I am 25 years old and I am currently on a medical leave of absence from my job due to some ongoing conditions. Please read my story and offer any insight/input or advice.
At age 11, I was diagnosed with polyarticular juvenile rheumatoid arthritis. This past summer, it went into remission and only flares up now occasionally, a couple of times a month, but for the most part is under control. In high school, I was diagnosed with Graves' Disease which is now also under control. In 2005, I had a bout of Bell's Palsy for a little over 3 months.
This past summer (late July) I started feeling horrible on a daily basis. I went to my doctor with a low-grade fever and a myriad of other symptoms including constipation, dizziness, fatigue, sudden migraines (which I'd never had before), shooting pains in my head, loss of appetite, and glands ached. I thought I had a cold or flu -- some type of virus. He dismissed it as nothing, and the fever didn't really concern him -- none of it did. He gave me an antibiotic and sent me on my way.
I did some research online and took it upon myself to see an endocrinologist who ran blood tests and found that I had a sky-high antibody level indicative of Celiac Disease. She also suspected that I have Reactive Hypoglycemia. I went on the gluten-free diet in late September and also do not eat a lot of sugar/carbs.
After 5+ months or so, I still did not feel better from GF diet. I may have been "glutened" once or twice accidentally, but I myself was and am very strict. I ended up having an endscopy done. They found that my villi weren't even scallopped but completely flattened. They also found that I had red lesions in my esophagus and intestine, and also that my food was just sitting in my stomach not really emptying into my large intestine. They ended up taking 3 biopsies instead of one. They found no malignancy, thank goodness. They did realize the Celiac is very advanced, and also believe that it caused reflux (even though I never get heartburn -- I don't get it?!?) and possible gastroparesis. Well, that was about a month ago and I'm still not better at all, even though I am now VERY strict w/ GF diet (almost paranoid!)
I now have more symptoms than when initially diagnosed. My hands and feet (particularly feet) are always cold (freezing) and when I was at my neurologist, they found that I have a slight loss of temperature sensation in my feet. I also have very shaky hands occasionally (tremors) and general overall weakness, as well as constant and nonstop ringing in my ears (tinnitus) for about 6 months now that never goes away. The fatigue that I experience on a daily basis is debilatating. The headaches are daily. My neurologist first gave me Topamax which didn't help. I now have Imitrex nasal spray to use as-needed. My brain MRI's were normal. My blood work is usually normal. (Aside from one time when my progesterone level was sky-high....but it was a fluke, I think b/c next time it was normal.)
I used to have diahrea alternating w/ constipation. Now, no diahrrea which is good but still do not have bowel movements very often. Since August I have lost about 15 lbs. I eat as I am supposed to and stick to my diet, but I honestly lately have no appetite at all. (This is a newer development.) Additionally, I suddenly am having a LOT of trouble sleeping. I usually never had problems sleeping (aside from the fact I'd sleep a lot and still be tired) -- I am exhausted but will just lay in bed awake even though I'd give anything to fall asleep. This is also a new development.
My neurologist thinks that my Celiac may have caused some nerve damage, and I have to get some test done in May to test my Autonomic Nervous System. I experience "brain fog" a lot - feeling detached, mental sluggishness, difficulty thinking clearly or concentrating. This is particularly difficult, being a writer and a graduate student, and an academic at heart. This is very frustrating but could be from malabsoprtion/malnutrition b/c of the Celiac. Other things to mention are that my body temperature is typically lower than the average 98.6 and closer to 97 or so. I do not know how relevant that is. I should also mention that I have a recent history of pre-cancerous cells on the cervix (cervical dysplasia) but that after 2 or 3 procedures, the pre-cancerous cells are gone (at least last pap was normal.) My arthritis flares sometimes when the other symptoms are particularly bad. One more thing I should mention is that I have some odd hair growth (hirsutism I think she called it?) -- but, that could be from arthritis meds I guess or b/c I have a little bit of Italian in me?
My gastroenterologist and endocrinologist suspect that due to my high antibody levels re: Celiac and also the extent of my flattened villi, that I have had Celiac disease for a very long time, and it went undiagnosed. I worry b/c I've read that the longer one goes w/o diagnosis, the harder it is to recover. Also if is Refractory, I've read that it often turns malignant. My neurologist said that sometimes intestinal lymphoma in its early stages will not affect blood test results. I assume I do not have that though if endoscopy is normal. Right??
