Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Guhlia

Update On Annika

Rate this topic

Recommended Posts

Well, we saw the dermotologist today and she didn't feel as though it was characteristic of allergies. She told me to go back to my regular diet, but note any changes. She was the sweetest woman ever. She biopsied Annika's rash and we will have results in about a week. She gave us some cortizone mousse for her horrible "cradle cap" or whatever it is. She said that would help with the itching. She even called the company to check on the gluten status. :) She was truely wonderful.

The rash on Nik's belly is much better, but still there. At least it doesn't look like cigarette burns anymore. Now it just looks vaguely like heat rash. It seemed to get better when I stopped wearing perfume. That's also when I started using California Baby cream on it too though, so its hard to say which helped and I don't want to stop either because the rash was so horrible before.

Anyway, aside from the itchy head she's doing well. I can't believe how fast she's growing up. I don't remember it going this quickly with Tori.

Share this post


Link to post
Share on other sites

Well, she is now covered in the rash again... I don't know what's going on. It seems like it could be food related, but the dermatologist was so confident that it wasn't. I'm wracking my brain. I had a nasty stomach bug so I was washing my hands nonstop. I'm sure I used perfumed soap by accident at least a few times. We had thought that perfume may have been an issue. We also have suspected eggs, tomato, and/or casein (though she handled all of those fine up until about a month and a half ago???). The other possibility I suppose is that I'm getting gluten somewhere and just not getting sick??? This whole thing started when people were eating gluten and handling her around Christmas. However, the rash is mostly on her belly which isn't characteristic of DH, right? That's where everyone was touching her though and that continues to be where the rash gets bad. My other option is that its not related to diet or perfume at all and that it just coincidentally got worse again when I went back on a regular diet.

Since she doesn't seem bothered by the rash I think I'm going to wait until I get the biopsy results before doing anything else. I will probably go egg free to see what happens. I had been eating egg sandwiches every day because I don't really like meat for breakfast and that was quick and easy. I may not even do that though because I don't want to change the appearance of the rash. I'm sure the derm will want to see us again.

Her "cradle cap" is back again too and oozing. I'm sure now that its related to the rash. Yesterday her rash looked pretty good (on a regular diet) and her cradle cap was almost gone! Now, a day later her rash is back and her head is oozing.

My poor little girl. :(

Share this post


Link to post
Share on other sites

Tori is doing well. I'm really pushing Don though to do the Enterolab tests. Her poop is light colored quite a bit and her behavior has recently gone from tolerable to HORRIBLE. She used to be such a sweet little girl. Now she's just so angry and oppositional. I know it could be that she's just at that age, but this seems extreme. I dunno. I'm betting she has Celiac. Don still wants to wait though because he wants to be sure we get a positive result if she has it. She only eats a small amount of gluten 3 days a week maximum so he wants her to be eating it for as long as possible before testing. Hopefully he'll give in soon though.

Share this post


Link to post
Share on other sites

It is hard. Especially with Annika going through this thing at the same time. I swear, it looks like she has some flesh eating virus. Its really scary. I should get the results of the biopsy on Monday though, so hopefully we'll have a better idea of what's going on.

Does anyone know if they do allergy testing on babies? If so, how safe is it?

Share this post


Link to post
Share on other sites

I hope she gets better soon, poor little thing.

Do u mean the skin prick test or the blood draw for alleriges?

paula

Share this post


Link to post
Share on other sites

Either, really. I know nothing about allergy testing. Are either accurate? Can either be done on a baby? Are they safe? If yes to all, perhaps I should pursue an immunologist appointment???

Share this post


Link to post
Share on other sites
Either, really. I know nothing about allergy testing. Are either accurate? Can either be done on a baby? Are they safe? If yes to all, perhaps I should pursue an immunologist appointment???

Angie,

I don't know, but this sounds serious and you sound very worried. I would make a call to an allergist/immunologist (or 2) and ask them if they test infants, and how accurate it is.

Share this post


Link to post
Share on other sites

With my insurance I have to go through the doctor for a referral. This time of year we can't afford to pursue anything without insurance coverage. Its the end of our slow season and money is tight.

Maybe I'll just go back on the elimination diet until we have further answers. I did ok adding corn, rice, and soy in without the rash getting worse. I think I'll just cut out nuts, casein, tomato, and eggs until I hear from the derm. I'll also try harder to avoid the perfumed hand soap that I used to use. Maybe I'll just put that away for now so that I don't screw up and use it. Then, if the rash goes away again, I think its pretty safe to say that its one of those 5 things. That shouldn't be too hard to narrow down. I guess then I don't even need to pursue an immunologist.

I would have stayed on the elimination diet the first time, but I got a stomach bug and wasn't keeping anything down. There were very few things that would stay down and I was losing my milk supply so I had to just kind of eat whatever I could keep in me. I'm still struggling and my milk supply is still down and I'm having to use some pumped milk (which would have all of those possible allergens in it).

Argh... This is just so frustrating! I wish the health care system were a little more user friendly.

Share this post


Link to post
Share on other sites

I called the pediatrician yesterday. She said to go back on the elimination diet and see what happens to the rash. She is really wonderful about taking phone calls and talking her patients through things rather than having them come in all the time. Anyway, we're going to continue on the elimination diet until the rash is completely gone. From there she wants to send us to a gastro to work with about adding foods back in so that we don't have to go through the time or expense of allergy testing. I'm not sure why a gastro, but I trust her.

Anyway, its been less than 24 hours and Nik's rash is already getting better. I didn't think the stuff would get out of my milk that quickly, but its obvious that her rash is clearing a bit. At least its not oozing anymore. She also seems to be a bit more comfortable. That's a plus.

These items are my main suspects:

EGG

TOMATO

PEANUTS

ONION

ANCHOVIES

CASEIN

I'm pretty sure its not casein, but I can't be positive yet without doing a proper elimination trial. Hopefully her rash will go away relatively quickly so I can start adding things back in slowly. I'm actually pretty sure its either egg or anchovies because I normally have an egg sandwich every morning for breakfast (anchovies are in the worchestershire sauce) and her rash always seems to get worse in the evening. Plus, I don't otherwise eat eggs generally and I definitely don't eat anchovies in anything else. Anyway, it seems to me that the rash started when I started craving egg sandwiches every day.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,807
    • Most Online
      4,125

    Newest Member
    MeresaI
    Joined
  • Forum Statistics

    • Total Topics
      112,067
    • Total Posts
      956,699
  • Who's Online (See full list)

  • Forum Discussions

    Oh yes, it could, although to be honest I never got myself so wet with sweat that it would have been a serious situation.  However, I can remember one time when I got caught in a cloudburst while going to my car in a large parking lot, though, and got soaked to the skin, and of course had to wear those soaking-wet clothes while I drove the 45 minutes it took me to get home --- I will NEVER forgot the misery and agony of that drive!  I could just barely keep the car under control, in fact.
    Thanks for your response, Squirmingitch, but I have to almost laugh, as at this point I am not really stressing over these questions at all --- just curious.  I have always been an insatiable question-asker, so please don't take my frequent questions as a sign of my obsessing over celiac disease or DH.  Yeah, admittedly I was rather stressed out for a couple of days two weeks  ago or so, but I am significantly settled down now, even while negotiating the nutritional maze of trying to manage two
Water?! That's… unreasonably inconvenient. Did it happen with sweat?
  • Blog Entries

  • ×
    ×
    • Create New...