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I Had Hoped To Never Return To This Place


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106 replies to this topic

#91 lynnelise

 
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Posted 04 January 2012 - 07:07 AM

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.

As for the hysterectomy, my doc thinks that ablation has an "abysmal" success rate. If I had the option of taking hormones (can't due to the liver disease), then that would have been our first option, I'm sure. The ovaries will remain unless there is a medical need to remove them. I already have osteopenia and I can't take any hormone replacement, so it's in my best interest to keep them if at all possible.

Going to the dermatologist today for the shingles.


A co-worker had an ablasion in September and will be having a hysterectomy this Friday. The bleeding has already started again!
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#92 Fiddle-Faddle

 
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Posted 04 January 2012 - 07:14 AM

There are support forums about the question of ablation vs. hysterectomy; here is just one: http://ehealthforum....pic15102.html#b
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#93 Skylark

 
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Posted 04 January 2012 - 08:10 AM

A co-worker had an ablasion in September and will be having a hysterectomy this Friday. The bleeding has already started again!

Poor thing. I can see where ablation wouldn't work, but doctors can remove the uterus and spare ovaries. That's what Mom wishes she had done.
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#94 Skylark

 
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Posted 04 January 2012 - 08:16 AM

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.

I'm glad to hear it. I hope with the whole foods focus you will feel better in general about what you're eating. I'd recommend reading Sally Fallon's Nourishing Traditions if you're going to focus whole foods. It's a real eye-opener about the American diet, and it tells you how to prepare whole foods in traditional, nourishing ways.

Good luck with the shingles. My dad and neighbor both got great relief from capsaicin cream.
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#95 Gemini

 
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Posted 04 January 2012 - 08:24 AM

Oh dear...it does sound like shingles. My Celiac daughter got shingles this summer (she was 12) She was first diagnosed with impetigo as it was on her face. But it didnt heal on the antibiotics. after about 10 days she woke up with excruciating pain in her ear. She ended up being hospitalized for 3 days as it took them awhile to make the shingles diagnosis. None of them had ever heard of a KID getting shingles. But then, none of them knew a THING about celiac. Oh, and we did finally connect it to her eating gluten. She snuck a milano cookie and puked for two days. (First and last time she cheated!) The shingles followed about a week later. Anyway, she lost the hearing in one ear and had partial loss in the other. She had to get hearing aids. Dont mess around with shingles! Your immune system is telling you something...pay attention!



I agree...you don't need rocket science to diagnose shingles. It's the only rash that will appear on one side only of the body...it follows the nerve pathway. No biopsies needed for this and I have never heard of doing one to diagnose it. The anti-virals work wonders at knocking down the severity of the outbreak but if you don't take them within 72 hours of the first eruption, their effectiveness is diminished. The rash itself is not painful but the nerve inflammation behind it is excruciating. Shingles can occur if you are run down or have liver issues.
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#96 ravenwoodglass

 
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Posted 04 January 2012 - 08:37 AM

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.


I am relieved to hear that you are going to choose to go with a whole foods (gluten free) diet. Perhaps thinking of it as simply whole food and nonprocessed it will be easier for you to do. You are thus making the choice to treat your body as well as you can rather than 'treating a disease'.
I have been following the discussion but what you are going through with your liver just hits so close to home for me that I was having a hard time being able to write a post. Quite a few were deleted but you have gotten some good words of advice, information and support from a lot of people.
I am glad you are making the choice to give yourself the best chance you can have at a long and healthier life. I hope things go well with your procedure and that you are feeling better about everything soon.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#97 IrishHeart

 
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Posted 04 January 2012 - 08:54 AM

I agree...you don't need rocket science to diagnose shingles. It's the only rash that will appear on one side only of the body...it follows the nerve pathway. No biopsies needed for this and I have never heard of doing one to diagnose it. The anti-virals work wonders at knocking down the severity of the outbreak but if you don't take them within 72 hours of the first eruption, their effectiveness is diminished. The rash itself is not painful but the nerve inflammation behind it is excruciating. Shingles can occur if you are run down or have liver issues.


The doc took a "scraping" from hub's rash--like a swab--- to be sent to the lab when he suspected shingles, but he also gave him the anti-virals right there in the office. And yes, the shingles were very painful.

I used the word biopsy in my previous post with a ?? because I wanted to be sure I gave the right info. Maybe not all docs do this?? Not sure. :unsure:

Fortunately, the treatment was effective, but he also does not have the compromised immune system that we have.

The fact that Suz resumed her gluten-free diet and they appeared sure sounds like it could be gluten-related, but it does not of course, rule out any number of other reasons for the rash. She has a lot going on that is stressing her out, that's for sure.

Maybe the dermatologist has more answers for her.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#98 zus888

 
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Posted 04 January 2012 - 09:58 AM

Yes, the dermatologist said that he has no doubt whatsoever that it is NOT DH, but shingles. And, he would NOT give me medical clearance for any of my procedures. I'm to go back in 2 weeks to hopefully get clearance. New dates for my biopsy and surgery, which doesn't make me happy.
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Suzanna

#99 Gemini

 
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Posted 04 January 2012 - 10:02 AM

The doc took a "scraping" from hub's rash to be sent to the lab when he suspected shingles, but he also gave him the anti-virals right there in the office. And yes, the shingles were very painful.

