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HELP!
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Help! My 4 1/2 yr old son WITH DOWN SYNDROME has somewhat been diagnosed with Celiac Disease...I think. He's been having a lot of sinus infections this past year and his Dr did a recent allergy test. I've just recieved a call from the Dr's office saying he's mildly allergic to wheat and corn and they have mailed me a list of what is acceptable and what is not. The diet is for people with celiac disease. I will not be able to confirm this with the dr's office until Monday so that's why I'm unsure about this. I am aware that Celiac disease is pretty common in people with Down Syndrome. My question is this....where do I begin? I'm overwhelmed! Everything in my house countains gluten I think! I also have a 13 yr old and a 2 yr old so I'm not going to be able to let them eat what Jacob likes and can't have in front of him. That would be cruel!!! Any suggestions from the pros??? Where do you get the special food products? Any helpful advice would be soooo appreciated.

Thanks in advance,

Tracey

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Hi Tracey,

Im not an expert at this.........yet. I was just recently diagnosed with celiac disease ( blood work) and b/c my children (2 year old twins ) have had some significant health issues since they were born, I decided to have them tested as well. I have recieved the results from the blood work, but have not seen the Dr until Wed. I do know that it looks like they are positive as well, so I am doing the same thing you are. Going through the pantries. When it was just myself...I made my own pantry of things that were gluten-free. However, now that my kids are both likely to be celiac, my plan is to make my house gluten-free. IF my husband really wants to although he is very supportive, he could have his own cupboard. Depending on what the Dr says you may want to check your other kids out too. Celiac is a genetic disease. If your son has it your others may have or possibly have it in the future. Something to consider.

I buy my special flours from the health food store. For the most part everything else I can by from the grocery store. I know it seems overwhelming at first, but the shopping part and finding appropriate foods is not that difficult. There are some product listsings on the web, that can help you find just about any kind of food, you just have to find the right brand. Take one step at a time, and the people here are great! Just hang in there. Im still in that waiting process to, but you may find that your sons health issues improve. It's worth the inconvience Im sure.

Please let us know

Laura

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:) Hi Tracey,

My son is 4 years old and has a rather sensitive wheat allergy, but does not have celiac disease, according to our pediatrician. We've been attempting to keep him wheat-free for approximately 2 years now, though I still wouldn't consider myself an expert. I learn something new all the time.

I know it can be very overwhelming to try to keep wheat out of the diet at first, as when you read labels it seems EVERYTHING in your entire pantry has wheat as a staple or supporting ingredient. You've come to the right place though. The people at this web site are very friendly, experienced, knowledgeable and helpful!

My first piece of advice would be to keep coming here, on an on-going basis.

My second piece of advice is to get into contact with your nearest local chapter of a Celiac support group. They are good for letting you know specifically what products are available in YOUR area, as well as which ones could be substituted for those that aren't available in your area.

It would be important to know whether your son has actual celiac, or a wheat allergy, as with the wheat allergy alone, the diet can be slightly (though not amazingly) more liberal. For example, my son can eat regular Rice Krispies, which folks with celiac must avoid, because of the barley malt in the ingredients. For the most part though the wheat-free diet is very, very similar to the celiac diet, as wheat is still the main offender. That's why learning from people experienced with celiac is the best.

As for your son having to stand by and watch the other kids eat things he cannot have, Once you catch on to a few products which he likes and can have, he will likely accept substitutions well. Many things can be substituted exactly, for example, Logan loves rice crackers with cheese or peanut butter when the others eat Ritz crackers with cheese/peanut butter. He knows that the crackers the others are eating are "wheat" crackers which make him feel yucky, but his yummy rice crackers won't make him feel sick, AND I think he gets somewhat of a kick that the others can't have HIS crackers, they are exclusively HIS. THEY think it is a special treat when they are allowed to have some of HIS special foods. Before I went shopping yesterday to restock his own wheat free pantry, I had nothing for his breakfast, so I let him have a can of Campbell's chicken and Rice soup for breakfast. He thought that was neat.

One of the first things that I was mortified that Logan wouldn't be able to have was pasta, as he loved pasta. My local celiac group suggested the Tinkyada brand pasta made with rice flour, and told me exactly where to buy it locally. We discovered the cooking time is slightly longer, but the cooked pasta is almost identical to the wheat flour type.

Do you bake? I've just finished baking a batch of banana chocolate chip muffins for Logan using a combination of rice flour/potatoe starch/tapioca flour, and guar gum (which replaces the stickiness of gluten), and have two loaves of bread in the oven for him for the week ahead. I have some cupcakes I made for him in the freezer, as well as a few brownies. His own pantry has a bag of Mi-Del brand chocolate chip cookies, Mi-Del oreo style cookies, and he just finished his Mi-Del animal crackers off yesterday.

We try to keep the "tempting" wheat products like cookies, up high in our "WHEAT PANTRY", but his safe rice flour cookies are reachable in a pantry in the opposite side of the room. He still needs to ask permission before having a treat, but if he happens to sneak as kids sometimes do, he usually gets into a wheat-free snack. At least that way his appetite may be ruined, but he won't have a reaction, which are pretty dramatic.

I wish you luck in your new adventure with providing your son with a wheat free diet. Come here often, and ask plenty of questions. The folks here really are a wonderful support network. If you'd like I could share a couple of basic recipes, brands of soup, treats, etc. with you, as my son is also wheat free, (to the best of our ability).

Oh yeah, and the Dana Korn book "Raising Our Celiac Kids" is also a great resource.

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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
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