stanleymonkey

Our daughters ped told us gluten intolerance does not make you anemic but celiac disease does. I don't know if he's 100% correct but that's how we got a diagnosis

We are in Vancouver bc children's does all the leg work, we are going to see a respirologist the ENT said it would be quick....hopefully

Ranitidine can make you feel kind of off, my daughter didn't tolerate it well, she was so sluggish on it

With medication lines they have to wash them down really well between lines. They can't afford to have cross contamination of medications as it could potentially interact with another medication, or kill someone. They have to adhere to much stricter conditions than food manufactures, hence the factory that makes buckles being torn apart because of teeny tiny issue with following the rules.

I wouldn't worry

The first few times my daughter accidentally had gluten she had no visible reaction, but that doesn't mean damage isn't being done inside. Now even a tiny bit renders her useless for a week. Unfortunately celiac testing in kids is not always reliable, my daughters bloodwork was negative but she is so I'll from gluten that the GI said it could kill her. Celiac or not, gluten makes her I'll, we won't let her have intentionally. We explained that it hurts inside, and if she can feel it that means it has done lots of damage.

You are going to have to be strong when she wants some gluten. We were lucky both our kids were taken off gluten when they were very young so they don't know any different.

It might be helpful to have some gluten free cupcakes etc in the freezer to defrost and take to parties. We ask people what they plan on serving and try and get something very similar. It will get easier, food is only a tiny part of life, and she'll adjust, just stand firm on the no gluten rule. it may seem mean at first, but in the long run she'll get used to it, and it will be just be part of life.

So many people on here have been there, and I'm sure can offer more strategies to help you and your daughter

We are in canada so everything is done through referrals, so they are pushing things through as fast as they can. We know who we want to see. My eldest saw a gastro so the sibling connection helps speed things up as well. Also thankfully for kids they do a vial blood test for iron. It's just a waiting game waiting for departments to sort out things.

She was aneamic but her last iron levels were really good. The things she spits out 6 months ago she used to eat. After she spits things out she starts crying that she's hungry. pICA was discussed but last time she even licked walls, ate her shoes, her sister, anything was food to her and she ate it! There main reason for questioning EE is regression, everything she used to eat she no longer does, she wants to but she won't/can't. Yogurt and eggs disappear quickly, she had 2 scrambled eggs for lunch yesterday and a yogurt at bedtime. She was offered gluten free pizza, but all she did was pick everything off and lick of the tomato sauce.

They want to do a sleep study before even thinking of surgery thankfully. Our ENT is firm on sleep study before surgery. She's lost weight so the allergist will definitely push for an EE investigation. Today she ate scrambled eggs and yogurt, everything else she was given she chewed and spat out.

With young children the testing is very unreliable, our ped told us to stop with the testing route with my youngest and diagnosed celiac based on symptoms, and the fact her sister had the genes for celiac disease.

We went through hell trying to find out what was wrong with her sister, and got an official diagnosis of reflux.

An official diagnosis can be useful for school etc, and even medical insurance if you have to get specific meds to ensure they are gluten free. That being said in toddlers testing is often unreliable and some doctors seem so uninformed. Maybe someone in your area on this forum might be able to recommend a good doctor who is well informed, if you have a good doc the process hopefully will be easy

Our ENT was really clued up about EE so hopefully he sends us to a gastro who is. The intern who did our initial consultation had never heard of it.

Her tonsils are normal size and the ENT said he won't remove her adenoids until he knows for sure it's obstructive apnea.

We already have an allergist, and she knows a lot about EE and she wanted our eldest scoped for it, do I know she'll push to get things done right.

We've already started a food diary. Seasonal a allergies being a trigger wouldn't surprise mits sneeze city between my eldest, their dad, and grandmother!

That's awesome. We found a licorice store near us that has gluten free licorice, and makes their own gluten-free waffles, the grind their own flour! It's so nice when you find somewhere safe. We found a 100% gluten-free bakery, everything made from scratching their store, the look on my 4 yr olds face when I said pick what you want, of course being her she choose the cheese bread with extra cheese!

We had an appointment with an ENT on Wednesday and may have found the best doc ever. Our 26 month old was sent to see this doc due to snoring, suspicions of apnea, and regression in eating. We were talking about her other health issues and mentioned she was gluten free because she had issues when she ate it such as constipation, rashes, screaming, and anemia. Told him our ped said to assume it was celiac, and he said if our ped ( who is also his kids ped!) said celiac it's celiac! Finally an official diagnosis for 1 of my little monkeys.

On the negative side he suspects EE, which I knew more about than the resident who was with him as our eldest was supposed to be scoped for it a 2 as well. We were just expecting to be told she need her tonsils and adenoids out. They also suspect central sleep apnea.

Anyone have a child diagnosed with EE this young?

If your throat swells you need to get a prescription for an epi pen from your doc

As for cleaning I found when I had an all tile bathroo, we are talking walls and floor with a drain in the middle, tide free powder was awesome for cleaning, used it in the toilet as well, wet everything sprinkle it on scrub and rinse, was so much better than any other cleaners

Our GI refuses to test her, he told us she had no issues with gluten,mans no chance of EE even though her allergist said she did.

He diagnosed her with reflux, and told us not to change her diet. After her getting even sicker, we cut out gluten. She miraculously got better. We went back to him and he told us off for removing gluten, said if we kept her on it he would of scoped her. Asked if he would scope her if we put her back on gluten, he said why would you want to make her so sick, a gluten challenge could kill her. Ummmmmm he said she had no issue! Our allergist was furious wishes she had seen her first she said she would have diagnosed her on the spot with celiac disease based on her symptoms and genetics, and would have made them scope her for EE.

