Understanding

[Roda]

It has been around 1/1/2 months since I have embarked on the daily diet of gluten free. I have found, after reading several other threads, that from the get go I am very eager to find alternatives for foods once eaten and have been expermenting a lot in the kitchen. My family has been really supportive and tries all the new stuff with a smile, and for the most part, has had no complaints. So far the only things that they don't like is the quinoa and my first attempt at a gluten free pizza crust. I have made another one since with better results, but I still am working on it.

I work third shift as an x-ray tech at one of the local hospitals so I have been really conscientious about taking my own food. Except vending machines or going out for fast food, there is no other alternative. I have two friends at work that have been really interested in the gluten free diet and they enjoy trying some of the new dishes etc. out with me. My one friend, who works in another department, was boasting the other night about some of the stuff I was making which sparked a conversation with everyone about my new diet restrictions. We are a small hospital so you get to know everyone and consider them your work "family". I have offered the other employees of this particular department some of my food to try, and they all look at me like I am trying to poison them. I guess I should not let it bother me, but most of these people are fairly educated professionals whom I thought were working friends. Every night they get something from one of the fast food or pizza joints. Most of them are overweight so I guess considering what they eat every night, it probably would be poison to most of them!!

I know that out in the general population there is a need for more education, so I can excuse some peoples lack of knowledge, but I was suprised by the lack of knowledge from medical professionals (most of us are nurses and other allied health professionals I am excluding our drs in this example) in general. I guess I was living in a glass house that just shattered. However on a positive note, I did find out that one of our physicians wife has celiac and also one of our lab techs. So I have been talking with them about various things. It gives me some other area of support. The interesting thing about a recent conversation with doc was that his wife was aided in her diagnosis by a nutritionist, the lab tech pretty much diagnosed herself through enterolab after negative serology, and I had pretty much diagnosed myself also, only the endocrinologist and gastroenterologist confirmed my hunch. I feel pretty confident that a good percentage of you are the ones that initiated your celiac diagnosis too.

Anyway, I guess I won't let it bother me anymore and just take comfort in the fact that I am eating healthy and making better choices to help my body heal.

Roda

gluten free Oct. 30, 2008

diagnosed via IgA tTG and biopsy 10/08

hashimoto's disease 02/2000

[Gemini]

It has been around 1/1/2 months since I have embarked on the daily diet of gluten free. I have found, after reading several other threads, that from the get go I am very eager to find alternatives for foods once eaten and have been expermenting a lot in the kitchen. My family has been really supportive and tries all the new stuff with a smile, and for the most part, has had no complaints. So far the only things that they don't like is the quinoa and my first attempt at a gluten free pizza crust. I have made another one since with better results, but I still am working on it.

I work third shift as an x-ray tech at one of the local hospitals so I have been really conscientious about taking my own food. Except vending machines or going out for fast food, there is no other alternative. I have two friends at work that have been really interested in the gluten free diet and they enjoy trying some of the new dishes etc. out with me. My one friend, who works in another department, was boasting the other night about some of the stuff I was making which sparked a conversation with everyone about my new diet restrictions. We are a small hospital so you get to know everyone and consider them your work "family". I have offered the other employees of this particular department some of my food to try, and they all look at me like I am trying to poison them. I guess I should not let it bother me, but most of these people are fairly educated professionals whom I thought were working friends. Every night they get something from one of the fast food or pizza joints. Most of them are overweight so I guess considering what they eat every night, it probably would be poison to most of them!!

I know that out in the general population there is a need for more education, so I can excuse some peoples lack of knowledge, but I was suprised by the lack of knowledge from medical professionals (most of us are nurses and other allied health professionals I am excluding our drs in this example) in general. I guess I was living in a glass house that just shattered. However on a positive note, I did find out that one of our physicians wife has celiac and also one of our lab techs. So I have been talking with them about various things. It gives me some other area of support. The interesting thing about a recent conversation with doc was that his wife was aided in her diagnosis by a nutritionist, the lab tech pretty much diagnosed herself through enterolab after negative serology, and I had pretty much diagnosed myself also, only the endocrinologist and gastroenterologist confirmed my hunch. I feel pretty confident that a good percentage of you are the ones that initiated your celiac diagnosis too.

