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Gluten-Free For 20 Years With Rash From Hell


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73 replies to this topic

#46 Simone52

 
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Posted 07 August 2013 - 05:37 AM

Hey you two, I found a recipe for soy free, egg free mayo: http://www.penniless...ecipe-flax.html

 

Did I mention that I am obsessed with making my own condiments? I've made ketchup (in the crockpot, honey sweetened, kosher salt) and horseradish (easy as pie, jsut don't stick your head over the food processor and take a big whiff when it's whirring - you'll be blind for a minute or two, if you do. A, uh, friend told me that...). I'm also making pickles and applesauce. Apparently my new full time job is feeding myself.

I have the same job!! :P I also make my own ketchup.  Oh, homemade pickles are the best.  I hadn't thought about that.  I was thinking that it was the pickle itself that was iodized.  But I guess you're right. It would be the salt.  Shoot!  Why didn't I think of that.  There is another website out there I like to use.  I can't remember the name right now, but I'll get back to you.  I think it's something like Sugarfreegirl.  She has a sugar-free, soy-free, gltuen-free, vegan, corn-free, ketchup recipe that I LOVE! I just can't think of the name.  (I think I am going to start blaming my memory on gluten too!) And horseradish. Mmmmmm. I also found a site for gluten-free make-up.  Oh jeesh I am getting obsessive.  Speaking of that, there is another company that makes soaps. body products and cleaning products that are all good for us.  And the scent is unbelievably phenomenal.  I think I mentioned it somewhere already but it's worth repeating; the company is Indigo Wild and the products are called ZUM.  The scent I am obsessed with is Frankincense and Myrrh.  The laundry smells heavenly not to mention my own self.  I will get back to you about the name of that site as well. 

 

Well, I'm off to drink my black coffee, dried toast with apricot pure fruit spread.  

 

ItchyAbby: can you post the pickle recipe?

 

Okay, I found the sites:  www.spoonfulofsugarfree.com and www.indigowild.com.


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#47 ItchyAbby

 
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Posted 07 August 2013 - 07:42 AM

Thanks for the websites!

 

I am using the recipes out of Ball's Complete Book of Home Preserving - the essential canning book! I also have one called Food in jars, which focuses on small batch canning. I look for the lowest sugar recipes. The one I am going to try next out of Ball's is their Deli Dills (no sugar) which is really similar to this recipe: http://localkitchenb...y-dill-pickles/

 

Next up, I have to make mustard. Oh how I've missed mustard.

 

As far as makeup, I use Alima. I used it even before I found out I was gluten sensitive. I just liked that it was really simple makeup, never feels heavy or cakey and makes my skin looks amaze-balls.  http://www.alimapure.com/

 

Now I want toast! I have not had toast in about a month! What brand have you found that is LI?


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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.


#48 ItchyAbby

 
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Posted 07 August 2013 - 07:48 AM

Oh and cashew milk. I follow this recipe, but leave out the last four ingredients (flavorings), even though they sound delicious. I leave them out so it's as neutral as possible. That way it can be used in savory and sweet recipes and won't flavor my tea too much. (But man, I bet vanilla, maple syrup and cinnamon would be good! Maybe I will make one bath with them and have it as my nighttime drink)

http://cookieandkate...ew-milk-recipe/


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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.


#49 Simone52

 
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Posted 07 August 2013 - 08:06 AM

Oh and cashew milk. I follow this recipe, but leave out the last four ingredients (flavorings), even though they sound delicious. I leave them out so it's as neutral as possible. That way it can be used in savory and sweet recipes and won't flavor my tea too much. (But man, I bet vanilla, maple syrup and cinnamon would be good! Maybe I will make one bath with them and have it as my nighttime drink)

http://cookieandkate...ew-milk-recipe/

Toast...Squirmingitch recommended Glutino Genius.  Just egg whites and non-idodized salt.  I don't think it's as good as Udi's but toasted well it's pretty good.  

 

My rash seems to be really settling down.  I have the spot here and there.  I have been LI for about 2 weeks.  I will wait another week before I try anything.  I am off to my PCP in about 10 minutes.  This is the first she has heard of this with me.  And of course, I'd say I'm 90% better.  I still don't understand if this is DH what triggered it?  Too much iodine??  I'd never heard of such a thing before this.  Still, if it was a CC would I be so bad for so long after being totally gluten-free?  I may never know.  But I am not willing to add anything like dairy :(  back in yet.  Oh, for some parmesan :unsure: !!