I used the word biopsy in my previous post with a ?? because I wanted to be sure I gave the right info. Maybe not all docs do this?? Not sure. :unsure:

Fortunately, the treatment was effective, but he also does not have the compromised immune system that we have.

The fact that Suz resumed her gluten-free diet and they appeared sure sounds like it could be gluten-related, but it does not of course, rule out any number of other reasons for the rash. She has a lot going on that is stressing her out, that's for sure.

Maybe the dermatologist has more answers for her.



Hey Irish! :)

I had no idea there was a swab test for shingles! Learn something new everyday! When I had my bout of the damn things back in 2009, I guess it was pretty obvious what I had because the doc immediately said it was shingles, which I knew anyway, and wrote me a script for Acyclovir. It worked very well at knocking down the attack. Maybe when they aren't completely sure, they do the testing?

Shingles does appear when you are run down, for the most part. It can be caused by low thyroid, which can make you anemic, a liver problem or a number of other issues that will cause you to become run down. I didn't realize I was that run down myself but I was. If you are eating gluten when you aren't supposed to be, that will cause your immune system to go into a tailspin and the inflammation can wreak havoc. That is another reason for a shingles outbreak. Shingles should not occur if you are following a strict gluten-free diet, unless you have ongoing medical problems. Mine was a thyroid issue, which led to anemia and BAM!
I was still in the recovery phase of things so my body was reminding me to still take it a bit slow....which I never do.

I am not a fan of dermatologists. I am sure there are good ones but I have seen them make so many mistakes with people, including me. Another set of doctors I don't trust but that's my issue. ;) ER doctors do a better job of diagnosing shingles because they see more of it. People go to the ER when they pop because.....you know....it's damn painful! I am preaching to the choir....you know your stuff! Thanks for pointing out the testing.....good to know but I am really hoping it never happens again. :o
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#100 pricklypear1971

 
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Posted 04 January 2012 - 10:04 AM

Yes, the dermatologist said that he has no doubt whatsoever that it is NOT DH, but shingles. And, he would NOT give me medical clearance for any of my procedures. I'm to go back in 2 weeks to hopefully get clearance. New dates for my biopsy and surgery, which doesn't make me happy.


So did he do a scraping?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#101 IrishHeart

 
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Posted 04 January 2012 - 10:32 AM

So did he do a scraping?



It's only necessary when the doc cannot distinguish it from other rashes.

If both docs say it's shingles, it's probably shingles. :(

We could speculate all day long whether or not resuming the gluten was the catalyst for it, the point is, it's here now.

SUZANNA---With the addition of antivirals--- and I believe you said antibiotics as well??-- into your system--I hope you take some probiotics as well to help out your gut.

Autoimmune diseases run in packs....this thing may have erupted from chronic stress and a compromised system. Reintroducing gluten has not done you any favors, IMHO.

Having to wait a few weeks before procedures is a very good idea. Again, IMHO. Your body is run down apparently and an active virus needs to be treated.

I still do not understand why you are doing this gluten-challenge right now, after being gluten-free for so many months, but like everything else you do in your life, it's your decision.

Rest up & Good luck.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#102 zus888

 
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Posted 04 January 2012 - 10:34 AM

Nope. He was sure of it based on looking at it and hearing my history. I did explain that I have celiac and have been eating gluten and that perhaps that the rash is DH. But he was adamant and completely confident that it is shingles.

On another note, my thyroid is watched closely - every 6 weeks I am tested. I was hyPERthyroid for a little bit, but none of my symptoms were relieved (constantly cold, forgetful to the point of being unable to remember to take my meds which is unusual for me, fatigued).
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Suzanna

#103 pricklypear1971

 
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Posted 04 January 2012 - 10:49 AM

Nope. He was sure of it based on looking at it and hearing my history. I did explain that I have celiac and have been eating gluten and that perhaps that the rash is DH. But he was adamant and completely confident that it is shingles.

On another note, my thyroid is watched closely - every 6 weeks I am tested. I was hyPERthyroid for a little bit, but none of my symptoms were relieved (constantly cold, forgetful to the point of being unable to remember to take my meds which is unusual for me, fatigued).


If you are satisfied with a dx without a scraping, that's up to you.

I would have forced the scraping since so much hinges on the dx (scheduled surgery )and you want further proof of Celiac if applicable.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#104 Gemini

 
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Posted 04 January 2012 - 12:33 PM

If you are satisfied with a dx without a scraping, that's up to you.

I would have forced the scraping since so much hinges on the dx (scheduled surgery )and you want further proof of Celiac if applicable.


You do not need a smear or scraping for the diagnosis of shingles...only if, like IrishHeart said, it's hard to distinguish from other rashes. Shingles only ever appears on one side of the body...not on both sides at once so that's a huge clue. You can also run fevers with it since it is a virus. Other rashes do not usually come with fevers. You cannot have surgery if you have an active rash on your body. It needs to heal. I know it can be annoying to have to wait but you cannot heal well from surgery with a possible virus or something else going on.
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#105 domesticactivist

 
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Posted 04 January 2012 - 01:05 PM

This is VERY interesting. I HAVE decided to get back on the diet, but just not yet. And I am probably going to try to focus on whole foods in general, as opposed to the processed foods. I figure, if I'm going to diet for my health, I might as well go all the way. Processed foods can be something I eat as a treat or on rare occasions, but not as a regular thing. It might be a good time for a life-change. I just have to get to the point where I'm ready to do it.


YES!!! <3
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.




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