Celiac Disease Support Group
Celiac disease is an auto-immune disorder of the digestive system that occurs in genetically-predisposed individuals. It is characterised by damage or flattening to all or part of the villi lining the small intestine, which interferes with the absorption of nutrients. This damage is caused by eating anything with gluten (gliadin), a protein found in wheat, rye, and barley...
My name is Janet. I have a 14 year old daughter that was diagnosed with Celiac's Disease on September 17th of this year.
What I need right now is help. Not a condescending remark about how I shouldn't waste time and do the research myself. (Not referencing here. Another group) I need someone to explain to me in compassionate terms about what we're dealing with here. As comforting as it is, I have been waiting since September 17th to get an appointment with a nutritionist and the best my Dr's office could do was schedule me for October 11th. I am aware that it's coming up, I am happy about that. Problem is, I've had to wait near a month to figure out dietary restrictions, etc.
The reason I come here instead of scoping out WebMD or Mayo Clinic - or other such reputable sources is simple. I am passionate about helping our family with this. My issue is when I become this passionate about something I scour the internet to find the answers. And when I mean scour, I can say that somewhat literally. I will find every reputable source that I can find. By the time I get half way through my 1st page of results on Google I am completely overwhelmed. I dig to exhaustion and it becomes no more than a burden.
I am looking to you all for the wisdom of experiences. I am starting from scratch and am already confused and agitated. This may have been an identical post from 2 days ago or a year. I apologize if I am repeating common frustrations. But this is our story and what we need!
Long story short, please know I mean no disrespect by my post. Any negativity I have referred to were from alternate sites like this. Just not this one.
Where do I start? So much is happening in my life that I need a friend, or eye to understand what is happening for our family
Thank you!
What I need right now is help. Not a condescending remark about how I shouldn't waste time and do the research myself. (Not referencing here. Another group) I need someone to explain to me in compassionate terms about what we're dealing with here. As comforting as it is, I have been waiting since September 17th to get an appointment with a nutritionist and the best my Dr's office could do was schedule me for October 11th. I am aware that it's coming up, I am happy about that. Problem is, I've had to wait near a month to figure out dietary restrictions, etc.
The reason I come here instead of scoping out WebMD or Mayo Clinic - or other such reputable sources is simple. I am passionate about helping our family with this. My issue is when I become this passionate about something I scour the internet to find the answers. And when I mean scour, I can say that somewhat literally. I will find every reputable source that I can find. By the time I get half way through my 1st page of results on Google I am completely overwhelmed. I dig to exhaustion and it becomes no more than a burden.
I am looking to you all for the wisdom of experiences. I am starting from scratch and am already confused and agitated. This may have been an identical post from 2 days ago or a year. I apologize if I am repeating common frustrations. But this is our story and what we need!
Long story short, please know I mean no disrespect by my post. Any negativity I have referred to were from alternate sites like this. Just not this one.
Where do I start? So much is happening in my life that I need a friend, or eye to understand what is happening for our family
Thank you!
Starting out is frightening beyond belief!!! So give yourself some credit for reacting in the best interest of your child. You are just being a good mommy. My parents both behaved like total (nasty word plugged in here).
Next, this is very hard to figure out. Even some doctors are confused and will give conflicting information.
For instance,
>>one doctor actually told me to "eat some gluten for about a week" when I need to lose a few pounds. That is totally stupid!
>> A different one claimed that Celiac's can't have any other digestive issues. He told me (after losing 35 lbs over a couple months) that I just had to be tired of the GF diet and decided to eat to kill myself out of boredom.
The list goes on......
Where to start?
Make a list of the basic things she likes to eat. You need breakfast items, lunch items, and dinner. Keep it as short as possible.
I find it easier to cook all GF. Family who want gluten can get it outside the house.
Your biggest issue in the kitchen is cross contamination. NEVER use the same spoon for gluten and GF items!! That makes the GF unsafe!
