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Cushings Anyone?

sandsurfgirl

By sandsurfgirl
in Related Issues & Disorders

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sandsurfgirl Collaborator
sandsurfgirl
Posted

I'm in the process of being tested for Cushings. I have an adrenal tumor and cortisol is very high, but they have to do a lot of evaluating before they decide if it is definitely Cushings and if they are going to operate on the tumor.

It's very hard facing yet another diagnosis. I was diagnosed celiac not quite 2 years ago and have been doing really great until a month ago. I had lingering fatigue and inability to lose weight and then my health crashed.

I also have low aldosterone and I'm on medication for it. It does help but I feel pretty awful many days.

Anybody else have Cushings? I have to think there is a correlation especially those of us who were diagnosed at 40 and later. I had celiac my entire life and got diagnosed at the age of 40. That's a lot of damage to do to a body.

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pricklypear1971 Community Regular
pricklypear1971
Posted

I don't have Cushings but I have had some adrenal problems - first noticed when they gave me corticosteroids. I couldn't regulate blood sugar, etc. I keep wondering if those steroids sent me over the edge to another problem - like diabetes (blood sugar thing).

Yes, it's tough when all these problems come down. And it makes me more than a little angry I wasn't dx'ed sooner (I'm 40, also).

So far I'm hypothyroid, have Hashimotos, am evidently Celiac since I have vitamin deficiencies and what is apparently DH, AND my liver is a bit tweaked and I have one blood test that says I'm prediabetic. Ain't life grand???

Bit the good news is the rash is under control, my brain now works, I can take 30 minute hike, and I don't feel like hammered crap.

So overall, I'm good :).

AMom2010 Explorer
AMom2010
Posted

My sister was misdiagnosed as having cushings, Thank God she sought a second opinion before having the surgery! I am gluten intolerant and suspect she may be as well.

RollingAlong Explorer
RollingAlong
Posted

Ny spouse was checked for a pituitary tumor. The PNA

Open Original Shared Link

is a very helpful group; be sure to check them out and best wishes!

sandsurfgirl Collaborator
sandsurfgirl
Posted
  • Author

My sister was misdiagnosed as having cushings, Thank God she sought a second opinion before having the surgery! I am gluten intolerant and suspect she may be as well.

Celiac can look like so many things!! I thought when I was diagnosed celiac nearly two years ago that gluten free was the answer for me. But sadly I had other stuff brewing. I blame celiac for it all. I think there is only so much damage your body can take before it starts having other problems. It seems like so many of us have other health issues. I can only hope that we caught celiac in time and my other issues can be cured and/or managed.

I'm pretty certain I will need to have the adrenal tumor removed. It's a ton of testing to get the firm diagnosis though. It's surprising to me they misdiagnosed her because my docs are being so careful to be certain. I have to have quite a few high cortisol tests and show a pattern of high cortisol, not just one or two.

Personally I dont' believe in gluten intolerant. I think it's all just various phases of celiac. You caught it before it got out of control. It doesn't matter in the end if you are on the gluten free diet, but I think it does matter to people around you. I think if you say you have celiac people take you more seriously. For some reason they see intolerance as not a big deal. So my advice is to stop calling yourself gluten intolerant and call it celiac. If people ask about tests, just say you had a blood test. They don't know anything about it anyways and they aren't going to question you further. After nearly two years on the board (gosh has it been that long???) I've seen so many people suffer because of that gluten intolerant label and it makes it harder for them to comply with the diet. Stay gluten free no matter what they call it!

AMom2010 Explorer
AMom2010
Posted

Yes, I too highly suspect that I actually have celiac disease rather than gulten intolerance. I have defective tooth enamel and have had stomach problems for as long as I can remember. Currently my biggest complaints are neuro symptoms, some of which have improved since going gluten free over 3 months ago. Personally I am not all tempted to cheat on the diet. I can usually tell within a couple of hours, with the return of neuro symptoms if I've been cross contaminated. My improvements have been too great, there is no going back now :)

My sister went to see a specialist who is considered an expert in Cushing's, and he told her she has a condition called Rathke's cleft cyst rather than a tumor. It is something they are going to keep an eye on, but I am so glad she didn't have the surgery - many complications as I'm sure you are aware. Her primary symtpoms were horrible migraines and loss of vision. She chalked it up to pre-wedding stress and hasn't had any symptoms in over 2 years.

Best of luck to you!

sandsurfgirl Collaborator
sandsurfgirl
Posted
  • Author

Yes, I too highly suspect that I actually have celiac disease rather than gulten intolerance. I have defective tooth enamel and have had stomach problems for as long as I can remember. Currently my biggest complaints are neuro symptoms, some of which have improved since going gluten free over 3 months ago. Personally I am not all tempted to cheat on the diet. I can usually tell within a couple of hours, with the return of neuro symptoms if I've been cross contaminated. My improvements have been too great, there is no going back now :)

My sister went to see a specialist who is considered an expert in Cushing's, and he told her she has a condition called Rathke's cleft cyst rather than a tumor. It is something they are going to keep an eye on, but I am so glad she didn't have the surgery - many complications as I'm sure you are aware. Her primary symtpoms were horrible migraines and loss of vision. She chalked it up to pre-wedding stress and hasn't had any symptoms in over 2 years.

Best of luck to you!

Neuro symptoms are my first sign I've been glutened too. I get dizzy, anxious and feel like I'm crawling out of my skin. Then the tummy stuff sets in.

Have you changed all of your soaps, shampoos and lotions? If they have gluten you are getting trace amounts from your hands, etc. Shampoo and conditioner run down your face into your mouth in the shower and it's impossible to get it out of your mouth. Gluten is always really obvious in products because it's nearly always wheat based- wheat extracts, wheat protein, wheat germ oil, etc. Tocopherols can be made from wheat but they aren't always and they don't have gluten. The Candaian Celiac Association has a statement on them and they are safe. I've never had a problem with them.

I use Biolage and Enjoy hair products. Bath and Body Works soaps and lotions haven't had any gluten that I've found, but I would check labels to be sure. Suave stuff is nearly all gluten free if you want something cheaper. My hands have sensitive skin so I use their shower gels as hand soap because other hand soaps are harsh for me.

For cosmetics I only worry about the base make up and my lipsticks. I don't worry about eyeshadows or blushes or other eye make up. I use Benefit and Bare Minerals. Mac Longwear Lipstick. Not all Mac lipsticks are gluten free though. You have to check.

I didn't start really improving until I changed out my products. I was a Redken girl for years and years and I cried when I gave up my favorite shampoos and conditioners but they were full of wheat.

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