Symptoms And Approaching It....

[xzandra]

I've had a number of health issues over the last few years, which have come to a climax recently.

I am an 18 year old female, and my mother and I think I might have Celiac disease.

I have been dealing with depression and anxiety for many years now, but my emotions have become increasingly unstable. I have a lot of trouble with focusing, and paying attention. I am constantly irritable and have complete disinterest in things I used to love.

I've been having a number of problems with my stomach, I am in near constant pain, with severe nausea. I don't always throw up, but I constantly feel like I need to. I had an ultra sound, which came back normal. My weight fluctuates a fair amount, without a change in my diet. I've had a lot of abdominal bloating. I can't eat alot at once, but I always feel hungry, sometimes I crave something like I never have before. Even eating what I really want doesn't always make it go away. My bowel movements are slightly more frequent but very different from eachother.

I am always tired, no matter how much I sleep. I feel weak all the time, and it takes so much energy to do the smallest thing.

My skin and lips are always dry, no matter what I do. I also have dry mouth all the time. I've had sores in my mouth that dont seem like canker sores and I've never had a cold sore.

I have alot of back pain, all over but mostly in my middle and lower back. My hands cramp easily, and I get leg cramps alot. I also get cramps in my shoulders. I get tremors in my hands sometimes.

I have a headache 24/7 and had that headache for a few years now. I have panic attacks sometimes, and my eyes are deteriorating steadily even though they are healthy according to my optometrist. (I have reading glasses, and glasses for distance. I'm 18!!! I didn't even start wearing glasses until I was about 12 or 13).

I also have athsma, and when I had allergy testing about 18 months ago, at the athsma clinic I was told I have a sensitivity to milk, before that point we assumed I was lactose intolerant like my mother.

Because of the stomach problems, I had blood work done, and an ultrasound. The bloodwork, they said was normal (a few years ago, when I was having problems I was told I had problems with my iron, and electrolytes, so those aren't on there anymore? even though I feel the same). The ultrasound was clear, they tested everything, I am assuming, except internally (they were supposed to, but never asked or did so. I think they told my doctor I refused, untrue). I've been on too many anti-depressants, and other drugs for my mental health and they never really work all that well, alot of them made me sicker. I've been tested for alot of stuff and there has never been anything wrong with me. Everyone thinks I am making it up, or faking. But no one would want to feel like this, least of all me.

So, does this sound like Celiac? And how do I go about asking my doctor to test me for it? He doesn't think very highly of me....but I need answers....I can't keep living like this, every day is a struggle. So what test do I ask him to do?

[ShayFL]

If your doctor doesnt think very highly of you....then you need a NEW DOCTOR!!

Ask your NEW doctor for these:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

[xzandra]

If your doctor doesnt think very highly of you....then you need a NEW DOCTOR!!

Not in a position to. I've switched once, back to the doctor I had as a kid. But there is only one doctor's office in town and they don't LET you switch. Its so frustrating. Because they have this 'file sharing' form...and so many people don't even have a doctor... But thanks for the name of the tests I need to ask for

[roxie]

Sounds like Celiac Disease to me! I also had almost every symptom you listed before I went Gluten Free. The back pain and the extreme fatigue were the worst parts for me. I also felt like some people thought I was making it up. It was making me crazy. You definitely need to get tested. Good Luck!

[SGWhiskers]

I emphatically agree with Shay. I've had good doctors and bad and some that were nice, but didn't help much. A good doctor who listens and believes you is critical. Try a rhumatologist. They are used to patients that have vague symptoms and testing for weird diseases.

If you feel badly, don't let anyone shake your resolve to get answers. I've had 9 diagnoses in 3.5 years. Most were correct, but incomplete. Doctors, clinicians, and family members decided I was a hypochondriac. This is your health and your life. If you are stuck in an HMO, you should be able to switch GP's. The best thing for your health is a doctor who is working in partnership with you. If all else fails, requesting testing in writing can help. Ask them to write in your chart that you requested testing and they refused. I suspect they will do the testing or make a referral first.

Good Luck

SGWhiskers

[xzandra]

Thanks SGWhiskers, my mom and I were talking about it and I am going to go to the health clinic at school. I've been there once before, and the doctors were great. My GP...their whole office...has claimed to do tests in the past, but they aren't in my file. And the thing with how I 'refused' a test at the hospital, that never happened.

But do you, or does anyone, think this sounds like Celiac?

[xzandra]

Sounds like Celiac Disease to me! I also had almost every symptom you listed before I went Gluten Free. The back pain and the extreme fatigue were the worst parts for me. I also felt like some people thought I was making it up. It was making me crazy. You definitely need to get tested. Good Luck!

Thanks Roxie....I'm sorry I missed your post before! It is nice to know that someone with a diagnosis had felt the same way I do...its so hard, when everyone (including my mother sometimes) thinks I am faking it, or exaggerating. All I want is to feel better.

