New, Frustrated, Confused And At Wits End

[wyntersgrace]

This is going to be long and I apologize in advance, but I hope you'll bear with me. I am so frustrated and have been in tears since my doctor appt earlier today.

Let's see....where to start. I'm 34 years old. Until 2004, I was always thin - never bigger than a size 6 and one of the lucky ones that didn't have to work hard to stay that way. In fact, I always had to work to keep weight on. In 2004, I started gaining weight slowly but steadily and my health was deteriorating - severe and daily headaches, body aches, muscle weakness, incapacitating fatigue, confusion, etc, etc, etc. Doctor would just pat me on my hand and send me on my way. February, 2007 I saw a new doctor who did some bloodwork and, when it showed prior mono, told me I had Chronic Fatigue Syndrome and that I was just going to have to learn to live with it. 6 weeks later, on March 12, 2007, I had a heart attack requiring 4 stents and a team of cardiologists scratching their heads saying I should have had a massive heart attack resulting in death or permanent disability and they don't know why I didn't. Fortunately, I had a minor heart attack with no permanent heart damage. Of course, we now know that it wasn't chronic fatigue; it was heart disease. I also managed to hemorrhage following the angioplasty - to the tune of 4-5 pints of blood. I never do anything half-way.

BTW, there is very little family history of heart disease and none at such a young age. No one really knows why I have such advanced, premature coronary artery disease.

For the next 3 months, I felt better than I ever had. No more fatigue, no more body pain, tons and tons of energy. I had some med reactions and got sick easily - had a mono relapse and an ear infection that almost landed me in the hospital on IV antibiotics - but I felt wonderful. I could walk and breathe and do everything that a healthy then-33 year old woman should be able to.

Then the body pain came back. It started in my knees and ankles, which was new. It had always just been my back and hips before. It just kept getting worse. Doctor said fibromyalgia. New doctor said no to fibromyalgia and was thinking rheumatic. By this time the cognitive issues were back in full force, as well as balance issues. She referred me to both a neurologist and a rheumatologist. I'm still in the process of the testing with the neurologist, although he told me that the balance portion of my brain had shrunk, but he's not sure why...maybe my age, he said!!! I'm 34 years old, for crying out loud, how much shrinking of my brain should there be?!!! None, according to my regular doctor. Neurologist went on to say that he thinks my problems are rheumatic and that if not, they'll be scratching their heads. Argh!!!

Rheumatologist did a ton of blood work - 9 vials total - testing for lupus, rheumatoid arthritis, among other things. Apparently, the first lupus test came back positive, but when they ran more it was negative. That confused me because I've had the basic lupus test before by my regular doctor and it came back negative, so I thought it would be the same. However, no lupus. No nothing. Except extremely low Vitamin D. Levels should be 30 or higher; mine are 4. So, he wrote a script for 50,000 units of Vitamin D twice a week. This was today. Until I pushed him to find out why I would be so Vitamin D deficient, he was just happy writing the script. After I pushed him, he's testing for celiac.

I should back up a bit. Before my heart attack and subsequent angioplasty I had horrible IBS. My life was controlled by my gut. However, since the angioplasty I've had no IBS - none, zero, zip, nada.

Anyway, he seems to be pushing all the problems onto the Vitamin D deficiency and possibly celiac's, but it doesn't explain everything. It doesn't explain the nerve involvement in my left hand, or how my right hand swells with very little use. It doesn't explain why everything stopped for 3 months then suddenly returned.

I'm so frustrated. If anyone here can relate to any of this, I'd be thrilled to hear from you. I feel like the doctor has found merely another symptom, but he's treating it like it's the cause of everything.

I currently have debilitating body (joint and muscle) pain - lower back, hips, upper back, neck, shoulders, and lesser knees and ankles - incapacitating fatigue, confusion, memory issues, tingling and numbness in the 4th and 5th digits of my left hand that will spread down my entire hand and has been constant since early December, constant ringing in my ears (for years), visual disturbances, restless leg like symptoms that involve all of my limbs and my back...and I'm sure there's more. Isn't that enough? LOL

Even if you can't relate but can give me ideas on how to get the doctors to communicate and treat this seriously as it greatly affects my quality of life, I would appreciate it. I just feel like I'm being blown off every where I turn. I never cry. I've been crying all day.

