Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

I Had Hoped To Never Return To This Place


  • Please log in to reply
106 replies to this topic

#61 Kimbalou

Kimbalou

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 177 posts

Posted 03 January 2012 - 12:35 PM

Hi. First of all, I want to say that I think it's good that you told us how you are feeling. In my opinion, you really need to get some psychological help. It isn't normal for you to feel suicidal. Suicide is a permanent end! I am not sure about the details of your liver diagnosis, but I know about Celiac because I have it. I understand how you feel. It must have been hard because you said you didn't really have any symptoms of Celiac while eating gluten. I have BAD diarrhea, foggy head, lethargy and depression/anxiety...so when I eat gluten-free I feel BETTER. So, that's why the diet is worth it to me. I look at it as a way to feel better. I've been on the diet a little over a year and it works for me. I do get angry at ignorant people who don't understand the diet or Celiac, but I have never felt suicidal over it. That is why I am concerned for you. PLEASE talk to someone. There are Celiac support groups out there too.

Hugs to you,

Kim
  • 0
11/19/10 diagnosed with Celiac disease after positive blood test
12/14/10 Biopsy positive for Celiac disease

Celiac.com Sponsor:

#62 pricklypear1971

pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts

Posted 03 January 2012 - 12:36 PM

There was no biopsy taken, but these don't itch. They just aren't healing normally. They aren't oozing or anything, but if it were a normal scab, they'd be done and over with by now. Instead, they are still there. They hurt more than itch. And, it's not the skin that hurts. It's a deep hurt, like a bruise or something. Like someone hit me in the rib with a small rubber hammer. I figured they were bug bites since they don't have a rash-like appearance at all. There's just 4 little groups (one on my back, one on my flank, one on the abdomen, and one just under my breast - all only on the left side). Honestly, if you looked at it, you would not think rash either. You'd think a few ants had their way with me.


Well, given your autoimmune history you're a likely candidate for either one. Did they develop while you were gluten-free or pop up after?

I'd ask the doctor to take a scraping. Let's put it this way, if you want another confirmation of Celiac this may be your chance. If the test is positive for shingles you'll know it's shingles. If its negative, then ask for a DH biopsy. If its positive then you have your Celiac confirmation (if it's negative it doesn't mean you aren't, though).

Some of my spots really hurt after they've been there a while, deep down and achey; however there's usually itching at some point. I have spots that never blister, just get red and those don't itch. Old spots will form a long-living scab that rarely itches. New spots are fierce.
  • 0
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!

#63 Fiddle-Faddle

Fiddle-Faddle

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,159 posts

Posted 03 January 2012 - 12:43 PM

It actually doesn't make a whole lot of difference if it's shingles or DH.

Either way, gluten is setting off an autoimmune reaction.

If it really is shingles, antivirals will help.

Shingles tend to be terribly and unrelentingly painful, with some itch as well; DH tends to be unbearably and unrelentingly itchy, with just a bit of pain. I've had them both, and the blisters look practically identical.

Shingles follow one nerve pathway, exactly. DH is usually perfectly symmetrical.

Taking a supplement of L-Lysine will help inactivate the herpes virus (shingles is herpes zoster, the same virus as chicken pox). That's actually how veterinarians treat animals with herpes infections.

HOWEVER, if you are eating gluten, you won't absorb the L-Lysine, antivirals or pretty much any other medication they give you. You are also not absorbing nutrients from your food, or your multivitamins (if you take any).

I don't mean to sound harsh. I have been where you are (as have most of us here), and I know how very, very tough it is for you right now, both physically and emotionally.

But you seem to be out of choices. L-lysine won't help DH. The only thing that cures DH is to go off gluten. The only way you can absorb meds for shingles is to go off gluten.

WE CAN HELP YOU THROUGH THIS. YOU ARE NOT ALONE.

If there's some kind of food you can't bear to give up--tell us what it is, and you'll be bombarded by different recipes for it. There are gluten-free flour mixes out there that can be subbed cup-for-cup for regular flour in whatever recipe you want--with very, very little difference in flavor or texture.

The only thing you will be giving up (besides for your illness) is a little convenience--and gluten-free is becoming more and more convenient every day.