 

 

 

BTW  the apple cider vinegar directly on rash applied with a cotton ball is the best I have found! 

 

Off to the doc.


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#50 squirmingitch

 
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Posted 07 August 2013 - 09:00 AM

Thanks for the links both of you! I'm going to try that mayo. I had tried a few recipes before that were eggless & they sucked. :lol: But none used flax seed. I'll give it a whirl.

I like the Afterglow cosmetics --- totally gluten-free & not heavy or oily feeling. Before I knew I had celaic I quit using all makeup b/c my face got itchy & swollen every time I wore it. Now I know why! No more problems with the Afterglow.

 

I'm going to try the acv on the rash. I had tried white vinegar long ago but didn't think of the acv.

 

If you like Udi's bread better it will be fine. Only egg whites in it; no egg yolks. I've eaten it & been fine. Here's a link to the ingredients:

http://udisglutenfre...sandwich-bread/

 

and as far as that goes you can eat Rudi's. See ingredients:

http://www.rudisbake...oduct/original/

 

Those are just for the white bread versions; you will have to check on the others. And I haven't had a problem with sea salt once I got the nerve up to try things that have sea salt in them.

 

This is a bun in a bowl bread -- quick & easy. It was posted in the recipe forum but in the brown rice/cocoa powder version. I tweaked it to be more like white bread for my hubs & so that recipe follows the orig.

 

A woman at our local support group told us about a low-carb "bread" that she makes in the microwave. I tried it and thought it was okay and started to experiment a little. This morning, I hit a really great recipe. My 15 yo DD, who is not gluten-free said it was good and asked for more. It reminded me of whole wheat bread - soft, yet grainy in a good way. I'm planning to make some more of these for sandwich buns.
 
Here's the recipe:
 
1 large egg (for low iodine use 2 egg whites & no egg yolk)
2 Tbs. brown rice flour (you can sub white rice flour or sweet white rice flour)
1 Tbs. almond meal (you can sub cashew meal)
1 Tbs. golden flax meal
1/2 tsp. baking powder
3/4 tsp. sugar
1/2 tsp. cocoa powder
shake of salt
 
Spray a custard dish (or any baking dish that will yield a hamburger bun sized "loaf") with non stick spray. Crack egg into dish and stir with a fork until it's well mixed. Add all other ingredients and stir well. Cook in microwave on high for 90 seconds. You'll have to loosen around the edges with a butter knife, but mine came out pretty easily.
 
I'm using some self-control to wait until lunch time to make another one and create a delicious turkey sandwich. (insert drool icon) 
 
 
 
WHITE BREAD VERSION OF BUN IN A BOWL:
 
1 large egg (for low iodine use 2 large egg whites & no egg yolk)
2 Tblsp. White rice flour or sweet white rice flour
1 Tblsp. cashew meal (flour) if not sensitive to salicylates you can use almond meal (flour)
1 1/3 Tblsp. Golden Flax Meal
1/2 tsp. baking powder
1 tsp. sugar
shake of salt
 
Spray a custard dish (or any baking dish that will yield a hamburger bun sized "loaf") with non stick spray. Crack egg into dish and stir with a fork until it's well mixed. Add all other ingredients and stir well. Cook in microwave on high for 90 seconds. You'll have to loosen around the edges with a butter knife, but mine came out pretty easily.
 
 
And here's a Paleo Banana bread recipe --- you can sub ingredients for sensitivities:
 