In stores, never purchase GF items that are shelved BELOW or next to gluten items. That cross contaminates.
FOR NOW just trust the gluten free label on the product. You are going to make mistakes at the start. She will feel better getting as much gluten out of her diet as you can manage for right now.
If you have a Whole Foods around (sorry my computer WWW is acting up so I cant see where youre from), go there.. tell customer service that you need help getting started. They can lead you to the pasta, bread, soups, bouillon cubes, ect.
Get some Reynolds baking bags you know the smaller version of the turkey bags.
Put in meat, a box or two of soup (combine what seems good) and let it bake a couple hours. The soups boil down into nice gravy.
Pasta made from WHITE RICE tastes most like what she is used to. Buy this if you can get it.
There are GF protein bars out now. Find some of these.
Almost all fresh veggies are safe. Stay away from anything breaded.
Most frozen veggies are safe. Again, stay away from breading.
Most stores carry some frozen GF items now. Find the GF waffles. Use these for the bread if you cant find bread right now. These will help her while you figure out how to deal with this. Again, ask customer service.
If not, then try the international aisle. Oriental crackers made from rice are safe.
If you bake from scratch, then everything in your kitchen (sugar, cornstarch, etc) is unsafe. Flour micronizes in the air (becomes tiny particles that are so light they float around for a long time before settling into a fine layer on everything. Purchase fresh and place in airtight containers. Never have all of them open at the same time. Actually, it might be best to get rid of flour and never bring it into your home again.
It is frustrating. It is hard at the start. But this is your childs life at stake. Ignored, she will become anemic, get that bloated stomach from starvation, and all sorts of permanent damage will occur. Just do the best that you can for this day. Tomorrow can be dealt with tomorrow.
I know mommies are supposed to do everything right for their children. She is old enough to read up some and learn to read labels to help.
If you get on the WWW, look for ways to purchase GF foods. Research into Celiac can come later.
Dont take on baking GF from scratch right now. Learn to walk before you run.
That is a lot already. Hope it is NOT overwhelming.
Tomorrow, I will post some links to books that are good helps for you to read if youd like.
Also, others here have great advice.
Just try to take ONE day at a TIME. Piled up all those Future days will wash you away like a Tsunami washes away everything in its wake.
Good luck
Sunny
check out my blog if you want, there are lots of gluten-free recipes on there! http://daybydayhealthyfamily.wordpress.com
you are always welcome to PM me on here if you want to ask me direct questions also.
Do you have a trader joe's near you? that is definitely what i would recommend as a first stop if you have one! What are some of your daughters favorite foods? maybe we can give you brand names of gf products like it.
Thank you for mentioning the cross contamination. I NEVER would have thought of that! All the flour I have at home is regular all purpose flower.
Foods she likes.... Loves pasta, breadsticks, garlic bread, tacos, subs, chips, popcorn... and I got her some gluten free chex cereal already.... and around this time of year I usually make pumpkin bread and cookies. I could probably post the recipes later to see if there is any way to possibly go gluten free on the recipe and not sacrifice the taste! (Fingers crossed!)
Also, my husband is saying that as a family we do not have to all change our eating habits because of this. I'm thinking he's wrong. That this will be an entire family thing. Is my thought process correct?
Thank you also for the blog link. I will check it out. I have a blog on wordpress too - conveniently enough. Mine is really centered around the mental illness in myself and my family. I'll probably post something about celiac's disease at some point there too. For certain I will keep your blog info down. Mine is www.psychosisrus.wordpress.com
I think that's it for now. Any questions, let me know.
Janet
1. Start out by making the basics--fruit, vegetables, salads, meat, eggs, rice, quinoa. Don't purchase meat that has been pre-seasoned, and watch frozen vegetables with "butter sauce" or something similar. Many seasonings contain hidden gluten.
2. If you are a member of Pinterest, there are thousands of recipes there. I have pinned approximately 2,000 gluten- or grain-free dessert recipes.
