0
bluewhitesky

I Think We Have A Flare Up (Pics)

Rate this topic

Recommended Posts

A bit of background, very short version: (I have made other posts with the looong version)

My DS (age 6) had what I thought was DH on his bum/hips/lower back. Derm said it wasn't active and come back in 6 weeks to look for changes and potentially do a biopsy. We kept feeding him gluten hoping for a flare, but low and behold it cleared up on its own almost completely. This left me stumped, frustrated, happy for his relief but confused.

 

squirming itch, you said if it's DH it will undoubtedly return, and possibly with a vengance.

 

So here we are:

 

https://flic.kr/p/npNShL

 

This is way worse than his original rash which just looked like mosquito bites. This is raised and lumpy and awful. When I laid eyes on it I felt like I had been kicked in the stomach. Then I convinced myself it was poison ivy. Until this morning when the backs of his ears were inflamed and itchy. Then I noticed a few spots on the back of one knee. 

 

Does this look like DH to you?

 

Our 6 week follow up to the dermatologist is next week. I just called and the doctor's awesome office manager is trying to get us in on Friday. 

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


This looks like dh. Let's remember that other things can look like this too BUT, given the history.... One question --- is it on both elbows?

 

BTW, I got them on the backs of my knees long before I ever got one actually on the front of the knees. 

 

Okay mom, let's get busy here & try to get something finalized on this & end it once & for all. I don't know how old you are, but I remember when people did "walk in's" at a docs office & you might have had to wait several hours just sitting there but you eventually got seen THAT DAY. You think you want to give that a go? You don't call, you just show up with son in tow & tell the person at the window the situation & say he needs to be seen today & you are willing to wait as long as it takes for the doc to have a minute to do a biopsy. You can also ask to see the office mgr. & say the same to her (him). Here's the thing..... we don't want the pattern the lab is looking for to get destroyed by scratching. This is THE opportunity & we don't want it to get screwed up. Explain this to the office mgr. In the meantime, do whatever you need to do to protect these areas from being scratched. Ace bandage wrapped numerous times around? We want thick padding over the area so even if he does scratch, it may not destroy the pattern the lab looks for. That pattern is easily destroyed!!!

 

When you see the derm & they are doing the biopsy.... be a helicopter mom right over the derms shoulder. Make sure & don't be shy of speaking up that they do it RIGHT. Ask if they have given the lab instructions that they are to look for evidence of dh --- make SURE that's notated. PUSH HARD for more than 1 biopsy & send EACH to a different lab. This is a subjective test. There is no litmus paper that you can say for certain yes or no b/c of the color the paper turned. This is a subjective thing with whoever in the lab is doing the looking. They should all know what they're doing but it never hurts to get TWO opinions. The lab person is looking for a specific pattern in the staining & if they aren't real good at deciphering what they see..... 

 

If you can get all of that done then you will have your answer one way or the other. If it's positive for dh then you can move on with your life knowing what you need to do & if it's negative, then you know you have to keep looking for an answer but dh is ruled out.

Good luck! 

Share this post


Link to post
Share on other sites

Thanks squirming itch! I feel like you are my coach :)

 

So the wonderful person at the Derm's office got back to me yesterday with an appointment for tomorrow afternoon! 

 

I took your advice and covered up the sores in DS's elbow with many layers of gauze to hopefully keep them intact. 

 

It is just on one elbow at this point. His other rashes, bum, hips, lower back were on both sides though. I'll bring pictures to refresh the dr's memory if necessary.

 

He's had a pretty gluteny day, I have to admit. Hopefully he's be good and rashy tomorrow (I feel like a terrible mother for wishing this!).

 

I will follow your instructions and will definitely be a helicopter mom at the appointment to make sure everything is done right. I don't want this to be screwed up!

 

Thanks again for all your support...I will keep you posted tomorrow.

Share this post


Link to post
Share on other sites

You are more than welcome! That's what we're here for.

 

Good deal! 

No, don't EVEN think you're a terrible mom! Don't you DARE! You're doing this for the greater good. I know it's hard & I know there is guilt that creeps into your mind; that's only normal & you would be a bad mom if it didn't. 

 

(((((HUGS)))) to you both! 

 

Okay, so it is presenting on both sides everywhere else. Then don't worry about the elbow. That happens sometimes too & quite often it will show up on the other days later. 

 

We'll be waiting to hear how it goes. 

 

Deep breaths, & again, & again. 

Share this post


Link to post
Share on other sites
Ads by Google:


YVW! :)

Share this post


Link to post
Share on other sites

We did it!! Appointment is over. Biopsy done!!

 

The first thing the dermatologist said when he walked in was, "So Mom wants a biospy." He said the new lesions were active (I was worried he'd put us off again). I said that I understood it needed to be taken from skin adjacent to the lesion. He said quite firmly, "I know what I'm doing". Then from that point on he explained everything he was doing, step by step, he went though the paperwork, told me how he was requesting direct immunoflourescence, putting the sample into a special solution (Michel's solution) etc. He took perilesional sample and one from an actual lesion (he said there were specific instructions to look for a different IgA pattern on that one...I've only ever heard that the IgA would be gone from there but at that point I didn't care). I didn't push for an extra perilesional one because I was feeling good about how things were going and frankly, having my DS's little elbow swelled up with the local anesthetic and poked with two bleeding holes I didn't know where he could find a spot to do another. If he had an outbreak on a different part of his body that might have been different. 

 

I was trying as hard as I could to be a helicopter! At one point he had to tell me (nicely) to get out of his way ;) 

 

DS was amazing! The doctor said he'd never seen a kid so calm around a needle. He didn't cry, he didn't even flinch actually. He was amazing.

 

I feel like I have a huge weight lifted off my shoulder. No more weird anticipation for a reaction. I'll keep him on gluten until after the results, just in case we or our family doctor wants to do bloodwork again (I don't think he was on gluten long enough for the first round). Then we'll go off gluten no matter the results of the biospy...unless the derm can give us proof that it's something other than DH. I just needed to do this to prove to my son that I did everything I could to figure out what was going on and didn't just make him go gluten free on a whim.

 

Thanks for all your support squirmingitch :) 

Share this post


Link to post
Share on other sites

WONDERFUL! Whew! Even I'm breathing easier now. Good, good, good! You're doing the right thing & keeping him on gluten till the results come back is the right thing too. You're doing just fantastic mom! And your DS sounds like he's quite the little trooper. 

I'm SO glad this is finally (almost) over! I'm sure you are way more glad than I am but I know how you're feeling. It's a huge hurdle! Or more like series of hurdles & you jumped them all. You should give yourself a major pat on the back.

 

No thanks needed hon. If I could help in any way to keep that little boy from suffering any more than he had to.... or keep him from having to go until he's an adult to find out.... or keep him from having to go through years of itching even after going gluten-free......

 

Let us know when the results come back please.

 

Good job mom! Well done.

Share this post


Link to post
Share on other sites

I am putting this in as a reference if anyone has DH questions.  I finished my gluten challenge 13 days ago, and the spots started during the challenge, but I did not explode with them until last night.  Today I am covered.  So, 2 weeks later, it is still in my system and I am in a full attack and polka dotted.  

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   5 Members, 0 Anonymous, 249 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    Ingredients:
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Directions:
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
     
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
    Serve with rice, beans, and cabbage, and garnish with avocado, cilantro, and sliced grape tomatoes.

     

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au