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Just A Hello


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13 replies to this topic

#1 Lolli

 
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Posted 09 August 2012 - 11:27 PM

Hi ; )
I just joined.
I'm frustrated and hurting.
I'm surrounded by intelligent, compassionate people who are struggling to understand.
I do not want to talk about such private issues with everyone.
I've been gluten free for almost 5 months. I was diagnosed 4 months ago and am on my third month of dapsone.
I started taking neurontin a year ago, when the rash began. Now I'm taking both. I'm doped up and in pain all the time. Very restricted diet. I want this to end. I had a life.
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#2 bartfull

 
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Posted 10 August 2012 - 08:08 AM

Oh Hon, you still have a life. You are just going through one of the rough patches in that life right now. I'm not an expert on DH, but from what I've read here it can take a couple of years of being gluten-free for all of the antibidies to leave your system. And going low iodine seems to help many if not most. Read as much as you can in the DH section, check out the sticky at the top of the forum for newbies, and ask as many questions as you can think of. There are a lot of very knowledgeable people here who can help you.

In the meantime, feel free to rant or whine or whatever you need to do. I think every one of us here has had at least one whiney thread. I know I made several, and every one was met with compassion and understanding, AND gread advice.

It's going to take time, but it WILL get better. I promise. (((((HUGS)))))
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#3 Lolli

 
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Posted 10 August 2012 - 11:19 AM

Hey!
I can't tell you what a relief it is to find you guyses.
Reading, reading all the same symptoms and solutions I have and have tried.
I have faith.
Just
Such
A
Relief
To
Find
People
Like
Me.
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#4 GottaSki

 
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Posted 10 August 2012 - 11:39 AM

Hi Lolli-

So sorry you are having such a rough time. Just wanted to second what bartfull posted. We have all posted our frustrations a time or two or maybe ten! Feel free to vent - there is always someone popping on that will try to help alleviate frustration or answer questions.

You will improve if you keep at it - try to notice and celebrate any small improvements along the way.

This will get better and you will gain health - unfortunately it can take time.

Hang in there!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 squirmingitch

 
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Posted 10 August 2012 - 04:01 PM

Hi Lolli! And welcome to the board!Posted Image
I have dh too. Feel free to post wherever you like but there is a dh forum too --- it is here:
http://www.celiac.co...-herpetiformis/

it's probably better to post dh questions there.

Otherwise for all other celiac issues then pick the appropriate forum & go for it.

Geez, I think I've posted 2 whiney threads. We get it. Been there, done that.

Tell us Lolli what is going on with you? Where is your pain? How is your dh? What are you eating? Talk to us.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#6 Lolli

 
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Posted 10 August 2012 - 06:25 PM

Firstly, thank you for the warm welcome.
I can't even begin to describe the horror of this last year and a half.
Secondly, I am a very positive, loving, rightly ambitious person. But, this thing is bigger than me. I can't tell what, of the many things going on, is affecting me most right now.
I have always been skinny. I was raised on the Atkins diet, because my father was a heart surgeon. I could eat whatever I wanted, but always made healthy choices from my upbringing.
Because of the unbelievable things that have gone on in the last year and a half, in my personal life, I have allowed myself to grieve and dip into self pity. I normally don't indulge in self pity.
Dec. 2010 my lover emailed me that he had begun an affair with a married woman. She demanded a full std test, so that she wouldnt bring anything home to her husband. He tested positive for 3 things. Oh and that he didn't want to see me anymore. I think I went into shock. I had to see them at church. I stopped going. I coped. I had so much on my plate. It was winter and that has always been hard on me because I had no fat. I was enrolled in classical ballet, to maintain strength and manage my scoliosis. I added 1,000 calories a day, it was a hard winter that year, mostly bread. At the end of the semester, a rash appeared, just above my tail bone. I thought it was heat rash from the leotard and tights and the growing heat in the studio. It got worse.
I thought I had caught something. I did. But, only one.
I began suppressive therapy and excluding stressful people, places. I took algebra over the summer and made A's even doped up like that. My daughter was in a 3 wheeler accident that broke her nose and we basically had a burn victim on our hands. I stepped back from any kind of public life, then.
By fall, no improvement. I stopped suppressive therapy because I knew I couldn't function with a full course load and live in general, like that. By now, 10 of my friends had died from overdoses, drinking, age. I am a recovered alcoholic. I removed myself from AA. The grief inside my home group was tearing it apart. I still work with my sponsors and sponsees. Fast forward to spring this year.
I was on the back porch, barely able to do what I needed to do. Trying to cut myself some slack after so much. By then 20+ friends gone.
I sat. I thought,"where is the girl (I'm 46) that used to be at work at 7:30?! Lifting 155 lbs of hurricane tarps?
This is not normal for me, for anyone.
My mother suggested I look into celiac.
And there it was. There it ALL was. I started gluten free.
It had previously taken 5 years to gain five pounds. I thought I was just high metabolism. Doing too much. Dancing to much. Gluten free, I gained 20 pounds in less than three months. I brought everything to my doctor. Originally, I wasn't going to take dapsone, but after no relief from gluten free, I was willing to try anything. She agreed.
In April I was SO hungry. Eating twigs and berries. I went fully gluten free. Raw. Hard. I read, I learned, I applied, I screwed up. I guess I'm just chock full of antibodies. I've read that production can go up after gluten free, for some reason. And about cc, iodine, and foods whose molecules are shaped similar to gluten and the villi freaks out.
I work, volunteer, and study emergency management and business administration.
I'm not giving up. There is good in the world and good to do.
;D
<3
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#7 Lolli

