Emily Elizabeth

I was very happy to find out what was wrong with me, but it only took a few hours for me to realize what all of this meant. I was very angry at first as I continued to realize more things that were going to have to change in my life. Now, I just get angry (and depressed) when I'm glutened. When my body is healthy I feel fine. I still forget sometimes that I have celiac though. It's like I'm in denial. I think the hardest part is when I realize that I can't ever have something again. Now I am doing that less and less though so it's getting better.

Alex,

It sounds like you have everything covered. My first trip, I didn't get a hotel room with a kitchen and I have to admit it was a bit difficult. I brought pre-made frozen dinners with me, and had a refrigerator in my room, but had to go to the restaurant to get them microwaved. Anyway, I was way more nervous then I needed to be though. Everything went well in the end. Good luck and have a good time!

Emily

My fiance and I recently got invited to go see some friends about 2 hours away from where we live. I'm nervous about going but I really want to and I don't want to let Celiac get in the way of doing what I want to do. I've been feeling quite good lately (almost normal ) so I feel like I'm ready. Here is what I have considered to try and make sure things go smoothly:

• Our hotel room will have a kitchen
  
• We're bringing some pots, pans, plates, cutlery, etc.
  
• I'll bring extra diabetes supplies
  
• Imodium and Pepto Bismol (just in case)
  
• We're bringing some food and will stop at a grocery store when there
  

Is there any other preparation that I might be missing? I'm sorry worried we'll get there and think 'how could have we forgot about that'! So if anyone has any suggestions about things they forgot to think about when they went on their first gluten-free trip that would be great. I'm so nervous but excited.

Thank you

Wow! That's crazy! I hope everyone participates. It would be interesting to see how many of us have the short pinky finger.

I know this may sound weird but 2 years ago a health food doctor told me that I had gluten intolerance. I didn't really care for him or his personality, so I chose to not listen to him. Wish I had now.

He gave me this diagnosed based on the length of my pinky finger. He said that if your pinky finger falls below the last joint, under your nail, on your ring finger, that that means you have gluten intolerance.

When I went to the GI doctor I told him of this diagnoisis and he said he didn't really think I had it but that it was definetly an easier and cheaper diagnosis than his. He did the scope and the biospy, and I did have it, but I never had another appointment with him to hear his reaction. He just sent me back to my primary care doctor(who really doesn't know much) and to my wonderful dietician.

Now, I am curious as to how many people, that have been diagnosed with this disease, actually have a short pinky finger.

I can't have dairy, eggs, gluten, cane sugar or vanilla anymore.

Wow! My heart goes out to you Burdee! I feel sorry for myself all the time and I just can't have gluten. Thank goodness you can still have maple syrup! These restrictions certainly make us thankful for the things we still can have.

You may like the recipe best without the buckwheat flour (rice instead). Buckwheat has a distinct flavor, so I don't know if it will be for everyone, but I sure like it!

I hope you enjoy the pancakes!

After three months I would think you should be feeling better. It depends on how badly your intestines were damaged though. If they weren't that severe, you are probably still consuming gluten. I found that items that said gluten free actually were making me sick due to contamination. I was eating Puffins cereal (honey rice), which I later found out had a recall in many countries recently due to large amounts of gluten found in the product. My best advice would be to not eat a lot of processed gluten free items (pasta, cereals, etc). Wal-Mart is the best for finding things that are absolutely gluten free since they list it right on their great value brand after the ingredients. I buy their rice, canned veggies and fruits and such. The more meat, veggies and fruits you have the better until you start feeling better. It could also be something like your utensils or even your makeup (that happened to me as well). I don't believe that something could still contain gluten after being washes so many times either, but at the same time, when I wasn't feeling well, I went ahead and replaced anything that was plastic with scratches and just threw away my wooden spoons. I wish you the best and hope you start feeling better soon!

Emily

An example of the kind of thing I notice: I got some rice cakes with a chocolate and caramel favour. I checked the label and it said suitable for celiacs, but the ingredients list glucose syrup (from wheat). I have no idea if I can eat this or not, but I always go for safety first.

If wheat-derived glucose syrup is harmful, perhaps it is getting into my system from another product which hasn't labelled the ingredient as wheat-derived. But I was told that in the UK they must label it.

I have been eating products with maltodextrin, as a search of these forums and elsewhere told me that it is safe.

Hey all! I wanted to share my excitement! I have been working this recipe since I was diagnosed back in May. Before I was diagnosed, I had a wonderful whole wheat pancake recipe that had virtually no fat or sugar and had a good deal of fiber. After going gluten free i wasn't going to give up my ability to have guiltless pancakes! The recipe was getting to be pretty decent, and then I discovered Buckwheat flour. Adding that made the pancakes taste like my old whole wheat version! I am so excited! I posted the recipe on recipezaar.com incase anyone is interested!

Open Original Shared Link

(recipezaar says it has 94 calories, but they don't include the garbonzo/garfava flour)

I like to make these on Sunday mornings so I can have leftovers during the work week. For healthy toppings, I suggest fat free yogurt and blueberries. I also like to put sliced banana on top and then microwave it for about 1.5 minutes. The smell of cooked banana is wonderful! Yum!

Of course, if you are like my husband, you won't be concerned with the healthy part and will like the recipe much better with chocolate chips, rice flour instead of buckwheat, cooked in loads of butter and drenched in syrup! It certainly isn't guiltless anymore, but I have to admit it is pretty good!

I hope you all enjoy it! I'd love to hear how you like them or even how you modified it to make it your own!

Emily

I did it with the dominant hand over the heart. That seemed to work!

Oh, cool! Did you figure out whether the dominant or non-dominant hand was supposed to be over the heart? I want to do it again for some other things and when I was trying it last night, I was having carpal tunnel issues, so really didn't know.

It does seem to set a nice starting point without going into that whole gut-wrenching issue.

I really like the hand over the heart technique. I just tried it with things that I already know bother me and don't bother me and it seems to work! Pretty neat! Thanks!

Also, if you're having an allergic reaction related to food, chances are good that you're having an allergic reaction to environmental factors as well, and so...if your body is dealing with the ragweed/goldenrod/mold/whatever's out there at this time of year, it probably just goes into overdrive when a food allergen is introduced to top it off. So maybe you won't be having this problem with your homemade cereal in the dead of winter. Which explains why the green beans I ate today so, so did not like me and vice-versa.

Sorry to complicate things.

I once came across a naturopath-type non-professional who told me that a quick and easy test for finding out intolerances to foods was to place the dominant (non-dominant?) hand over the heart, think about the food in question and then with the other hand, try to flip the other hand away from the heart. With foods that aren't a problem, the hand on the heart will remain there. With foods that are problematic, the hand on the heart will be separated fairly easily. Has anyone else heard of this? It seems to work along similar principles as the Vega machine and would subvert any possible future malpractice suits.

Margaret

I have tried Betty Hagman's and Carol Fenster's and like Carol Fenster's recipe the best by far. It is from her book Cooking Free. The one that uses yeast. I saw someone else posted that they use her recipe too. The one I use doesn't use milk powder though. The book doesn't look like much but the recipes are amazing! I also made crackers from her book and they tasted great! Way better then the ones that are in the store.

I've been using Gluten Free Pantry's pizza crust mix for months now. At first it was ok, you know, "This isn't too bad" thing. My kids eat it fine, although they mourn the loss of Pizza Hut and Papa John's. I've gotten some pretty good methods and techniques down pat, and I use a high quality pizza stone.

But the gluten-free Pantry mix has become immensely unsatisfying to me! It falls into a gluten-free category I call "Nasty Biscuits." Think dense, dry, and crumbly. I came up with this category the first time I actually choked on a piece of gluten-free bread.

Please tell me that there is a gluten-free pizza crust out there that is somewhat crispy/chewy???

Please, everyone post your favorites. Thanks in advance!

-Sarah

I use Don Pepino's too and it makes ALL the difference in the final product!

We've experimented with a few different recipes and my favorite one so far has to be the pizza crust from Annalise Roberts book, Gluten Free Baking Classics. It's absolutely delicious.

And for sauce, I like the Don Pepino's, which you can find in any supermarket. It comes in a yellow can. I top it with fresh mozzarella and YUM!

I just bought some wintergreen altoids. I sure hope they are gluten free! I haven't tried them yet, but the ingredients look safe!

Does anyone know of any gluten free breath mints? Peppermint please. I used to like peppermint Altoids - are they gluten free?

The symptoms definitely sound like celiac disease. I wish I could answer your question about the testing. I know exactly how you feel about wanting an answer. I was dying to know what was causing my symptoms. Once I finally found out I was so releaved. I need to remember that feeling now when I'm so frustrated with it! Good luck!

I posted this in Parents of Kids/Babies with Celiac...

But thought I'd get extra opinions here since this is the symptoms/diagnosing forum.

My daughter has lots of symptoms:

--major gastro issues since infancy

--chronic constipation (takes Miralax daily)

--abominal pain that has become a daily thing the last couple months

--frequent diarrhea in between being constipated

--explosive tantrums

--gas

--foul smelling poops

--floating poops that are difficult to flush

--hip/leg pain off and on

--rash on bottom for a year and a half (did not respond to antibiotic creams, oral antibiotics, etc) that was swabbed for DH, will get results this week

She had a blood test last week--CBC, and the preliminary results were normal--tested for C-Diff bacteria, thyroid issues, etc. Normal.

We are still waiting on the celiac panel as it had to be sent out.

I also did a 3 day stool test and we got those results back today--NORMAL.

I am kind of concerend. Not that I WANT her to have celiac disease, but at least it is an ANSWER to her issues, and there is a solution. My big fear is that we will never get an answer as to what is causing all her GI issues.

How accurate is the stool testing? Can you have a negative stool test, but still a positive blood test?

Her gastro. says if all this is negative, we will move on to an ultrasound, etc.

Thanks in advance!

That's good to know. I have Bob's Red Mill and I think it's okay since I've used it to make other things, but I'll keep that in mind. It's so hard to have to worry about CC. It's hard enough for us to worry about keeping gluten out of our diet in the first place! Oh well, what can we do? I wish there was a gluten detector on the market. Like a light that we could wave over a plate of food and it would highlight the gluten!

I would definately suspect the buckwheat flour. I was 'glutened' recently by the Hodson's Mill brand.... it must be cross contamination in the processing plant.

That's very interesting to find out! I will definitely start rinsing it before cooking and always cooking it before eating. Thanks for sharing this!

Quinoa could be your problem - you have to rinse it thoroughly before you cook it- and if you're not cooking it.....

There is either protein/enzyme (don't remember which) on the outside, if not rinsed off that will give you gastric issues.

I learned the hard way!

Good possibilities. I'll have to think on that. My initial thought is that everything is safe, but I do know that I keep my flax seed in a jar. I will stop doing that. Gluteny fingers could be the case with my raisins... Thanks!

Is what you're baking this on safe? Or any jars you keep ingredients in, jars are hard to clean. Maybe someone stuck gluteny fingers in an ingredient?

I have made quinoa dishes and buckwheat pancakes recently and didn't have a reaction so I don't think that's the case, but I will definitely keep it in mind. I wonder if reactions sort of build up like if I had a little bit here and there and then I have a little bit more it sets of a reaction? Thanks for your help! I hope I get this figured out soon!

A lot of people react to quinoa and buckwheat.

Unfortunately my house is not gluten free. My husband still eats gluten galore. I cringe anytime I have to touch gluten and wash my hands afterwards. It seems too coincidental that I get glutened like this every time I have cereal though and not other times. I use the same utensils for the cereal as I do for other things. I'm trying to think if there is anything different about when I make cereal. I use different utensils on food that has gluten in it.

That's a good idea to try the cereal later in the day. I hadn't thought of that. Thanks for your help!

Just a quick thought.... Is your household gluten free? If not, that could be the culprit. Are your utensils and other bakeware, etc. gluten free that you're using to make this cereal?

It could easily be another intolerance popping up as well. Its not uncommon for celiacs to have secondary intolerances. It may also just be too much fiber in the morning. Have you tried eating it only later in the day to see if that makes a difference? I get sensitive to certain things if I eat them either too early in the day or too late in the day.

I do use milk, but I'm pretty sure it's not that because I'll drink milk other days and not have problems. I am interested in the possibility of combination intolerance. I had no idea that that existed! Can they test for that or do you just have to figure it out on your own? I'm going to see a doctor and dietician later this month so if I can be tested that would be great. I don't know though, the last two days I had buckwheat pancakes and eggs and felt okay (I didn't feel perfect yesterday though - but that could have been the grated parmesan from Safeway...). This is so hard to figure out! Thanks for your help!

My granddaughter is intolerant to the combination of grain and egg. My daughter uses an egg substitute in her baking because of it.

Thank you for telling me about the cottonseed oil. I will keep an eye out for that in other foods and see if that could be the culprit. Who knew that would be in almonds? I'll have to try some blue diamond almonds and see if those bother me. I hope not, I love almonds!

I have had problems with planters almonds because they have cottonseed oil in them. It gives me the same reaction as gluten. Might try to leave them out or get blue diamond almonds. Just a thought, cottonseed oil may not bother you at all.

It seems that lately I keep getting glutened when I make my homemade cereal (this is what initially started making me feel better because I was eating cereals like Puffins that had issues with CC). I have tried making my cereal multiple different ways to cut things out and it seems that every time I feel glutened. Does anyone have any ideas as to why this is happening? I thought it may have been the uncooked quinoa or rice so I cooked then baked the quinoa first (so it would still be crunchy) this time. I also thought it was the nuts and raisins, so I made it without them once and still felt sick. So I thought maybe it was the flax meal or flax seeds so I cut those out in my latest recipe and still feel glutened. I even bought a new pan and everything. I don't get it! Any ideas are more than welcome!

I will post the first and last recipes that I used below (there were many variations in between!):

Most recent recipe

3 Tbsp Buckwheat flour

2 Tbsp Planter's Almonds Sliced

2 Tbsp Raisins

1 Egg White (large)

1/4 Cup Quinoa (boiled, then baked first so crispy)

1/4 Cup Coconut Flakes (Kraft Bakers)

1 tbsp Honey

1 tsp Cinnamon

This is the recipe I started with

1 Cup - Any mixture of the following to make 1 cup - Rice Flakes, Quinoa Flakes, Flax Meal, Polenta (Corn Grits), Ground Rice

1/4 Cup - Flax Seeds

1/4 Cup - Quinoa (uncooked)

1/4 Cup - Nuts (I use flaked Almonds and chopped walnuts)

1 tbsp - Cinnamon

2 tbsp - Honey

1 - egg white (1 whole egg is fine too)

Optional:

1 tsp - Vanilla Extract (gluten-free of course)

2 tbsp - Rice Bran (for added fiber!)

Thanks so much for posting this. It answered some questions I had. I noticed that before being diagnosed my symptoms were at their worst when I was dieting/losing weight. I lost weight by eating a high fiber diet (gluten fiber of course). So I was eating very increased quantities of gluten just before being diagnosed. I almost wonder if I hadn't eaten the increased gluten and tried to lose weight, if I wouldn't have triggered celiac disease. Interesting to ponder.

I just use honey instead. I did read that log cabin country kitchen is gluten free (I think I read it on this forum) but I haven't tried it yet - I'm a little skeptical. If I want real syrup instead of honey I just splurge and buy the super expensive 100% pure maple syrup.

I read on here somewhere that Aunt Jamima Syrup was okay but the ingrendients list Caramel Colouring and this is on the forbidden list. Is it safe or should I not use it, I had some this morning?? Also what brand of syrup do you use.??

thanks

When I had mine done, I don't remember anything after them rolling me into the room and the anesthesiologist sticking a needle in my hand and it beginning to burn. I felt totally coherent and then I found myself being rolled into the recovery room all of the sudden. I came out of it slowly and barely remember what they said to me about what they found. My mom had to explain what they said later. It was really very easy. The only thing I noticed was that it was a little uncomfortable to swallow for about a day. Other than that, I wouldn't have even known that they did anything. I hope this helps! Good luck!

Does anyone who had both tests done at the same time remember anything from their Endoscopy? Please be brutally honest with me, I would rather know that not!

Holly,

I also have vision problems. It gets really blurry and I get dizzy and feel instantly "out of it." It's almost like I've been drinking, without the feel good buzz! I used to really notice balance problems before being diagnosed. I would literally stumble backward when simply standing still. My stomach always bloats up like I am pregnant. I also experience depression - which is not like me at all. Of course not fitting in your clothes and feeling stupid probably doesn't help!

I have been on the diet strictly for about 3.5 months. I also feel like I am reacting more intensely then I used to before going gluten free. I think I read in another thread that that is normal. I am very frustrated as well about the unknown glutening. It seems that I only get better for about 2 days, then get sick again. Last Monday, the only things I could think of was that I possibly breathed in oatmeal when pouring it from one container to another or my Amaranth Flakes cereal was contaminated (gluten free supposedly). Then this morning, I can't figure out what is causing it. I am questioning my planter's pecans and slivered almonds... possibly the Kraft Catalina sauce... my flax meal... I also have limited raw veggies. I have added back in dairy products though and am excited about that.

In case it is helpful, other symptoms I have are - foot cramping, D, a sort of pressure in my forehead (first sign sometimes), a small rash on the right side of my leg (when I get glutened badly) and I'm in the bathroom all the time!

I hope this helps you cope. I too like finding out that I'm not alone! Misery loves company.

Emily

Here is my question: Does anyone else have a hard time balancing (I drop things, too), seeing right (my vision is completely affected!!!), talking, and thinking when they are "glutened?" It all seems to be neurological in nature, but frequently I cannot pinpoint where I was exposed to the gluten - which seems to be common among our kind This makes me question the orgin of my symptoms. However, I always swell like I am pregant and get the other common symptoms along with the "weird stuff." If I knew others had these issues, I could relax.

I had no idea my hair was thinning, but when I went to my hair dresser after being diagnosed, she said that I had lost a lot of hair and that I had new hairs growing in. Crazy!

Several years ago, my hair fell out. Not completely, but it got really, really thin. I never knew what caused it, or what caused it to stop. But lately I realized this happened at the same time I was having so much trouble with my stomach, before I figured out I'd developed gluten intolerance. And since I stopped eating wheat, my hair hasn't fallen out again. Could there be a connection?

Libby