Paleo Banana Bread
 
 
Print
Prep time
10 mins
Cook time
60 mins
Total time
1 hour 10 mins
 
Serves: 8
Ingredients
4 bananas, yellow (they do not need to be overly ripe but you can if you want)
4 eggs
1/2 cup almond butter (or any nut butter, i.e. macadamia, pecan, etc)
4 tablespoons grass-fed butter, melted (can substitute coconut oil)
1/2 cup coconut flour
1 tablespoon cinnamon
1 teaspoon baking soda
1 teaspoon baking powder
1 teaspoon vanilla
pinch of sea salt
Instructions
Preheat your oven to 350 degrees fahrenheit
Combine your bananas, eggs, and nut butter, and grass-fed butter in a blendtec, blender, food processor, or mixing bowl and mix well (if using a mixing bowl you need a good hand-mixer)
Once all of your ingredients are blended, add in your coconut flour, cinnamon, baking soda, baking powder, vanilla, and sea salt and mix well
Grease a 9×5 glass (see notes) loaf pan with a fat of your choice (I used grass-fed butter). If you use a metal pan it will probably bake in 45 minutes
Pour in your batter and spread it evenly throughout
Place in your preheated oven and bake for 55-60 minutes or until a toothpick inserted into the center comes out clean
Remove from oven and flip your bread out onto a cooling rack
Slice and serve
Variations
Cranberry Orange – Only use 3 tablespoons of butter. Add zest of one whole orange diced, juice of one whole orange, and1 cup dried cranberries or fresh if you want
Chocolate Blueberry – Add 1 cup of fresh blueberries and ½ cup of cocoa powder
Pumpkin Pecan – Reduce the almond butter to ¼ cup and add ½ cup of pumpkin puree and 1 cup of roughly chopped pecan pieces
Notes
 
 
 If you want to make these into muffins, use the same recipe and for mini muffins bake approximately 25 mins and normal size muffins 30-35 minutes.
 
And this is 1 I came up with for Belgian Waffles. If you tweak it & make it better LMK so I can too please.
 
Here is the Belgian waffle recipe:
 
1 1/3 cups of Bisquick gluten-free pancake & baking mix 
1 1/4 cups of milk
3 Tblsp. of canola oil (or oil of your choice)
2 eggs, separated (for the egg yolks I sub chia seed)
1 tsp. vanilla extract
2 Tblsp. sugar
 
Put the Bisquick pancake mix in 1 bowl. In a second bowl use a wooden spoon to beat together the egg yolks & sugar until sugar is completely dissolved & eggs have turned a pale yellow. Add the vanilla extract, milk & oil to the egg yolk mixture & whisk or mix well. Combine the egg-milk mixture with the Bisquick & whisk until blended. In a third bowl, beat the egg whites with an electric mixer until soft peaks form, about 1 minute. Using a rubber spatula, gently fold the egg whites into the waffle batter. Do not over mix! Pour the batter into prepared waffle maker.
You can also mash a ripe banana & add it to the mixture before folding in the egg whites. It will make the waffles a little heavier & you will need to cook them slightly longer but they are delicious!
 
I came up with this recipe by combing the regular waffle recipe on the Bisquick box with a Classic Belgian Waffle recipe by Emeril Lagasse.
 
Gotta run do some real estate stuff for our realtor.

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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.

 


#51 squirmingitch

 
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Posted 07 August 2013 - 10:51 AM

Oh! I forgot to say that recently I tried subbing quinoa flour for the rice flour, measure for measure, in the bun in a bowl & it turned out great! Plus, using the quinoa flour makes it much more healthy.


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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.

 


#52 Simone52

 
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Posted 07 August 2013 - 11:26 AM

Oh! I forgot to say that recently I tried subbing quinoa flour for the rice flour, measure for measure, in the bun in a bowl & it turned out great! Plus, using the quinoa flour makes it much more healthy.

Ohhh...thank you so much!

 

Also check out www.glutenfreemakeupgal.com.  She does the work for us!  I found a line of hair products there guaranteed 100% gluten free called Surface.  

 

I'm gonna go make my lemon chicken thighs now.  Recipe from Ina Garten's, "How Easy Is That?"  She makes it with chicken breasts but I like the thighs too.

 

Make sure with the ACV that you get the unfiltered with the Mother.  (I just love that!)  I don't know if this site will allow me to recommend brands, but I use the Bragg's.  

 

Chicken is calling me!


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#53 Simone52

 
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Posted 15 August 2013 - 04:33 AM

You are my sister!!  No tomatoes because I was thinking that if it isn't DH it could be a reaction to something else (we are all delicate flowers, after all!)  So I am trying a serious elimination diet!  

 

I miss my dairy... I miss my BLT's.....I miss  my tuna salad!  But I am determined. 

 

I called the suicide scratch.  Then got onto this site and found I wasn't alone.

 

Gluten is evil!!

 

xo

I'm about ready to throw in the towel.  I am so frustrated.  Just when I think it's leaving and I have a day or two of serious relief a new crop appears.  And now I have the beginning of a bladder infection.  But Septra is out.  ****

 

I have been sticking to the low iodine diet faithfully.  And of course gluten-free.  I don't eat out.  I am starting to think that this isn't DH.  Perhaps tiny aliens trying to colonize in my body.

