I'm Freaking Out!

[Tigercat17]

Hi everyone,

It's been a while since I had any time to post, but I've really been too tried to even post anything and I just had surgery two weeks ago. It's a long story, so hang on... For the last six months (18 months on the gluten free diet)I was feeling really good, but since the end of Feb. I started having night sweats, chills, low grade fevers (almost daily), fatigue, dizziness, headaches, lost 5lbs., lost my appetite and my stomach is always tender. I had to stop going to the gym. I just felt so weak all of the sudden. First I thought it was hyperthyroidism so my Endo doctor lowered my dose for me, but it didn't help and my TSH levels are 0.537. So I went back to my Oncology doctor. (I just had a CT scan done in Jan for abdominal lymph nodes they've been following for the last six years. The results in Jan. 2011 were that they were stable and no changes were seen in them.) When I seen my Oncology doctor the second time (March 2011) this year after having night sweats and fevers from Feb -present, he ordered another CT scan for the abdominal lymph nodes. And the lymph nodes did get 1 cm larger than they were in Jan. The doctor told me he suspected lymphoma or another autoimmune disease. So, with in a week they sent me right to the Oncology surgeon and scheduled a lymph node resection through laparoscopy a week later to rule out lymphoma. They also did a liver biospy since they were some white patches on my liver. I was so scared. I really thought I had lymphoma. But the results came back negative for lymphoma- Thank God! And the liver biospy came back slightly abnormal. So now they are thinking if it's another autoimmune disease and I being teseted for liver autoimmune diseases and Crohn's disease. I have to go through a lot more testing. I'm just getting so tried of all the testing. Sometimes I think they are just guessing and trying to just get money from my health insurance.

I even thought maybe this is a gluten reaction so rechecked everything and studied my food journal to find any patterns. I usually get a sore throat, fatigue, loose weight and have stomach tenderness from acid reflux if I get any CC, but my throat has been feeling pretty good in the last six months , so that's why I didn't think of gluten in the beginning. I don't eat a lot of gluten-free processed foods, I have a gluten free kitchen and I don't eat out that much if at all. So I thought the only way if I getting gluten is through medicine (I only take Levoxly & I double checked them and they are still gluten free) or my vitamins, so I stopped all my vitamins five days ago. I do feel a little better. but definitely not 100%. It seems like I haven't had a fever in the last five days, but I'm still getting night sweats. And it's hard to tell since I just had surgery two weeks ago. My stomach is still sore from the surgery.

So, I saw my GI doctor to update him on everything that's been going on. I asked him if this could just be the celiac disease? He told me that it is common for people with celiac disease to have enlarged lymph nodes, but the fevers, chills and sweats he really didn't think it was a gluten reaction especially since I just had my IgA test done in March and it was 18 (normal is under 20) so now he wants me to have more blood work done, a small bowel series and a capsule endoscopy just to make sure I don't have ulcers in my small intestines. I'm freaking out.... I hate all these surgeries, procedures and tests and they don't even find anything out....

I did ask him if it could be the vitamins and he did tell me to continue not taking them and see if I feel better, but he thought it was really unusual for me to have all these symptoms because of gluten. I know three months before I was diagnosed I never had any GI symptoms at all for my celiac disease. It wasn't until the celiac got to be severe did I start to have acid reflux. And I heard that your symptoms can change after you've been on the diet for a while. Maybe my symptoms are changing? I'm not sure. The fact that I finally able to post about all of this definitely says I have more energy than I've had in a while -believe me. I've been wanting to post, but I felt so tried that just making dinner was a huge job.I'm not saying that it is the vitamins for sure... I've been taking them for a while and of course they say gluten free on the bottle and I called the company. I just don't know what else it could be.

I also have an appointment to see a Rheumatogolist next week for more testing for other autoimmune diseases.

Okay here are my questions:

1.Does anyone have any ideas what could be going on with me or can relate to any of this?

2.Did anyone have the capsule endoscopy done? I'm a little nervous about this... How was it and was it worth it? I just hate to go through another procedure when I just had a surgery that now I'm wondering was that really necessary? UGGHHH Doctors!!!

Thanks everyone for reading this!

[IrishHeart]

Oh Lisa,

I'm sorry you're having more symptoms and no answers. You were doing so well.

My Dad had the capsule endoscopy years ago and it was painless, as I recall...swallow it and it goes through your GI tract...takes pictures...and it goes out the other end....no worries!!

I had the small bowel follow through and CT scan series--also painless. They have you drink a fruity liquid--just TELL THEM IT NEEDS TO BE GLUTEN FREE!! (I was not Dxed OR gluten-free at the time, so I didn't know if it did or did not contain any gluten, but I would think it would not --as many people having those tests require gluten-free fluids) --and they take xray pictures. No pain.

Not invasive, not painful.

Why can't the GI doctor just run the ANA tests/SED rate, etc. for other autoimmune diseases---why send you to the rheumatologist?? Are you having joint/bone pain??

Chills and sweats could be hormones (I had some pretty bizarre and horrible symptoms when I started a very early menopause) but not sure about the fevers or stomach tenderness.

Wish I could help more...

[Tigercat17]

Oh Lisa,

I'm sorry you're having more symptoms and no answers. You were doing so well.

My Dad had the capsule endoscopy years ago and it was painless, as I recall...swallow it and it goes through your GI tract...takes pictures...and it goes out the other end....no worries!!

I had the small bowel follow through and CT scan series--also painless. They have you drink a fruity liquid--just TELL THEM IT NEEDS TO BE GLUTEN FREE!! (I was not Dxed OR gluten-free at the time, so I didn't know if it did or did not contain any gluten, but I would think it would not --as many people having those tests require gluten-free fluids) --and they take xray pictures. No pain.

