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Simone52

Member Since 22 Jul 2013
Offline Last Active Sep 07 2013 10:03 AM
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#885633 Dh And Medication

Posted by Simone52 on 24 August 2013 - 03:41 PM

 

Welcome to the board!

First, your rash is not going to go away overnight or in a week..... it takes time. You need to make sure your kitchen & everything you put in your mouth is totally gluten free (gluten-free). DH is sensitive to the tiniest amount of gluten. And you need to make sure all your meds both prescription & OTC are gluten-free. NSAID's aggravate the rash. Iodine intake can be a factor --- most of us find it makes the rash go crazy. Steroids will calm the rash but the second you stop them the rash will make you pay in spades by coming back w/ a vengeance! 

 

First, get your home & food in order. See:

Newbie 101 for celiacs
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
And read lots & lots of threads here on the dh forum. Then you will begin to understand what you're up against.

 

Hi Brookiebaby!  

 

Sorry you have joined the world of Celiac.  Not a fun club.  But a glute-free diet is going to make you feel new again.  Some of us are more sensitive to gluten than others.  Some of us cannot lick an envelope.  Some of us can.  It will take some time for you to sort out what you can and cannot do/eat/use/take.  

 

I assume that since you are newly diagnosed, you have had some serious symptoms.  Usually digestion.  Rapid transit. And pain.  And malabsorption. If you are lucky, you have caught it early enough that there may not be permanent damage.  I was diagnosed at age 40.  The secondary problems are many.  But more about me later!

 

Tell me (us) about you.  How old are you? (approximate is fine!)  How long have you been exhibiting symptoms?  Absolutely miserable or: kind of yucky or:  this and that weird symptom or:  almost incapacitated for years.  This evil disease can take many forms.  The exciting and great news is that you can recover.  In many cases 100%!

 

Do not for a moment think that the symptoms (evil demons :ph34r: ) will go away after a few days or even weeks or months.  It will take some time.  It has been wreaking havoc on you and your body for a long time.  Be patient.  Do not for moment think either that you can change your diet a little.  Or just modify. Or just reduce.  Or eat something on a special occasion.  Or just on the weekend.  This is serious business and if you want this rash and any other symptom to go away you have to get every speck of gluten out of your house!  Stay away from restaurants for a while if you can.  Things are much easier these days and restaurants are certainly more aware but the more thoroughly you can eliminate any possible trace of this stuff the faster and easier will be your recovery.  

 

Again, there are many silver linings.  There are intestinal diseases that cannot be controlled with diet.  This can be.

 

The rash sucks.  Period.  It is insidious, crafty, mean and determined.  Many of us have been playing around with it for years.  Some things work for one, not for another.  It will be a guessing game for you for a while.  It could leave you in two weeks or hang around for two years.  There are many wonderful suggestions on this Board for itch relief and pain control.  Again, what works for me may not for you.  We are all unique. 

 

As for medications.  Most can be researched on-line.  Trazadone is used for sleep issues and depression.  There are alternatives for both if you are not happy with it.  But I can definitely tell you that there is no way that two days of a gluten-free diet will tell you anything yet.  Don't get discouraged.  Be diligent. I would love to hear your progress.  Even day by day.  Keep in mind that you will not just regulate your diet.  You will completely change it.  (you will love the results)!

 

YOU ARE NOT ALONE!!  There are so many here that will hold your hand (itchy as it is!) and walk you through each of your fears, experiences, questions, discouragements and victories!

 

Stay tuned......

 

Be well....

 

Simone :P  


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#883194 Dh? What Do You Guys Think?

Posted by Simone52 on 06 August 2013 - 01:11 PM

Right now more than ever I am so thankful we HOMESCHOOL!  I don't have to worry about what they might get at school ;)  I have been considering just going gluten free and assuming that I likely have Celiac disease.  I of course would have everyone else in the house gluten free as well...hard enough to cook for 12 people without making separate meals!  Plus so many of them seemed to react to going back on gluten...  I also have a child (13) with autism and an almost 3 year old who is rather...quirky... so, with each passing day I am more convinced there is a gluten issue in our home and that it needs to go!  Thanks so much again for your help and encouragement.  My hubby doesn't seem to think I have celiac.  I told him to read up on it and then get back to me :P

I'm going to agree with Squirmingitch.  I would say your entire family is, at the very least, gluten-intolerant.  Celiac is not all that uncommon.  The general thought way back when I was a child was that it was too rare to even be considered.  There was an Italian doctor in the 70's ( I can't remember his name offhand)who had a wife and child with Celiac and wondered why it was so rare in the U.S.  He thought that if he could find out, he could help the Celiac patients he had in Europe. He was given a grant to come here and research to find that reason.  What he discovered was that it wasn't rare at all and that, in fact, it was more common than the IBS and lactose intolerance that all of us had been misdiagnosed with for so many years.  

 

Does your husband have a medical degree?  He certainly does need to read up on it.  And this site would be the perfect place to start.

