Frustration With Celiac Awareness/people Writing Off The Effort

[cintinative]

I just need to vent. We are in our first week following a firm diagnosis of my son's Celiac disease. I am already frustrated by the people who tell me how much easier it is now with all the gluten-free products out, referring me to adults who have given up gluten voluntarily (not for Celiac) for advice, and people that tell me they get around wheat by eating lots of salad. Seriously. I just wish more people would say, "wow, that must be hard. I will pray for you." and be done. Sure, there are a lot of great products out there. Some of them taste good and some are horrible. Also, they are twice to three times the price of wheat items. I don't know about everyone else, but our grocery budget was tight before. I would really love to be in the position to just buy Udi's bread or some type of gluten-free cookies, but I can't. I need to make them myself so we don't have money issues. My son's favorite food is pasta. gluten-free pasta is very expensive so I am looking into making my own. Also people just don't get that there are huge issues with cross-contamination and I can't just start baking gluten-free in addition to wheat baking and not worry about it. Or they think I am crazy to be baking at all and my son should live on Chex, meat, rice, and beans for the rest of his life (don't get me wrong--I am so grateful for Chex!).

Unfortunately I have a lot of food issues myself and I have just discovered I have a problem with xanthan gum. I got very sick last weekend from it. So I am discouraged about gluten-free baking because it seems to be in everything.

Anyway, just needed to get my vent out there. I feel like the only people who sort of get it are the ones with kids with anaphylactic allergy issues. They understand the 'this is a life change' element to this and respect there is a period of mourning over all that will be different for your kid as a result.

[1974girl]

People want something helpful to say. If they just say "that must be hard. I'll pray for you" will seem to them like it's dismissing it. It makes people feel better to tell you about Elizabeth Hasselbeck "has that too" or Dr. Oz had a show on it. People who say anything are really just trying to show empathy. I can't imagine the dumb things I say to people who have other ailments. Just smile and know they really are trying to be helpful. And gues what? It is hard and I will pray for you!

[beachbirdie]

I just need to vent. We are in our first week following a firm diagnosis of my son's Celiac disease. I am already frustrated by the people who tell me how much easier it is now with all the gluten-free products out, referring me to adults who have given up gluten voluntarily (not for Celiac) for advice, and people that tell me they get around wheat by eating lots of salad. Seriously. I just wish more people would say, "wow, that must be hard. I will pray for you." and be done. Sure, there are a lot of great products out there. Some of them taste good and some are horrible. Also, they are twice to three times the price of wheat items. I don't know about everyone else, but our grocery budget was tight before. I would really love to be in the position to just buy Udi's bread or some type of gluten-free cookies, but I can't. I need to make them myself so we don't have money issues. My son's favorite food is pasta. gluten-free pasta is very expensive so I am looking into making my own. Also people just don't get that there are huge issues with cross-contamination and I can't just start baking gluten-free in addition to wheat baking and not worry about it. Or they think I am crazy to be baking at all and my son should live on Chex, meat, rice, and beans for the rest of his life (don't get me wrong--I am so grateful for Chex!).

Unfortunately I have a lot of food issues myself and I have just discovered I have a problem with xanthan gum. I got very sick last weekend from it. So I am discouraged about gluten-free baking because it seems to be in everything.

Anyway, just needed to get my vent out there. I feel like the only people who sort of get it are the ones with kids with anaphylactic allergy issues. They understand the 'this is a life change' element to this and respect there is a period of mourning over all that will be different for your kid as a result.

Welcome aboard! You've come to a great, great place for support and ideas! There are folks here of all ages and folks with so many different kinds of experiences, there is a wealth of information here to help you.

I'll start out...yes, this is HARD! It is a major life-change and if only one person has to be gluten-free, it is hard on the rest of the family if they don't want to be on board with it. Yes, there is a learning curve, and it is a challenge!

Baby steps. Try some new things, you'll figure out what you like and don't like, and find lots of alternatives to the expensive substitute foods.

Hang in there, and ask lots of questions.

Check out the Cooking Forum...there are some threads on dinners, desserts, and other stuff. There are many ways to make good breads without having to use xanthan gum, for example. There are ways to use flax seed, pectin, gelatin, other "binders". Guar gum is like xanthan gum, and a lot of people who are sensitive to the "x" gum can use the "g" gum.

Here are a couple of links to get you started...

Flourless peanut butter cookies (the one with a TBS of vanilla is to die for!)

Open Original Shared Link...because everything is better with chocolate!

Anyway, all the best to you.