 
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Posted 10 August 2012 - 06:33 PM

Oh and
I went down to rice, cucumber, and pear. This week I added banana.
I had the opportunity to deploy nationally, this summer, but I declined due to obvious health reasons.
I bought and packed gluten free food, just in case. It's been a very busy year in my field. I switched my prescriptions to Walgreens and keep my eye on my blood test dates.
As it is now, it would be very difficult to go into a downed infrastructure and remain well.
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#8 Lolli

 
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Posted 10 August 2012 - 06:35 PM

And maybe, just maybe, my story will help somebody else.
<3
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#9 gatita

 
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Posted 13 August 2012 - 10:10 AM

And maybe, just maybe, my story will help somebody else.
<3


It does! I'm new here but just wanted to say Lolli, you're also a very good writer! ;)
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Diagnosed with wheat hates me 4/13


#10 Gemme

 
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Posted 23 August 2012 - 03:53 PM

Posted ImageIt was same in my case little plus minus , being gluten freefor 6 months it is much better , life is back , I can see/feel the colors inlife again . We should feel lucky we know the problem , my Grand father died ofit without knowing what was wrong with him .

This will get better and you will gain health- unfortunately it can take time. They say "Knowing is not enough; we mustapply. Willing is not enough; we must do".

Good Luck .
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#11 Lolli

 
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Posted 02 September 2012 - 08:15 PM

You all have been just great!
I read a bunch of stuff and applied it.
I had my first itchless night, in six years last week.
My food list has gotten tiny, tiny, but the symptoms are subsiding.
I can hardly believe it.
I haven't been glutened in about 4 weeks.
My bloating has diminished and I no longer feel like I'm being disemboweled.
Now, I just need to keep this up and slowly test individual foods.
Not really ready to test anything. Ouch.
I'm gonna keep coming back to learn!
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#12 squirmingitch

 
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Posted 03 September 2012 - 03:27 PM

Atta girl Lolli! Just take it nice & easy. Feels great not to itch doesn't it? So keep up the good work & just enjoy feeling better even if your food list is small right now. It will grow.Posted Image
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#13 Making__A_Change

 
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Posted 09 September 2012 - 12:59 PM

Hi Lolli. I am going to keep coming back to learn all this awesome info myself. Keep your chin up...I believe there is help for us ALL!
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#14 NightOwl

 
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Posted 12 September 2012 - 11:43 AM

Hi ; )
I just joined.
I'm frustrated and hurting.
I'm surrounded by intelligent, compassionate people who are struggling to understand.
I do not want to talk about such private issues with everyone.
I've been gluten free for almost 5 months. I was diagnosed 4 months ago and am on my third month of dapsone.
I started taking neurontin a year ago, when the rash began. Now I'm taking both. I'm doped up and in pain all the time. Very restricted diet. I want this to end. I had a life.


Hi, I'm kind of new here but I want to welcome you too and tell you that I totally understand your frustration, this is a hard thing to accept!

I'd joined here several years ago but at the time wasn't sure I "belonged" here as I've never been officially diagnosed; also the forum didn't seem too active so I eventually forgot to come back. Through those years I kept eating wheat/gluten periodically. When things caught up with me in some way, I'd stop for a few months but eventually fell into temptation again. It was also amazing how I'd "forget" things I'd read before and how I could not see the connection between my worsening health and the pattern I'd created.

It took a rough wake-up call last Spring for me to come to terms with my "gluten sensitivity" very possible celiac. It came in the form of a thyroiditis attack (2nd since last year...) accompanied by the panic attacks from hell, intermittent diarrhea, queasiness and pain in the liver area, nearly paralizing fatigue and depression all of which interfered with my sleep. The puzzling thing was that all that happened about 2 months after I'd cleaned up my diet again (but I learned here that some people go through a period of "detox"). Also, during my so-called gluten-free period I'd cheated a little a couple of times by having cheesecake with cookie crust, at the time I thought it was more of a "wheat allergy" so I'd pop an antihistamine and avoid the worsening of my chronic nasal congestion (my only most obvious and immediate symptom) and thought that was the worst of it.

But I forgot about my thyroid... I'd read many years ago that antibodies from gluten would attack it, so I've had a few thyroiditis attacks, during those my throat area gets swollen so I can't lie on my side when I sleep or I choke, and the symptoms that go with it are like being hyperthyroid, not fun at all. And I also "forgot" that last year eating wheat had begun to give me loose bowel movements (and I was always constipated...) and awful abdominal cramps.

But I also read that such antibodies can be lowered by taking vit. B12 and selenium, so I made a point to try to take those supplements as regularly as I could remember, which sometimes I just didn't, but on the whole I think that kept me from things getting much worse. So perhaps you could give that a try. I'll try to find the article I read about it (if it's still available online) so I can give you the link, who knows, perhaps that might help shorten/speed up your recovery period. ;)

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