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Hashimoto's and Celiac can be blamed

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#1 Chopper


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Posted 10 November 2011 - 09:45 PM

Hello, All!

For the last several months I've had a variety of tests and I seemed to fall into a difficult diagnosis category. Well, the scleroderma doctor feels confident that my bloodwork showed a false positive for scleroderma and that Hashimoto's and Celiac are the causes of most of my symptoms.


Feeling cold
Hair loss
Dry eyes
Shaky vision
Difficulty swallowing
Muscle weakness / random muscle pain
Carpal tunnel
Swelling in hands and feet
Low blood pressure
Brain fog

And celiac:

Gallbladder failure


Splinter hemorrhages

At this point, due to their confidence, I'm not going back to the sclero doctor. Though I still wonder why I have those symptoms even though my thyroid is under control, I guess that sounds like a question for my endocrinologist.

So if indeed I do not have scleroderma, I guess I'm one of those weird ones who test positive but don't have it. I greatly appreciate all of the support and comfort you've all given me over the last several months! I wish you all good health and happiness!

Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#2 Joelf


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Posted 11 November 2011 - 08:40 AM

Hi Chopper,

Well, it's certainly good news to get any sort of diagnosis, even if it's not exactly what you thought it might be! It will be interesting to hear what your endocrinologist can add to the mix.

Even if your *final* diagnosis doesn't include Scleroderma, it still means that you'll be very welcome here! Please do keep posting and let us know how you're faring, won't you?

Best wishes,

Jo Frowde
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#3 Shelley Ensz

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Posted 11 November 2011 - 12:43 PM

Hi Chopper,

Well, on the positive side, at least something can be blamed, not only that, but two somethings!

All I can say is that it is very common for autoimmune diseases to be very difficult to diagnose because so many of the symptoms overlap so many different diseases. Both Celiac and Hashimoto's can encompass a very wide swath of symptoms.

I have a rare syndrome called Multiple Autoimmune Syndrome (MAS). Hashimoto's is just one small player in that. It took literally decades for many portions of MAS to be diagnosed because when you get more than one autoimmune issue going on, it can get extremely confusing, for doctor and patient alike.

Your scleroderma expert might be right. And your scleroderma expert might be wrong. Really, it is only time that will tell, and I am very well aware that is no comfort at all, either way you look at it.

I say it until I'm blue in the face, but I know everyone thinks they will be THE exception to the rule. It takes an average of six years for women with systemic scleroderma to be diagnosed in North America (three for men, but we won't even go there as to why) -- no matter how good or alert or well-educated or compliant or persistent the patient is, and no matter how competent their doctor is.

That said, I am still pretty sure that not seeing any scleroderma expert probably significantly increases the odds of never getting anything more than a death-bed diagnosis (if even that). Before I was, finally and appropriately, diagnosed on paper (as opposed to verbally and off-the-charts, which was years before) -- I heard somewhere that the majority of the time, lupus was diagnosed by autopsy.

Well, that was just the kicker for me. Whenever I felt down and out over what felt like another wasted doctor's appointment, I would tell myself, "I refuse to be diagnosed by autopsy!" It gave me enough gumption to stay in the game. Besides, when you're really sick you can't not stay in the game because try as you might, you can't entirely avoid the doctor's office.

At least in your case, it's possible that you might already be correctly and completely diagnosed. Only time will truly tell. Most of us remain largely undiagnosed without anything that really could account for everything along the way. So you do not have an "all in the head" diagnosis. You do have two major basic things diagnosed. And you do know all about scleroderma, you have us, and you have a scleroderma expert on tap, who has baseline records for you, should anything additional develop in that regard.

You deserve some warm hugs, all the way around.

Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#4 Chopper


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Posted 13 November 2011 - 09:07 PM

Thank you, Jo, I appreciate the welcome to still hang out here! I sent a letter to my endocrinologist Friday asking if it's feasible to blame so much on Hashimoto's and I look forward to hearing the response.

Thank you, Shelley, you have such a nice way of saying things. You're so right. Even if down the road there's a reason to change their minds, I appreciate that I've learned here how things generally progress slowly with limited sclero and have a good prognosis.

I thought I'd better clarify why the sclero doctor and GI doctor don't think I have sclero. My barium swallow back in May looked normal. The GI doctor said that 40% of sclero patients have gastroparesis, however, probably all of that 40% also have an abnormal barium swallow. Therefore, that is why Hashimoto's can be blamed for the gastroparesis. Also 9 out of 10 of my nailfolds looked normal and I have no skin involvement which was very important in their observations. My thyroid levels are now within perfect range due to Synthroid. I am seldom fatigued, and no longer notice muscle weakness and random muscle pain. I do wonder about the finger tip pains and splinter hemorrhages and even atypical Raynaud's despite the perfect thyroid level. You made a good point about personally realizing that things weren't in my head. That is such a relief to have that confirmation. Many times I asked myself and tested things to see if they were real. I need to remind myself that I can live with these irritations because they are not debilitating (though sometimes the GI trouble can be), but they are tolerable. And again, that comes from the comfort I received from this forum and the medical information in the resources here. I greatly appreciate that!

I'll check in. Wish you all well!
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#5 debonair susie

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Posted 15 November 2011 - 11:43 AM

Hi Chopper,

I just wanted to add: As long as your head is still spinning, you're a part of THIS family and don't you forget it!!! :emoticons-group-hug: (Okay? Okay)!
Special Hugs,

Susie Kraft
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#6 Amanda Thorpe

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Posted 15 November 2011 - 05:54 PM

Chopper, I am glad you have a diagnosis or two at least, you knew something was wrong and indeed it was. I hope you never come back...with a scleroderma diagnosis! :lol: :lol:

Take care.
Amanda Thorpe
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