 

Sorry....I'm feeling down today.  There's not even an emoticon for what I am feeling.


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#54 squirmingitch

 
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Posted 15 August 2013 - 05:49 AM

((((((Simone))))))) Huge hugs!

 

Okay, let's run through this again. What is the itch like? What do they look like?

Have you re-checked the labels for ingredient changes on everything you eat? 

How about all your topical products --- any ingredient changes there?

 

Do you have a good derm?


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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.

 


#55 Simone52

 
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Posted 15 August 2013 - 09:41 AM

((((((Simone))))))) Huge hugs!

 

Okay, let's run through this again. What is the itch like? What do they look like?

Have you re-checked the labels for ingredient changes on everything you eat? 

How about all your topical products --- any ingredient changes there?

 

Do you have a good derm?

Thanks for the hugs.  I need them.  Honestly, I have changed my laundry detergent, my hair and body products, I have sent all of my pillows to the dry cleaner, I have changed my diet.  I check labels obsessively.  I don't eat any pre-packaged anything.  I even gave up bacon for goodness sake.  

 

Is there such a thing as a good derm??  My PCP said all they do when they don't know what it is is prescribe antibiotics and steroids.  I have seen two derms since this began last May. This last one initially gave me a shot and when that did nothing he said that given my history of celiac it must be that and he prescribed Dapsone.  Biopsy neg for DH but I had been on steroids.  Both with an injection and oral prednison.  The pharmacy and 3 other doctors told me NOT to take the Dapsone as I had an anaphylactic reaction to Septra.  Sulfa-based. Swollen tongue, angio-edema, hives the size of dinner plates.....a nightmare.

 

I'm not certain it's DH at all.  It just doesn't make any sense.  But then what the *bleep* is it???  Itches to the bone. Bordering pain.

 

I always know when I am going to have an outbreak because there is a pricking sensation.  As if a tiny needle poked me.  The area surrounding that subsequently reddens.  Within 24 hours there will be a cluster of little bumps.  Maybe eight or ten. They develop a tiny blister in the center and then they scab and  simply dry up.  Until the next cycle.  I have some pictures on my phone from the beginning. I just don't know how to load it to this forum.  

 

Itches like a mother.  They seem to return to the same areas.  Right now it's my left shoulder and right breast.  I will also sometimes have a random one itchy.  From beginning to end of the cycle is about 5-7 days.  When it's peaking, it is almost unbearable. I will say, that the outbreaks don't seem to be as intense as in the first month or two.  My back was covered at first.  My friends said it looked like chicken pox.  I really thought I was over the hump until yesterday.  Honestly, no one has a cleaner diet than me.  I buy organic meats and vegetables.  I cook myself.  Over the last 3 weeks I have been also on a LI diet.  I really thought I was done. I am wracking my brain to figure out what I did differently the last day or two.  Nothing.  

 

My PCP doc said she thought it could be a perfect storm of virus and auto-immune reaction.  It was practically completely gone when I saw her last week.  My immune system is definitely compromised. (thank you Celiac)  But this is new.  

 

I am probably rambling. Honestly, maybe an exorcism is in order!  I had a dream that teeny, tiny bat-like creatures were flying out of skin.  

 

Thanks for your time.  You truly are great.

 

xoxoxox

 

P.S.  Started on my scalp and nape of my neck.  It's a mystery......


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#56 Simone52

 
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Posted 15 August 2013 - 10:02 AM

Thanks for the hugs.  I need them.  Honestly, I have changed my laundry detergent, my hair and body products, I have sent all of my pillows to the dry cleaner, I have changed my diet.  I check labels obsessively.  I don't eat any pre-packaged anything.  I even gave up bacon for goodness sake.  

 

Is there such a thing as a good derm??  My PCP said all they do when they don't know what it is is prescribe antibiotics and steroids.  I have seen two derms since this began last May. This last one initially gave me a shot and when that did nothing he said that given my history of celiac it must be that and he prescribed Dapsone.  Biopsy neg for DH but I had been on steroids.  Both with an injection and oral prednison.  The pharmacy and 3 other doctors told me NOT to take the Dapsone as I had an anaphylactic reaction to Septra.  Sulfa-based. Swollen tongue, angio-edema, hives the size of dinner plates.....a nightmare.

 

I'm not certain it's DH at all.  It just doesn't make any sense.  But then what the *bleep* is it???  Itches to the bone. Bordering pain.

