I'm Finally Getting Tested!

[Madison-Marie]

Hi Everyone,

 

I am new to the forums here, but I have been chasing my own diagnosis for over three years now. For those of you who had to wait ten times as long, my hat is off to you for making it. I am truly sorry you had to deal with ill health for that long. I know that I am so tired of feeling like I am dying all the time that there are very brief moments when I wish it would just happen already.

 

Don't worry, I don't really want to die, but living like I have been has been hell. I had always felt relatively well. I did have more bronchitis and tonsillitis than most children, but aside from that I never felt particularly unwell unless I had a cold or the flu. About 4 years ago I woke up one night unable to get air into my lungs. Nothing like that had every happened to me before. I was struggling and grasping at my pillows for at least 15 seconds when finally my airway opened back up and let air through.

 

Doctors immediately wrote the episode off as a panic attack. At least a year went by with nothing else happening, aside from me being afraid to go to sleep at night. Since that time, I have steadily added in so many symptoms and problems that I never even know what to say anymore when a doctor asks me why I came to see them. I have yet to have a doctor even feign interest in my symptoms. I have been referred to psych without any testing besides common blood work. You know, CBC, lipid panel, liver enzymes, etc.

 

My symptoms are as follows:

 

Panic attacks, swollen lymph nodes (everywhere), constipation in an almost constant rotation with diarrhea (if it ain't one, it is the other), bloating, heart palpitations, ferocious heartburn, dry in places that shouldn't be (eyes, mouth, etc), cold intolerance, extreme fatigue, more panic attacks, chest pain, joint pain, shoulder and arm pain, just lots of random pain, sharp stabbing pains in different areas of the abdomen, neck pain, headaches, silent migraines, painful migraines, almost constant gas, persistent yeast infections, noise-triggered anxiety leading to severe panic attacks (rare, but scary), numbness or tingling in the face, neck, back, chest, arms, hands, legs and feet, lightheaded where I literally am certain I am about to lose consciousness but never actually do, shortness of breath, loss of appetite, ferocious appetite, mood swings, late to start puberty, excruciating periods, worsening PMS, weight gain, depression, nausea (often), etc etc etc.

 

I think you all get the idea. As you can see, these symptoms could certainly be caused by about a hundred different diseases. I just find it highly unlikely given the presentation. I have a hard time swallowing that in 3-4 years I developed a hundred different illnesses.

 

I have been diagnosed with Hashimoto's, which I know can cause a lot of those symptoms as well, but it just doesn't add up for me that this is all. I took the medications like clockwork for two years and have continued to deteriorate at what feels like a rapid pace while my labs look great. There are days that I have to convince myself that it is okay if I die because I feel awful and scared, and I'm tired of being scared. So I tell myself, hey, if this is it well then so be it.

 

I may very well be barking up the wrong tree here, but I'm mad that I didn't know to bark up it sooner. Moreover, I am mad that no doctor has barked up it on my behalf. Thinking back on things, I suspect my father who died at 49 of a heart attack after losing a ton of weight may have had it. I can remember him always having digestive problems. Bathroom trips lasted so long that I had to go to a neighbor's house to use their restroom. He had heartburn, ulcers, pain, etc. He also had anxiety and mood swings.

 

Sorry I am starting to ramble, this has just been a crazy ride, and while I hope I am on the road to wellness in the near future, I remain skeptical. It can't be this simple, can it? I guess I will find out soon.

 

Thanks for listening and I will get back to you with my test results. I'd be thrilled to hear some feedback on my theory. Do you think it could be celiac?

[nvsmom]

Welcome to the board.

I certainly sounds like it could be celiac disease. It is good that you were tested. Did they run the full panel? Many doctors just run the tTG IgA and think that is enough. These are the most common tests:

TTG IgA and tTG IgG

EMA IgA

Total serum IgA (a control test)

DGP IgA and DGP IgG

AGA IgA and AGA IgG (older and less reliable tests)

And then there is the endoscopic biopsy too.

Don't go gluten-free until you are satisfied that your testing is complete.

Is your hashi's under control? I have both too, and I find if my hypothyroidism is under treated, I get many celiac like symptoms. Ideally your TSH should be near a 1, and free T3 and FT4 should be in the 50-75% ranges of your lab's normal reference range.

Best wishes.

[GottaSki]

Welcome!

 

It is a good idea to be tested for Celiac Disease given many of your symptoms can be associated.  Have you been tested for other autoimmune disorders?  If not, I highly suggest blood tests for inflammation and Sjogren's antibodies.  Sjogren's Syndrome can cause eyes and mouth to be dry.

