Mizzo

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.

4 minutes ago, Rowan13 said:

I'm trying to avoid potatoes and every pre made flour I've checked has potato starch. (I also can't eat buckwheat) Do you think it is possible to bake bread or pancakes, etc, without potato starch? I would just make my own flour but why is potato starch in everything? What does it do for the flour mixes?

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!

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

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 

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.  

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.  

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

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

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. 

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 !!

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

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.

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

Yes, she should have a 504 plan.  I found a lot less food issues when my daughter was in Jr. High but...  They were required to use wheat pasta to build a car in science class.  And because they used wagon wheel shapes, I couldn't just send in gluten-free pasta.

 

As for the eating...  Good luck with that!  This is the age where girls in particular, do not want to eat at school.  My daughter tells me that the other kids don't eat so she doesn't want to either.  The best I could do with her was get her to take some baby carrots or apple slices to school.  But she is overweight.  And that presents its own problems. 

 

I just try to make sure that she eats well before and after school.

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.

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..

For the house:

in mason jars put in your favorite pancake/waffle or pre-seasoned rice recipe (add liquids when you get there)

I would pre-clean/cut and marinate my own meats and bring them frozen ( easy enough to defrost and cook later)

one night try a do- it- yourself baked potato bar with all the fixins

another time try taco night you can even make the taco bowls using the upside down cupcake pan method 

For the amusement park:

bring a jar of PB and jelly or fluff with bread for sandwiches 

Hard cheeses

salami

olives 

pickles  fyi they have individual size serving pcks of olives and pickles in the stores :-)

pre make a huge batch of your own granola and/or trail mix     you can eat it plain or buy milk for a cereal type meal

I feel like I live in the kitchen for 3 days prior to any get-away vacation  lol

miralax  is  a  safe  non habit  forming medication... its  things  like  "EXLAX"  &  things  like  that  , they  are  habit  forming &  one  can become  addicted  so to  speak. Plus  they  can  make  a  weak  colon  stop  trying all together..I  would  stay  clear  of those  drugs.... another  one  is  mineral oil  which is  a  safe one. But  again for  daily use  I  would  stick to miralax  &  maybe  add in  Alig

Levothyroxine   may not  take  care of  her  thyroid  but  mainstream  docs  will only  prescribe  the  synthyroid  or  generic  drug.... sad  in my book.... I  almost  fied  on  that  stuff....I now  take  whole  glandular  thyroid  med  &  got my life  back....after  seven years  of  hell....

What is Alig ?? Why might Levothyroxine not work ???

Is they thyroid issue being treated?

she started Thyroid medicine 5 days ago

Hi all,

My DD has been gluten-free for 3 yrs. We have prior to and still currently are dealing with excess stool in the colon. We have been told to treat with Miralax and he occasional weekend of Exlax "clean out" . The Dr's keep saying its safe to treat her with miralax daily but I don't feel good about it.  Anyways, to add to her problems she has been seeing a Endo for 5 months and is now on the medication Levothyroxine.   

I have read that constipation can be a symptom of Hashimoto's disease (which is what she tested positive for ) 

ANyone with similar experience ?

I am hoping the poor kid can get some respite from the miralax etc.. 

As far as restaurants go I ALWAYS call ahead and get their kitchen practices otherwise you leave yourself wide open for disappointment.

I have dealt with this attitude with Girl scouts leaders, parents and teachers.  There is little a person can actually do except explain in the most clear of ways the situation and hope for the best.

example :at an overnight girl scout camping event I was told my girl couldn't have 2 hotdogs cause the other girls only got one. The fact that they had rolls and mac n cheese came up but was squashed down by her ignorance. I could stand there and fight with the leader in front of the entire troop and other moms but that would put my girl in an embarrassing situation.  I quietly gave my girl my hot dog when she wasn't looking and dealt with it later, which has led to a 2 year war over food in the troop.   

example 2: A zoo camp counselor asked me many questions, got product names and grocer names to shop at and now supplies gluten-free food at the camp with very good kitchen practices.

Sometimes you win sometimes you lose. It really depends on the person you are dealing with. good luck

Well firstly and most importantly big CONGRATS on the weight gain. Based on your numbers she really needed it and to gain +70% of her weight is fantastic. 

Quick question did you say completely gluten-free in home ? because you also said she has her own cutting boards , toaster etc...  so is the home 100% gluten-free ?

If not there is always a way to get CC in a mixed house, crumbs on the counter ,  utensil drawer, knife block  etc.. but that number does seem high.

She may be highly sensitive, is your food all labeled gluten-free or are there products made in facility that processes wheat etc.. ?

We are following up with a Neuro and  Rheumatologists in May (earliest appt) but since none of the Dr's want to discuss food related potentials (I think because they don't understand them) I was curious if there are others out there with this happening. In the meantime I will plug away at the food diary and watch out for things.

BTW we had 2 Dr./tests on the thyroid both in confirmation she has Hashimota's but that her recent numbers are too low to warrant meds.

My 10 yr old (Celiac and gluten free 3 yrs) has been experiencing these symptoms along with occasional mood swings. the headaches and body pains usually go together and the low grade fever ( 99.0- 99.5) has been intermittent. She sometimes has fast mood swings and anxiety too. 

She was dx with Hashimota's disease but her TSH level went from 8.8 to 5.5 in 3 wks (avg 0.5-5.3) so Dr says she does not need meds just to watch for fatique, weight gain other symptoms

I started a food diary but it's too soon to be sure of anything. I stopped Artificial sweeteners to be safe. 

Mood swings and anxiety was dx as results of Pre-pubescent and school worries. Based on how and when she has them I can see this as good possibility.  

But with all her other symptoms I am just wondering about Soy , Casein etc...

Headaches, fevers and body aches are 4-6x week.

Anyone experience these symptoms with food allergies ? 

thoughts appreciated 

Hi Everyone,

Have you had or heard of a child growing teeth without roots? I'm at the dentist now and she showed me xrays of my 4yo who had a major cavity. she saw that tooth and the one on the opposite side have no roots. She said the only time she's ever seen it is because of chemotherapy. DS has gluten intollerance (I still think celiac though tests havent supported that). I have cobfirmed celiac and was active and eating gluten when pregnant and probably for 25 years before that.

Megan

It's my understanding, when the teeth are ready to fall out the roots have eroded. The adult teeth that are coming in cause the roots to be reabsorbed into the body. That is why when baby teeth fall out you NEVER see a root on them. Maybe the new ones are ready to come in ??

You can get gluten free graham crackers from Kinnikinnick called Smoreables and buy or make the remaining ingredients.

FYI the gluten-free crackers are about half the size of regular so it makes a small house