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dcrobinett

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About dcrobinett

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  1. Well, the test results were all in Turkish but I remember checking to see if they tested for all the antibodies (IgA, IgE, etc) and I'd felt satisfied. I stopped researching celiac after a year or two after my diagnosis and just moved on with my diet so now I've forgotten a lot of the information about testing. I'll need to read up again and check her medical records.
  2. Does your son have celiac? If so, did your son's pot belly improve on the gluten-free diet? I suspect I've had some gluten intolerance growing up with symptoms off and on but I never knew they were abnormal. I think I had a bit of a pot belly around the age of 5 (from what I remember in my childhood pictures around that age) but nowhere near as huge as my oldest. Even the pediatric urologist pointed out that her belly is abnormally large, a hallmark of constipation.
  3. I'm sorry but I didn't do a search through the forum about this issue because I always struggle with trying to apply other people's slightly different questions and answers to a specific issue and I second guess myself, etc. I just need to ask specifically and get direct answers. Thanks :-) So. I have celiac disease, official diagnosis nearly 6 years ago. I have two girls, one will be 5 in two months and the other is 18 months. We are Americans and we moved to Turkey almost three years ago, when my oldest was 2. Long story short, we put her in preschool 3 days a week where they fed her the usual Turkish diet which is very heavy on bread, pasta, and rice. They also tend to do a lot of bean soups -- just carbs. Being the carb-lover my daughter was, she ate all the bread, pasta, crackers at school, of course. She eventually began to struggle with chronic constipation and frequent UTIs, starting two years ago. She also has an ENORMOUS pot belly. She is skinny everywhere else. She has very little padding to her bottom but then, my husband has no butt anyway so she could've just inherited that. We had her tested for celiac by blood test (age 1 and 3) and upper endoscopy (age 3). She did not test positive. Her pediatrician put her on osmotic laxatives (similar to Miralax) and it helped (and we continued to eat real food at home -- no bread, no pasta, but we had rice at dinner, plenty of veggies and fruit). Her UTIs became less frequent for a while and then became frequent again last summer. We took to an urologist who performed a VCUG test (for reflux back into her kidneys -- tested negative) and then concluded her brain and bladder were not communicating well, which she would outgrow, and that her bladder was spasming involuntarily, based on what we were describing (sudden dash to the bathrooms, tiny leakage onto underwear -- enough to dampen underwear but not completely wet her pants -- and no sensation of feeling a full bladder). She was put on anti-spasmodic medicine, taken off the osmotic laxatives, and since then, the mad dashes to the bathroom and wet underwear ceased completely. That was awesome. THEN two months later...she began to get constipated again, got a UTI and another the next month (which was last month). No mad dashes to the bathroom and no tiny urine leakage onto underwear...so what's up with the UTIs again? We could see the constipation and UTI connection. We knew that chronic constipation could enlarge her rectum, putting pressure on her bladder, making her unable to empty it fully which causes bacteria to thrive in her bladder. The first urologist thought the constipation and UTIs were unrelated. So, we went to a different urologist, a pediatric urologist, who was recommended as the best in the country. After a long consultation, he put her on a strict diet for 3 weeks -- basically a gluten-free diet (not 100%, though) without sugar, starch (potatoes, corn), anything that causes bloating, and fruit that constipates (bananas and apples) -- and back on the osmotic laxatives, continuing the anti-spasmodic for her bladder. He wanted to resolve the constipation issue for 3 weeks before beginning tests for the urology issue. I think he thinks the constipation and UTIs are related but wants to rule out other things with tests. So, that's where we are. We go back to this pediatric urologist in a week. We are following the diet, I send lunch and snacks to school with my daughter, and she has also tested low in iron so we added iron into her diet (grape molasses, etc). She now has daily BMs, she has more color in her face, her energy has improved due to the increased iron. She used to just lie around, staring into space for periods of time everyday. She no longer comes home from preschool hyperactive (jacked up on sugar and starch at school) and no longer super emotional. It's paradoxical: her energy improved overall but she's not hyperactive anymore. The strange thing is, her pot belly got bigger on the new diet, bigger than when she was constipated. A few days after beginning the new diet, her belly became grossly distended -- she was panting like she couldn't breathe, her bottom ribs were bowing outward, her belly was rounded out even on the sides, and she couldn't reach her toes. She looked like a malnourished child in a famine-ridden African country. I figured her body was learning to digest real food instead of the processed junk she was eating at school and it was adjusting. Her belly got a bit better after that but it's still enormous, even more than when she was chronically constipated. Her belly bothers me. I know some kids still have a pot belly at the age of 5 but this is not normal. Hers is huge. Her shirts are now too tight around the belly; I have to tug them down over her stomach. I'm getting tired of people blowing me off about her belly and my instincts are telling me that this isn't normal. Is it a sign of vitamin deficiency? Celiac? Anyone experience this with their kids? Isn't the upper endoscopy the gold standard in celiac testing? Can she still have celiac and test negative on the upper endoscopy? I know more about celiac for adults than I do for kids so I feel like I am in unknown waters here. Any ideas? Tips? Thoughts? Anything I should bring up to the doctor on the next visit? Thanks- Diana.