Can you look your children in the eye, and tell them that the convenience of gluten foods is more important to you than being alive for them 10 years from now? For most of us, the mortality rate associated with celiac is this vague chance that is somewhat higher than the mortality rate for "normal" people. We have a higher chance of developing stomach cancer, lymphoma, and diseases like MS and lupus. For you, it's a heckuva lot more immediate. You have already crossed over into fatal disease territory. You have Primary Sclerosing Cholangitis, which is associated with celiac disease, and is apparently cured by a gluten-free diet. You're really going to choose gluten foods and a liver translplant over a cheap, easy lifelong cure? You're really going to put your children in the position of wondering if someone has to die to donate a liver to their mother? And to wonder if she'll then survive the surgery?

Come on.

One more point--are you aware that for susceptible individuals (like you, me, and everyone else here), GLUTEN HAS AN OPOID EFFECT ON THE BRAIN? Gluten is literally addictive.

Just so you know I'm not making this up, here:
http://fondation-mal...76fcea35bdf.pdf
http://en.wikipedia....luten_exorphine
http://www.greatplai...eng/peptide.asp
"The peptides from gluten and casein can react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine. These compounds, called neuropeptides, have been shown to react with areas of the brain's temporal lobes that are involved in speech and auditory integration. Neuropeptides also decrease the ability to feel pain and effect cognitive function."

Can you see that the gluten you've been eating might be clouding your ability to think straight here about gluten, just the way someone on heroin cannot conceive of giving up heroin?

Hang in there, let us know how we can help you, and please keep us posted, okay? And think about what I've posted. Every time you look in your children's eyes.
  • 1

#64 Fiddle-Faddle

Fiddle-Faddle

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,159 posts

Posted 03 January 2012 - 12:51 PM

.....aaaaaand now, the doc says those painful "bites" along my bra line are not bites at all, but SHINGLES. WTF? I'm more stressed about all of this than I realized. It upsets me more that I'll probably have to put off the biopsy and also possibly the hysterectomy that I had scheduled for this month. Freakin' A.


Hysterectomy?

You might not NEED a hysterectomy if you go off gluten.

http://celiacdisease...dometriosis.htm

http://www.celiac.co...erine-fibroids/
  • 0

#65 notme!

notme!

    Advanced Community Member

  • Moderators
  • PipPipPipPipPipPip
  • 1,976 posts

Posted 03 January 2012 - 12:56 PM

suz - the fact that you are here speaks volumes. and maybe staying gluten free will clear up your liver problem - many of us have had a ton of other 'unrelated' symptoms go away by just eating the right stuff. f**k that dinner roll.....!
  • 1

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#66 Kimbalou

Kimbalou

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 177 posts

Posted 03 January 2012 - 12:58 PM

Hysterectomy on top of all of this? Is that really necessary?
  • 0
11/19/10 diagnosed with Celiac disease after positive blood test
12/14/10 Biopsy positive for Celiac disease

#67 love2travel

love2travel

    Čeznem da se u Hrvatskoj!

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,831 posts

Posted 03 January 2012 - 01:16 PM

I've been away for a few days so have joined this a bit late. It is difficult to add anything to the advice you have already been given. You and I went gluten free at nearly the same time. I, too, do not feel any different or better and in the back of my brain occasionally wonder whether my diagnosis was correct. Although I do not feel ill at all from eating gluten (I should say that in the past tense!) I fear what else could be going on inside my body and that alone keeps me from cheating. My future is too important to me to disrespect myself by doing harm to my body. Your precious kids and husband need you badly to be at your happiest and healthiest. I do empathize with your having to deal with many other health issues as well - it truly is tough and seems unfair. But it is how you react to situations and what you make of them. I am speaking from experience! :) Believe me, I am not belitting your health issues at all. Just pointing out the hard truth that I learned lessons from.

For the first two months after my diagnosis, I thought I was sentenced to life in prison without parole. Now, however, I feel the opposite - I was given another chance at life! :D

I rarely even think about celiac except when I come here and when going out which I do not do much because admittedly that can be tough. Sure, I have to think of every morsel that goes into my mouth but it is a habit and part of my daily life. There is no such thing as unsafe food in my house. Why set yourself up for temptation and fall? I also found the more I thought about my health the worse it became. The stress created more physical pain, too.