 

With ten kids (God bless you!) and all of the symptoms you are describing within your family, it couldn't hurt to get rid of all the evil gluten and see if you don't all improve.  As I said before, it is much easier these days.  Does not need to be expensive and in fact, is just pain healthier no matter what the case.  There are some great rice pastas out there as well as bakery goods for the kids.  

 

Think of this as an adventure.  Truly, it has become almost trendy so going gluten-free is not as daunting as you might think.

 

I followed Squirmy's advice and opened the second post and the pictures opened.  You sure have SOMETHING!!  Really, try the gluten-free diet and keep in touch.  There's a lot of guidance on this site as well as in the general public.

 

I'm curious to know how your colon perforated.  That sounds awful.  

 

Stay in touch.


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#882953 I Have So Many Questions

Posted by Simone52 on 05 August 2013 - 05:31 AM

I use Vanicream - the thick version. If I'm not mistaken, some Cetaphil contains gluten. My favorite moisturizers were Vanicream and Vaseline. Neither I would have touched with a ten foot pole prior to The Damn Rash, but most natural lotions or oils seemed to either contain gluten or make my rash burn. So there ya go.

I eat everything except gluten. It probably took about 5 months to fully reintegrate all iodine foods without freaking out and counting how many high iodine servings I had in one day.

Btw, I do recommend a crutch. A food crutch. I don't know when I started eating junior mints, but I do know they didn't cause an iodine rash flare. Is semi sweet chocolate on the list? I can't remember...whatever. Find a crutch. Use it. Eat the crap out of it and don't look back.

I never had a problem with milk, even without screening for iodine. Maybe I got lucky? Do be careful about sour creams, cream cheese, etc. - screen for CARAGEENAN. Guar him, locust gum ok. CARAGEENAN , no! CARAGEENAN is seaweed. Yeah.

I starred eating whole eggs every few days after the first month (that included baked goods). It helped to not feel deprived. But I had to decide what to eat as my iodine serving that day: eggs, potatoes, etc.

Eggs drove me nuts because of baking. I grew to hate egg whites, and baking with egg whites...yuck. I make ice cream without eggs, but gelato was out (obviously I'm addicted to dairy).

My one big bad flare was thanksgiving, btw. That was about 2 months into li. I somehow put together the most iodine rich menu conceivable then proceeded to eat it two days in a row. Yeah. Breakout. Luckily it was very mild - antibodies had fallen and I knew (unfortunately) to restrict iodine to put it out. Yeah, all of those leftovers staring at me. Ugh.

Just go slow and take notes about which foods make you flare or itch.

Hi All

 

I'm going to jump in here and offer my two cents worth.

 

Re lotions and creams:  I love Medline's Remedy Skin Repair Cream.  I found it when my mom was in hospice.

Made with Olivamine.  And the first ingredient is NOT water!  For itch I like Derma-e.  I am trying to stick to 

as many natural products as possible.  Those which I find help are: apple cider vinegar.  Saturate a cotton ball

and apply where needed.  I also use Emu Oil, Gator oil and of course pure coconut oil which I slather on after a shower.

Dr. Mercola (who is one of the original anti-wheat, gluten docs) has an organic, gluten-free, fragrance-free moisturizer.  Also good.  

You can go to his site on-line or try Amazon.

 

I am with you about the hot showers.  I have done the same when my back is covered and I just can't stand it.

It hurts so good!  

 

The Cetafil doesn't do much for me.

 

If you are going Paleo (I pretty much follow that diet with a few low-iodine tweaks) the "Practical Paleo" by Diane Sanfillippo has an entire section on auto-immune diets.

 

And although I am new to this site, I have been gluten-free since around 1990.  It took a little while, but I honestly

thought I was the first person to stand and cheer after my first  normal stool.  I know, a little TMI but that's what I 

am here for.  No one else I could ever share that with.  IBS gone.  I agree that the misdiagnosis of IBS is what

kept so many of enslaved to the tortures of Celiac.  IBS is a symptom. You are going to feel so much better in

all areas of your life.  Hair, skin, nails, teeth.  Hopefully, there hasn't been too much damage done by this demon.

 

For some reason I have this rash now.   I was either CC'd, glutenized, or it's not DH or I am simply a delicate hot-house flower!

 

I have found Pricklypear and Squirmingitch to be my new best friends.  SO helpful. And I understand your frustration.  Sometimes I get so tired of thinking about myself and my body. It can get to be an obsession. 

 

I have another question.  Has anyone tried UVB light treatment?  I know that heat is aggravating.  Particularly when accompanied with sweat.  So getting hot is not fun.  But a tanning bed is used for people with eczema and psoriasis and other skin issues.  Has anyone tried it for DH?  I have looked into it and I know they have beds that are specific to skin issues.  More filters, etc. Fans running the whole time to keep cool. One place I checked out said that 50% of their clients are there for skin problems.  Now I know that over exposure is a big no-no.  And I have the palest of skin.  Scandinavian descent, blond, never tan blah-blah-blah.  But they told me that the eczema people stay in the beds for no longer than 4-5 minutes and seems to work well.  I'd rather try that than the Dapsone.  Has anyone else tried this?

 

Thanks again to everyone involved on this site.

 

xoxoxo


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