Thanks in advance.

[MNBeth]

Oh, my! I'm so sorry you've had so much to deal with. I wish I had more insight than I do. I will say that while I'm not at all sure that celiac could be the cause of all your issues, I do think it would be very possible for celiac to cause an awful lot of them - the muscle and joint pain, the neuropathy, the cognitive difficulties, and certainly the IBS issues and vitamin deficiencies. While I wouldn't wish celiac on anyone, it can, on the other hand, be a relatively painless solution to a host of medical issues.

In any case, I certainly hope you get some clear answers soon. Hang in there!

Beth

[Ursa Major]

You have been through an awful lot. It is true that celiac disease could be causing most, if not all of your symptoms. It attacks the brain and nervous system as well as the digestive system and can certainly cause all those pains as well.

But the heart attack? I don't know.

Have you been tested for Lyme disease? The only test that is really valid is the one from Igenex. See if you can order that and have your doctor administer it (send a PM to Rachel_24 or CarlaB for more information, they have both been diagnosed with Lyme disease).

You should also be tested for thyroid and adrenal problems. Unfortunately, most doctors, even endocrinologists are clueless about both (I had testing done recently and I am terribly frustrated with doctors right now). Make sure you get sent to an endocrinologist specializing in thyroid and adrenals (my doctor sent me to one who specializes in diabetes and knows next to nothing about adrenals and I have to start from scratch).

Unfortunately, usually prescription vitamin D is D2, which is almost worthless (it is not the natural kind). You need D3. The best way to get it is through taking cod liver oil and getting lots of sunshine (which is not really an option in the winter, unless you live near the equator). The best brand is Carlson's cod liver oil, and it doesn't taste bad at all (that is what I am taking, and it brought my vitamin D level up to optimal quite fast). Here is a link to check out:

Open Original Shared Link

You might need vitamin B12, a deficiency that can not only cause anemia, but also neuropathies. You should be tested for deficiencies in both vitamin B12 and B6.

Celiac disease (if that is one of your problems) can cause all sorts of deficiencies. You should also get tested for levels of ferritin (iron), hemoglobin, calcium, magnesium, potassium and vitamin K.

And of course, if you are deficient in vitamin D, your body can't use calcium and magnesium, and you'll end up with osteoporosis. In fact, you should have a bone density scan done to make sure you don't already have that as well.

Testing for celiac disease is a good start to find out what is happening. One thing at a time is enough.

I hope you find your answers and feel better soon.

[RiceGuy]

I believe your symptoms make it very clear. Though it's my opinion, I'd put money on you having Celiac.

Besides all your symptoms being very indicative, the fact that one of the tests showed mono is an important one. Without getting into too much of the details, mono is caused by the adenovirus, and it just so happens that part of the gluten protein sequence closely resembles a sequence in the adenovirus. This virus causes a number of things, including mono, pink eye, and croup. The research I've done suggests to me that once the immune system develops an antibody to the virus, it then has a sensitivity to gluten. It is important to note that some original varieties of wheat have been found to not contain the sequence which elicits the immune response (wheat has been extensively hybridized).

Anyway, no matter what your doctors say, my advice would be to get a sublingual methylcobalamin (vitamin B12) supplement, and a magnesium supplement. Until I started those, I had debilitating pains like what you describe. I began seeing very promising results in a matter of days. Some other common deficiencies may be calcium, vitamin D, iron, other B vitamins, zinc, and others I'm not thinking of ATM.

By all means, avoid all gluten. It may seem difficult at first, but if gluten is your problem, after a while you'll likely not even care.

Welcome to the board!

[Lisa16]

HI!

You whould definitely get a copy of the Paul Green book "Celiac Disease, The Hidden Epidemic." He has a large section on the correlation between celiac disease and the heart (a section on "cardiomyopathy." You will be surprised. He goes through all of the related symptoms and conditions and explains it all very clearly.

I have had many of the same troubles you describe. I was misdiagnosed (IBSD) for many years (23+) and I think once it starts affecting your heart (in my case borderline cardiomyopathy) or your skin, it is pretty far advanced. Dr. Green does say that going gluten-free can actually reverse the heart problems (as well as the others like the joint pain and IBS and muscle spasms and headaches, etc.) if they are celiac related.

