where it takes a week or longer.

Honestly you can have Celiac without having any stomach-type symptoms; it's one of those fun diseases where you just never know

I made an appointment for Thursday so I guess I will start eating gluten until then. Does anyone know of another other possible tests the doctor could run? I just really want to figure out what is wrong with me and I'd like him to do as many tests as he needs to in order to figure this out.

[Jamie Michael]

Thank you all for your input and help. CSU Grad, do you have any other ideas of what disease this might be? I have tried changing my diet by doing things like eating more fiber, taking probiotics, taking vitamins, not drinking caffeine. Nothing seems to work and it's just getting real old. It's to the point where I can't go out to eat without having to worry about stomach issues.

[CSU Grad]

Thank you all for your input and help. CSU Grad, do you have any other ideas of what disease this might be? I have tried changing my diet by doing things like eating more fiber, taking probiotics, taking vitamins, not drinking caffeine. Nothing seems to work and it's just getting real old. It's to the point where I can't go out to eat without having to worry about stomach issues.

Jamie,

There are many, many possibilities.

If this happens mostly when you "go out to eat", (and I didn't realize that is what you originally meant), then I would very strongly suspect that you are getting some form of "food poisoning", to use a general non-descriptive term :-) . You would be amazed at how dirty most commercial kitchens and employees are, as well as, how much spoiled food they feed to the customers!!

If these issues go away, when you are the only one in control of your food, then you know for sure, that you simply have a lower tolerance for food born illnesses, i.e. huge amounts of "bad" bacteria in your food, than others do.

The solution to this is to find a place you can trust and eat there, and avoid the other places. AND report the ones that make you ill to your local health department. Public health officials can not enforce the laws if no one reports the problems...

But also, as I've said a few times in other threads, if you feel better when you don't eat wheat, then don't eat wheat...it is not a required component of your diet to be healthy...this is something that we have been erroneously taught by the commercial food industry. You can be perfectly healthy and never eat wheat again!

[Jestgar]

To all posters, please remember that this an open forum and you should not take anyone's suggestion, or interpretation of your symptom's as medical advice. You have no idea what the person's background, or intention is.

[pearcenalaska]

Hi Jamie, I feel your pain. I am having a lot of the same problems you are and add to that acne. Not great when you are a teenager, even worse when you are 30! I stumbled on to info that said adult acne can be a symptom of gluten sensitivity.

I am concerned with the fact of being tested if on a gluten free diet. I started suspecting that I had a gluten sensitivity and began to change my diet. Unfortunately I can't tolerate dairy either. I realized that while I have been mostly off of gluten that I have been eating it hidden in stuff. I have been having the same digestive problems as before and made a doctor appointment to establish care and get this figured out. Thankfully I got a great doctor. He ordered a celiac panel along with various other allergy tests. Is there a possibility that my test can come back negative even if I have been being exposed to it in small doses? My son also just had the test done because he was having bad stomach pains regularly. We have to wait 10 days for the results. Waiting is a killer! I have to wait so long because I am in Alaska and they send it to a lab in Washington state.

From reading things on this message board I see that it is all highly varied and anything can happen! My doctor said that if the test comes back negative then he would have me come back in and we would talk about it. I do not want to have to do a gluten challenge! I am a full time student and mother of 3. I can only imagine what my face will look like if I have to eat it again!

[Jamie Michael]

Hi Jamie, I feel your pain. I am having a lot of the same problems you are and add to that acne. Not great when you are a teenager, even worse when you are 30! I stumbled on to info that said adult acne can be a symptom of gluten sensitivity.

I am concerned with the fact of being tested if on a gluten free diet. I started suspecting that I had a gluten sensitivity and began to change my diet. Unfortunately I can't tolerate dairy either. I realized that while I have been mostly off of gluten that I have been eating it hidden in stuff. I have been having the same digestive problems as before and made a doctor appointment to establish care and get this figured out. Thankfully I got a great doctor. He ordered a celiac panel along with various other allergy tests. Is there a possibility that my test can come back negative even if I have been being exposed to it in small doses? My son also just had the test done because he was having bad stomach pains regularly. We have to wait 10 days for the results. Waiting is a killer! I have to wait so long because I am in Alaska and they send it to a lab in Washington state.

From reading things on this message board I see that it is all highly varied and anything can happen! My doctor said that if the test comes back negative then he would have me come back in and we would talk about it. I do not want to have to do a gluten challenge! I am a full time student and mother of 3. I can only imagine what my face will look like if I have to eat it again!

I hate to hear that you are having some of the same problems as myself. I would never wish them on anyone as terrible as they are for me. From talking with my doctor he says that you should be on a normal diet for 2 weeks before the test. So if having gluten in small doses is normal to you then I think your test should come back accurately. I wish you the best!

[mushroom]

Hi Jamie, I feel your pain. I am having a lot of the same problems you are and add to that acne. Not great when you are a teenager, even worse when you are 30! I stumbled on to info that said adult acne can be a symptom of gluten sensitivity.

I am concerned with the fact of being tested if on a gluten free diet. I started suspecting that I had a gluten sensitivity and began to change my diet. Unfortunately I can't tolerate dairy either. I realized that while I have been mostly off of gluten that I have been eating it hidden in stuff. I have been having the same digestive problems as before and made a doctor appointment to establish care and get this figured out. Thankfully I got a great doctor. He ordered a celiac panel along with various other allergy tests. Is there a possibility that my test can come back negative even if I have been being exposed to it in small doses? My son also just had the test done because he was having bad stomach pains regularly. We have to wait 10 days for the results. Waiting is a killer! I have to wait so long because I am in Alaska and they send it to a lab in Washington state.

From reading things on this message board I see that it is all highly varied and anything can happen! My doctor said that if the test comes back negative then he would have me come back in and we would talk about it. I do not want to have to do a gluten challenge! I am a full time student and mother of 3. I can only imagine what my face will look like if I have to eat it again!

Shannon, I hate to be the bearer of bad tidings, but the conventional wisdom says that for a test to be valid, i.e., a good chance of giving a positive result if you are celiac, that you need to be eating gluten for at least six weeks before the test, and eating the equivalent of at least four slices of bread a day. For you, this would no doubt be the equivalent of an extended gluten challenge.

The problem with being mostly gluten free and only being exposed to small amounts of gluten is that you react just as much to a small amount of gluten as a large amount; in fact, when you finally go gluten free, your reaction is often worse than before when even a crumb is consumed. So I would not get your hopes too high on getting a positive result. Again, I am sorry to have to tell you this. This is the reason I am self-diagnosed--went gluten free without the testing.

[pearcenalaska]

Thanks Jamie, it does stink but it is also nice to know what is wrong & do something about it.

Neroli, I figured as much but I don't care if it is positive or not. I am not going back! There is no positive result that is worth making me that ill and I don't have time to feel like crap for a couple of weeks or months! I just have to be more careful because I am getting glutened by too many things. I am also more interested in finding if I am allergic to other things like soy, eggs, etc. I know the dairy test won't come back accurate either because I haven't eaten dairy in 6 months.