[Cara in Boston]

I hear you. I think people are just trying to be helpful. Really, before we were diagnosed, I'm sure I couldn't imagine never eating wheat again. What annoys me most is, "Oh, Applebees (or Dominos, or Olive Garden, etc. etc.) has a gluten free menu! You'll be fine! They don't understand that due to cross contamination most of those places with gluten-free "menus" are not an option for us.

My son was 6 when he was diagnosed. At first we just bought all the "replacement" foods (pasta, bread, waffles, etc.) and over time, we just used them less and less. Now (over a year later) he rarely eats them and he is doing much better (they were really nothing but processed food - not much nutrition in the them anyway) and so is our budget.

Check out cookbooks and breakfast/lunch ideas on the paleo diet. We use a lot of ideas from there. For example, one of his favorite lunches now is chicken salad on cucumber discs (rather than a chicken salad sandwich).

It does get easier -

Cara

[AGH2010]

Ugh, I completely agree with you!!! We still don't have a firm diagnosis for my 2 year old but her EMA test came back positive and all signs points to celiac so I think it's only a matter of time before we embark on the difficult gluten-free road. I've been pretty disappointed by most people's reactions, especially my mom friends who also have 2 year olds. They should realize how hard it will be to keep a 2 year old from eating goldfish crackers and cake when all her friends are eating those things at school and parties! But I too have gotten the speech about how good she has it these days. I start explaining cross-contamination and get blank stares back. I feel like people think I'm exaggerating. You're so right that just a little bit of empathy would go a long way. You've got my empathy and my prayers too!

[Sybil]

I'm less than a week into this with my son, and I hear many of the same comments. I try to let it slide. People are just trying to be helpful, even if their idea of "helpful" doesn't mesh well with mine. :/

I hear you on the grocery issue. We're already feeding a family of six (and two cats, and a dog) on one income, and it's tight. But since my 13 month old is too young to be reasoned with, or understand why his older siblings can have sandwiches and he can't, gluten-free replacements are going to be a bit of a staple for him for a while. I'm lucky enough to live in a city that offers multiple bulk grocery stores, and brown rice pasta isn't so dear if I shop there. They also carry a number of wheat alternative flours, and even gluten-free bread mix. I'm also told by a friend with a celiac daughter that Costco carries gluten-free cookies at a fairly reasonable price. Are there options like that available for you?

It is hard, and your family will be in my thoughts.

[ciamarie]

+1 to what everyone else has said. I did want to suggest that you check out the Asian food section of the grocery store for rice noodles, if you're o.k. with white rice replacement noodles / pasta. They're generally in the shape of fettucine. Easy to cook (boil for a minute or 2, stir, then cover and soak for about 5 minutes, then drain), and easier on the budget!

[GottaSki]

Hang in there - this is hard and I will pray for you and your family!

It is hard, but it will get much easier with time - until then you have found the perfect place to vent and get great answers to all the questions that will be bouncing around during transition to gluten-free and beyond

[Minette]

I definitely get that. Everyone has been SO nice and supportive, yet even in being supportive, they just don't get it at first. Our very best friends ran out and started buying gluten-free chips and pasta and such to feed my DD when we're at their house, and I'm so grateful, but I had to explain to them all about not sticking their hands in the bag, not using their regular colander, etc. (at which point we all agreed that it was better if we just brought her food with us each time).

I also got one very nice lady (not one of our good friends) who said she herself had celiac and the good news is that "kids can grow out of it." (She said this in front of my 6yo DD, who fortunately knew not to believe her!)

I live in Boulder, where many people are gluten-free for general health reasons, so there's a lot of awareness of what gluten is -- but not so much awareness of the distinction between gluten sensitivity and celiac. I also get a lot of "How great that there are so many gluten-free foods!" and then I feel like a lout saying, "Yes, but Sarah doesn't like any of them." And the same thing with the restaurants. If I could find a restaurant that served gluten-free mac & cheese, gluten-free grilled cheese sandwiches, or gluten-free (but not corn) plain cheese quesadillas, THEN we'd be golden!

I agree that people whose kids have food allergies are the most likely to understand.

Seriously, though, we're only a month in and it is already so much easier. (For one thing, she recently informed us that she now LIKES the Annie's rice mac & cheese, which she initially said she could just barely tolerate. Major victory!) Hang in there.

[mamaupupup]

Sending prayers your way! And yes, some of it can be VERY hard!