I have been gluten-free two and a half months now and I think it got caught in the nick of time to save my life. Really.

I have had total remission of the body pain, spasms, IBS, DH (the dermatitis) since going gluten free and will go in to have a ecocardiogram at the 1 year mark to see if that is better too.

I am a new and different person and everybody who knows me sees it. The diet does take a little while to work and you will make some mistakes in the beginning-- but stick with it.

Good luck!

Lisa

[Lisa16]

HI!

You whould definitely get a copy of the Paul Green book "Celiac Disease, The Hidden Epidemic." He has a large section on the correlation between celiac disease and the heart (a section on "cardiomyopathy." You will be surprised. He goes through all of the related symptoms and conditions and explains it all very clearly.

I have had many of the same troubles you describe. I was misdiagnosed (IBSD) for many years (23+) and I think once it starts affecting your heart (in my case borderline cardiomyopathy) or your skin, it is pretty far advanced. Dr. Green does say that going gluten-free can actually reverse the heart problems (as well as the others like the joint pain and IBS and muscle spasms and headaches, etc.) if they are celiac related.

I have been gluten-free two and a half months now and I think it got caught in the nick of time to save my life. Really.

I have had total remission of the body pain, spasms, IBS, DH (the dermatitis) since going gluten free and will go in to have a ecocardiogram at the 1 year mark to see if that is better too.

I am a new and different person and everybody who knows me sees it. The diet does take a little while to work and you will make some mistakes in the beginning-- but stick with it.

Good luck!

Lisa

[Lisa16]

Oh-- and I forogt to say, I had the tingling and numbness in the exact same place-- pinky and the outer part of the ring finger. they got all excited because those are fed by a very specific nerve and they thought I had carple tunnel-- but it was not that at all. It was celiac.

Depression and confusion too... give the diet at least two months. What do you have to lose?

[wyntersgrace]

Thank you for all the responses. You have given me a lot to think about.

I have had other levels checked often since my heart attack, including potassium and my neurologist is actually checking my B levels. Seems the only issue is the vitamin D. I find that odd because I never wear sunscreen and while I don't spend a ton of time outside, I do get outside some everyday. My insurance won't cover a bone density test at this point because of my age - even though my vitamin D is so low. Ridiculous, eh? I have talked to my cardiologist about taking magnesium supplements and he said that was fine as excess potassium and magnesium are easily excreted by the body as long as one does not have impaired renal function. (BTW, my heart disease is not myopathy - it's arteriosclerosis.)

I have found some info re: a link between vitamin D deficiency and heart disease. So, if it is indeed celiac and that is causing the vitamin D deficiency it could possibly all be related. The thing that has always thrown me is how all of my symptoms went away with the angioplasty. All of it. I was like a new person. Now that I think of it, when I had the 'mono relapse' is when all of my other symptoms returned.

What's interesting is that my physical symptoms match exactly Ankylosing Spondylitis which is an autoimmune, systemic rheumatic condition. However, I don't have the genetic marker and the x-rays showed my joints are fine. You could have knocked me over with a feather at that one because I have so much pain in my hips I was sure we were going to be looking at hip replacement. I can't stand to walk for more than a few minutes at a time.

I'm also researching lyme disease. I'm going to exhaust all traditional medical methods and try the gluten free diet. If that doesn't take care of it, then I'll be finding an LLMD.

My new doctor, a DO, is one that I really like and trust and she listens to me. I still have more neurological testing and once I'm done with that I'm going to gather my information, take it to her and say, 'ok. put this together for me.'

[Ursa Major]

I had my hip joints and my hands x-rayed a few years ago to check for arthritis, as all my joints were so very painful.

Now my joints only ache if I eat gluten, rice or eggs. Especially gluten and eggs are bad. But rice makes my finger joints swell to where it feels like I can't bend them at all.

You need to print out some evidence for your doctor that shows that even young children with celiac disease can have osteoporosis already, and that EVERYBODY who has celiac disease should have a bone density scan done. And of course everybody with low vitamin D as well.

I believe you are on the right track. Don't ever give up! You will find out what is causing your problems in the end if you are persistent.

You might start taking Coenzyme Q10, which is extremely important for the heart and can help heal it.