  4. I have DH and was diagnosed just over a year ago (while pregnant with my daughter) so I am still learning about eating gluten-free and still accidentally glutenating myself every now and then, especially since giving birth. I breastfeed my baby and I've read that gluten is passed through breastmilk. As far as I can tell, DD hasn't reacted. I've seen some tiny suspicious bumps behind her ears with a couple of big red bumps on her legs (could've been bug bites). They don't look anything like my DH bumps (blisters, scabbing, etc) but I am not sure if they would manifest differently on a baby. She doesn't seem to have any tummy issues. She isn't fussy, passes gas happily, and her bowel movements look pretty normal with an occasional hard stool which seems related to when I forget to give her water with her solids and when I don't give her enough green veggies. One other thing that I could point to as a possible sign is that at her 6 months check-up, her growth seems to have slowed down a bit by dropping down in the percentiles even though the pediatrician wasn't concerned. Anyway, my question is this: If gluten is passed through breastmilk and DD hasn't reacted, should I try giving her gluten (oatmeal cereal or Cheerios) to see if she reacts? I think I read an article somewhere about babies being introduced to gluten at 6 months and not developing celiac and at 8 months old which led to celiac - or something like that. My pediatrician wants me to give DD gluten now, before 8 months, and I disagreed but now...I'm wondering if I should. My original plan was to keep her gluten free until she could talk and tell me if she has tummy troubles or itchy skin (I don't want to try and figure out what's happening when she's unable to communicate right now!) but if I give her gluten now and find that she is reacting to it, then I would just be back to my original plan to keep her gluten-free anyway. Sorry this is so long. I appreciate any input.
  5. My first pregnancy (which ended in miscarriage) last year triggered my DH. I became pregnant again three months after the miscarriage and was diagnosed with celiac while 8 weeks pregnant. I immediately went gluten-free and DH subsided. I cheated several times (powerful pregnancy cravings) and had very minimal DH reaction during the pregnancy. Since I had very little DH reaction, I assumed I wasn't sensitive to cross-contamination so I never replaced any of my kitchenware. Since having my baby 5 months ago, I've had several DH reactions and currently suffering the worst reaction -- and I'm not cheating on my diet. My poor bum is covered. So are my knees, tops of my feet, underside of my chin, and a new one today - a tiny blister on the side of my nose. So, I'm realizing that the last year of being gluten-free has not been normal since a pregnant body is an altered body (pregnancy suppresses the immune system) so I'm starting over again from square one. I've been in the process of examining and tightening my diet and found my prenatal vitamins (I'm still taking prenatals as a lactating mother) had 100% of DV in iodine - which I immediately chucked away. I found new gluten-free prenatals with no iodine. Now, I'm looking at my kitchen and feeling overwhelmed - where do I start? It's been a year since I started cooking gluten-free so is it possible that my pots and pans are free of gluten residue by now? My husband is gluten-free with me in the house so there are no worries about cross-contamination on surfaces, handles, etc. Another thing I need help with is make-up and hygiene products. I wear Clinique foundation powder. Has anyone done research into Clinique products? What toothpastes are taboo for celiacs? I use whatever is on sale - Aquafresh and Crest generally. I use Garnier Fructis moisturizers. Suave bodywash, too. I can't think of anything else I should be looking at. All tips, links to lists, or whatever would be greatly appreciated - esp if you guys think I still ought to replace my kitchenware. Thanks!