This has a hold on you and a desperate control over you. Imagine how liberating it would feel for you to control it! As everyone has heard umpteen times I have had desperate chronic pain for four years and for the first years it definitely controlled me - what I planned, what I did or did not do, and so on. Those two years are forever gone and I cannot get them back. Though I still have unrelenting pain I live my life the best that I can. The change in my attitude really made a huge difference and I grew in leaps and bounds. I am very in tune with my body and listen to what it tells me. Each day I think of at least one thing to do that I love, even if I must lie down I will read and enjoy it. If you have little goals like that they eventually grow into bigger goals and before you know it, your health is under your control in a way. It is amazing what a person can do if you truly want to do it. Each day I am thankful for another chance at making mine and others' lives better. You know what else helps? Getting the focus OFF your health and onto something else. You have a busy life, I know, but do you perhaps have time to volunteer once a week at a nursing home or shelter? I find that sort of thing really puts things into proper perspective.

Although I suffer from intense unrelenting pain I would not trade my life for anyone else's. Each day I find joy even if it fleeting at times. You can, too. There is always hope. ALWAYS. :)
  • 1
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#68 deltron80

deltron80

    Community Member

  • Advanced Members
  • PipPipPip
  • 58 posts

Posted 03 January 2012 - 01:18 PM

Isn't it possible that Celiac is causing your depression, anxiety, and other psychological difficulties?

They say those symptoms can take a year or two to go away after going gluten-free. It might be worth a shot to get off the prozac. You might feel better if you give it a chance...or not.

Recognize wheat for what it is...a mind-altering, genetically modified, pseudo-food that at the end of the day is basically a drug that gives calories. No wonder you're having trouble! Go read Wheat Belly if you need inspiration.
  • 0

#69 Fiddle-Faddle

Fiddle-Faddle

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 4,159 posts

Posted 03 January 2012 - 02:08 PM

It might be worth a shot to get off the prozac. You might feel better if you give it a chance...or not.



Prozac is VERY dangerous stuff. PLEASE don't stop taking it cold turkey! You should wean off very, very slowly, under the care of a doctor.

http://www.rense.com/general/pro.htm
"Often there is the terrible withdrawal associated with the SSRIs. Unless patients are warned to come very slowly off these drugs by shaving minuscule amounts off their pills each day, as opposed to cutting them in half or taking a pill every other day, they can go into terrible withdrawal which is generally delayed several months. This withdrawal includes bouts of overwhelming depression, terrible insomnia and fatigue, and can include life-threatening physical effects, psychosis, or violent outbursts."

There are some support forums for people undergoing Prozac withdrawal:
http://www.topix.com...4OF26VN51VTP1FK
http://www.depressio...f-it-too-quick/
http://www.depressio...ant-withdrawal/
http://www.depressio...zac-withdrawal/
http://www.depressio...al-help-please/

You probably don't want to read the info I found showing that the manufacturer lied about Prozac's benefits/risks before getting it approved...
  • 1

#70 IrishHeart

IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,480 posts

Posted 03 January 2012 - 02:11 PM

There was no biopsy taken, but these don't itch. They just aren't healing normally. They aren't oozing or anything, but if it were a normal scab, they'd be done and over with by now. Instead, they are still there. They hurt more than itch. And, it's not the skin that hurts. It's a deep hurt, like a bruise or something. Like someone hit me in the rib with a small rubber hammer. I figured they were bug bites since they don't have a rash-like appearance at all. There's just 4 little groups (one on my back, one on my flank, one on the abdomen, and one just under my breast - all only on the left side). Honestly, if you looked at it, you would not think rash either. You'd think a few ants had their way with me.



And WHEN exactly did they appear, hon? After you resumed gluten??

This is why I am suspicious, that's all.

Okay, now everybody will want to weigh in on all the other issues you have raised and it will get overwhelming for you again. So, let's take one step at a time.

IMHO--. If the hysterectomy is scheduled because of something life-threatening, that's one thing.... but it is an INVASIVE surgery that will require a prolonged recovery and wreaks havoc with your hormones and because of where it is, causes pelvic floor pain. Believe me, I know. <_<

So, what I am suggesting is you take one step at a time.... because between the gluten challenge you have yourself on, the liver disease, the depression and a surgery, too? well, honey, you need to be in good physical condition.

