Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Another Newbie With Questions And 2 Glasses Of Wine


  • Please log in to reply

33 replies to this topic

#16 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,340 posts
 

Posted 11 December 2013 - 06:18 PM

Ahhhhhhh, the Advil will get you & not just b/c it's sals. You might try Claritin or Benadryl or any antihistamine (gluten-free of course) & see if it helps with your itch.

 

The bottom line is that dh can take a long time to get to the point where you know you're getting better. Like baby steps in super slow motion. You never know when you might start getting side effects from Dapsone if you go back to it & 1 of the side effects is an ITCHY RASH.

 

((((((((((((HUGS))))))))))))))))))


  • 0

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.

 


Celiac.com Sponsor:

#17 Blaze422

 
Blaze422

    Community Member

  • Advanced Members
  • PipPipPip
  • 36 posts
 

Posted 12 December 2013 - 10:49 AM

Last question....for now..LOL...when treating my rash as eczema ....i was told about the critical need to use lots of moisturizers .
I was wondering if that is also true for DH . I almost feel that some of the bumps would go away if they had a chance to dry out.
  • 0

#18 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 12 December 2013 - 11:18 AM

Last question....for now..LOL...when treating my rash as eczema ....i was told about the critical need to use lots of moisturizers .
I was wondering if that is also true for DH . I almost feel that some of the bumps would go away if they had a chance to dry out.


I found I needed to keep mine well moisturized. If they dried out, they'd crack and bleed. That said, my rash created a blanket effect...and individual sores may vary.

I used Vanicream and Vaseline. I also packed clean washcloths under my arms at night during the weeping hours (my blisters would swell and pop nightly), then pack ice packs on them after the weeping stopped.

I remember vodka and tequila helping, too. In a glass, in my hand, down the gullet. Slow breathing and meditation worked, mostly after the vodka.
  • 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!

#19 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,340 posts
 

Posted 12 December 2013 - 11:50 AM

I have found that for me, it's been a case of be like a sapling & bend with the wind. At times it has been imperative to moisturize like crazy & then I get to points where moisturizing seems to make it worse --- bring up blisters rather than just bumps --- so I do what seems to work best at different stages of the game. For a long time it would have been insane for me to soak in a hot tub of Epsom Salts but I got to a point where that was about the only thing that did good. So I say, be willing to go with the flow.


  • 0

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.

 


#20 Blaze422

 
Blaze422

    Community Member

  • Advanced Members
  • PipPipPip
  • 36 posts
 

Posted 12 December 2013 - 12:55 PM

I almost feel embarrassed complaining about my rashes or itchiness when I read testimonials like the 2 of you.  I'm inferring from your answers that moisturizing or not isn't a factor in the healing?

 

And here I go on another confession:

My wife is a student of alternative medicine and should have earned her PhD if time on the internet counted towards the title. She wants to heal my gut. 

Probiotics

MSM

Black Seed Oil

Apple Cider Vinegar

Barley's Greens

Zinc

Vitamin D3 and K

Coconut oil for cooking and moisturizing

Bleach baths

 

I see that the oils are High Sal and Apple cider vinegar is High Sulfite.   I haven't read every page on this forum, but have posters discussed the above?  Do you have an opinion on alternate therapy and healing the gut?


  • 0

#21 ItchyAbby

 
ItchyAbby

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 176 posts
 

Posted 12 December 2013 - 02:47 PM

I almost feel embarrassed complaining about my rashes or itchiness when I read testimonials like the 2 of you.  I'm inferring from your answers that moisturizing or not isn't a factor in the healing?

 

And here I go on another confession:

My wife is a student of alternative medicine and should have earned her PhD if time on the internet counted towards the title. She wants to heal my gut. 

Probiotics

MSM

Black Seed Oil

Apple Cider Vinegar

Barley's Greens

Zinc

Vitamin D3 and K

Coconut oil for cooking and moisturizing

Bleach baths

 

I see that the oils are High Sal and Apple cider vinegar is High Sulfite.   I haven't read every page on this forum, but have posters discussed the above?  Do you have an opinion on alternate therapy and healing the gut?

- Probiotics are good. What kind are you taking?

- MSM - I would suggest drinking bone broth instead. It has MSM in it, in addition to a whole bunch of other stuff - minerals, collagen, etc. It has the added benefit of being food. I firmly believe that anyone trying to heal their gut should be drinking bone broth daily. Use marrow bones and/or chicken feet so you get lots of gelatin.

