Arpita

I'll never forget the quote, "Whatever can happen to a human being, can happen to me." This puts life in perspective for me. Life is uncertain, even with your faith. There are Christians whose child got hit and killed by a car, those with illnesses worse than ours. Jesus suffered a lot and so did most Christians in the bible and after the bible, most of them unto death. Some sense of suffering is part of being human. Sit with it some. To be still and know that God is God and God is the good in whatever you are experiencing. Be raw with the Lord, cry to him, share. Some peace can also come when we pray with thanksgiving for what we have, when we surrender to God over and over. Ask for the courage and strength. Also, keep in mind, this disease is new for you. Whenever a person gets a lifelong condition, you can go through the stages of grieving -- denial, anger, loss, sadness, acceptance, etc. This is human, you will feel it, it will pass, and he is there to be with you while you feel it. Keep doing your part! Don't give up! I know it can be really hard! I can't promise you that your prayer will be answered in the way that you seek, but I can say that the Lord always provides good in the bad. There is light in the darkness, and something human and something spiritual in every moment. In the meanwhile, He also says, keep asking, keep petitioning, and keep knocking on His door.

  Juliet said:

I have a recipe, too, for what I call baked marzipan bars. It's definitely gluten and rice free, and pretty easy to make dairy and soy free, too.

That sound's interesting. Can you post it or send me a pm? Thanks.

  fajitas said:

When I do things like that, my husband always appreciates a sincere but quick apology and short explaination. Seems that just an acknowledgement that I understand how what I said was hurtful helps. I try to make it short - guys just don't seem to want to go into the details.

I completely agree here. Keep in short. Then if he continues about it some, be prepared to continue to keep in short and let it go. It's easy to get into argument, when there is more details. The big picture is what a stress for both of you, and that your intention is to support him and believe in him.

I'm sorry you have struggled for so many years. I can relate to your experience, being in that in-between spot is really hard, and yes the diet is hard. Anger is part of my symptoms. For my friend, it is main symptom and it almost resulted in a divorce. Her husband is so thankful! Some other ideas....I would also keep a journal of how others find you after about 3 months. Ask them now and write it down. Then in three months ask them again. Don't mention the gluten connection, as it is so "weird" for most that they will not want to connect the two. Also, I found it harder when trying to go gluten free when I sought after substitutes (that were never the same) and ate bits of gluten inside things (that kept me wanting more, its not uncommon for people to experience it as addictive). It was easier at first to just eat other stuff -- rice, corn, fresh vegies, meat -- there really is a lot of food. Then I didn't have to read labels, and later on when I returned to substitutes, and started reading labels, it was less overwhelming. Also, I would tell myself how "it's just food" - why should "food" be such a big deal? Food is not at all related to what matters to me most in life. And, yes, you can get carried away with "I have this little symptom" is it gluten? The connection between eating something and then behaving a certain way can also feel dehumanizing. But if you persevere, all these things will get better as you adjust, and feel better emotionally. It's a hard road, but also consider this in terms of long term -- 40-100 times more likely to get intestinal cancer is you are a celiac eating gluten, as compared to 12-23 times more likely to get lung cancer if you smoke. And, well more importantly, if anger is a symptom, you will find yourself in a new way -- the real you.

I have a friend and her son that responds like that to corn.

Although I don't have that "type" of response, I am so sensitive to contamination that I would have a reaction to the granola because it says it is on "shared equipment" with dairy. I found that out back before they had such labels when I was eating several foods that bothered me. Later I learned that all those packaged foods had a U-D symbol which means possible presence of dairy protein because of shared equipment. Unfortunately this is an issue for almost any packaged sweet food such as granola, cereal, waffles, cookies.

Wishing you the best! I noticed you haven't been gluten free that long. Have you ever thought of just sticking with that (or gluten/casein free) and waiting? It takes 6 months to a year for some people.

  jas322 said:

I have traveled on Singapore Airlines and did not have any issues with their gluten-free selection. The food was great and best of all it didn't make me sick. Overall it is a great airline, probably the best I've travelled.

Thanks a lot. I also read your other posts. Curious -Are you also sensitive to dairy? Have you eaten out in the town of Singapore?

Anyone have a simple recipe for an almond bar without dairy, soy, rice, (or gluten of course). You know, something like the boomi bar. I'm not too good at stove top candy cooking without butter. Any ideas? Thanks.

