Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

2 Neutral


About macocha

  • Rank
    Star Contributor

Contact Methods

  • Website URL

Profile Information

  • Gender
  • Interests
  • Location
  1. She has tried: Elidel - 1% cream mupirocin - 2% Hydrocortisone 2.5% and one other - an ointment her allergist gave her What do I think it is. I am leaning towards DH. She has fructose malabsorption already. Her brother has celiac. I want to know for sure because if it is this and that makes the FM worse than what it is. This has never fully gone away like sometimes exzema does in diff weather. It has always been a problem.
  2. I posted a bit ago and need some more follow up. I was looking at some of the photos and daughter's don't look exactly like. Her rash though is getting worse and no meds are working She has it on her eyelids, inner elbows/arm, and neck. The photos are poor quality because of the camera phone, but you get the gist. On the eyelids - on the left side you can see a small bit in the crease, but tonight it has spread to be even redder (inflamed) and goes beyond the eyelid to the side of her face. (sigh) on the right it is in the upper eyelid and somewhat the crease. These areas burn a great deal and she is suffering On her neck, they are 1 to 2 inch patches. Photos don't catch it all. those don't bother her as much, but they aren't as inflamed. The ones on her arms (only including one side) are heck-a inflamed. they are horrid and hurt her a great deal too. the photo doesn't show how much it is inflamed, but it is...badly. Do these even look like any cases you have seen? She doesn't get into the derm for a few weeks, so I am struggling with what to do for her to ease the pain.
  3. totally! I have a teen and his attitude is horrendous. I can tell when he gets glutened (sleeps a ton) and when he is weaning off it again (attitude and really horrible mood). I cannot find where he is getting it. but yes, I feel your pain.
  4. Yep, and I have. I even told someone last night. not a big deal if you approach it with a non-attack attitude. It was my son's friend's mom. it was something my son (13) thought was okay to have and it was not and I let her know. I also told her to call anytime she didn't know something. she was great about it. I wasn't mad - not her fault at all.
  5. cypress - mainly because her diet is already horrid and if I add the gluten-free it will be more limited. And, if I can get the diagnosis of celiac then maybe we can start adding in the FM restrictions and see if she can handle it now. I don't wish fructose malabsorption on anyone. It is awful and has had me in tears many of nights - moreso than the celiac diet. that is a breeze compared to hers. so, if I get the diagnosis - in my mind it would be easier (in reality maybe, maybe not). does that make sense?
  6. My daughter has fructose malabsorption. Just a tidbit of info. she has been to an allergist and it was found she has a dustmite allergy. She also has horrible rashes inside her arms that he gave her an ointment for. it helps maybe a small bit, but not a lot. You can see where the outline of the ointment goes because it is a lot paler. Now the rash has gone to her eye lids. It stings and hurts and is itchy. This new doctor we saw today says it is excema. Sigh. I just don't know anymore. I asked if we could test for DH and he didn't know what it was until I told him the long name and he doesn't think that it is and said in his 15 years he hasn't heard of how to test it. I mentioned biopsy. I believe (correct me if I am wrong) the biopsy will show if it is excema or that other one psorisis (sp?) but what tests are there to see if DH is celiac related? her blood tests for celiac are negative (her brother has celiac). then he went on to say "I don't want to burst your bubble" on the whole dietary issues and FM, etc. I just said you didn't burst my bubble, I have my gut feelings and it hasn't steered me wrong. I can tell when she eats things she isn't supposed to and know that it isn't imaginary what her issue is. Her breath test was really high and she has had two SIBO infections and it is in fact an issue she is dealing with with her gut. ~banghead~ what a horrible experience. I got a referral to the dermatologist, but what do I take with me to validate my concerns or for the testing I want done? What tests do I want? Any links for research issues for DH? thanks!
  7. I am slowly converting the whole family over. My son is a positive for celiac - so most likely. I have no more regular flour in my home and use the gluten free flours when cooking. it is more the breads we still keep around.
  8. okay, so I got a copy of the fax: TTG Antibody, IGA <3 ref range: neg <5 equivocal 5-8 postive >8 Immunoglobulin A 113 ref range: 81-463 gliadin antibody <3 ref range: neg <11 equivocal 11-17 positive >17 So, looking at this, I am negative from what I am reading. (and she did say negative 3 when talking to her)
  9. Oh, and my symptoms and health issues are: anemic kidney stones (at age of 30) chronic bacterial infections fatigue irritated easily ( ) teeth issues etc... I know there are more, but I can't think of them right now. I just called back and being a pest asked them to fax them to me. I am really curious as to how they break it down and what the other levels are...
  10. I don't have a copy of my labs in front of me, but I asked for a total IGA and TTG-IGA my numbers she gave me are 113 and -3 for those results. and said I was negative. I can't find the ranges or whatnot and don't know what the other numbers are if they break down the total IGA or whatnot. any input with what minimal info I gave and got at this time?
  11. http://abcnews.go.com/Health/teen-finds-cure-mystery-illness-mayo-clinic-mother/story?id=11142991
  12. a good website for resources is this as well: linked it right to the "testing" page, but check out the other topics http://www.celiacdisease.net/testing if your doctor waves you off and you need a referral to see a GI doctor, please please please be insistent that they give you a referral. I have been fortunate that we have no issues with docs waving our concerns off, but I have read stories on here of others not so lucky.
  13. And I am just north of SW Washington - grew up in SW WA in fact. Now I am outside of Tacoma. do I hear support group? lol Welcome!
  14. also, I swiped this from the univ of chicago website, which tests did they have? Which is the correct Screening Test? Anti-Tissue Transglutaminase (tTG-IgA) -- A screening test is commonly used when an individual is in a risk group for Celiac Disease, whether or not he/she has symptoms. This test is usually the one offered for Celiac screening events, as it is the most sensitive test available. Other Tests Total Serum IgA -- This one tests for IgA deficiency, a condition which can affect the accuracy of an antibody test) Anti-endomysial antibody test (EMA-IgA) -- EMA-IgA are very specific for Celiac Disease but they are not as sensitive as teh tTG-IgA. HLA-DQ2 and HLA-DQ8 gene tests -- The "gene tests" are not antibodies. They can be used to exclude Celiac Disease (if negative) in doubtful cases
  15. when eating fructose when your body should not creates really bad reactions in my daughter, weepy, combative (not hitting, just really over the top stubborness), etc. it is awful. I am sorry you are going through this.
  • Create New...