Do my symptoms add up?

[heavenly]

Basically I am a 15 year old girl who's in the past 6 months have had very stiff and achy joints mostly my hands feel very stiff they normally feel really bad in the morning and my knees have now gotten all messed up aswell and my arms just feel incredibly heavy ? if that makes sense along with the rest of my body also feeling this way is really saddening because i just want to feel healthy again or go for a run (or even a walk) without my body feeling so incredibly achy it hurts all the time the achy joints is constant. But anyway I went to my normal doctors and got a blood test done and was basically told it was just low levels of vitamin D I took the vitamins for awhile with still no difference (this was only when my hands hurt) I should probably still be taking the vitamins which I will but I just feel discouraged because nothing seems to help the pain I am in. I was then referred to a different doctor who I think does more bone related stuff like arthritis (I don't quite remember oops) and then had gotten more blood taken for some form of test for arthritis and no results were given back. :-( Anyway after eating some breaded chicken a few days ago I just had this incredible urge to throw up and was very nauseous more so than usual I feel nausea or like i'm going to throw up quite often. I kept the food down but it came up a few times (TMI) and then another days after that I ate some fried chicken and the same feeling occurred. Now after all that I am constantly hungry like more so than usual like 1-2 hours after I eat normally stomach growling and all its quite annoying. I get itchy skin rashes quite often too and I am almost always constantly tired and can sleep a very long time ( like 13 hours my highest was 24 once ) Any help what should I say to the doctor or if this sounds familiar? (I have another test soon for something else I believe)

[Jmg]

2 hours ago, heavenly said:

Basically I am a 15 year old girl who's in the past 6 months have had very stiff and achy joints mostly my hands feel very stiff they normally feel really bad in the morning and my knees have now gotten all messed up aswell and my arms just feel incredibly heavy ? if that makes sense along with the rest of my body also feeling this way is really saddening because i just want to feel healthy again or go for a run (or even a walk) without my body feeling so incredibly achy like it hurts all the time like the achy joints is constant. But anyway I went to my normal doctors and got a blood test done and was basically told it was just low levels of vitamin D I took the vitamins for awhile with still no difference (this was only when my hands hurt) I should probably still be taking the vitamins which I will but I just feel discouraged because nothing seems to help the pain I am in. I was then referred to a different doctor who I think does more bone related stuff like arthritis (I don't quite remember oops) and then had gotten more blood taken for some form of test for arthritis and no results were given back. :-( Anyway after eating some breaded chicken a few days ago I just had this incredible urge to throw up and was very nauseous more so than usual I feel nausea or like i'm going to throw up quite often. I kept the food down but it came up a few times (TMI) and then another days after that I ate some fried chicken and the same feeling occurred. Now after all that I am constantly hungry like more so than usual like 1-2 hours after I eat normally stomach growling and all its quite annoying. I get itchy skin rashes quite often too and I am almost always constantly tired and can sleep a very long time ( like 13 hours my highest was 24 once ) Any help what should I say to the doctor or if this sounds familiar? (I have another test soon for something else I believe)

Hi and welcome

You've found a nice community and there's lots of help, support and advice available for you here if you need it. We can't diagnose you obviously, but aching joints can be a symptom of celiac or gluten sensitivity. It can also cause vitamin deficiencies, rashes, nausea, fatigue etc. Of course other things could cause these too. 

A blood test for celiac antibodies sounds like a good idea. See if you can make an appointment to see the doctor or call the surgery and ask if a celiac blood test panel can be added to the test your due to to take in a few days. Your parents/guardian may have to make that call for you. You can also ask if you've already been given any of the celiac tests. These are the ones to look for on any results you've been given:

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

Stay eating your normal diet until you have the tests otherwise they may give a false reading! IF at the end of testing your negative for celiac you can still give the gluten free diet a try, it worked for me

Best of luck!

Matt 

 

[Ennis-TX]

The fatigue and aches are very common with this disease same with the constant hunger and urge to throw up after a gluten heavy meal....I lived most my life exactly like that from about Jr.High through college before dia.

I would as mentioned above KEEP ON the gluten diet for now, and get the full blood test done and follow up endoscope to confirm the disease. It is necessary to stay on gluten for the testing to work, at least half slice of bread a day. If you have then a gluten free diet will solve your issues if you can stay on it. While the diet might seem overwhelming your lucky your catching it early and after a few months of whole foods only you should be able to eat gluten free alternatives of your favorites once again. I can give plenty of suggestions for alternatives, cooking ideas, meals, and tips on how to stay safe with this disease. And many others here can give you all kinds of advice, this forum is like a family with similar health issues we can often rely on each other for advice, moral support, and help. Get back to us when you get your testing done, we can help with the transition with tips on setting up a safe cooking area, how to fix your meals gluten-free, avoiding cross contamination, etc. In the mean time you can look at the Newbie 101 section, the ingredients to avoid, and the alternative food list. Being so young I do not know if your damage is bad enough for extensive supplementation yet, but some might help overcome the symptoms for now.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

[TexasJen]

I'm sorry you are feeling so badly!  Muscle and joint aches can be caused by a lot of different things - including vitamin D deficiency.  I think most people (doctors included) don't think of celiac as the most likely diagnosis when your complaints are muscle.  My point is sometimes you can't do every test at the beginning.  If you like your doctor, make sure to go back to him or her and say "I tried taking vitamins and that didn't help my symptoms. I still feel bad. I want to get to the bottom of my health issues because this isn't normal. What are some other diseases this could be? what other tests can we do? " Keep pressing them.  My fourth grade teacher told me "there are no dumb questions!"  Just keep asking until until you find the right answer. Sometimes you have to do several different tests etc

Make sure to keep a record of all of your symptoms and get the testing for celiac like the other posters recommended above.

Also, make a face to face appointment with the doctor for f/u appointments. Don't assume that a phone call is enough. A good doctor is only as good as his message taker and/or nurse.

And, finally, if you don't think your doctor is listening or doesn't believe you, go see a different doctor who will keep trying to find the answer to your symptoms. 

Good luck!