3. If you can't find a gluten-free product near your home, you can purchase many online. I buy some from Vitacost.com, where I purchase supplements.
4. Once your daughter begins to heal, watch for other potential sensitivities, such as corn, soy, lactose, etc. After eliminating gluten, I realized that I am somewhat intolerant of corn. So I make most things from scratch.
5. Learn the names of gluten, and the ingredients it hides in. Here are a few links that might help. At first, I took a list of these names when I went grocery shopping.
http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html
http://celiacdisease.about.com/od/copingwiththediet/a/Gluten-On-Food-Labels.htm
http://www.csaceliacs.info/label_reading_101.jsp
6. Watch for gluten in soaps, cosmetics, etc.
7. Read some of the old posts on this forum, because they contain lots of helpful information.
Best wishes to you and your daughter. You can and will conquer this, but it takes a little time so don't get discouraged.
After I was diagnosed both my grown sons were diagnosed too.
We have a second site here for everyone to use. We all rate products, give out web sites, give our own gluten free recipes, a little bit of everything to help those with celiac. It's at www.dailystrength.org/groups/sharing-our-gluten-free-recipes
If you like to bake Bisquick has a gluten free box now. I like it for pizza dough, etc. Bobs Red Mill does a lot of gluten free flours. They can all be bought online at their website or Vitacost, like Nanny mentioned.
The first few months are the hardest, but then you just get use to shopping and eating this way. Good luck. Glad you found us.
Having Celiac and caring for a Celiac are extremely different ways of living. As hard we mommies try, we can not be everything to children with special needs. Your daughter needs to find a place where she can talk with other Celiac's about how it feels to have this dangerous disease.
Unlike other diseases, I can never ever let my guard down for a single moment. Breathing in gluten, in Dunkin Donuts makes me so sick I ended up in hospital all over again. So I have to worry about hugging people, having anyone hand me anything to eat or drink in case they exposed me.
Parties are a nightmare of people asking why I am not eating, or taking the special foods that I made just for me to leave me hungry. I have lost track of the number of times that every person at a buffet just had "to try" the gluten free items to "see how it tastes" only to leave me with nothing to eat. And even drinks..... well, the point is that living it and caring for someone with it are totally different.
And so many suggest, "I think xyz is safe. TRY IT and see!" How to deal with these idiots is an issue that she has to work out for herself.
Most restaurants claim to have gluten free offerings but then cancel that out with the caveat fine print "we can not be responsible for cross contamination that normally occurs in our kitchen". I have lost track of the number of times I have walked out or eaten and then been sick later to pay for this ignorance.
A college student just recently sued a college for offering nothing but salad as their GF "meal", forcing her to pay full price for a mandatory meal plan when there was no way she could possibly survive eating salad for four years.
These are mental and emotional issues that we mommies can't help with. So try to find a place that is at her emotional and spiritual level where she has privacy (even from you!) to share the issues with others who also understand.
I highly dislike doctors now...You have to almost be dead or in shock for them to take you seriously about a SERIOUS health condition.
Also, allow yourselves some time to grieve. Your whole world is changing. While you are gaining a lot, you are also losing a lot. Living gf is time consuming, especially at the start. There will be foods that your daughter will never be able to eat again. Some maybe easy to give up, while others more difficult. For example, I'll never be able to eat my grandmother's fudge again and I have not been able to find a gf/cf alternative method of making it. Christmas isn't quite the same without it. When I realized eating it was making me sick, I tried to deny it for a while, but eventually had a good cry about it and moved on. It is important to take the time to process through all the emotions you are feeling.
In time, it does get better.
I agree with you. Doctors are making a well educated guess. most times that is enough. BUt go back several times with the same issue and they either write you off as some sort of nut, or simply ignore you because you have "too many complaints".
The one who DX'ed me looks at lots of number to make choices. We had it out a couple years ago because of a low thyroid number and his foolish belief that some meds can't cause side effects.