Anyone With Similar Experience?

[alevoy18]

Hi all,

I've had a strange road to my diagnosis and a tough recovery, just wanted to share my story to see if anyone had a similar experience. Be warned it is long, I am sorry in advance.

In 2008 (at age 21) I collapsed and was brought to the hospital. I stayed for a week and they told me my heart rate was low, but I passed the echo/stress test, etc. I continued to see a cardiologist who told me my heart rate was around 45 in his office, but he was going to wait before he started any form of treatment. Later into 2008, I collapsed again and decided to avoid the ER this time. The next day I collapsed again and hit my head, my fiance made me go to the ER. In the ER my HR continued to be low, but they once again said, they don't want to do anything at my age. Right before the ER released me, my heart had a 9 second pause and restarted. It did it again an hour later. At this point the Cardiologist on duty said he feels I need a pacemaker. I stayed there for a week until I could be scheduled in for surgery. During that time my HR would dip into the 20's at night and stay at 40's during the day. I still passed all tests while there. Eventually I got my pacemaker put in. The cardiologist told me he feels the stops in my heart were caused by complex vagovagal syncope. In my report is said case of bradycardia with vasovagal syncope causing heart pauses.

In early 2009, after the pacemaker, I continued to collapse multiple times, with multiple minor concussions. After being monitored for epilepsy (had convulsions after collapsing), they determined I did not have epilepsy, but I did have Hypotension. My blood pressure was on average about 85/50 and would drop much lower randomly. So they put me on florinef (steroid medication to help body retain salt and raise BP) and things did improve.

Later in 2009, I began to become mildly anemic and all my other CBC blood counts were on the border of being low. Also my Absolute Lymphocytes were very low at 0.5 (normal 1.2 - 4.0). Due to this, I got sent to a hematologist who did tons of blood tests. All my tests related to cancer came back fairly normal and she sent me to a GI doctor.

In August 2009, the GI specialist decided based on the fact that I'd been in Sick Kids all my life for GI issues (no diagnosis other than IBS), that he wanted to test for Celiac Disease. The tTG-IGA came back at 60 (normal < 20) and he scheduled me for a biopsy. The biopsy came back stating, Increased IEL's and Moderate Villous Atrophy seen and moderate gastritis. With this I had my diagnosis and started a gluten-free diet.

In early 2010, I was beginning to have my HR go through the roof when I even did light exercise. I had a halter put on and it showed my HR getting up to 240 a few times. They first said it was SVT, then they diagnosed it as inappropriate sinus tachycardia because the waves seemed normal. My cardiologist put my on 5mg of a betablocker to try and stop the high rates during exercise or exertion.

Also in early 2010 I had tightness in my throat and I went for an ultrasound and had Thyroid panel done. My Thyroid panel was normal, but my US showed a 8mm hypoechoic nodule on my thyroid. The Endocrinologist said that it was fairly common and followed up later in 2010.

On my second US, the report now showed two nodules (one 9mm and one 7mm, both hypoechoic). The US also showed 10 lymph nodes between 8mm and 2cm. Due to this, I was scheduled for a abdomen and axillary US. This showed a 2.4 x 1cm lymph node in my armpit. They decided to wait once again for another US.

At the end of 2010, I had my third US of axillary and neck. It showed my Thyroid nodules were both the same size and my armpit lymph node was now was 3cm x 1.8cm, growing quite a bit in 3 months. Because of this, I had an FNA of my armpit lymph node. It came back inconclusive due to bad specimen and my surgeon decided to wait until the next US before another FNA, due to the location being risky with nerves running near it.

Now in January, I have a Thyroid US scheduled in February because my endocrinologist does not want to do an FNA until it is over 1cm. It is 9mm, why wait? Anyways, I also have a US in February to see if the armpit lymph has shrunk or not. If it has not, I was be doing another FNA. Due to my Celiac Disease, both doctors feel it is likely the cause of my swollen lymph nodes.

In summary, here are now the doctors I see:

Cardiologist: Once a year to check out my pacemaker and to see how I am doing.

Endocrinologist: Twice a year and after each of my US reports, he check in on me to see if we need to do an FNA. By the way I also had Hashi/Graves Antibodies checked and they were normal.

Neurologist: I see a neurologist because they believe my heart issue and BP issue is because of undiagnosed Celiac Disease messing up my autonomic system. Because my heart is structurally ok, they feel it must be a sensitive SA node (hearts natural pacemaker) issue and therefore come to the conclusion with my BP issue, heart issue and vasovagal, that I have an autonomic issue. I also have really bad headaches, short term memory issues and some thinking issues since all my falls. I have over 10+ mild concussions in a 2 year span. All my CT's came back normal, but the multiple minor concussions took a toll on me. My doc says post concussion syndrome, but there really is no treatment.

Gastro: Follows me up with Celiac tTG testing and vitamin tests. Currently my Vitamin D is at 30 (range 30-80), Zinc 12 (range 12-30) and B12 is 200 (range 160-900), all other vitamins tested were normal. He wants these three to come up, but feels my levels are doing well for only 1 year Gluten Free.

Sorry for the long winded explanation, but I've never said my whole story before. My questions to everyone out there is:

1. Does it not seem possible that I could actually have Sick Sinus Syndrome, not just Vasovagal since I had a constantly low HR. yes of course it did go in the 50's or 60's sometimes, but at rest is was always in the 40's or lower and I had symptoms. It wont matter since the treatment was already done, but I am just curious.

2. Does anyone else have issues with cognitive issues from concussions. I just don't understand why I am not getting better. Yes I had over 10+ concussions, but they were all minor. Some of them were Grade 3 concussions (highest), but I never had a CT scan show anything, so they were always considered mild head injuries. I am just suprised it has not improved since my scans are ok.

3. Does anybody else suffer from autonomic issues? I hate my BP dropping. Last time I saw my gastro, it went from 120/80 when laying down to 80/40 when standing, that is a large drop and I get dizzy all the time. I am just scared to fall again as I wont be lucky everytime.

4. Over the last 3 years, I went on LTD from work after my pacemaker surgery because I was having seizures all the time from falls. I ended up being off 6 months until my doctor cleared me (basically after I was put on BP meds and I felt healthier). I was fine from that point until June of 2010, when I collapsed again (my BP began to not stay stable due to betablockers lowering it). After this last minor head injury, my headaches got a lot worse and I could no longer function at work. Last month I asked my doctor to give me a note to go back. Since I was pressing, she did it and I've been slowly returning. A month in, I'm struggling to keep up as I'm run down most days. I just feel so guilty as I am only 24 and I have been on LTD twice in 2 years. If anybody has experience with this, any comments are appreciated. I know some people are much worse off then me and probably are working, so I feel so lame, but I just struggle each day and trying to keep my functioning at work is hard. I make mistakes, get headaches and just can't keep up (Am a system's programmer at Royal Bank of Canada).

Anyways, I'll stop now. In no way am I looking for pity or sympathy, as I know everyone has struggled on here and many are worse off. My heart goes out to all of you, as I am only looking for others to share how they are, to feel less alone and less guilt. Just feel weak when I am at the age I should be strong. Plus having a lot of issues that are kind of backdoor health issues that can't be directly seen, kind of makes me feel like people don't understand (autonomic can't be seen, no medication. Celiac can't be seen, nobody unstands). Anyways, thanks again for listening.

[Mari]

I had a transient ischemic attack (TIA) - a small transcient stroke recently and went thru all sorts of expensive tests which showed no problems. When I was younger I would get dizzy if I stool up too fast. Since the Drs didn't figure out the cause I went to an alternative medicine book and read there that the TIA could have been caused by an overload of mold toxins in my body. Mold toxins are neurotoxins and can affect many systems so thought you might want to read some of the websites. I searched for 'mold toxins blood pressure and came up with lots of sites. Here's one:

Symptoms | Mold Toxin Doctor

Call us today 949-458-6728. We can help you! ... are as many as 200 symptoms which may affect different parts of the body. Yet, mold ... Abnormal Blood Pressure (low or high ...

www.moldtoxindoc.com/mold-toxin-and-illness/symptoms.php

[ravenwoodglass]

Your B12 is pretty low. Are you taking a sublingual B12 to bring it up? If not you should consider it.

Celiac disease can give have a neuro component. I had severe memory issues as well as problems with movement, idiopathic epilepsy (for which I was given some really nasty antiseizure meds) and aphasia. All have resolved with being strict with the diet but it took time.

I also had extremely low blood pressure all my life. It was in the same range as yours. I had to be very careful with standing up from the time I was a child to prevent myself from getting dizzy and falling. This also resolved after a time on the diet and my BP is now in a normal range.

I don't know how many of your issues are being caused by celiac but I would suggest that you be very, very strict with the diet. Eat mostly whole unprocessed foods and avoid any chance of cross contamination.

I hope things get better for you soon.

[sb2178]

I get the dizzy/passing out/collasping issue, although mine were shorter term and far less severe, fortunately. It is very frustrating to find that you can't trust yourself to do normal things like drive or bike because it just takes a little anomoly for your vision to go black and fuzzy, or just gone. And then, boom, you're lying on the floor or ground. Fortunately, I only experienced that for about 6 weeks and then was able to resolve the issue almost immediately with the gluten-free diet and increased salt intake. It's really scary tho.

I have had very few neuro issues beyond dizzyness and syncope, but other members have reported that neuro healing typically take 6 mo to 2 years, depending on the severity.

My only suggestion it get the GI to do your IgA AGA or DGP as well as the ttg. Having a high negative on either of those may indicate a very low level of exposure to gluten which could be inhibiting healing. And don't worry about the LTD. You have been a productive member of society and will be once again in one way or another. Sometimes you just need the downtime to heal.

[starrytrekchic]

The concussions could be causing the memory problem. It's been a big deal in the world of college and pro football this past year how these minor concussions lead to brain damage and neurological problems later on in life, but by and large, they don't seem to occur at your age--it's more 40+ when the symptoms start occurring. You might do a brief internet search on the buildup of concussions in sports, because the level of damage would be similar to yours (mild, multiple concussions) and it's been a hot topic recently.

That said, the memory problems are more likely from celiac. It took me a year gluten free for my memory to start sorting itself out, and the 8 month-1year mark is when it was the worst. It could be a diet thing--lack of carbs if you're not eating gluten free replacement breads, or it could be due to your low vitamin levels (lack of all three of those you listed can cause memory problems).

[GFinDC]

I have a thyroid cyst and a couple nodules that my endo monitors. I have had them for 3 years now and they aren't any big problem so far. I think they say its something like 90% or more of thyroid nodules are benign.

I have gotten better at memory since going gluten free. I don't feel like I am back to 100% but much better than before gluten-free.

Gluten can definitely affect the brain. Gluten ataxia is one known condition from gluten affects. It affects peoples walking (nerve coordination).

You may be better on a whole foods diet for a while. gluten-free products may contain a small amount of gluten and that can be a problem for some people. You also might be reacting to other foods, like soy or something else. You could try eliminating all the top 8 food allergens for a couple weeks and see if that helps your symptoms any.

[WW340]

Yes, the multiple concussions can impair cognitive function. This is usually a short term problem, as in post-concussive syndrome, or long term effects that are currently being studied.

I also had very low blood pressure most of my life. I had occasional episodes of passing out. It was not unusual for me to have a bp of 60/40 and feel completely normal. I was denied surgery more than once due to low blood pressure.

You may need to go on a nasal(nascobal) form of B12 or injections to get your levels up. I required that for about a year. Working on getting your vitamin levels optimal may go a long way toward making you feel better.

Many of us have ongoing medical issues due to long standing Celiac. The gluten free diet helps many things, but some damage may remain.

[Skylark]

Wow, what a list. I am so sorry you're this sick at your age.

I had thyroid nodules. In my case they were from Hashimoto's thyroid disease and getting on the right amount of Synthroid made a big difference. Your thyroid panel was normal, but I really have to wonder. Among other things, the low BP and HR and short-term memory issues can be caused by low thyroid. Is it possible to get to a good endocrinologist?

I think for a lot of us the many years of malnutrition from malabsorption causes a lot of heath problems. I was "brain fogged", tired all the time, had carpal tunnel syndrome, and psychiatric disorders from the havoc gluten was wreaking on my system. It takes time to recover from celiac, and I didn't feel nearly as good after a year gluten-free as I do now. As others have mentioned, it took a lot of vitamins, minerals, and fish oil for me to get the neurological recovery.

[alevoy18]

Thanks for the responses everyone, I appreciate it. While I am sorry to hear you all had issues, I am glad to see you are improving.

As far as my vitamin levels go, I am taking supplements for my vitamin D and zine and am taking a sublingual B12. My doctors don't feel my B12 is low enough for shots, yet anything I read says under 400 can cause neurological issues and I'm at 200.

Also, as far as my thyroid goes, I do have a good endocrinologist. Here was my thyroid panel:

TSH: 1.51 (range 0.30 - 3.5)

Free T3: 5.2 (range 2.8 - 5.4)

Free T4: 18 (range 12 - 24)

Since my thyroid panel was normal, he felt my symptoms must be celiac related only. Since all my antibodies were negative, he has left it at that. Once my nodule becomes over 1cm, he will do a biopsy...it is 0.9cm right now.

Thanks again everyone and please take care!

[Skylark]

I'm glad to hear you're working with a good endocrinologist.

As for the B12, there are recent studies showing that 1000 mcg a day orally is as good as shots. Make sure you're taking methylcobalamin and not cyanocobalamin because it is the natural form and there is some evidence that it's taken up and stored slightly better.

As far as the neuro problems, be sure you're getting plenty of healthy oils. Your brain needs a wide variety of fatty acids to repair. Foods to eat in particular are seafood (or fish oil) for omega-3, eggs and soy for lecithin (or lecithin granules), and nuts and flax seed for omega-6 and other unsaturated fatty acids (or take flax seed oil). If you are trying to limit fats for the cardiac problems, I would substitute these fats for fat from red meat and dairy for the time being. Amino acids are important too, and some experts suggest liquid amino acid supplements. Here is a really nice article on holistic healing from traumatic brain injury that agrees with much of what I've read.

Open Original Shared Link

There is also no harm in picking up a high-quality complete multivitamin and mineral supplement as well as the supplemental D, zinc, and B12. I prefer a high-quality supplement because cheap drug store pills don't always dissolve very well. Solgar and Metagenics are supposed to be good or if you don't mind spending a bit, you could look at the Open Original Shared Link I take. (I get nothing for recommending them - it's just something that has worked beautifully for me because it's designed to support the brain and nervous system.) You might also consider temporarily adding CoQ10.

[sb2178]

It's fairly easy to test the dissolving issue- drop it in a glass of water with a splash of vinegar for an hour. Swirl it around a couple of times. I have a CVS calcium citrate that I just tested and it was dissolved in approximately the time it took me to eat a brownie.

If it's dissolved by then, you're in pretty good shape. I believe consumer reports has also done extensive supplement testing if you're willing to cough up to money to join.

[alevoy18]

Thanks a lot!

I actually have been taking the wrong B12, I will try switching to methylcobalamin.

Thanks for the great advice, I appreciate it.

[SaraKat]

Hi- I just want to say I had unexplained enlarged axillary lymph nodes on the left side. I never thought it was celiac related, but it is interesting you mention that also. I started having underarm pain in Oct 2009 so in Jan 2010 they did an axillary U/S and there was one enlarged node at 1.5cm, then 2 months later there were 2- the 1.5cm one grew to 2.1cm and there was another that was 1.8cm. I was referred to an oncologist who didn't want to do the FNA until they were bigger. The U/S showed them having fatty centers, which is good I guess. Anyway, I had another U/S in May 2010 and they were back to normal size. I have no explanation on that whole thing, maybe it was celiac related. I was just dx with celiac Sept 2010.

I also had a few nodules on my thyroid, they were too small to biopsy and they actually went away (according to my last U/S). I had taht tightness feeling in my throat too, that prompted my ENT Dr visit. All of these were way before the celiac dx too.

Sorry you are going through all the cardiac stuff too. I hope you feel better. They say sometimes it can take a while being gluten-free to really feel a lot better.

[frieze]

Gastro: Follows me up with Celiac tTG testing and vitamin tests. Currently my Vitamin D is at 30 (range 30-80), Zinc 12 (range 12-30) and B12 is 200 (range 160-900), all other vitamins tested were normal. He wants these three to come up, but feels my levels are doing well for only 1 year Gluten Free.

ALL of these are low! B12 should be methyl... and on an empty stomach...be careful supplementing zinc, too much can produce a relative def. in copper. If you suppliment with Vit D make sure that it is D3. Good luck.

[Wolicki]

I also has issues with low blood pressure and slow pulse. I was also prescribed Florinef, which I took for about 3 years. IT helped some, but it also gave me life threatening low levels of potassium. I was always on a supplement. My BP was usually around 70 over 35. My doc kept threatening to hospitalize me for it. And when I was in the hospital due to repeated pneumonia, my bp would be so low that I always had a nurse sitting with me. Once I went gluten free, all of this resolved almost immediatley. I still occasionally have a big drop in bp when I stand up,. but it doesn't last long.

I had to take B12 shots and sublingual B12, along with 50,000 IU Vitamin D 3 times per week to get it up to the normal range.

I do hope they figure this all out for you soon and that you feel better!

[beefree11]

There is also no harm in picking up a high-quality complete multivitamin and mineral supplement as well as the supplemental D, zinc, and B12. I prefer a high-quality supplement because cheap drug store pills don't always dissolve very well. Solgar and Metagenics are supposed to be good or if you don't mind spending a bit, you could look at the Open Original Shared Link I take. (I get nothing for recommending them - it's just something that has worked beautifully for me because it's designed to support the brain and nervous system.) You might also consider temporarily adding CoQ10.

The FermPlus and Olive Leaf extract sound vedddy interesting! thanks Skylark.