Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

22 Excellent


About Mizzo

  • Rank
    Star Contributor
  1. My daughter had severely atrophied villi when diagnosed. In 2 weeks her symptoms significantly reduced but it took almost 3 months for the majority to go away. It does depend on each persons damage and whether they are high or low symptomatic . I think its fair to say give it at least 2-3 months to see the majority of symptoms reduce. FYI playdoh was a HUGE problem for us as well as some school stuff like macaroni art, shared snack table , birthday parties . Get a 504 in place beforehand to make things go smoother.
  2. try this recipe , its he best homemade rollup / lavash type bread i have made Gobsmacked rollup bread - no rise recipe Ingredients 1 cup fine brown rice flour 1/2 cup tapioca starch 2 Tablespoons sugar 2 teaspoons xanthan gum 1 Tablespoon instant yeast 1/2 teaspoon salt 3/4 c. water 1 teaspoon cider vinegar 2 Tablespoons (Extra Virgin Olive Oil) 2 eggs 2-3 Tablespoons sweet rice flour (save for dusting pan/hands) Directions Mix together all dry ingredients (brown rice flour, tapioca starch, sugar, xanthan gum, yeast and salt). In a heavy mixer, combine wet ingredients (water, vinegar, oil, and eggs). Slowly add dry ingredients to well blended wet ingredients. Beat on medium/medium high speed for 4 minutes. prepare a large jelly roll /cookie sheet pan with oil and lightly dust rice flour Scrape dough onto pan and press as thinly as possible. (fill pan)In order to make the spreading easier, oil parchment paper (cut to fit my pan) and then press out the batter. Using a fork, tap indentations across the entire dough. Preheat oven to 425F. Bake for 11-15 minutes or until the top is slightly browned. It will come out of the oven with a slight crust that will go away as the bread cools. Allow the bread to cool 30 minutes before using. It will become flexible and soft. Cut into large pieces to use as a folded sandwich bread NOTE: Leaving the bread wrapped in a ziplock on the counter overnight will preserve the flexibility. Do not refrigerate!
  3. BTW when they do the endoscopy the child is put to sleep with a mask first before inserting the IV. That helped a lot for us. We started with my 7 yr old flailing and kicking the nurses who wanted to draw her blood to 4 yrs later her saying , ugh, not again. it does get easier, and in life she will need to get blood work done at some point . Dee made some wonderful points about prepping her , talk to your Dr's about it. In addition to StaphanieL list : If you need accommodations for college you will need DX . In reality you have no idea about your future , where she will be and who's care she will be under on a daily basis and a DX really helps others to reinforce her needs good luck Maureen
  4. We have been gluten and nut free in school for years. However, my DD can have rice so eliminating that certainly makes it very challenging. Do you have someone with nut allergies in your child's classroom ? If you don't , you may have lotz of wiggle room with the (made in facility rule ) if you do you should start with a request for change in classroom . There may not be many rice free/nut free packaged foods but home made meals can be supplied and we have had usage of microwaves in school for years . Start with a sit down mtg with the principal, I have found them to be more accommodating than expected. good luck
  5. Honestly you will be overwhelmed with this for awhile, but, you will figure it all out and no matter what your child will get better. Ask any and all questions there are tons of great idea's here. You are not alone !!!! We have all experienced mistakes and wins with our kids, ourselves and our families.
  6. I personally would say NO to all Gluten containing items and supply my own mat to be stored separately. Cross contamination is a real threat in the classroom. My 504 plan is clear on this and I have even talked to the teachers about having kids wipe desktops top to bottom as when they will wipe side to side and they were just flinging the crumbs across the desks.
  7. My daughter was dx through blood work then confirmed with an endo at 7 yrs old. You need to be back on gluten for approx 6 weeks. good luck
  8. Well I don't know of any relationship between Asthma and Celiac ., but that doesn't mean it can't exist. There are levels of allergens in different breeds of cats and dogs . The Siberian and Oriental shorthairs cats don't affect 75% of cat allergy sufferers and the Balinese, Javanese, Devon and Cornish Rexes and Sphinyx are also less allergen. Many Terriers and Poodles are also "hypo Allergenic". So his level of reaction could be breed based , maybe? Also females have less of the allergen enzymes as well as neutered males vs unneutered males, light colored coats vs dark colored coats etc...just a thought !! I only know all this as I am severely allergic to cats and lesser to dogs. My husband and daughter are CAT people and I am trying to find a breed to work for us. :-) I have had to use a nebulizer myself when I had respiratory problems , It worked tremendously. good luck