If it IS herpes zoster (shingles), you have a VIRUS--and your doctor should be TREATING it. Shingles is very serious. My husband had a bout with it. It is VERY painful.

WHAT did he say it was??
  • 0

"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


#71 zus888

zus888

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 216 posts

Posted 03 January 2012 - 03:02 PM

Ok. I've been off the prozac for at least a month now. It just wasn't providing any benefit and, in fact, made things worse. I feel SO MUCH better off of it.

The hysterectomy (and this will be TMI) is due to several issues: heavy bleeding to the point of ruining clothes and sheets every month; cramps; uterine, colon, AND bladder prolapse; and the possibility of something being off because of a fishy finding on pelvic ultrasound. I'm SUPPOSED to get a hysteroscopy D&C (to rule out cancer and hyperplasia via biopsy) THIS Thursday. If that is postponed, I might have to postpone the surgery because what they do is dependent on the biopsy results. So we need the results prior to surgery, which will be laproscopic barring any complications. Technically, I probably *could* put off the surgery for another year. And that *might* be a consideration if I didn't have my liver to consider. Although I am stable and have been for 4 years, this disease is unpredictable. So, there's no telling that I'll be in better shape in one year. All I have, for sure, is now. And I'm in the best shape I've ever been in my whole life. If I put it off, I'm taking a chance that my liver disease will progress to the point of being unable to undergo an elective surgery like that. The recovery period will be 3 months and then I can slowly start adding in my normal routine (which includes running). And I have hopes to run a 5K Zombie run on Sept 1st. Additionally, I'm sick of being down for a week each month in the summer and telling my kids I cannot take them to the pool for an entire week.

As far as the other stuff, the studies I read about PSC (the liver disease I have) have demonstrated that there is no effect on the disease regarding the diet. And, I have to say that none of my blood values have been affected by the diet. Well, except for the IgG gliadin. My Sedrate (chronic inflammation) is still high, as are other inflammation markers. My abdominal lymphnodes are still just as inflamed as they were pre-diet. The diet has had no effect on anything except my IgG gliadin and my villi. That is it. I have so many docs and so many tests to monitor all the crap I have. On the other hand, I am quite lucky in that over the last 4 years, I have remained stable. Although nothing has really improved, nothing has gotten worse either.

Even this rash is mild. There may be a total of 10-15 bumps that are spaced in groups of 4 or 5. The doc mainly asked about my symptoms. She does know that I'm off the diet. And, this rash started on the 29th, I believe. I went off the diet on the 23rd. I did mention to her about the DH, but she didn't think it was that, and I'm assuming that was not only due to the presentation but also due to the symptoms (pain versus itching).

Hopefully, that answers some questions. ;)
  • 0
Suzanna

#72 zus888

zus888

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 216 posts

Posted 03 January 2012 - 03:04 PM

Oh, and I got an antiviral (even though it is a bit late in the game to take it, my doc thought it would still be in my best interest to do it anyway) and an antibiotic (because one of the areas looks like it's getting infected).
  • 0
Suzanna

#73 pricklypear1971

pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts

Posted 03 January 2012 - 03:10 PM

I would insist on having that rash biopsied since it came after you got back on gluten.

In the beginning, my DH was not that itchy. And it made me sore. They were just weird spots under my arms. Before that they were itchy welts between my breasts and around my bra line. I have NEVER had the same opinion from two doctors who have seen them, and none of them though it was DH when LOOKING AT THEM. But they ACT like DH - come with gluten and iodine. Leave when those things go away.

If the shingles dx matters re:any of your impending procedures and treatments get them biopsied to ensure that's what it is. That's just the medically prudent decision.
  • 0
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!

#74 pricklypear1971

pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts

Posted 03 January 2012 - 03:13 PM

Oh, and I got an antiviral (even though it is a bit late in the game to take it, my doc thought it would still be in my best interest to do it anyway) and an antibiotic (because one of the areas looks like it's getting infected).


I was prescribed antibiotics for my "skin infection" also....

Funny, I was allergic to the antibiotics and the "infection" went away when I reduced iodine....
  • 0
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!

#75 zus888

zus888

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 216 posts

Posted 03 January 2012 - 04:35 PM

I'll see if the dermatologist can fit me in tomorrow. How long does it take for the results? My D&C is scheduled for Thursday.
  • 0
Suzanna


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: