My Story

[scottyg354]

Since I was a child my weight has always fluctuated. I would be thin and then heavy, this never really seemed to stop, until I just started being plain heavy. I'll get to that later. I remember as a kid always having skin boils and mouth sores (the mouth sores have stopped), having step throat and sinusitis at least 3 times a year, my gums being irritated (my dental hygiene was always good though because my mom stayed on us about that) and being fairly tired most of the time, being able to sleep at least 14 hours on the weekends (normal teenager stuff I would say anyways.) So I pretty much went through my junior high school and high school years blowing these things off because they were what I thought was normal.

After graduation I had my first actual health scare (19 years old). One night my girlfriend at the time and I ordered up some buffalo wings and pizza.We watched some movies and she went home and I went to bed. An hour or so after I started having this attack were I got very dizzy and couldn't catch my breath, my heart was racing, my chest was tight and I was clamming up. I went outside and walked around trying to calm down, this worked a little, but I was still have all the symptoms described. Being young and dumb I ignored them and the went away. Jump ahead four days later, I was eating with my parents and went out for walk. When I came back I was having another one of these attacks, this time I said to my dad I think I should probably go to the ER because this does not feel normal. At the ER they checked my BP (which was slightly high nothin major.), gave me an EKG which was perfect and checked my sugar which was high probably due to the fact that I just got done eating. Was told everything seemed ok and to follow up with my GP.

At my follow up he sent me for a Colonoscopy and Endoscopy (Showed GERD-Slight Irritation in the Esophagus and a small Hiatal Hernia.) and an ultrasound which showed know inflamation. Please mind you this was roughly two weeks later and my symptoms were still coming and going and now I also seem to have developed anxiety and fatigue and some minor GI issues mostly (morning D and messy BM's, gross I know). I blamed it on the anxiety of leaving high school and entering the real world.

Jump ahead a few years, and I started getting this constant nagging feeling in my left side, not really pain just an odd feeling. Again made nothing of it since i've been have these other symptoms for years. I also started getting heart palps and night sweats, the girl I was dating at the time told me about these and then I started noticing them. During this timemy work had me all over the place, within 3 months I drove across the country 4 times, living between CA and PA and driving at least 150 miles daily to and from a jobsite I worked 9 hours a day at. So my GI issues really started acting up C, D and Flat Stools, insance stomach noise, horrid smelling gas, burping and I had some ned physical problems as well, my anxiety was sky rocketing, my vision was wonky and best, my fatigue was so bad that I sleep at least 10-11 hours on weeknight and at least 14 on weekends, I would workout and lose weight only to gain it back almost instantly. I blamed it on IBS and stress and figured the problems would subside after I was settled a little.

So when I finally got back to PA and was working normally again LOL, nothing seemed to get better, as a matter of fact I started feeling alot worse, fatigue was horrible, I was getting depressed, I was balding, my skin rashes were flaring up, my feet were cracking, knuckles and elbows were dry, I was going bald, my back was always stiff, my muscles ached, my appetite wasn't the same and I was always angry. I started developing full body tremors that would wake me up at night. Finally all this and my GI issues got to the point that I said I had to see my GP (who was knew since my old one retired, saw him once like three years prior for another issue.)I explained everything to him and he laid the anxiety bit on me, I went with it because I always thought that was the problem. He also gave me another EKG which was fine, my BP was high so I got pills for that and some Lexapro. He also sent me for complete bloodwork (minus the Celiac panel, which he told me about at my most recent visit.) Got a call three days after my bloodwork that my TSH came back elevated @ 8.5, so i am now on .05 of Levothyroxine. I figured the thyroid was the cause of all my problems, until three months later all my symptoms remained with the exception of sleeping 14 hours a day.

So on my next check up I told him this, plus all of my stool symptoms (yellow and orange color) and my retchid gas. I also brought up food intolerance and he agreed with me there. So as the end of the month he is sending me for testing (scopes, malabsorption, etc.). So I hope I finally get some answers. Been way to long.

[SaraNade]

Sorry about the messed up post; I'm kinda slow sometimes...

[SaraNade]

Good luck, Scotty!! It sounds like you've been through some awful ordeals...

[Looking for answers]

Quite a journey you've been on...I hope it ends with some answers. Please keep us posted.

[scottyg354]

  On 3/8/2011 at 9:03 PM, Looking for answers said:

Quite a journey you've been on...I hope it ends with some answers. Please keep us posted.

I hope so to. I originally thought I had bowel cancer, but at 26 although it happens, that is pretty rare. I think that was just more me jumping the gun and going worst case scenario. This site was like a blessing in disguise.

I'm just sick of people telling me it's all in my head.

[mushroom]

I hope we're not too well disguised

[scottyg354]

I've actually learned to live with alot of my symptoms. But it would still be nice not to have them.

[Joni63]

  On 3/8/2011 at 9:07 PM, scottyg354 said:

I hope so to. I originally thought I had bowel cancer, but at 26 although it happens, that is pretty rare. I think that was just more me jumping the gun and going worst case scenario. This site was like a blessing in disguise.

I'm just sick of people telling me it's all in my head.

Wow Scotty! I had so many of those same symptoms, especially the panic attack type. Was checked for an enlarged heart at 14 because it would beat so hard and strong and I felt like my throat was closing off. And yes, I was told it was all in my head more than once. I hate to even discuss it with people because they still are so clueless as to all the symptoms it can cause.

I'm glad you found out the true cause and will be free of those symptoms. And you can always discuss it here! We all understand!

[scottyg354]

  On 3/8/2011 at 9:23 PM, Joni63 said:

Wow Scotty! I had so many of those same symptoms, especially the panic attack type. Was checked for an enlarged heart at 14 because it would beat so hard and strong and I felt like my throat was closing off. And yes, I was told it was all in my head more than once. I hate to even discuss it with people because they still are so clueless as to all the symptoms it can cause.

I'm glad you found out the true cause and will be free of those symptoms. And you can always discuss it here! We all understand!

Haven't found out the true cause yet, but im on the road to hopefully getting some sort of diagnosis.

[IrishHeart]

We know you are not making it up or causing yourself to be sick. it's not "all in your head".Most of us got the same rap about anxiety and/or depression-- left to feel like hypochondriacs or nutjobs.

We aren't. We're sick from head to toe, and the neurological symptoms are the worst.

Thyroid issues often accompany celiac. (You probably already know this)

Hope you get an answer soon. I never, ever thought my long and painful and scary nightmare would end, but I kept pressing for an answer, too....2 months gluten-free and I am seeing some results.....you hang tough, kiddo!

We all "get it" on here!! and even if your testing is NEG (it is for many of us) being gluten free is still your best bet! No gluten = feeling better.

That IS a diagnosis.

[GFinDC]

Since you mentioned thyroid issues I wonder if you have thot about Hashimoto's thyroidits? It is associated with celiac disease. Your doc can check you for thyroiditis antibodies also.

[scottyg354]

  On 3/9/2011 at 6:33 AM, GFinDC said:

Since you mentioned thyroid issues I wonder if you have thot about Hashimoto's thyroidits? It is associated with celiac disease. Your doc can check you for thyroiditis antibodies also.

That is usually the common cause of low thyroid levels right?

[nuttmegs17]

  On 3/9/2011 at 1:19 PM, scottyg354 said:

That is usually the common cause of low thyroid levels right?

TSH levels are the oppostie.....HIGH levels indicate hypo (so hashimotos)....LOW levels = hyper (Graves).

TSH stands for :Thyroid Stimilating Hormone....a high level means your body is producing a lot in order to stimulate your thryoid - it points to HYPO or Hashimotos. If it was LOW it would mean your body isn't producing this hormone b/c you already had a lot of thyroid hormone in your bloodstream. Counterintuitive I know! The range is generally: .03-3.0....8 is pretty high.

I suffered from Graves (although I gained weight!), and my levels were on the low end....now they are creeping up but still within normal range. I cannot help but think that fact that they keep trending up is also causing some of these symptons but perhaps that is wishful thinking {thyroid treatment is pretty straightforward in terms of knowing what to do to treat it...I actually cried earlier in the week when my doc told me it wasn't my graves coming back....ugh)

Sounds like axiety is common in celiacs - it is something I have battled in the past as well...interesting...chicken or the egg for that one?

I hope you are able to get answers soon!

[GFinDC]

  On 3/9/2011 at 1:19 PM, scottyg354 said:

That is usually the common cause of low thyroid levels right?

Hi Scotty,

Hashimoto's is caused by antibodies that attack the thyroid. People on here report sometimes being hypo and sometimes being hyper with Hashimoto's. It seems the attack on the thyroid can cause both extremes. Possibly dying thyroid cells let off more thyroid hormone as they expire, creating hyper symptoms. Kind of a last gasp effect. Eventually the thyroid is destroyed the person becomes chronically hypo-thyroid. But they can alternate between hyper and hypo while the disease is progressing.

So, a long winded way of saying, yes, Hashimoto's can cause hypo-thyroid symptoms. I don't have any links to substantiate this info but it gleaned from various sources over time.

I used to think I had Hashimoto's myself, but it turned out the lump on my throat was a thyroid cyst instead. People sometimes have a swollen neck from active Hashimoto's on one side or the other or right in the middle of the neck is possible too.

People with hypo-thyroid have a long list of possible symptoms, including weight gain, lethargy, low body temperature, insomnia etc etc. All or none of these can apply to any particular individual at any particular time. Hashimoto's is an auto-immune disease like celiac. There are quite few threads about Hashimoto's symptoms on this board. It is associated with celiac disease and more women than men seem to get it.