Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Wish Us Luck Today!


Electra

Recommended Posts

Electra Enthusiast

My daughter is seeing the dermatologist today and I did succeed in making her break out in one tiny little spot. She also has a small one on her face that she's had for a week or so. I mobbed her hair down with conditioners with wheat in them this morning hoping to get an even better reaction. I also rinsed it all out in the tub and let her play in the water for a while. I did rub a bunch on her skin too lol!! I'm not sure if it will do anything but it's worth a try. I'm hoping they can get a good sample for the test, so we can get a definitive diagnosis!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dlp252 Apprentice

Good luck today Angie!

jerseyangel Proficient

Best of luck today, Angie :) Hope this leads to getting some answers!

marciab Enthusiast

Good luck today. It dawned on me last nite that you could have slipped some plain flour (or some with sugar in it) onto her crackers or popcorn and she would not have noticed it either.

Two year olds are sooo easy to fool. You can forget it when she is 19 ;) marcia

Electra Enthusiast

Thanks so much for your well wishes. We actually didn't end up doing the skin biopsy. The specialist seemed very good and seemed like she believed me (of course she had my daughter pediatrician records with the rash well documented on them). She actually gave me the option and said if I wanted her to have the biopsy I could, but she said she thought we would have a better chance at getting a positive if she were having a breakout. She also said that my daugher is at the absolute WORST age to do it. She said it could mentally scar her for life and make her hate doctors forever. She suggested we go to the GI in a couple weeks and have him do the intestinal biopsy and if that comes out negative then we can try to find a doctor that will do the biopsy with general anesthesia.

My plan is to try and get her to break out before her appointment with the GI specialist and then hopefully I can talk him into sending my daughter to another doctor in the same area that is willing to come in and do the skin biopsy at the same time that she is having the intestinal biopsy. That way she only has to go under anesthesia once. It probably won't work out the way I hope, but at least I'm headed in the right direction (or so I hope lol)!!

Thanks again for all the good luck vibes!!

Lola B Rookie

Hi. I've been reading through some of the postings on the site tonight and decided to join. Thanks for providing this forum for discussion.

My twelve year old daughter has had a strange rash for approximately the last year. It started behind her knee and initially looked as though it was a mosquito bite. As time went on, the rash spread the the fronts of her knees, elbows, back, hips, tail bone, shoulders - basically all over. Our GP diagnosed the beginning rash as ringworm, but when the topical hydrocortisone creams failed to clear up the problem, I began to wonder. The next diagnosis was eczema - steriodal ointments failed to clear up the problem either, nor did the 'holistic' medications/creams that I ordered off of the web. After much frustration, I finally insisted that my GP write me a referal to see a dermatologist. After several visits and more steriods, I requested a biopsy. The results came back today, and the diagnosis is DH - at least for right now. The doctor did another biopsy from a non-rash area to confirm and we're being sent for blood work as well.

The doctor discussed going gluten free, and I have no issue with this other than finding decent flavored foods, learning how to cook without gluten products and convincing a 12 year old that her life will continue without Pizza and Eggo waffles; however, he also mentioned Dapsone as a potential treatment. I'm wondering if anyone has taken this medication and can let me know about the potential long term side effects. From my initial poking around on the internet, it sounds quite dangerous - especially for a child. Any help or advice would be greatly appreciated! Thanks!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

    3. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

    4. - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,101
    • Most Online (within 30 mins)
      7,748

    Steve Olson
    Newest Member
    Steve Olson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.