I currently am off all biological agents and all rheumatoid arthritis meds (disease modifying drugs, etc.) I occasionally do take prednisone (steroid) for a bad flare-up. I take Vicodin as needed also (very low dose.) The only meds I am on now are Protonix, gabopentin (I think that is what it is called) and sometimes Imitrex, as well as a water pill. I do take a lot of (gluten-free) vitamin supplements. I am 25, and I weigh 105 lbs. at a height of 5'3 which I think is still in the normal/healthy range although it's almost 15 lbs. less than summer.
My biggest concern is that I do not FEEL healthy. I know my body, and I can't shake the feeling that something more is wrong. I feel like the doctors are missing something. Hopefully not cancer, but WHAT IF? That question always runs through my mind. It might not be something that extreme (I pray not) -- but what if it is something like an adrenal problem or thyroid issue (last thyroid tests in Sept. were normal, got more bloodwork for that today). I thank God that my brain MRI's were normal. I have not had any problems w/ my glands which is good. I have a family history of MS but, again, brain scans were normal and blood work is normal.
How reliable is bloodwork? Would anyone seek any 2nd opinions? I just feel as though things are getting worse not better. I feel like, on many days, that my body is quite literally giving up on me. I feel like all of these seemingly random symptoms have to somehow be connected. I do not want anything else to be wrong, but I just want to know what's going on -- why am I not improving? Are all these things connected? What is the next step I should take??
I am young, active, and a hard worker. I am very sad to have to have taken a temporary medical leave of absence. I may not be able to pursue my planned career due to my conditions. However, I am not depressed. I am very happy in all other areas of my life. It's just that my health is majorly affecting me and I just want answers and want to get better.
Please offer any advice/input. Nothing will scare me, I just want to stay on top of things and get healthy while I am young and still can! I need to do what I can do solve whatever problems I have in front of me. I just have a nagging feeling that there is something more than meets the eye and I'd appreciate some help.
In the meantime, prayers are welcome
I hope to get back to being healthy once again!
THANK YOU for reading this (very long) post. I am just feeling a bit helpless, and some of my doctors seem hopeless, so, I'm out to prove them wrong!
Thanks and God Bless! Best wishes to all.
PS: It is not letting me add tags for some reason. Maybe you guys can add some for me Thanks!
"Be Kinder than Necessary, For Everyone You Meet is Fighting Some Kind of Battle."
"God Knows More of Our Worried Hearts Than We Do Ourselves."
At age 11, I was diagnosed with polyarticular juvenile rheumatoid arthritis. This past summer, it went into remission and only flares up now occasionally, a couple of times a month, but for the most part is under control. In high school, I was diagnosed with Graves' Disease which is now also under control. In 2005, I had a bout of Bell's Palsy for a little over 3 months.
This past summer (late July) I started feeling horrible on a daily basis. I went to my doctor with a low-grade fever and a myriad of other symptoms including constipation, dizziness, fatigue, sudden migraines (which I'd never had before), shooting pains in my head, loss of appetite, and glands ached. I thought I had a cold or flu -- some type of virus. He dismissed it as nothing, and the fever didn't really concern him -- none of it did. He gave me an antibiotic and sent me on my way.
I did some research online and took it upon myself to see an endocrinologist who ran blood tests and found that I had a sky-high antibody level indicative of Celiac Disease. She also suspected that I have Reactive Hypoglycemia. I went on the gluten-free diet in late September and also do not eat a lot of sugar/carbs.
After 5+ months or so, I still did not feel better from GF diet. I may have been "glutened" once or twice accidentally, but I myself was and am very strict. I ended up having an endscopy done. They found that my villi weren't even scallopped but completely flattened. They also found that I had red lesions in my esophagus and intestine, and also that my food was just sitting in my stomach not really emptying into my large intestine. They ended up taking 3 biopsies instead of one. They found no malignancy, thank goodness. They did realize the Celiac is very advanced, and also believe that it caused reflux (even though I never get heartburn -- I don't get it?!?) and possible gastroparesis. Well, that was about a month ago and I'm still not better at all, even though I am now VERY strict w/ GF diet (almost paranoid!)
I now have more symptoms than when initially diagnosed. My hands and feet (particularly feet) are always cold (freezing) and when I was at my neurologist, they found that I have a slight loss of temperature sensation in my feet. I also have very shaky hands occasionally (tremors) and general overall weakness, as well as constant and nonstop ringing in my ears (tinnitus) for about 6 months now that never goes away. The fatigue that I experience on a daily basis is debilatating. The headaches are daily. My neurologist first gave me Topamax which didn't help. I now have Imitrex nasal spray to use as-needed. My brain MRI's were normal. My blood work is usually normal. (Aside from one time when my progesterone level was sky-high....but it was a fluke, I think b/c next time it was normal.)