  9. Everyone is different for us my DD was 7 at the time with completely atrophied Villi . Sleep -1-2 weeks Bowels - mildly better in 2 weeks but she had underlying issue's with Lactose( we didn't realize for 2 yrs) and a undiagnosed Thyroid problem Behaviors - they got worse before better , almost 2 months sensory issue's - about a year Gassiness - years due to lactose intolerance and Thyroid problems If I could go back I would immediately cut out as much lactose as possible to get a better picture in the beginning. We switched to Lactaid and hard cheese or lactose free cheese and eating yogurt at near room temperature and it's made a huge difference almost immediately.
  10. Migraines are certainly common. Smartwater helps or taking a magnesium tablet and eating a banana a day with PLENTY of water daily can help too. Keeping my DD super hydrated with a magnesium tablet 3 x week reduced her migraines by 80 %, but that's us!!! You can try switching out Lactaid for regular milk and use hard cheese like cheddar for a bit see if it helps with any tummy pains. Stay away from any non gluten-free oats. It may take weeks/months ( it took us 2 months) before you see big changes and he may go thru some personality/emotional issue's while that is happening. Is your whole house gluten-free , if not triple check all his pots/pans /toaster etc... hidden gluten is everywhere good luck !!
  11. not so healthy but easy: Fruit by the foot Fruit snacks Tortilla chips n salsa gluten-free Nature valley granola bars Frito's plain or BBQ Dorito's nacho cheese or cool ranch Utz potato sticks, cheese balls, chips
  12. Ahhh Girl scouts : the parent volunteer run program I have had mixed responses with this. Our passed troop leader did little to nothing to accommodate a gluten-free or mostly gluten-free environment for the troop mtgs or day events. New leaders this year so we will see. On the camping events and overnighters we have had really exceptional help in insuring a safe food environment. We got lucky the day camp had a nurse with a Ceiiac child and the overnighter food events was run by a woman with gluten intolerance who actually brought her own pots pans etc.. in for herself and the kids. It really is how the leaders receive and react. You have no control over it. On one daycamp BBQ event I sent everything except drink and bagged chips. It included Hot dogs wrapped in foil , bun ,sides , a smores baggie with her own toasting stick etc... on another overnighter event i sent a smore's pack and a backup snack bag. Situation's vary depending on the volunteers. Call and speak to whoever is in charge in advance.
  13. If you have the option of volunteering for lunch duty for 1 or 2 days, that can give you the insight you need regarding cross contamination at lunch. My DD is 10 and in 5th grade and they have switch classes. If your girl has the same make sure the switch desk is being wiped down after snack time. Also a snack/lunch mat brought from home will dramatically cut down on CC issue's. Keep up the food diary for a while you may notice a trigger like dairy, soy, oats or corn. Probiotics are a good idea. My DD has multivitamins,Omega 3 and Fiber gummies everyday. We are 3 1/2 yrs gluten-free and she still has constipation issue's with the opposite happening when we use Miralax, and with the added DX this year of Hashimota's disease there is always something. My girl doesn't eat veggies so until that changes for us, it will always be like this. good luck
  14. My DD is entering 5th grade and I just finished our 504 plan which we will present in a couple of weeks. She is also dx hashimota's disease, overweight and doesn't eat any veggies except carrots and only 4 fruits ,which is proving difficult if damn near impossible to control her weight and constipation issue's. I have included in my 504 the option to use a safe microwave which I will purchase if necessary, I am hopeful this will provide options we never had before.
  15. My 10 yr old DD is 3 yrs gluten-free with a dx of Celiac. This year she was also dx positive Hashimota's with elevated TSH levels. We started Levothyrozine 5 weeks ago. So far all is great. She is not as tired , no more leg pains, better attention span and less anxiety . In addition her 4wk followup shows perfect TSH levels. It all depends on the person and their reaction to the medication, for us it went great..