[roxie]

Xzandra,

I wish you lots of luck, and I hope you will be feeling better soon. I immediately felt a little better after being gluten free for only one week. My Mom seemed a little skeptical at times too when I was so sick. She couldn't understand why I wanted to lay in bed all day. Now my family members all feel bad that they didn't believe me. When we look back at pictures of me from a year ago, we can't believe how sickly I looked compared to now. Roxie

[SGWhiskers]

Xzandra,

I'm not a doctor and I only learned of Celiac Disease a few months ago. Your symptoms are similar to mine. It certainly sounds like Celiac is a possibility and worth getting the testing. I want to caution you that there are many other things that could cause your symptoms. If the doctors want to explore other kinds of testing as well, I think it would be worthwhile. I think you are doing the right thing by taking an active, educated role in your health care. Continue looking for a doctor with whom you can form a partnership. If the first diagnosis you get does not explain all of your symptoms, keep pushing for deeper testing. I wouldn't have gotten my diagnosis if I hadn't switched doctors and bucked anyone who felt I was just a whimp. Take care and good luck with the health clinic docs. Ask for that Celiac panel right up front and have the names of the tests ready for them. Make sure they are the ones that are included in what is ordered.

SGWhiskers

[xzandra]

Xzandra,

I'm not a doctor and I only learned of Celiac Disease a few months ago. Your symptoms are similar to mine. It certainly sounds like Celiac is a possibility and worth getting the testing. I want to caution you that there are many other things that could cause your symptoms. If the doctors want to explore other kinds of testing as well, I think it would be worthwhile. I think you are doing the right thing by taking an active, educated role in your health care. Continue looking for a doctor with whom you can form a partnership. If the first diagnosis you get does not explain all of your symptoms, keep pushing for deeper testing. I wouldn't have gotten my diagnosis if I hadn't switched doctors and bucked anyone who felt I was just a whimp. Take care and good luck with the health clinic docs. Ask for that Celiac panel right up front and have the names of the tests ready for them. Make sure they are the ones that are included in what is ordered.

SGWhiskers

I will do that I am going to ask to be tested for Celiac disease, and I am waiting to get my allergy testing apointment, to see if I have any other food allergies. If this doesn't end up being correct....I don't know what to do next. My GP diagnosed me with IBS, aka he doesn't know. If it doesn't end up being Celiac, does anyone have any suggestions as to where to go next? Should I ask to see a GI specialist?

And would anyone know if I start eating some gluten free foods, if it will change my test results for the Celiac screening, or an allergy test for gluten?

[ravenwoodglass]

I will do that I am going to ask to be tested for Celiac disease, and I am waiting to get my allergy testing apointment, to see if I have any other food allergies. If this doesn't end up being correct....I don't know what to do next. My GP diagnosed me with IBS, aka he doesn't know. If it doesn't end up being Celiac, does anyone have any suggestions as to where to go next? Should I ask to see a GI specialist?

And would anyone know if I start eating some gluten free foods, if it will change my test results for the Celiac screening, or an allergy test for gluten?

You need to keep eating gluten until all the testing is done. Being gluten free will raise your chances of a false negative even higher than they already are. If your blood testing is positive then you will be given a referral most times to a GI for an endoscopic exam and biopsy for confirmation. Be aware that there are false negatives with both blood and biopsy so after those tests are done make sure you give the diet a good strict try for at least a couple of months. I also agree that you sound very much like you are in the right place. Your allergist may also be able to guide you through an elimination diet if needed but not all will. Do be aware that if you have celiac your immune system is in hyperdrive, do not be overly alarmed if you show allergic to a number of things. That may well resolve. When I had my allergy testing before I was diagnosed out of 99 things they tested for the only thing that was not positive was beech trees. Almost all those allergies resolved after I started the diet. I hope you get some answers and can start healing soon.

[xzandra]

You need to keep eating gluten until all the testing is done. Being gluten free will raise your chances of a false negative even higher than they already are. If your blood testing is positive then you will be given a referral most times to a GI for an endoscopic exam and biopsy for confirmation. Be aware that there are false negatives with both blood and biopsy so after those tests are done make sure you give the diet a good strict try for at least a couple of months. I also agree that you sound very much like you are in the right place. Your allergist may also be able to guide you through an elimination diet if needed but not all will. Do be aware that if you have celiac your immune system is in hyperdrive, do not be overly alarmed if you show allergic to a number of things. That may well resolve. When I had my allergy testing before I was diagnosed out of 99 things they tested for the only thing that was not positive was beech trees. Almost all those allergies resolved after I started the diet. I hope you get some answers and can start healing soon.

Okay, I'll keep eating the same...would the Plant Enzyme pills I just started taking increase the risk of a false negative too? I am supposed to take them whenever I eat a meal....they help a little .

So if I get a negative on my test....what do I do? Should I still try a gluten free diet or wait for allergy testing? Apparently if I am diagnosed with Celiac, the government will help pay for my food (which would be a huge relief)...so if it is negative what do I do?

I feel lost...I dont know what to do if it comes back negative, I can't keep living like this...and people here might be the only ones who understand.

You have inspired me, that if your anxiety and depression were caused by celiac...if those went away....I don't know who I'd be, in a good way. Its like my health problems are all I am anymore...I had no idea that the problems with my stomach could even be related to, causing, my mental health problems...I'm thinking about dropping out of University....but now, if I feel better...I don't know.

I know its horrible, but I hope it is Celiac....just so I have an answer....