Anyway, I guess I won't let it bother me anymore and just take comfort in the fact that I am eating healthy and making better choices to help my body heal.

Roda

gluten free Oct. 30, 2008

diagnosed via IgA tTG and biopsy 10/08

hashimoto's disease 02/2000

Roda......you are an extremely observant individual! One thing I have learned, and it was as much a surprise to me as it probably was to you, was that most of the medical profession are more, or just as clueless about food and nutrition as the general population. You would think that they would be more informed considering their profession but they are not. I really got to thinking about it and realized it's the way in which medicine is practiced today. There is absolutely no

consideration for the link between what we eat and disease states, and I think that the majority of disease in this country is at least indirectly caused by the American diet. I also think, and you may have noticed, that being in the medical profession does not make one any smarter about their own health, as evidenced by all the overweight doctors and nurses out there. We live in a denial heavy nation, especially when it comes to food. It's a pretty sad thing when medical people make a habit of fast food and then think you are trying to poison them with the healthy stuff!

The pay-off will come when, down the road, you are healthy and don't suffer from all the diseases that people do today all because they eat crap on a daily basis. I know, it's mind boggling to hear and see people's attitude over the gluten-free diet but after awhile, it won't bother you anymore. I feel sorry for those that have no clue what they eat everyday and then complain they don't feel well or gain a lot of weight and wonder why. Once you become accustomed to this lifestyle, you can even bake stuff and bring it into work and smile to yourself when people don't realize it's gluten-free because it tastes so good!

By the way, I also have Hashi's and Sjogren's and you know who figured it all out? Me. I was suspicious and requested testing on all 3 problems, at different times, and got my diagnosis. What I want to ask is what the hell do I need a doctor for if they can't figure it out and I can? So aggravating!

[Roda]

Roda......you are an extremely observant individual! One thing I have learned, and it was as much a surprise to me as it probably was to you, was that most of the medical profession are more, or just as clueless about food and nutrition as the general population. You would think that they would be more informed considering their profession but they are not. I really got to thinking about it and realized it's the way in which medicine is practiced today. There is absolutely no

consideration for the link between what we eat and disease states, and I think that the majority of disease in this country is at least indirectly caused by the American diet. I also think, and you may have noticed, that being in the medical profession does not make one any smarter about their own health, as evidenced by all the overweight doctors and nurses out there. We live in a denial heavy nation, especially when it comes to food. It's a pretty sad thing when medical people make a habit of fast food and then think you are trying to poison them with the healthy stuff!

The pay-off will come when, down the road, you are healthy and don't suffer from all the diseases that people do today all because they eat crap on a daily basis. I know, it's mind boggling to hear and see people's attitude over the gluten-free diet but after awhile, it won't bother you anymore. I feel sorry for those that have no clue what they eat everyday and then complain they don't feel well or gain a lot of weight and wonder why. Once you become accustomed to this lifestyle, you can even bake stuff and bring it into work and smile to yourself when people don't realize it's gluten-free because it tastes so good!

By the way, I also have Hashi's and Sjogren's and you know who figured it all out? Me. I was suspicious and requested testing on all 3 problems, at different times, and got my diagnosis. What I want to ask is what the hell do I need a doctor for if they can't figure it out and I can? So aggravating!

Thanks for the input. You know what they say when you assume. I have been wanting to go back to school for awhile, but I have had no idea what to do. I have contimplated furthing my education in the radiologic sciences, but since my diagnosis I have been having second thoughts. I enjoy what I do, but after 14 years of full time somethimes you just need a change. However, I do enjoy the medical profession so maybe I can turn my passion into some other area. I am seriously considering nutrition. I find it facinating. Mind you I don't profess to know much now, but hey, isn't that what learning is all about? Now don't quote me, but the doc in my last post I believe did not consider celiac until his wife's nutritionist mentioned it! He said he has been researching the literature (she presented with hashimoto's first then gi symptoms) and has been very informed.

I agree with you on a lot of healthcare professionals do not know alot about nutrition. You don't need a degree to eat sensibly and healthy. Just need some basic common sense. I am not skinny by any means, slightly overweight, but not obese. I could stand to loose around 15 lbs but I have lost 10 lb since Sept. I don't think it is a matter of what I am eating but more of I am not burning enough calories from lack of exercise. I have been anemic which the last I knew resolved, but my last ferritin level was only 6. I am being checked for other deficiencies but do not have results back yet. I have been suffering from a great deal of fatigue and no energy. I am hopeful as I get further along this too will improve. I have two little boys who enjoy bike riding!!

It would be interesting to note in a survey how many of us were the catalyst is getting our diagnosis. Someone may have already done this. Just curious.

[Welda Johnson]

Hi Roda,

I've just got to reply, because your post sounded so knowledgeable considering the short time you have been diagnosed. You sound like a patient, kind, loving, concerned person, and I do hope that you follow your heart when deciding what to do next as a career. I've had Celiac symptoms since age 8 and am now 64. The long story of learning how I determined that Celiac was the culprit is better saved for another day, but after exhausting all my funds for medical specialists, doctors, tests and hospitals, I finally realized that when I went without eating I could actually breathe (mine manifests as Asthma, digestive disturbances, depression, anxiety, hyperactivity, etc.).

So in my 30s I started fasting, then adding back one food at a time, or eliminating whole food groups. I learned that all grains gave me grief. Then I learned that all milk & dairy products caused me problems. Then I discovered that egg whites & yeast bothered me, then casein & whey. Sometimes even meats & poultry give me problems, so I eliminate them from my diet. When I went for a colonoscopy one year, a nurse looked at the list of foods to which I am intolerant and said, "Oh, you have Celiac." I had heard the name for it before, but her comment sparked me to get on the internet, to learn all I could, and to be even more diligent in my quest for good health.

Reading labels became a large time-consumer. Cooking at home and eating out less followed. Learning to take my own food with me wherever I went helped me stay on track. I also learned that peoples' ridicule needn't affect me, though at first I felt devastated at the taunts and jeers that I experienced at work, with friends, or with family. Now that I'm healthy, fit, and excited about life, nobody says a word. I just take good care of myself and thank God that I now know what caused the illnesses in my life (and I include depression and anxiety in the category of illnesses).

I am a retired school teacher, but am also a writer, so I have written a story about my grandson's journey with Celiac called, "Grandma, Can I Eat This?" as well as a cookbook/guide for those attempting to go gluten-free. It is a simple concept to stick with this diet once you begin feeling well, and your "brainfog" diminishes. I am wishing you so much favor as you join us on this journey. Best wishes to you Roda! Welda

[Gemini]

Hi Roda,

I've just got to reply, because your post sounded so knowledgeable considering the short time you have been diagnosed. You sound like a patient, kind, loving, concerned person, and I do hope that you follow your heart when deciding what to do next as a career. I've had Celiac symptoms since age 8 and am now 64. The long story of learning how I determined that Celiac was the culprit is better saved for another day, but after exhausting all my funds for medical specialists, doctors, tests and hospitals, I finally realized that when I went without eating I could actually breathe (mine manifests as Asthma, digestive disturbances, depression, anxiety, hyperactivity, etc.).

So in my 30s I started fasting, then adding back one food at a time, or eliminating whole food groups. I learned that all grains gave me grief. Then I learned that all milk & dairy products caused me problems. Then I discovered that egg whites & yeast bothered me, then casein & whey. Sometimes even meats & poultry give me problems, so I eliminate them from my diet. When I went for a colonoscopy one year, a nurse looked at the list of foods to which I am intolerant and said, "Oh, you have Celiac." I had heard the name for it before, but her comment sparked me to get on the internet, to learn all I could, and to be even more diligent in my quest for good health.

Reading labels became a large time-consumer. Cooking at home and eating out less followed. Learning to take my own food with me wherever I went helped me stay on track. I also learned that peoples' ridicule needn't affect me, though at first I felt devastated at the taunts and jeers that I experienced at work, with friends, or with family. Now that I'm healthy, fit, and excited about life, nobody says a word. I just take good care of myself and thank God that I now know what caused the illnesses in my life (and I include depression and anxiety in the category of illnesses).

I am a retired school teacher, but am also a writer, so I have written a story about my grandson's journey with Celiac called, "Grandma, Can I Eat This?" as well as a cookbook/guide for those attempting to go gluten-free. It is a simple concept to stick with this diet once you begin feeling well, and your "brainfog" diminishes. I am wishing you so much favor as you join us on this journey. Best wishes to you Roda! Welda

I think, Welda, that you should receive an honorary medical degree! Good luck with your writing...what a fantastic way to teach others about Celiac!

Roda......I also have a big interest in nutrition and that's the main reason I did so well on the gluten-free diet and had little problems adjusting. When you know food and what's in it, that's a big first step to getting things right. I think it a great idea that you are considering going back to school for this....we need more Celiac nutritionists that have the disease themselves. Sounds like you would make a good one! You are also young enough to take on the task. That would have been my second career choice and now feel I am too old to return to school and compete with the younger students. It does get harder as you age. Whatever you decide, best of luck to you. You have a lot of common sense and will do well.

About your thyroid.....I also have Hashi's and, after 3 1/2 years gluten-free, I may be able to cut back on my dosage for Levoxyl! My thyroid function has stabilized and is improving so hang in there! I am older also (49) so miracles do happen!

[Roda]

Welda-

At least youhad one observant nurse during your colonoscopy!! I would very much love to read your book about your grandson. I wish I could express in words what I feel. It is so enriching.

I had been researching for about four months iron deficiency and hashimoto's disease and what kept coming up? Celiac! I was on a crusade to find out why for over 2 years I had developed anemia and iron deficiency. Until reading about celiac, I never considered the 2 years of heart burn and the life time of constipation/bloating (worse over the last few years) as anything important. After about a week on the diet they were the first things to go away!! When I went to consult with the nutritionist I found that I knew majority of the information she gave me and even found a mistake on her pamplet! I guess my nerdiness paid off.

Gemini-

The thought of going back to school at my age, yeah I know I'm "still young enough", seems a little daunting. Sometimes I think if I had not went to school right after highschool, I may not have went at all. I think I will give it more serious thought when my youngest starts school. I don't thinkyou are too old to "keep Up". I work with a lady that was the director of our department, retired, now working prn for mad money, and wanting to go back to school in some area of naturopathy and herbal remidies. She is in her early 50's, a grandmother, and probably the most "young" person I know. She lives life to the fullest and is happy with the simple things. I think we all could learn a lesson or two from people like her.

I don't know if I will ever get to the point of needing less thyroid meds. I take levothyroxine 125 mcg and 10 mcg cytomel a day. I have had Hashimoto's since 02/2000. I do belive now that the celiac has been around probably some time after that. I guess I'll never know.

Roda

[SandyStPeteFL]

Hi, I did not self diagnose but I did know something major was going on with me. Every time I ate, my stomach would extend to the point I could not even sit comfortably. And be as hard as a rock. And the gas issues, OMG!!! don't even want to go there. My doctor thought it was gall bladder and sent me in for tests. Sure enough they found the GB was only working at 10%. Off to a surgeon. He decided to do an endoscopy and a CT with contrast to see if I had gall stones. The CT came back negative for stones, the endoscopy came back with a diagnosis of Celiac. Then I went back to my doctor for the blood work. It came back positive as well. So here I am!!!! I am ever so thankful the surgeon wanted to do more tests before a surgery. Never did get the gall bladder out and I am no longer having the issues I had. My GP doctor sent me to a nutrionist. Very helpful. All the things you read, hear about, wonder about.....can give you nightmares. The nutrionist was very helpful in sending me along the right path.

My husband is not gluten free, he still has bread and crackers in the house. All other items, such as flours, pastas, cookies, etc are now gone. He can't give up his bread and crackers. We mark all items such as butter tubs, peanut butter jars, jam jars, mayo jars etc with a gluten-free written on them for me. He knows not to use them unless he uses the "plop" method. We try to buy most stuff in squeeze jars and that way we don't have to worry about them.

I have been glutened a few times by my own errors. I do read all the labels, and try to go from there. I REALLY, REALLY miss my pizza. I have always been a bread freak and now.....I get to enjoy that cardboard stuff they call gluten free bread. I am learning though.....new menu items that are quck to throw together. Since I work I have to cook or fix something every night. Can't quite trust the hubby to do it gluten free.

I am also learning to trial and error the different gluten free foods. Some that come highly recommended, I don't like and vice a versa. I have learned that the rice pasta makes a great cold pasta salad. No such much for a hot dish though. I serve sauces over the gluten free bread that has been toasted. It stands up pretty good to the sauces.

I still freak out when we got out to eat. I got glutened at a major chain rest. the other night and was so miserable afterwards. And they have a gluten free menu. But they screwed up my order and when it was sent back, I think they forgot it was to be gluten free. Within 20 minutes of eating, I knew I had been "compromised".

I suffered my whole life being anemic, very thin and with gastro issues. I just wonder if all of that was a precursor to this now.

Anyway my point is being a nutrionist is a wonderful thing, people who get diagnosed with Celiacs really have limited sources for help. My nutrionist was a GREAT help.

[ang1e0251]

I agree with you about the bread, yuck... I just use corn tortillas in place of bread. I like them toasted first. I also use them to make PIZZA!!. I toast them first so they are crispy then bake the pizza. Very tasty and fast. Try it!!

[one more mile]

I find it a little amusing how people react. I had a friend who recoiled in horror and said she would die if she could not eat wheat. But then I remember how I at one time ran to the bagel store like a person on crack and ate half of them

before I got home. Wheat/gluten really was like a drug for me. As bad as it made me feel it also sedated me and at times I really miss it. I miss the buzz that I got from food. It is odd now eating with out the buzz. I really, really miss it.

Some days I feel like, why eat? Of course I feel so much better now I would not want to go back to the pain and the bloat.

I think when I tell people how I eat they often are afraid that I will say something that will take away their morphine.

Many of them know that how they are eating is not right for them but they probably need the daily high like I did .

It's just fear. A 300 pound nurse dose not want to be forced to look at what she is eating. I at 180 did not not want to have to look at it either.

I have a male friend who is in health care and very smart, He has also been depressed for the 10 years that I knew him. When I turned down a cookie he asked if I was Celiac, I said yes. He said oh they want to test me for that, mumbled then ate some more cookies. I felt bad for the guy. But then I did the same for along time. I am so glad I am on the other side of the wall now.

one more mile.

[Roda]

So here is a little update. Most people still look at my stuff and think it is yucky. I've made some pretty good stuff, so I'll enjoy and they can eat their hearts out . I brought in some gluten free mesquite banana bread to share with a couple of people. One of them was one of the people in my first post I mentioned had celiac. This person is doing well and feels like she has been healed. (I think they are very spiritual people) While she does mostly remain on a gluten free diet, she does indulge on non gluten free things once and a while and feels alright. I find it sad actually that there is still such an general lack of knowledge that celiac is for life. So I have a question. If one is just gluten intolerent can it eventually lead to celiac? In this case I think it is celiac since, IMHO, there are other clues.

[TotalKnowledge]

Its different, people don't like to try different stuff. I was always adventurous in my cuisine choices, it is probably one of the things that has kept this all a lot easier for me.

I for one like to try and spread the word about Celiac Disease so that other who may not have thought to otherwise will take a serious look at their diet and may help to improve some peoples view on it.

I know prior to this I always brushed off the idea that "organic food" was better for you than "regular food" even just in the act of eating gluten free a lot of my thoughts in this area have changed. I do think the organic label is perhaps a misnomer and one that was poorly chosen for wide adoption. It just goes against the thought processes of main stream America. Additive free food would be better maybe. Who knows. It is time for America to wake up and pay more attention to what they eat.

[ElleReigh]

I know prior to this I always brushed off the idea that "organic food" was better for you than "regular food" even just in the act of eating gluten free a lot of my thoughts in this area have changed. [...] It is time for America to wake up and pay more attention to what they eat.

Amen. I credit my Celiac diagnosis for forcing me to wake up to what is really in my food. Granted, it is scary to try new things and to have to make such radical changes to your everyday life, but I really think what I'm eating has only changed for the better- Celiac or not.

[no-more-muffins]

Oooh, this has been a very interesting thread.

Roda, I had an expereince today that made me feel just like you felt. A good friend of mine came over today and I handed her a bag of some spice mixes and sauces. I told her they had wheat in them and that I couldn't eat them. She looked at me and said, "so you're really going to do this?" I told her, "Yeah, I really am and I have been for almost 4 weeks". I told her that I had made some muffins today with some new flours that I got in the mail today from Bob's Redmill. I said they turned out really good and you really couldn't tell that they were gluten-free. I gave her one to try and after one bite she said, "Do you mind if I don't eat the rest of this?" I asked her if she thought they tasted different and she said that they were weird. For some reason it really hurt my feelings. It kind of made me feel like a freak and that she really doesn't take my dietary changes seriously. It is interesting too because she seems to be a bit obsessive, she has kids with eczema and stomach problems and she gets sick whenever she eats out. Her hubby has type 1 diabetes and she feeds her family crap. I keep thinking that this diet change would probably be good for her family, but she can't see at all how this could possibly help her because she isn't "sick". Anyway, I know it is a long story, but it is hard when people treat you like a freak, or that you eat this way because you think it is fun or whatever.

Also, I have been thinking the last couple of days that it would be fun to go back to school and study nutrition. It's funny that you mentioned that. I too have really looked at food and nutrition lately and really thought that Americans are so sick because of what we eat. I have always tried to eat healthy but I feel like I know a lot more now. I am kind of also waiting until my youngest goes to school. She's almost 2 so I have a few years.

[RESO]

[i told her that I had made some muffins today with some new flours that I got in the mail today from Bob's Redmill. I said they turned out really good and you really couldn't tell that they were gluten-free. I gave her one to try and after one bite she said, "Do you mind if I don't eat the rest of this?" I asked her if she thought they tasted different and she said that they were weird. For some reason it really hurt my feelings. It kind of made me feel like a freak and that she really doesn't take my dietary changes seriously.]

Hi NMM,

As someone who cooks for myself and other people fairly often (I live alone and it's just as easy to cook for 10 people as it is for 1, so I usually make large amounts of things, freeze some and share some with friends, neighbors, etc.), I understand how you feel when someone says something you've made is "weird." On the other hand, a lot of gluten free food does taste strange, takes some getting used to, and substitutes that taste really good are always a nice surprise for me (Trader Joe's gluten-free french rolls, for example, TASTE LIKE BREAD and they toast up nice and crunchy, though they are shaped/textured more like high end hamburger buns than french rolls IMO).

Basically, my point is that she could have been a little kinder in her delivery, but most gluten-free muffins, breads, etc. take some getting used to. Don't take it personally, I'm sure you did an awesome job making them and I bet they taste great!

Take care,

R

[tarnalberry]

My husband generally doesn't eat my muffins either - the gluten free flours DO taste different, and even have a different texture. Some people have a wider range of 'acceptable tastes/textures' than others, and she didn't even have the benefit of trying to get used to the taste. It's not in any way a reflection of you, and doesn't necessarily mean that she's not taking *your* need to eat gluten free seriously, but simply chooses not to join in with your muffins.

[no-more-muffins]

Yeah, I know I shouldn't take it personally, but it was kind of just the moment where I was happy and proud of the muffins I had made and it kind of burst my bubble and reminded me that I am "different" now. It was sort of frustrating too because she has talked and talked and talked to me about a problem she has been having for the last few months and I just dont' feel like she provides a very good listening ear for the things I am going through right now. I think the combination was just bad.

[TotalKnowledge]

Its just different. It isn't Jiffy or Merita. If you cooked them homemade bread they might think it tastes weird let alone the gluten free kind. The Pamela's pancake mix is really good. I have only tried the pancakes, I need to see what biscuits made with it are like.