• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About keepinthefaith

  • Rank
    New Community Member
  1. I know it is going to be hard for a teenager. It has been a bummer for her brother at times, and he's been gluten-free for 4 years. Thank you for your words of inspiration. I am trying to figure out if anyone knows about rash flares within the first few days of going gluten-free. I don't know why a rash would be starting when she is not exposed to gluten..... Why would she be itching now?
  2. We got negative blood work, but positive DQ5 and DQ7 genes, and positive enterolab stool test. My child agreed to go gluten free (along with her sister, who just got positive enterolab results). They joined their brother and me, who have been on the diet for a while. You know how hard it is to give up stuff in the beginning....it must be extra hard for her because she is doubtful that the diet will work and she does not connect her symptoms (migraines, very bad rashes, low energy and chronic anxiety) to gluten, plus she is 14. Anyway, she has made it 72 hours despite three social events this weekend. I know she kept gluten-free. Her "reward" is an outbreak of eczema -- including on her FACE. She's very frustrated, not to mention so itchy that she can't concentrate, plus is now starting to think that eating gluten is keeping her from breaking out. She went gluten-free for three months last spring, then started eating it in the summer and within one month had her first -- a terrible-- suspected DH breakout. It was bad. She blames everything ,including her scarring on going gluten-free in the first place. Anyone heard about rash flares when giving up gluten? I will probably post this in the DH forum, but I started here because she is beginning the diet again. Is there something I can do? Tell her? Thanks in advance to everyone.......
  3. I am not a doc, but I do have experience w/ a child who had serious illnesses as a toddler, and multiple rounds of antibiotics, with resulting behavioral changes. We did end up treating for yeast infection for a while, and for us, a lot of the yeast symptoms, which we did have success getting rid of, were similar to later phenol issues. When I got proficient at figuring out what was what, there were subtle behavioral differences between the two reactions, so I am wondering if you don't have a yeast thing going on. For my kid, yeast was spacey, strange repeating behaviors ( stims), bed wetting, sugar cravings, bowel changes sometimes, and very low tolerance to frustration. Phenol was similar, but with hyperactivity and a drugged-like state, staggered around, deteriorated cognitively ( think about trying to do homework after drinking four beers!) plus cheek flushing and other temporary skin changes, plus chronic dark circles. Phenol reactions went away fairly quickly, while yeast behaviors lasted until we treated the yeast. Have you considered yeast? I know if you are getting used to gluten-free, you may not want to deal with another dietary thing, but it is largely dietary, and for us, worked very well. I would second the www.danasview.net info. I know it is mostly for autism, but just root around for the dietary stuff and apply info logically to your situation. It is a wealth of information. Does your child have signs of autism spectrum disorder, by the way?
  4. I doubt your doc would be up on this stuff, by the way. Most of the garden variety MDs are not, sadly. I have some links of stuff you could print out, and lots more info on this stuff. W/ behavioral things like your daughter has, it sounds like you are barking up the RIGHT tree. Was she on antibiotics when she was sick?
  5. I just took all phenol foods out of the child's diet for a month, then introduced them in one by one. Kind of like an allergy rotation diet. We used an enzyme for a while that worked quite well. For this child -- pineapple is the WORST -- was like a drunken monkey, and it was so awful that I just don't give that anymore. It is a methionine transsulfuration problem, from what I (barely) understand. Try this link that explains it: http://www.autismwebsite.com/ari/dan/jilljames.htm Then here is a link on enzymes: http://www.enzymestuff.com/nofenolfile.htm Also, epsom salts work wonders for many. This explains why. http://www.enzymestuff.com/epsomsalts.htm I hope this helps.
  6. Thank you Nora and to everyone who replied. It makes a difference.
  7. I have a child who reacts to phenol foods. We have examples of how the child's handwriting changes before and after apple juice. Before-- fine, after -- a complete mess, with an emotional breakdown in the middle of writing that included breaking the pencil and rubbing a hole in the paper with the eraser. Plus it looked like it was scribble from a preschooler. No more apple juice -- in fact by now, we drink no fruit juice at all. Pineapple is the worst, banana is addictive, apples make him spin, and since we don't do dairy either, we do chocolate rarely. I can give you more info if you want it.
  8. Thank you for the post and for the link. I've gotten valuable information and encouragement from it, and from the two replies I received over in the dermatitis herpetaformis forum. I guess I want to make sure that that result did indeed mean what it looked like it did -- that she had DQ7 show up, and find out what the heck DQ5 is..... and why they had a 3 and a 5 in front of them on the printout. But I am doing my reading. I saw DQ7 related to type 1 diabetes and some other pretty wretched stuff. Was I reading correctly? I will be curious to see if a regular GI doc will see DQ7 and something to be concerned about, or if she will just see the negative DQ2 and DQ8 and say she is "fine," esp. with her negative bloodwork. We go back in a few weeks. Thank you for the teen advice! It's already 80 percent gluten-free household. I'll just be taking that last step and not offering gluten in the house. My hubby is great with it, and my very small daughter who just got her positive Enterolab results back is willing to go gluten-free, too. She wants to start on Jan 1st. So it's just my little mule opposing things for herself. She gets terrible migraines, terrible anxiety, terrible rashes. To me it's a no brainer, but her logical process is 14, so..... Thanks to you for your help!
  9. Got test results back for my wonderful, yet mule-like teen daughter. Her genetics results read exactly as written: HLA-DQB1* -- 03(DQ7) HLA DQB1* -- 05(DQ5) HLA-DQ2 -- Negative HLA DQ8 -- Negative I can tell that DQ 2 and 8 are negative, obviously, but don't understand the first two parts. Can't get doc to return my call. She's busy. The NP who released the records to me said they are "completely normal." However I read about DQ7 and others indicating celiac. She is a tough case with one probable dermatitis herpetaformis episode that was too healed to biopsy by the time we got to the dermatologist. Bloodwork with TTG antibody, gliadin antibody and serum IGa all in range. She has eczema, severe scarring from the suspected DH, once had a skin test "wheat allergy" in younger childhood. No GI symptoms. Her enterolab stool test was positive, however, as was her mother's and sister's ( sister has very short stature and is very petite, despite tall relatives. She has a brother with autism who is gluten-free. I, mother, have many many gluten intolerant symptoms. Her bro and I follow gluten-free diet. I am just looking for something that I can tell her that proves "Yes, you have to go on this diet." She is 14 and a skeptic to enterolab, as she heard her conventional GI doc speak badly about stool testing, saying how terrible it is, and such. Won't connect her skin problems to gluten problem, won't connect her low energy, and severe anxiety/panic attacks to it either. She's comparing what she has to my serious "potty problems" and her brother's autism and obvious constipation and regressions when he eats gluten. Is there something I can tell her based on this DQ7 DQ5 stuff? I cross-posted this over in the DH forum, but not sure many people would read it if they were not "into" DH. Someone? Anyone? Bueller? Bueller? Thanks in advance!
  10. Dh With Negative Bloodwork?