Our official diagnosis is possible gluten sensitivity.

Our allergist thought the high eosophinol count could have been her immune system was so taxed with the gluten it was just doing what it knew best...make allergy cells. A high eosophinol count means he is reacting to something. Skin prick tests are unreliable, food allergies come from eating something and it entering your digestive system, not putting it on your skin! Our daughters skin prick for milk was a tiny hive, but ingesting it sent her into anaphylactic shock. Keep a food diary, allergic reactions are not necessary the full hives, vomiting, or anaphylaxis type. Kiwis makes my hands burns. Keeping a diary you may find something that makes him a bit "off".

As for celiac disease, the testing in kids is very unreliable, especially the younger they are. When my youngest starting showing symptoms and became anemic our ped said forget all the official testing cut out gluten for life, and assume its celiac disease waiting for a positive test is just going to make her really I'll and do irreprable damage.

The high lymphocytes could be from a virus he had, my youngest had croup and a month later the doc could tell she been Ill just from her blood tests, lymphocytes take a while to come down after a virus or infection.

Our daughter had a high eosophinol count and we were told she had an allergy to something and was reacting, our allergist did skin testing and wanted our GI to test for eosophiniloc esophageas ( sorry can't spell it), of course he refused

Corn pasta is also good

Does she snore as well? My youngest started gagging and choking which was surprising as at 11 months she was eating spare ribs with 3 teeth, then at about 18 months had to go back on baby food. She is getting her adenoids checked on Wednesday. I second an occupational therapist, our ped went that path first, they were helpful, there was no issue, but they still gave suggestions on how to deal with the gagging

If she was off gluten for a while 1 slice of bread for 9 weeks may not be enough.

I don't understand why they won't accept the diagnosis of the er. Perhaps you could get the, to get in touch with your new doctor. It's like being diagnosed with cancer, having chemo, then the new doc saying I see no tumor after your 6 months of chemo so you never really had cancer to begin with.

Get all the medical records letters etc for your new doc and if he won't accept the diagnosis get a new GI. Some docs can't think out of the text book.

Our daughter had an allergy to milk. She outgrew it but we limit it. To help her system we rotate between non dairy milks and cows milk. Try almond yogurt yummmmmmy!

We also mix daiya gluten-free dairy and soy free cheese with regular cheese in things.

Baking changes the molecular structure of egged and milk so you don't need to worry about baking. Our allergist said most people with milka and egg allergies can tolerate them in baked goods. Our daughter never could but she was anaphylactic.

If you create a rotation system it should help

You may find when she is prescribed something a pharmacy finds it easier to identify gluten-free name brands than generic.

I joined a Facebook group for Celiacs in my area thinking they would be able to provide support, they know the area, the stores etc. the lady running it has been driving my crazy. Someone asked about tax returns as in Canada you can get some of the money back. I mentioned my experiences with the tax people and she kept going on about celiac this and celiac that. Which unfortunately is the way the tax people are, it's either you have celiac disease or no issue with gluten all. She seems to be unaware of the term gluten intolerant, it's all or nothing. When you mention ncgi she goes off about celiac disease.

I got mad and let rip, telling her that not everyone is (un)lucky enough to get a clear cut diagnosis, the testing is not always accurate and in our case when you have young kids seriously ill you can't wait and hope for a diagnosis you sometimes have to say screw it and go with your gut. She does not get that celiac disease and ncgi is not a black and white issue, and belittles the people that are self diagnosed.

My 4 yr old is very irritable after gluten, I n the other hand get irritable after talking to the GI at our local kids hospital!

You need to see a different doctor. We were told because our daughter was around the 25 th percentile for height and weight and had been since 6 months old she could not possibly have celiac disease or any gluten sensitivity. WRONG! Gluten free she grew 3 inches in 3 months and put on 4 pounds, she jumped to the 50th percentile for height and has stayed there for 2 yrs. yes , she was in proportion, and we were told she was on the smaller side because her dad and I are, but she obviously wasn't following her really growth pattern

Our daughter is 4 but we have taught no ingredients no eat. She isn't afraid to tell people I have to ask my mummy first. The only person she readily accepts food fromis one of her aunts who totally gets it, and calls if she's unsure.

One thing that might be worth doing for things you buy and send to school, is to make a sticker that says wheat and or gluten free and has his picture or a picture he likes. Then when he is in the care of others they know he can only eat food with that sticker on. As soon as we unload the groceries we do it, and it makes it very easy for my elderly in laws to know the kids are getting safe food. My 72 yr old mil surprised me, we were in a chocolate store and she asked for an ingredient list for their products. She explained the file to my eldest.

You'll be very surprised at how quickly he becomes an advocate for himself if he sees the other people around him doing it to. Just wait until you are at a family dinner or something and he refuses food from someone because he knows he can't eat it. My then barely 3 yr old said in response to a family friend who insisted she ask me if she could have apple pie, I don't need to ask her I know pie has gluten and dairy and egg in it I can't eat.

Betty Crocker makes a great gluten free chocolate box cake mix. We had it and didn't tell anyone and no one noticed!

As he has an allergy, get your doc to write a letter to th school outlining his allergy, and his recommendations, and include a letter from yourself outlining what you need the school to do. Talk to his teacher, and the principal. As overwhelming as it may seem, schools understand allergies a. Million times better than celiac disease. A simple, he is allergic to wheat andif he eats anything with it in or that has touched it he may go into anaphylactic shock, will be all you need for them to comply.m ask your eoc for an epipen as well if he thinks his allergy is that serious.

Our daughter had anaphylactic allergies, and now has gluten intolerance. I'm more worried about the gluten issue in kindergarten next year than I ever was about the allergies. The reactions to allergies are usually more apparent so they listen!