 

Do not remove gluten until you are sure testing is complete including possible endoscopy.  

 

Once testing is complete...even if negative...remove ALL gluten to monitor symptoms...elimination is the only test for Non-Celiac Gluten Sensitivity which shares many of the same symptoms with Celiac Disease.

 

Good luck on your tests

[Madison-Marie]

Thanks for your responses. I don't know if you could call my Hashi's under control. My TSH was holding steady at 2 for a long time which my doctors thought was fabulous. No one ever bothered to test the frees until my most recent bloodwork. I will get those results on Tuesday. My TPOab was done just recently, and while my TSH has been "fine", my antibodies measured >1,000. My thyroid is also a mess according to ultrasounds. It is quite enlarged and puts a lot of pressure on my collarbone due to its position. Doctors can't agree on whether there are discrete nodules or it is just a nodular disaster area. One ultrasound said I had two nodules near 2cm, and when I went in for FNA the hospital tech and the doctor both said they didn't agree with that. I decided against the biopsy because I didn't want them grabbing random samples that may or may not be relevant to the overall picture.

 

I also recently had a neck MRI, and while the state of thyroid, heterogeneous and large, was noted but no discrete nodules were mentioned. That isn't what they were looking for, it was just an incidental finding.

 

I have been tested for ANA? which came back negative. No testing for any other antibodies or autoimmune conditions has been done. My mom has vitiligo and probably Hashi's. She's hypo but hasn't had antibody testing.

 

I know I may have more than one thing at work here and that celiac may not be one of them, but I am glad I am about to find out. The doc ordered the Celiac Panel at Quest Diagnostics, I don't know which tests are included.

 

What led me to suspect this was that I had a friend whose sister was very sick for a long time with symptoms similar to mine. She had panic attacks and was convinced that she was going to have a heart attack. Her stomach was always a mess. I recently learned that she was diagnosed Celiac and is doing fantastic gluten-free.

 

I kept a food journal and started to notice that a lot of my "spells" of dizziness or lightheadness where I was sure I was going to pass out occurred after I ate pizza (I love pizza). I also noted that most days I felt pretty okay in the morning, but within a half an hour of eating my first meal I started to spiral downward for the day. All of said meals contained plenty of gluten.

 

I also went gluten free for two weeks a couple of months ago. I wasn't shooting for it, I simply went on a diet where I ate only meat, fruit, vegetables and brown rice. I drank only water and tea. I noticed a difference in how I felt pretty fast, but I thought it was just because I was eating healthy in general. During that time frame, I had only a few moments of not feeling very well compared with the average of all day long. A long vacation and the holidays sort of interfered with what I was doing and I never got back to it.

 

I didn't tie this stuff together until my friend told me how his sister was doing. When I started to really think about all of my observations over time it made pretty good sense.

 

No matter how this test turns out, I will be going back to that diet, but not until the testing process is complete. Thanks again for your responses and advice.

[nvsmom]

Yikes. It does sound like your thyroid made a mess of itself. Your TSH might be fine for you or it might not - it really varies between people. As a very general rule, many people with thyroiditis often find they feel best when their TSH is near a 1. When my TSH is a 2, I personally feel pretty hypo but I now take natural desiccated thyroid (which has a fairly high level of T3 in it) and my TSH is suppressed to close to zero when I get my Free T's to their "happy place" over the halfway range of normal for my lab. Getting your free T's tested will give you a better idea of whether your meds are appropriate or not. For example, when my TSH was just over a 2, my free T's were still in the bottom of the normal range, just like they were when my TSH was in the teens.

 

Some of your symptoms could be attributed to early diabetes (numbness, tingling, stomach issue, mood swings, menstration issues) or even low hormones and steroids too (adrenal insufficiency causes light headedness when standing, mood swings).  If testing for celiac disease and rechecking your thyroid doesn't help, then you might find answers in these spots... I'm just offering advice from my own personal experiences.

 

Good luck with the diet (when you are done testing). Make sure you give it a good six months before you judge its helpfulness - some symptoms of non-celiac gluten intolerance (NCGI) are slow to go.

 

Best wishes.

[Madison-Marie]

Thanks nvsmom,

 

I had extensive blood work drawn that should give me information when I get the results Tuesday. TSH and free T3 and T4, glucose tolerance, and several hormones to evaluate for possible disturbances there. Between that and the Celiac testing, I think I should get some idea of what is going on, or at least some idea for things I can do to evaluate further.

 

I will let you know whether I belong here or not as soon as I find out