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MacieMay

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by MacieMay

  1. MacieMay
    If you have DH or a gluten rash, is it necessary to use ALL gluten-free skin and hair products? Thanks!! I was also wondering... I understand from what I've been reading that dapsone is the treatment for DH. At what stage of the DH outbreak does the dapsone treat? Is it the itchy beginning or the purplish scars it leaves behind? My daughter has...
  2. MacieMay
    I would definitely call the GI to see what they have to say. I have the same thing going on with my 18 mos old. Her rashes are terrible and they are definitely influenced by gluten. We are struggling with a diagnosis (negative panel and negative scope). Wednesday she had skin biopsy (we had to beg the Derm to do it). It started as the diaper rashes...
  3. MacieMay
    I feel your pain. I just went through it. It's heartbreaking to give your child something that you know could be causing them harm. But...if you think he has celiac then he has to be on the gluten for you to get the diagnosis. He is young and any damage done to his small intestine will surely heal and he will be OK. The antihistamine will help with rashes...
  4. MacieMay
    I feel your frustration!! I have an 18 mos old that has been in and out of Dr's offices all summer. We live hours away from Pedi specialists, it has been exhausting and we still don't have answers. Are you suspecting that your son has Celiac? Im sure you know that they'll want him to be on the Gluten. Have you tried to get on the cancellation list...
  5. MacieMay
    Has anyone had a Derm diagnoses their DH, with just a visual assessment, and no biopsy? Just wondering...
  6. MacieMay
    Does anyone know or heard of any natural remedies for DH? thanks!!
  7. MacieMay
    Are you seeing a Pediatric Neurologist? If not, I would go for a second opinion.
  8. MacieMay

    ARCHIVED Can Dh Be Mild?

    MacieMay replied to T.H.'s topic in Dermatitis Herpetiformis

    Curious??? These blisters you are talking about...are they what the Derm biopsied for your DH dx? You say blisters and the others are describing them as little pimples. My daughter, 18 mos has what these others are describing. I wouldn't necessarily call them blisters but more like pimples. I think she has celiac but has had negative scope and panel....
  9. MacieMay
    The GI Dr. didn't call back today, hopefully tomorrow. If your son is off of dairy and gluten are you sure he is getting enough fat in his diet? It's hard (which we are finding out) to make sure they get enough of everything, when they are on diet restrictions. Do you remember....when your son went off dairy and gluten how long did it take for his rashes...
  10. MacieMay
    My daughter is 18 mos today. She is not having issues with gaining weight but is having skin and loose stool issues. I just called her GI today about gene testing. She has had a negative celiac panel and a negative endoscopy and colonoscopy. Is your son having GI issues too?
  11. MacieMay
    Is it possible to be gluten intolerant (not celiac) and lactose intolerant? My daugther, 17mos is DEFINITELY lactose intolerant. From what I've read and what the Dr's have said it is very very rare for a baby to be lactose intolerant. She has been allergy tested for milk, wheat and the other big food allergens, by way of skin, blood, and biopsy and everything...
  12. MacieMay
    Does anyone have DH or a Gluten Rash that responds to Motrin?
  13. MacieMay
    OK...I guess that makes sense, because my daughters skin issues are not resolving as quickly as I had hoped after going Gluten Free. They certainly are not getting worse, like before, which is good. I'm trying to get the Derm she is seeing now to skin biopsy but he doesn't want to rush into anything. He's telling me to use the hydrocortisone (which we've...
  14. MacieMay
    Funny, I should come across this post at 2am, after my 17 mos has been up. We are too struggling with a diagnosis. She has been on and off the gluten several times over the past couple of months. 5 days ago she went back on after, I either accidently gave her something with Gluten or she was cross-contaminated. After that incident, I decided to go back...
  15. MacieMay
    My daughter had a terrible time with diaper rashes too starting shortly after her 1st birthday, after 6 weeks of treating it with desitin and nystatin, I finally linked it to whole milk. I stopped giving her the milk and the rash went away. I think she is lactose intolerant. We give her some milk products here and there, but she drinks lactaid now, her...
  16. MacieMay
    Hello there! I was hoping someone could help me... In order to diagnosis DH, I understand you need a skin biopsy but do you need to be on Gluten? Thanks!!
  17. MacieMay
    Thanks for the feedback We have been to an allergist, she has been scratch and blood tested and everything has come back negative. She has also had a scope (endo and colon) and nothing was detected in the biopsies (food allergies included.) Her allergist does not believe that her reaction is an allergy response. We did the elimination diet a while...
  18. MacieMay
    Ohhhhh! My daughter didn't have the Miralax prep. She had to take little tummies, day 1 and day 2 and then an enema the night before and morning of. I didn't even give her the little tummies on day 1 because she had 3 hugh BM's, earlier in the day. She still wears diapers so the pooping wasn't really an issue for us. Maybe if you start the prep early...
  19. MacieMay
    My 17 mos old had the scope last Tuesday, endo and colon. She did really great with the prep, and it was tough! I just offered lots of different varieties of juice (watered down of course)and kept her busy. We went to a local amusement park to keep her mind off of food and I didn't let her sisters eat in front of her. The surgeon came out right away...
  20. MacieMay
    Hi there! I'm sorry... I have to ask this question... I keep hearing about this "typical celiac poop"...what is a "typical celiac poop like?" I think my daughter might have celiac or a gluten intolerance. We have been back and forth, on and off the Gluten and I'm starting to see patterns in her bowel movements as far as consistency and color. Any...
  21. MacieMay
    I am confused about the difference between Celiac and G. Intolerance. I understand that Celiac is an autoimmune disease and triggers an antibody response, which results in damage to the small intestines. But what kind of response is an intolerance? Is it just the unablility to digest the Gluten? Are there a difference in symptoms? And how is the intolerance...
  22. MacieMay
    I think she is better on the gluten-free diet but I'm not 100% sure. Her issue is her skin, she has been flushed faced, almost like slap cheeked for about 5 months. She has this weird rash that looks like eczema somedays and something different on others days, it's on her knees and elbows, feet and hands. She had the scope last tuesday and we were gluten...
  23. MacieMay
    My daughter, 17 months, has had two different negative celiac panels and now a negative biopsy result. I still can't help but think that something is wrong. Has anyone else had children test negative before two years of age but positive later? Thanks!!
  24. MacieMay
    Thank for the insight and sharing your experience. I had a feeling that these rashes present differently. We've seen 4 doctors and my husband is an RN and they just shrug their shoulders. We just got our appointment for her scope. I think we will have answers and dx after that. UGH... I hate the thought of giving her Gluten for two more weeks. : (
  25. MacieMay
    Thank you so much for your feedback! : ) I'm hoping to get some additonal feedback from some Moms who have seen this Gluten Rash I've been reading about. Maybe I should post on another forum?
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