First, a confessional story! My husband's cousin's kids have Celiac. Every summer we spend a week together at a family reunion. All the previous summers we intended to be understanding, kind and respectful of their desires and needs regarding how food was handled. Fast forward to this summer: our daughters and I were all diagnosed with Celiac before our annual trip. On our first day with all the cousins my husband started out with a huge apology to everyone that we were really clueless in previous years and how sorry he was that we did not comprehend the magnitude of vigilance one must have in keeping Celiacs safe. I was so impressed with my husband! And it's true...it's hard to know what to say/do/not do until your life must be gluten free...

Next, have you read the article on being able to deduct incremental food expenses from your taxes? This may help a little Open Original Shared Link

Yes, there is definite mourning. I think you are amazing for recognizing and accepting the mourning part! You are a great Mom!

Yes, the food allergy folks understand best of all!

One last tip: find as many Celiacs as you can to help feel like you have "safe" people supporting you. This forum is amazing.

I'm rooting for you!!! Praying too! Praying too that it'll feel a little easier tomorrow, and the next day, and that there are as few bumps in the road as possible!

[Takala]

My son's favorite food is pasta. gluten-free pasta is very expensive so I am looking into making my own. Also people just don't get that there are huge issues with cross-contamination and I can't just start baking gluten-free in addition to wheat baking and not worry about it. Or they think I am crazy to be baking at all and my son should live on Chex, meat, rice, and beans for the rest of his life (don't get me wrong--I am so grateful for Chex!).

Unfortunately I have a lot of food issues myself and I have just discovered I have a problem with xanthan gum. I got very sick last weekend from it. So I am discouraged about gluten-free baking because it seems to be in everything.

Anyway, just needed to get my vent out there. I feel like the only people who sort of get it are the ones with kids with anaphylactic allergy issues. They understand the 'this is a life change' element to this and respect there is a period of mourning over all that will be different for your kid as a result.

Try mail ordering the gluten free pasta, if you do not have a store that is putting it on sale once in a while. Yes, you may have to order 6 packages at a time, but it's not like you're not going to go thru it quickly, it's much cheaper, and it's not going to spoil.

For the baking, there are LOTS of gluten free foodie bakers all over the bloggosphere, you're just hanging with the wrong crowd in real life.

For beginning baking, I recommend trying the microwave gluten free bun in a cup recipes, leavened with baking soda and pure apple cider vinegar (or lemon juice) and not yeast. This is done in a ceramic or glass bowl or ramekin or cereal bowl. You don't have to buy a new baking pan for it. The added advantage, besides speed and ease, is that if you use certain recipes or flours, you really don't need xanthan gum at all with this method. For now, you can also get yourself some Chebe mixes, which are just tapioca and don't need xanthan, either. Chebe is done in the conventional oven, but that also is very fast as the little chebe rolls take only 20 minutes to bake. I tried this again as I am having to avoid oat cross contamination, and this stuff is quite amusing, as you can make a lot of different things out of it. I've also cut it half and half with adding other gluten free flours to it, with a bit of salt and baking soda and a dash of vinegar, and it still came out and did not need gum.

With bun in a cup recipes, you can make up your own mixes, spoon it out, and have a bun which bakes in the microwave in 1 and a half minutes, which is great for single application sandwiches. A bigger bun can be split in half for two people, then sliced, for "toast" or a "breakfast muffin." You can also make mini gluten free brownies and cakes.

As a xanthan gum supertaster, who does not really care for it, I sort of play with recipes for anyone who can't eat it. You can also used flax soaked in warm water to make a gel as a gum substitute. You can use guar gum. You can use psyllium husk, but you also have to soak that in water, and it tends to make things tough. But, chia seed, soaked in regular temperature cold water, makes a nice gel that can also help bind together gluten-free flours. You use about a tablespoon of chia soaked in water, per 1 to 2 cups of flour.

Flours which are better at not needing gums are buckwheat, amaranth, almond meal, the chebe tapioca. A three way mixture of buckwheat, garbanzo bean, and potato starch needs no gum to make pancakes and does not even need eggs.

scroll down here for #5 on this thread, for links to recipes

[mommida]

Yes this is hard, and i'm praying for you and your family.

Diagnoses and lifestyle change causes a grieving period. you don't really have time to acknowledge that because you are racking your brain trying to find something safe to eat.

There is also a very good chance that you are experiencing gluten withdrawal. Not fun, but it is REAL. It can explain why you just don't have your usual patience level or feel like yourself.

Tastes buds need spme time to adjust to the gluten free food. Sweet tastes sweeter and salty tastes saltier because there is no wheat flavor to counteract. Texture has always been linked to flavor and that has definately changed.

You are going to get through this! Everyone here is willing to help you along the way.

You are justified in your feelings. This is your experience, your feelings dealing with this. Everyone has to take their own babysteps.