- I am not familiar with black seed oil, though I have used the seeds (Nigella) in cooking. Looks like it might have some antihistamine properties. Also looks like an immune booster - I am not sure if that is a good thing if we have AutoImmune disorders. Maybe someone else knows?

- ACV is general good stuff but possibly not in this case. I have recently noticed histamines may be an issue for my rash and so I cut out vinegar for a while. You may just have to experiment

- Barley Green supplement is made from barley grass. It says that it is gluten free. I probably wouldn't take it though. I prefer to just eat tons of veggies and fruits.

- I've been reading that zinc is important for skin. I think it's a good thing to be taking. What's you dosage?

- Vitamins D3 and K are essential. Again, what's your dosage?

- Coconut oil is awesome. I eat a few tablespoons each day. It is an excellent moisturizer!

- Bleach baths. Eeek! But that's me. I prefer epsom baths. I also grease myself up with olive oil before stepping into the bath so I don't get too dried out. I only started doing this in the last month or two. Before that baths were too uncomfortable (when I had weeping blisters and the rash was really hot and angry)

 

Also, are you sure that all your supplements are high quality and gluten free? (Sorry if you answered this already)

 

Anyway, these are just my opinions and observations. I highly recommend keep a daily diary that includes food intake, rash notes and other physical symptoms, activity log and mood/sleep notes. It seem like a lot of work but you get used to it. It's been an invaluable tool for me. And squirmy is right - it's a good idea to be flexible and willing to experiment and observe. There is so little that is really known about DH and everyone has slightly different experiences it seems.

 

Here's what has seemed beneficial for me:

- Sleep. Yep, this is #1! It has a dramatic effect on my rash. The nights I sleep well, I wake up to a calmer rash. I take naps as often as I need and I enacted a good sleep hygiene routine (no computer after 8pm, low lights in the evenings, no stimulating activities, hot epsom bath before bed)

- Stress reduction. Very important. My rash flares up after even small amounts of stress. Meditation has helped me a lot. I have also jsut had to slow my life way down for the time being. No overbooking or overpromising. Laughter daily. Gentle exercise as often as possible.

- Strictly whole foods diet. Fresh meat, fresh leafy veggies, fresh fruits, safe starches like sweet potatoes, tapioca and white rice, some nuts, but limited amounts. I drink bone broth a few times a week (would like to do more). I have eliminated refined sugar. I use honey and maple syrup occasionally

- I've recently been playing around with a low histamine diet, just to see how it affects the rash. The jury is still out but it looks promising. (that's why I've been reducing my intakes of nuts)

 

I wish you good luck and comfort!


  • 0

Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#22 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,340 posts
 

Posted 12 December 2013 - 04:46 PM

Frankly I wouldn't touch barley grass with a 90 foot pole! I don't care what it says. Just how careful are they when they harvest it? Did any happen to go to seed or the beginnings of seed? Where was it grown? Somewhere that it had gone to seed in previous years or worse yet -- an old wheat field? What equipment is it harvested on? The same equipment as wheat or barley that has gone to seed? Nahhhh, I'll pass on that thank you very much. I think like Abby says ---- lots of fresh leafy greens.

 

Culturelle makes a gluten-free & dairy free capsule probiotic. Very good. If you're doing dairy then Greek yogurt.

Like Abbs says --- make sure all the supplements are sure fire gluten-free.

As to ACV, I'm wondering if the sulfites in it are affecting the rash. Reason I say that is b/c it seems when I drink wine (sulfites) my dh flares more. Not an ironclad conclusion yet but enough suspicion there for me to question it. I'll have to test the wine theory 3 or 4 more times before I'm sure. Today I don't feel like testing it. Might not tomorrow either. LOL! And then, we are all different so what happens to me may not happen to the next person. And I understand there are sulfite free wines out there if one really desires to drink wine.

Bleach baths? That's up to you. I'm with Abbs on that one --- Eeeek! But whatever floats your boat ya know.

There are people on this site who do alternative therapy. Lots of them. You ought to post a thread in the post dx forum asking about it.

Don't forget Vit C is good for your skin too & it's something you can't OD on so go nuts if you've a mind to.