I'm sorry your daughter is so ill, and that's so hard on her and you. I would search online for some information, on this cite, on webmd, celiac.org, for starters. One issue is where the blood test is done (I think Mayo is good), and if you get all three tests. I would look into peoples stories here, as you will see that many have diagnosed celiac with negative results, and others are gluten intolerant and have improved with diet. It would be ideal to find a doctor who is more knowledgeable about celiac, or who at least is younger and where the doctor uses the computer to search for and enter information. What a drag when you have to be insistent at him doing tests! I would make sure to get all copies of the doctor's notes and tests. It is very informative to see what they write down and to look at the normal range etc. yourself. I have had errors with another health issue, and more than once had a doctor tell me its "nothing," and then see that on his chart, he wrote down "it could be..." but didn't tell me those considerations! I have more specific information on location of testing, etc. in my file, but I can't get to it now. Wish you both the best.

Anybody with celiac and other food intolerances (such as rice, beans, citrus, nuts and most new grains - like amaranth, buckwheat, quinoa, teff, and any food that typically produces gas, & most vitamins) ever been able to add back in foods? Please tell me of success stories where you can actually eat more, where food intolerances get better over time.

  adiftime said:

Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5

My daughter will be going to Singapore and then to India. She is very sensitive to gluten and dairy, small contamination can be an issue for her. The airline says that they have gluten and dairy free preparations for her. Has anyone traveled with them before? What else do I need to communicate (my husband is going, I am not)? Anyone with experience eating out in Singapore? Thanks so much.

Wow, sounds like heaven. I can't eat out. Can I ask what your other food intolerances are and how well you were able to eat out with them? I'm especially interested in dairy, soy, and egg. Thanks!

My daughter and I eat the Elyon marshmallows. A while back we checked out and tried several brands and this was the only one that worked out (gluten and dairy free, kosher). We don't eat a lot of processed foods, and don't eat them often -- usually for camping, but haven't had any problems.

Wow, that sounds tough, especially when the diet is so all-consuming. It can be real difficult when medical science is a ever-changing, incomplete science and when doctors so often filter everything through one statement or diagnosis. As for other ideas of a diagnosis: Parasites and milk intolerance can also cause flattened villi (search celiac.com and there is a list of other things). Another possibility is that she has celiac that does not respond to diet (called retractible or something like that). Some diseases frequently have false positives in bloodwork, but it is not typical for there to be a false positive for celiac. Also, sometimes celiacs have additional things such as Crohn's, parasites, bacterial or fungal infections

I just posted a chocolate chip cookie and a sugar cookie recipe. Go to my posts and you'll find it.

My friend couldn't eat anything, neither could her son. They kept eliminating until nothing was left. She went on the SCD diet (go online and then look for book). Now she is reintroducing foods, and is eating more foods than she has for 8 years. I'm not willing to try it myself, but you might want to look into it if you are miserable. Also, I was wondering if you have began chelation? FYI - I don't know the details, but I know of people who underwent the chelation of some sort, and got worse and became permanently ill to the point of disability. If either of these things is something you want to know more about, send me a private message and I'll get a hold of my friend.

Great suggestions from everyone else. Also, try a Yahoo search for "Allergy Grocery" or "Miss Robens." They have a great online store with all ingredients listed. Also, maybe take it slow if you are already overwhelmed -- sticking with gluten and dairy free is great success!! IF you are feeling much better, then maybe just eliminate one food at a time, wait a month or two, and then see how you feel. It can take months for the elimination to show up in your symptoms, especially when dealing with additional foods.

I've had best results with flaxmeal from Bob's redmill, sprinkled on applesauce or made inside a gluten-free bread. Also, cod liver oil from Kirkman Lab online (they have many supplements that are gluten free - and list specifically all other possible food allergies/intolerances), and hot water or tea with honey. Drink lots of water. Hang in there!

Sorghum Recipes:

Chocolate Chip Cookies #1

3/4 cup sorghum flour (Twin Valley)

1/2 cup tapioca flour

1/4 cup potato starch

1 tsp zanthum gum

1/2 tsp baking soda

1/4 tsp salt

1/4 cup coconut oil OR palm shortening OR lard (no soy or casein)

3/4 cup brown sugar

1/3 cup granulated sugar

2 tsp vanilla (gluten free)

1 egg (or egg replacer)

1 cup chocolate chips (enjoy life or chocolate emporium if you want soy & casein free)

1/4 cup nuts

Bake on 350 degrees for 10-12 minutes.