I used to have diahrea alternating w/ constipation. Now, no diahrrea which is good but still do not have bowel movements very often. Since August I have lost about 15 lbs. I eat as I am supposed to and stick to my diet, but I honestly lately have no appetite at all. (This is a newer development.) Additionally, I suddenly am having a LOT of trouble sleeping. I usually never had problems sleeping (aside from the fact I'd sleep a lot and still be tired) -- I am exhausted but will just lay in bed awake even though I'd give anything to fall asleep. This is also a new development.
My neurologist thinks that my Celiac may have caused some nerve damage, and I have to get some test done in May to test my Autonomic Nervous System. I experience "brain fog" a lot - feeling detached, mental sluggishness, difficulty thinking clearly or concentrating. This is particularly difficult, being a writer and a graduate student, and an academic at heart. This is very frustrating but could be from malabsoprtion/malnutrition b/c of the Celiac. Other things to mention are that my body temperature is typically lower than the average 98.6 and closer to 97 or so. I do not know how relevant that is. I should also mention that I have a recent history of pre-cancerous cells on the cervix (cervical dysplasia) but that after 2 or 3 procedures, the pre-cancerous cells are gone (at least last pap was normal.) My arthritis flares sometimes when the other symptoms are particularly bad. One more thing I should mention is that I have some odd hair growth (hirsutism I think she called it?) -- but, that could be from arthritis meds I guess or b/c I have a little bit of Italian in me?
My gastroenterologist and endocrinologist suspect that due to my high antibody levels re: Celiac and also the extent of my flattened villi, that I have had Celiac disease for a very long time, and it went undiagnosed. I worry b/c I've read that the longer one goes w/o diagnosis, the harder it is to recover. Also if is Refractory, I've read that it often turns malignant. My neurologist said that sometimes intestinal lymphoma in its early stages will not affect blood test results. I assume I do not have that though if endoscopy is normal. Right??
I currently am off all biological agents and all rheumatoid arthritis meds (disease modifying drugs, etc.) I occasionally do take prednisone (steroid) for a bad flare-up. I take Vicodin as needed also (very low dose.) The only meds I am on now are Protonix, gabopentin (I think that is what it is called) and sometimes Imitrex, as well as a water pill. I do take a lot of (gluten-free) vitamin supplements. I am 25, and I weigh 105 lbs. at a height of 5'3 which I think is still in the normal/healthy range although it's almost 15 lbs. less than summer.
My biggest concern is that I do not FEEL healthy. I know my body, and I can't shake the feeling that something more is wrong. I feel like the doctors are missing something. Hopefully not cancer, but WHAT IF? That question always runs through my mind. It might not be something that extreme (I pray not) -- but what if it is something like an adrenal problem or thyroid issue (last thyroid tests in Sept. were normal, got more bloodwork for that today). I thank God that my brain MRI's were normal. I have not had any problems w/ my glands which is good. I have a family history of MS but, again, brain scans were normal and blood work is normal.
How reliable is bloodwork? Would anyone seek any 2nd opinions? I just feel as though things are getting worse not better. I feel like, on many days, that my body is quite literally giving up on me. I feel like all of these seemingly random symptoms have to somehow be connected. I do not want anything else to be wrong, but I just want to know what's going on -- why am I not improving? Are all these things connected? What is the next step I should take??
I am young, active, and a hard worker. I am very sad to have to have taken a temporary medical leave of absence. I may not be able to pursue my planned career due to my conditions. However, I am not depressed. I am very happy in all other areas of my life. It's just that my health is majorly affecting me and I just want answers and want to get better.
Please offer any advice/input. Nothing will scare me, I just want to stay on top of things and get healthy while I am young and still can! I need to do what I can do solve whatever problems I have in front of me. I just have a nagging feeling that there is something more than meets the eye and I'd appreciate some help.
In the meantime, prayers are welcome
I hope to get back to being healthy once again! THANK YOU for reading this (very long) post. I am just feeling a bit helpless, and some of my doctors seem hopeless, so, I'm out to prove them wrong!
Thanks and God Bless! Best wishes to all.
PS: It is not letting me add tags for some reason. Maybe you guys can add some for me
Thanks!"Be Kinder than Necessary, For Everyone You Meet is Fighting Some Kind of Battle."
"God Knows More of Our Worried Hearts Than We Do Ourselves."