[wyntersgrace]

It's so nice to not feel alone anymore. This journey gets lonely.

Before my heart attack everyone just treated me like I was lazy. I *knew* I was really sick, but couldn't get anyone to listen to me. I even put a note in my desk at work with emergency contact information in case something happened. At the time, I felt like maybe I was being dramatic - after being treated like a hypochondriac for so long, you start to wonder if it's true - but at the same time was worried because I was feeling so, so terrible. Even my son, who was 15 at the time would tell me that I was lazy and selfish. I was barely functioning, but that was ALL I could do. So, when I had the heart attack - when I should have been scared and upset - I just felt validated.

And now it's like deja vu. Everyone was putting all of their hopes on the rheumy and when the 'only' thing he found was vitamin D and totally dismissed all of my pain, swelling and immobility I felt like I was right back where I started before the heart attack. I couldn't stop crying.

I felt so amazingly wonderful right after the angioplasty. I don't care if I have to eat worms, I'm determined to get back there.

Thank you for listening to me. It's very cathartic just getting this out.

[RiceGuy]

I don't care if I have to eat worms, I'm determined to get back there.

LOL. Just make sure they're gluten-free!

[healthygirl]

Are your doctors checking you for Hemochromotosis? It is an overload of Iron in the body. Here is a list of symptoms.

chronic fatigue

joint pain

arthritis, especially of the knuckles of the first and

second finger, and thumb

a change in skin colour, either bronzing like a tan

that never fades or a slate gray

abdominal pain and distention

menstrual irregularities and premature menopause

loss of body hair

loss of libido or sexual drive

impotence

sudden weight loss

thyroid problems

mood swings and other personality changes such as

severe depression or anger

elevated liver enzyme levels, such as AST, ALT,

GGT or alk phos, on routine blood work

elevated triglyceride levels

increased glucose levels (blood sugars)

diabetes (adult onset or Type II)

enlarged liver, cirrhosis or other liver conditions

irregular heartbeat (arrhythmia)

congestive heart failure or cardiomyopathy, a

disease of the heart muscle

The liver plays an important part in metabolizing Vitamin D, and hemochromotosis will typically affect the heart and liver as excess iron is deposited there causing issues. Your body's inability to metabolize vitamin d could explain deficiency there.

Good luck figuring things out.

[Stacia47327]

It's so nice to not feel alone anymore. This journey gets lonely.

Before my heart attack everyone just treated me like I was lazy. I *knew* I was really sick, but couldn't get anyone to listen to me. I even put a note in my desk at work with emergency contact information in case something happened. At the time, I felt like maybe I was being dramatic - after being treated like a hypochondriac for so long, you start to wonder if it's true - but at the same time was worried because I was feeling so, so terrible. Even my son, who was 15 at the time would tell me that I was lazy and selfish. I was barely functioning, but that was ALL I could do. So, when I had the heart attack - when I should have been scared and upset - I just felt validated.

And now it's like deja vu. Everyone was putting all of their hopes on the rheumy and when the 'only' thing he found was vitamin D and totally dismissed all of my pain, swelling and immobility I felt like I was right back where I started before the heart attack. I couldn't stop crying.

I felt so amazingly wonderful right after the angioplasty. I don't care if I have to eat worms, I'm determined to get back there.

Thank you for listening to me. It's very cathartic just getting this out.

I know how you feel being treated like you are lazy and a hypochondriac. I just joined the forum today because I can barely function and found an article that described me to a T. I hope you fight your insurance company. They should pay if you have bone pain.. I am going to push for a bone scan to make sure I have no infection in mine causeing the pain. I hope you feel better soon.

[hayley3]

Sacroiliitis is also a symptom of celiac disease, and Ankylosing spondylitis, and Inflammatory Bowel Disease and Reactive arthritis.

I think the doctors have it backwards and they are all related somehow. Maybe that vitamin D deficiency. Lots of bad things can happen if your body is deficient in vitamins.

My butt pain started in 1982, and it showed up on xrays in 1989. In 2004 someone actually dx'd it. It's sad.

I've heard that antibiotics make you feel better because you also have an overload of bad bacteria and the antibiotics kill them for a time. Maybe that's what happened to you. I've read this many, many times.