  6. I'm also pregnant (3 and a half months) and a celiac. I was diagnosed with celiac when I was 7 weeks. I brought it up with my obgyn. They gave me gluten-free pre-natal vitamins (ask about those) and told me that as long as I gain weight and stay on gluten-free diet, then I should be fine. I will see a different obgyn (in the same practice) next week on the 13th and I will ask about the celiac again. If I find out anything, I will come back and post to let you know. If I were you, I'd keep bugging your doctor or maybe finding another doctor. It seems that doctors I have talked to are largely unconcerned about celiac in pregnancy. Even my allergist who diagnosed me wasn't concerned about my baby except that the baby may inherit the disease. As far as taking more than just pre-natal vitamins, I don't know about that. I do know doctors may give you DHA (fish oil) but it's not necessary. It's simply a good idea to but not necessary. They make me deathly sick and the doctor said I didn't have to take them. Our parents didn't take it with us so apparently we turned out fine. I don't think you should rely on pre-natal vitamins alone -- you should eat well, also. You can ask for DHA if you want. Please don't worry about your baby (I'm talking to myself, too). Eat well, exercise, and get sleep. I have a friend who was an undiagnosed celiac the entire time she was pregnant and she ate a normal diet with gluten and her baby turned out fine. She was diagnosed a celiac two years after her baby was born. I'm not saying you should eat gluten but just have faith that everything will be okay. Be encouraged!
  7. Thank you, friend! I most definitely would not risk hurting my baby and so far, have not had any temptation to give into those cravings. I am absolutely strict with my diet and I wouldn't have been if I wasn't pregnant and had no one else to consider. I didn't want my ob/gyn's lack of concern to lull me into a false sense of security and later, I'd weaken and give into cravings but right now, I'm definitely resisting them. After my miscarriage, I treasure this baby SO much and we're overjoyed that my baby is okay! And many thanks for suggesting Pamela's -- with my stomach being so unpredictable, I'm hesitant to try gluten-free products since I never had any of them before. I will try Pamela's!
  8. I've been browsing this forum for a while and decided to join. I am almost 12 weeks pregnant and was diagnosed at 7 weeks with celiac. I had the skin lesions for 5 months when I finally went to the dermatologist who misdiagnosed it as eczema. I felt suspicious about it and waited two months before deciding to try an allergist. I found out I was 3 pr 4 weeks pregnant right before my allergist appointment and let him know about it at the appointment. He looked at my lesions and decided to test me for celiac and three or four weeks later, reported that my blood test came up positive for celiac. I went into a panic because I though I might lose the baby. I'd gone 7 weeks already into the pregnancy eating gluten. I called the allergist back and he was absolutely positive that the baby will be fine and that my previous (I had one earlier this year - in March 2008) miscarriage was unrelated to celiac. I've had two ultrasounds so far and both times, the baby measured perfectly at where it should be in the gestation. Yesterday was the second ultrasound and I was 11 weeks and 3 days and the baby measured 11 weeks and 4 days. I've already lost weight between the gluten-free diet and pregnancy woes (morning sickness, aversion to food, vomiting, etc) so I was worried that the baby was not getting nutrients, even though I am taking pre-natals. My doctor yesterday seemed really unconcerned about the celiac. He said that as long as I gain weight starting in the 2nd trimester, the baby should be fine. My question is this - is my doctor being too unconcerned, blowing me off (both allergist and OB/GYN unconcerned), or is he valid in his lack of concern? Another question - since I'm new to this diet, still learning and accidentally glutenating myself, does the gluten hurt the baby? The baby looks great and measures great in the two ultrasounds I've had so far but if I lapse later and eat something with gluten in it - like a funnel cake I've been craving (argh!)? My biggest worry is for the baby -- will he/she be okay if I eat gluten? What are the effects on the baby? Thanks for all your help- Diana
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