Not invasive, not painful.

Why can't the GI doctor just run the ANA tests/SED rate, etc. for other autoimmune diseases---why send you to the rheumatologist?? Are you having joint/bone pain??

Chills and sweats could be hormones (I had some pretty bizarre and horrible symptoms when I started a very early menopause) but not sure about the fevers or stomach tenderness.

Wish I could help more...

Thanks so much for your kindness IrishHeart. I know I was doing so good there for a while. I know my story is complicated and by next Tuesday, I'll have three doctors hopefully trying to make sense of things for me.

I am kind of scared about the capsule endoscopy. I heard that it could get stuck in the small intestines. You'd think I'd be so brave after what I've already been through, but I'm really a big baby when it comes to pain. If someone gives me some pain pills I'm good to go, but otherwise forget it.

The doctors did run the sed rate blood work on me and it was 66. It was 22 (still high) the last time I had it done about six months ago, but so was my IgA then, too. They told me the elevated sed rate just shows inflammation, but doesn't really tell you where it's coming from. I do agree though -why do they have to do all these tests when a simple blood test would be enough? I haven't had the ANA test yet, but I wonder if my new rheumatologist will test that for me along with a bunch fun stuff.

I did wonder if it might be early menopause also, but it really didn't explain the low grade fevers (I'm not sure if you have those for early menopause), the stomach tenderness and why the lymph nodes got a 1cm larger in three months?... I was actually hoping it could be that than all this other stuff...

Plus it's really weird. I'll get these low grad fevers for only about 30 minutes to an hour (mostly at night)and then I start sweating and then it's gone. During the day I just feel tried. It's so hard trying to figure what's going on sometimes when it could be so many things...

Thank you so much for your help IrishHeart!

[ravenwoodglass]

I'm sorry you are having so many problems and I hope they figure stuff out for you. If this is early menapause there is a blood test, I think it is FSH, that they can do to see if that is the cause. Could you be dealing with another intolerance? Have you tried eliminating soy and casien to see if that helps?

[Gemini]

I'm sorry you are having so many problems and I hope they figure stuff out for you. If this is early menapause there is a blood test, I think it is FSH, that they can do to see if that is the cause. Could you be dealing with another intolerance? Have you tried eliminating soy and casien to see if that helps?

Actually, checking progesterone levels is far more accurate when checking for early menopause. The other tests are a joke because you may be symptomatic long before these fall. Progesterone is the first hormone to tank when entering menopause.

[IrishHeart]

The fevers stump me, Lisa. To be suddenly feverish...and then, not?? hmm...

I read that most celiacs --especially those with thyroid issues---run low average temps. My "normal" temp is sometimes 95 or 96...weird, huh?... If it spikes to 98 or 99, I've got a fever!!

Don't be afraid of the capsule endoscopy....it's not a biggie. My Dad did it and he was a big baby...

You're going to be okay...you're one brave chick!!

I hope you get answers soon. I send you ((HUGS)) and good wishes. Keep us posted.

[Tigercat17]

Thanks for all your help everyone!

I just received my Tissue Transglutaminese IgA results and it's 16 (under 20 is normal). So, I don't think this is a gluten issue. I'm thinking if I was getting any CC these results would've went up. I was really starting to wonder if it was gluten, but I'm so gald it isn't.

And I just had the small bowel series done and the results were normal except for the fact that my intestines seem to move very fast. I guessing this is because my Endo doctor wants my TSH to stay at .2 because of the thyroid cancer. So it's on the hyper side, but I didn't talk to my doctor yet.

I am feeling a little better since I stopped my vitamins. A month before I was having these symptoms I started taking GNC Multi vitamins and fish oil. It's been two weeks and my fevers stopped about a week ago and the night sweats seem to be gone now too. I'm not sure if there's a connection or not, but it seeming pretty fishy -no pun intended. I'm wondering if maybe I was reacting to something else in these vitamins. And I'm wondering if there's a possibility that I could have reactions to something after a month of consuming them??? These were the only thing I changed to my diet during that time.

Ravenwood glass- it's funny that you mention food intolerances because both of these vitamins I was taking had soybeans in them. I was starting to wonder about that, too. I don't consume a lot of soy, just small amounts. But I'm still eating soy and the fevers seem to be gone. I'm not sure if there's a connection or not and I was thinking about doing an elimination diet, but I wasn't sure if it was necessary or not since I'm starting to feel better.

Also, about the FSH. I just had this tested a month before I started having fevers and night sweats. My hubby and I went to an infertility doctor and she checked all of my hormone levels. The doctor said everything looked good, but it's definitely something to double check just to make sure.

I'm still having a hard time figuring this out. I'm going to try to schedule my capsule endoscopy for this week. Thanks Irishheart for calming my fears!

Thanks everyone! I'll keep all you posted!

[zus888]

Have they checked you for mono?

The rheumatologist will likely have you get a number of blood tests. Might feel like they should just get a pint instead of filling up 13 vials! They will test for a number of autoimmune diseases.

As for the liver, a CT scan might be able to shed some light on it. Also, a liver panel will show if there's weirdness going on there. Most likely, though, the blood tests will just give a sign that something is up, but not give you a definitive diagnosis.

Docs will typically go with the least invasive tests first and then move on to more invasive ones if necessary. Unfortunately, they probably are just guessing at this point. Your symptoms aren't very specific to one particular disease. So, it's just going to be a matter of trying to rule out one thing at a time.