 

I always know when I am going to have an outbreak because there is a pricking sensation.  As if a tiny needle poked me.  The area surrounding that subsequently reddens.  Within 24 hours there will be a cluster of little bumps.  Maybe eight or ten. They develop a tiny blister in the center and then they scab and  simply dry up.  Until the next cycle.  I have some pictures on my phone from the beginning. I just don't know how to load it to this forum.  

 

Itches like a mother.  They seem to return to the same areas.  Right now it's my left shoulder and right breast.  I will also sometimes have a random one itchy.  From beginning to end of the cycle is about 5-7 days.  When it's peaking, it is almost unbearable. I will say, that the outbreaks don't seem to be as intense as in the first month or two.  My back was covered at first.  My friends said it looked like chicken pox.  I really thought I was over the hump until yesterday.  Honestly, no one has a cleaner diet than me.  I buy organic meats and vegetables.  I cook myself.  Over the last 3 weeks I have been also on a LI diet.  I really thought I was done. I am wracking my brain to figure out what I did differently the last day or two.  Nothing.  

 

My PCP doc said she thought it could be a perfect storm of virus and auto-immune reaction.  It was practically completely gone when I saw her last week.  My immune system is definitely compromised. (thank you Celiac)  But this is new.  

 

I am probably rambling. Honestly, maybe an exorcism is in order!  I had a dream that teeny, tiny bat-like creatures were flying out of skin.  

 

Thanks for your time.  You truly are great.

 

xoxoxox

 

P.S.  Started on my scalp and nape of my neck.  It's a mystery......

Oh, also, each little pustule blanches when pressed.  


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#57 squirmingitch

 
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Posted 15 August 2013 - 12:37 PM

With rare exception your PCP is right about derms.

The derm who did your biopsy is an idiot. 1) you had been on steroids so it would be a wash & invalid. 2) you had been gluten-free for 20 freaking years!!!!! So it would be a wash & I doubt that even a little cc'ing would make a dh biopsy come up positive.

 

Okay, so you're allergic to sulfa. How about tetracycline?

 

Did I imagine you said you have a kidney infection now?


  • 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.

 


#58 Simone52

 
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Posted 15 August 2013 - 01:02 PM

With rare exception your PCP is right about derms.

The derm who did your biopsy is an idiot. 1) you had been on steroids so it would be a wash & invalid. 2) you had been gluten-free for 20 freaking years!!!!! So it would be a wash & I doubt that even a little cc'ing would make a dh biopsy come up positive.

 

Okay, so you're allergic to sulfa. How about tetracycline?

 

Did I imagine you said you have a kidney infection now?

Beginning uti.  Drinking cranberry tea, TONS of water, cranberry pills.  Hopefully, I caught it.  Don't want another round of antibiotics.  Can't do tetracycline either.  I am a delicate flower, after all.  We are ALL delicate flowers!  I'm supposed to see the derm Monday. I don't know.  Why should I bother?  Really, really, frustrating.  I need Dr. House! I am considering a Naturopath. Am also considering drinking heavily ;)


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#59 squirmingitch

 
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Posted 15 August 2013 - 02:15 PM

Has your dog been gluten free for years?

 

You make me laugh. Drinking heavily.....I'll join you. :lol:

 

I dunno, I think the derm is a waste of time considering your prior experience with him/her.

Geez, you can't do tetracycline either? At least last I knew, I could.

 

When did you last have antibiotics?


  • 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.

 


#60 Simone52

 
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Posted 15 August 2013 - 02:51 PM

Has your dog been gluten free for years?

 

You make me laugh. Drinking heavily.....I'll join you. :lol:

 

I dunno, I think the derm is a waste of time considering your prior experience with him/her.

Geez, you can't do tetracycline either? At least last I knew, I could.

 

When did you last have antibiotics?

With the first go-round of this he (derm #1) misdiagnosed me with folliculitis.  Prescribed Septra and then Prednisone.  That was in early May this year. I had been able to take Septra before.  No problem.  Big problem this time.  My immune system is having a HUGE party!!! I'm going to try to find a good allergist/immunologist.  Meanwhile, I am trying not to rip my left breast apart.

 

What dog?  She's NOT A DOG!!  And yes, she is also gluten-free.  Believe it or not, she has Inflammatory Bowel Disease.  I thought I was going to lose her a few years ago.  Lots of tests and $ later (worth every penny) she was diagnosed.  But there is no gluten in this house for anyone ever!


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