 

Okay, now to your first question as to if moisturizing is a factor in the healing. NO. That's my short answer. This is really hard to wrap your head around & I think 1 reason is b/c we humans are so accoustomed to being able to take pills or treatments for just about everything that ails us. We are getting a cold, we take Vit C & zinc, we get allergies, we take antihistamines, we get aches, we use Ben Gay, we get flu & pneumonia vaccines & so on even with prescription drugs. We have developed a certain unconscious arrogance that we can control things, or have a certain amount of control over things. We simply find it impossible to accept that we have no control over this rash other than a strict gluten-free diet but we have zero control over the hour to hour, day to day, month to month presentation of this rash. We persist in thinking we can do something, anything, to heal it & make it go away. But the flat out truth is that this rash is beyond our control. We can stay off gluten & even go low iodine but that's where our control over this stuff ends. For well over a year, I thought I could control it in some way. My hubs still reverts back to thinking he can heal it somehow. If I hear him say these things one more time, I think I will scream!: "Maybe it needs the Caladryl & it will dry it up & then it will heal." or "Maybe it is too dry now & needs the vaseline to moisturize it. I may have burned it too much with the Caladryl & now need to moisturize & that will heal it". And there are many more he says. He knows he can't heal it but still has times when he can't accept the fact that nothing he does is going to heal the danged stuff until it's good & ready to heal! One thing is fact --- when a lesion or lesions decide to heal; they heal up so fast it can near make your head spin. It can look like total hell for weeks & then in 3 days your skin is amazingly healed. Jaw droppingly fast! This rash has a mind of it's own & nothing we do will stop it from going through it's cycle. It will break out & I guarantee it is not going to heal until it's damned good & ready to decide to heal no matter what we apply to it topically or orally. As long as we persist in trying to control it, we will make it worse by stressing about it. The sooner we accept the fact that there isn't a thing we can do; the lower our stress level goes & the better off we are. You can make yourself in-freakin-sane trying to figure out how to control this stuff & all you do is make yourself nuts.

The only thing we can do is whatever it is that makes it feel better at whatever given point in time or cycle of the rash. 


  • 1

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.

 


#23 Blaze422

 
Blaze422

    Community Member

  • Advanced Members
  • PipPipPip
  • 36 posts
 

Posted 12 December 2013 - 06:50 PM

Y'all are awesome for contributing to my understanding...Thanks!,,,
  • 0

#24 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,340 posts
 

Posted 12 December 2013 - 07:00 PM

There's a lot to learn & understand. I am just thankful that there were those who were willing to help me when I was a newbie. And I so often think about just how daunting & difficult it was to learn any of this pre PC days. I can't even fathom!

 

We are happy to help anytime.


  • 0

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.

 


#25 pricklypear1971

 
pricklypear1971

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,684 posts
 

Posted 12 December 2013 - 07:37 PM

Squirmy is right, you can't rush healing. But you can screw it up - stay out of the bleach.

Look, I know how desperate and adrift you feel. We all do. We've been there. But the best advice is to keep it simple.

I ignored sage advice and tried too many things at once...and that was bad because a body under stress can only handle so much - even a good thing.

Eat whole, simple foods. Concentrate on deglutening your house and building a repertoire of safe foods and brands you like and tolerate. Keep a food diary. Check every supplement and body care and pet item for gluten. Clean the kitchen - get the gluten out if the kitchen drawers, pans, utensils. Clean the dishwasher.

If you haven't had vitamin tests to discover deficiencies, do those. If you take vitamins/supplements I suggest liquids and powders dissolved in liquids. Celiacs have crappy absorption in the beginning. Probiotics help most, as do digestive enzymes at meals. Discover the common sense, tried and tested that works for you. Then move to the next phase.

If you want a healing diet look into GAPS or somesuch. For many, a pieced together healing diet (best ideas in food form we can tolerate) from several healing diets work.

There's no one way to do this. I'm sorry, but it's true. We've all had very unique journeys.
  • 2
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!

#26 DHLady

 
DHLady

    New Community Member

  • Members
  • Pip
  • 4 posts
 

Posted 04 January 2014 - 08:25 PM

I am a newbie to the gluten-free diet.  (1/1/14) I see that I should also pursue a low iodine and low salicylate diet as well.

I was diagnosed with DH in 2010. 

I too, am skeptical whether I truly am suffering from DH.