    Thank you for your replies. Paula, I am afraid to gluten-load her because the outbreak was so bad last time -- she is multi-racial (her white side of the family has a LOT of celiac symptoms) and the scars are just terrible. But if she needs a diagnosis to follow the diet.... Ravenwoodglass -- I thought I would mention this. I have a middle child -- not my one with Asperger's -- who is 4 foot 7. Everyone around her is growing and she does not seem to squeak out much height at all. Her brother, who is 10 and 2 .5 years younger is far taller than her. Both my husband and I are very tall so it seems odd that she is so teeny. She had higher positive test results than her sister and I did through enterolab. The GI was interested in testing her for celiac, but I am suspect that once she sees negative DQ 2 and DQ 8, plus negative blood work in her sister, she won't bother. She's good, but pretty traditional. My girl is willing to go gluten-free if it can help her grow. No puberty at all yet, by the way and she is 12.5. I know you mentioned growth stunting in one of your kids, as well as Asperger's (in another ?). Based on your own symptoms, it seems as if we have a lot in common with our family gluten issues. Is it worth it to cross post my original post in the diagnosis and testing section -- in case people who really knows all the blood work and genetics stuff won't read this because of the DH topic, or would that be a pain? ( Not saying that you guys don't know...I am just hunting for genetics testing info too)
  11. Dh With Negative Bloodwork?

    Hi, My daughter developed a very bad rash that looked like DH. Some months before this rash, she had positive stool test from Enterolab, then went off of gluten for a few months. She went back on and within one month got obvious blisters in typical DH places that hurt her, and have ended up scarring -- even her face! We went to a derm. doc, who said if it wasn't DH he would eat his hat. We waited so long for the appt. that he couldn't biopsy anything, as they were largely healed. So he sent us to a gastro. doc who agreed with the derm's suspicion and did a lot of blood work. Just got results today (read over the phone, so I don't have it in front of me). But it says, her Ttg antibody IgA is less than 3, with 5 being the limit. That is in range for that test. Her antigliadin is less than 3 with 11 being limit. That is in range for that test. Her IgA serum is 89...the normal range is 70 to 432. In range. She was negative for DQ2 and DQ8 genes, but showed "DQB1 - 03-DQ7" and "DQB1 - 05-DQ5" She has a brother with autism who is Gluten-free Casein-free, and a mom ( me) who is gluten-free with autoimmune thyroid disease who has increasingly sensitive symptoms to gluten when I have an infraction. This GI doc thinks that Enterolab is bunk. What do we do now? Wait until another DH outbreak so it can be biopsied? Is this necessary? My child is 14 and is looking for any way out of the gluten-free diet -- as in agreeing with the GI doc and thinking Enterolab is snake oil and she now is negative for everything and therefore does not need diet. Is someone able to speak on this? Thanks......
  12. Dr. Or Gp. In Miami Fl.

    We just went to Dr. Lesley Smith in Miami/Miramar area. She was wonderful with my 14 year old daughter. Is English, and knows celiac well. After seeing my daughter's rash, and taking a history, she agreed that testing for celiac was a must-do. She jumped right on it. She does think that stool testing is a load of well....stool. My daughter with obvious DH, migraines, ADD, anxiety,and no GI signs of celiac, tested positive +18 on Enterolabs stool test. I tested +18, have autoimmune thyroid issues,and react heavily (typical GI) to gluten. I have a son with autism who has been gluten-free for 4 years. Negative blood tests in past. My other daughter, age 12 next month, who, despite having a six foot mother and six foot two father still can't get past 4 foot 9 -- she is shorter than her 9 year old brother -- she just tested +36 on the Enterolabs stool test. After waiting for nearly 4 weeks for test results for gene testing, and other celiac panel blood work, I got a tech to read results over phone, but all he was allowed to say was "Everything looks normal." I haven't seen results/values or such, and I don't know what a doc who looks down on Enterolabs will do for us if all the blood work looks negative. That remains to be seen. But she was easy to get an appt with -- we only waited 3-4 weeks, and she was celiac friendly, but not stool-test friendly, and very thorough, and very kind. I suppose I will be posting this post somewhere else. Now that I wrote all this, I have a ton of questions...... anyway, I hope this helps.