Chocolate Chip Cookies #2 - has some rice flour

7/8 cup sorghum flour

1/8 cup garbanzo flour

1/8 cup sweet rice flour

1 tsp zanthum gum

1/2 tsp baking soda

1/4 tsp salt

1/2 cup shortening (see above for soy & casein free alternatives)

3/8 cup granulated sugar

3/8 cup brown sugar

1 tsp vanilla

1 egg

1 cup chocolate chips (see above for soy free)

Bake on 375 degrees for 10-12 minutes.

Sugar cookies -- Rolls out easier than wheat!

2 1/2 cups easy sorghum flour mix (see below)

1 tsp baking powder

2 1/2 teaspoons zanthum gum

1 tsp salt

1 cup sugar

1 cup shortening (see above for alternatives)

1 egg

2 tsp vanilla

add potato starch or flour mix as needed until you can knead it. It is OK to work the dough as much as you want (or not to).

Easy Sorghum Flour mix: 6 cups sorghum, 6 cups corn starch, 5 cups tapioca.

Can substitute arrowroot starch. Can substitute potato starch but lesson amount to 4 cups.

CAN actually use ONLY sorghum flour (it won't be a total flop like some of the rice recipes).

  Yellow Rose said:

I have been reading about some of you using coconut flour and having good results. But having to add a lot of eggs. Does anyone know what the adaptions would be if I substituted coconut flour. I am wanting to try several different ways of doing this.

Thanks again,

Yellow Rose

Armita when you get time I would love the recipe for your cookies!!!

Thanks,

Carole

No answers for your first question. Try Kirkman for Gluten-free Casein-free probiotics. Do a search online and it should come right up as Kirkman lab. They cater to allergies, autism, and so forth.

I use sorghum flour for just about everything. It has a taste very similar to wheat. You can get the Bob's Red Mill from many stores. Or you can order it online from Twin Valley Mills (which is better and cheaper). I have taken some recipes and just exchanged it one and one for wheat (such as shortbread, mexican tea cakes, pumpkin bread). Also, there are recipes at Twin Valley's website. Here's a flour-combo mix with sorghum that works with almost everything - 2 cups sorghum, 1 1/2 cups potato or corn starch, 1 cup tapioca (and substitute that for all the flour in the recipe). I have many sorghum recipes, and a chocolate chip cookie recipe that is definitely as good or better than regular chocolate chip cookies. When I have a little more time, I e-mail it to you.

Yes, my friend's son and many of her friend's children had those symptoms only. Some were even diagnosed with autism and made a complete turn around after going gluten and dairy free (casein free). There is a gluten and casein free website that I could direct them towards. Also, my child has primarily neurological symptoms -- seizures, mood swings, depression, hyperactivity -- all of which go away once gluten free (no seizures at all). Celiacs can also have only neurological symptoms. I don't have many suggestions regarding your other questions. The connection is so weird to most people that they think you are crazy mentioning it.

When I get little bits of gluten in my diet, I get a "hungry" feeling even if I just ate. I also had a similar problem as yours when I first going off gluten and didn't yet have a firm grasp that I might be getting gluten in my diet or getting foods contaminated with gluten (and before I went dairy free). It is hard without meat. I would try eating more nuts or nut bars (like Larabar), making quick sweet breads, eating chips, etc. Maybe add some iron and B-12 to your diet also, as many celiacs are low in those areas from gluten, and these are vitamins that are more difficult to get when are vegetarian. Hang in there. It's possible that the longer you are gluten free, the more your eating swings will calm down.

If you want substitutes for making icing here's a few --

instead of butter - Nucoa margarine, coconut butter, palm shortening

instead of milk -- coconut milk, soy milk (boxed Silk is good), or rice milk (but pretty thin)

There are pluses and minuses about going dairy free. I do hear that getting rid of it will help the gut to heal. Keep in mind also that it is common for dairy reactions to hit your mood or have any neurological symptoms (sometimes making you happy first and then grumpy later if casein-- the protein-- is the problem). The down side is that once you eliminate a food, you can actually become more sensitive to it. Then you may not end up adding it back it to your diet, because you will feel sick. Hope that helps.