My break outs usually are bilateral in location; developing on both knees, elbows, arm pits, forehead, sides of my neck, mid-back, buttocks and most recently my fingers and genital area tissues.  Ouch!

The unbelievable burning itch right away was what sent me to the Dr. in the first place to begin my guinea pig days on the road to diagnosis.

A biopsy was done and lots of blood work every couple of months for over a year.

Steriod creams intensified the burning rashes.

I tried one Rx, which did not help at all.  I can't recall the name of it right now.

After testing 50 - 150 mg of Dapsone daily; my Dermatologist and I found a comfortable does of 100 mg per day.

That dose worked like a dream for me!  It controlled all break-outs.

Intense stress did cause flare-ups while on the Rx.

If I forgot the take a dose, I would experience symptoms by the end of the day.

My Derm. was always worried about lethargy and neuropathy, which I never suffered from.

My iron level was low, but not dangerously low for a woman of my age.

The gold ticket that spurred getting off the Dapsone was my oxygen saturation level.

As soon as I began taking Dapsone, my O2 was 90-92. 

Prior to taking Dapsone, I have no idea what my O2 level was.

My primary physician and Derm. decided that the Dapsone was causing damge to my red blood cells; which in turn were not sufficiently carrying oxygen to tissues in my body.

A blood gas draw on 12/17/13 confirmed that my oxygen level was even worse . . . around 86.

I have no asthma or breathing difficulties at all.

So, as of 1/1/14; I quit taking Dapsone cold turkey and began a gluten-free diet. 

After reading posts on this forum, I see that I have a long road ahead of me.

This moring, I woke up with horrendous burning rashes in all of the areas described above.

My only hope in this miserable lifestyle change is that I truly am symptom free one day.

Any and all scientific findings, support or advice are welcome!


  • 0

#27 Blaze422

 
Blaze422

    Community Member

  • Advanced Members
  • PipPipPip
  • 36 posts
 

Posted 05 January 2014 - 11:36 AM

Not to sound like a grizzly old veteran, I have a hard time understanding why you were taking dapsone and not gluten-free. When you were diagnosed with DH...you had regular blood tests and had your o2 levels checked but never heard that you needed to be gluten free?
  • 0

#28 DHLady

 
DHLady

    New Community Member

  • Members
  • Pip
  • 4 posts
 

Posted 05 January 2014 - 12:28 PM

Not to sound like a grizzly old veteran, I have a hard time understanding why you were taking dapsone and not gluten-free. When you were diagnosed with DH...you had regular blood tests and had your o2 levels checked but never heard that you needed to be gluten free?

My apologies!

Yes, I knew from day 1 that the only cure would be to go gluten free.

I chose to take the Dapsone, which acted as a band-aid.

I simply was not ready to make the diet change and still am not, honestly.

It sucks!


  • 0

#29 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,340 posts
 

Posted 05 January 2014 - 06:14 PM

Oh my, you have to start from square one. I don't think you need to try low salicylate just yet. Low iodine could well be a factor though. You will need to be pristine in your gluten-free diet & not have ANY slip ups. 

 

BTW, from what you describe of your rash & also the response to the Dapsone it is my opinion that you DO have dh. Now you can keep doubting that or you can wake up & smell the coffee & get started where you should have in 2010. You spent all that time on Dapsone without going gluten-free when that time could have had you way down the road & a lot of the antibodies would have been out of your skin by now. I'm afraid you have signed your own sentence. I'm sorry. Truly I am but you have a rough road ahead of you & only you can travel it. We will help as much as we can but ultimately you are the one in control.


  • 0

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.

 


#30 kareng

 
kareng

    Gobble! Gobble!

  • Moderators
  • PipPipPipPipPipPip
  • 14,237 posts
 

Posted 06 January 2014 - 05:49 AM

 

My only hope in this miserable lifestyle change is that I truly am symptom free one day.

Any and all scientific findings, support or advice are welcome!

 

 I don't feel miserable.  Its a bit difficult, especially in the beginning.  You might want to read the What's for dinner thread.  We eat very well.

 

 

http://www.celiac.co...r-tonight-chat/


  • 0

Thanksgiving dinners take 18 hours to prepare.  They are consumed in 12 minutes.  Half-times take 12 minutes.  This is not a coincidence.  - Emma Bombeck
 
dancing-turkey.gif
 
 
 
 

 





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: