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How Long Have You Been Gf And How Do You Feel?
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36 posts in this topic

Just thought it might be nice to see everyones progress, so if you could state how long you have been gluten free and the improvements you have seen or how you are currently feeling, that would be great! :D

Thanks in advance for your input!

Lisa

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:) Hi Lisa,

I have been gluten-free since April 2002 and Dx May 2002. It was slow going, b/c my iron stores (ferritin levels) were almost non existent. It took about a year or so to get my energy levels up. But when they did come up, along with my bloodwork, I felt better than I had in 10 years :lol:

I was Dx with a wheat allergy as an infant that they thought I outgrew. I was miserable on and off for years with what we now know is DH and anemia. Finally in Dec 2001, I got really bad. Initially was Dx with cancer. After months of various docs and no help, a GI doc told me about sprue and I should go online to find out more. I found Dr. Green (thank GOD!).

It isn't easy eating out (previously a fav past time), but I wouldn't trade how I feel now for anything. I'm still careful with nutrition and rest. I started to see progress after 2 wks of gluten-free (the DH calmed down). In about 3 months, all blood work was creeping up!

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:( Hi Everyone, I'm new here! I actually do not have Celiac Disease, I had both the blood test and biopsy, but I must be gluten intolerant or allergic. I diagnosed myself almost two years ago after switching from low carb eating to Weight Watchers, I started having bad symptoms that I narrowed down to eating wheat. Symptoms were mostly intestinal (bloating and gas) but after giving up wheat I felt better in a lot of ways. Problem is, I cheat a lot, especially during the holidays. I can't seem to find the willpower to stick with it. I need to lose quite a bit of weight too. Any words of wisdom? Also, my gastroenterologist said to just keep wheat to a minimum, I know thats not good advice. I suspect I have other food allergies, mainly tomatoes and onions. I don't know who I should see next, allergy doctor, nutritionist, or if I should just continue on my own doing what my body tells me to do.
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I've suffered with symptoms of celiac since the age of 8, and now I'm 59. It took years of dealing with specialists, with allergists, with Asthma doctors, etc. to finally realize that they didn't know what to do either.

After getting tired of the persistent wheezing, Asthma attacks, depression, mood swings, irritability, ulcers, and hospitalizations, I began to fast, avoiding food altogether at times, since that seemed to be the only way I could survive and even begin to feel alive. I would begin to breathe well, then would have to eat and would be wheezing and feeling lousy again.

It began to dawn on me that certain foods made me feel worse, especially wheat and milk products. When I stayed away from them I felt better. It was only two years ago that I learned that I have celiac, and what a relief it is to have a name for this disease.

I've had many downfalls in my efforts to be gluten free, milk and dairy free, and egg white and yeast free (I've learned I'm allergic to these as well), but now that I feel so great, I wouldn't cheat for anything. There is no way that anyone else can sway me when it comes to sticking to this diet--it is a matter of life and death (my father died of colon cancer, and there is speculation that celiac may be a predisposing factor in some cancers).

About ten years ago I discovered The Carbohydrate Addict's Diet, devised by Drs. Richard and Rachel Heller, and now, after struggling with weight most of my life, I

weigh 108 at five feet tall. Anytime during 23 hours of the day I can eat protein and low carb vegetables, and one hour each day I can eat or drink anything I can tolerate. I have so much energy and stamina it is incredible.

I am happy to be on this path of recovery--it took awhile to realize what was happening, but now I take control of my diet each step of the way. Good luck to those of you just learning what your bodies can tolerate--it is so rewarding to learn that we have the healing power within ourselves, and that our bodies will give us the signals we need in order to heal. Welda

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Hi there.

I am one of the fortunate few who was diagnosed early on. My mother went through all of the worst symptoms, and misdiagnosis, and finally was told she had Celiac. She told me to be tested as it is hereditary, and it was caught in early stage (microscopic). I am glad that my Mom has been on the gluten-free diet for a year now, as she can help me and my wife with what to cook, and what to eat. I have been gluten-free for about two months now. The funny thing is that I can notice a difference in my eating habits, and my energy level. I have a better appitite (not always feeling sick to my stomach) and have more energy. :lol:

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Hi, Lisa!

I've displayed clusters of the more obscure celiac disease symptoms for pretty much my entire life: canker sores and frequent infections (I got mono when I was three!); gingivitis, cavities, and nocturnal bone pain; acne, migraines, and endometriosis; severe depression, anxiety, and chronic fatigue syndrome; lifelong problems with a furred tongue and periodic vertigo; and finally, after I went wheat-free for my breastfeeding baby's sake, cramps and unique-smelling diarrhea when I ate barley (or rice that I cooked afterward in the same pan!). I have had all kinds of episodes of pain or other symptoms doctors could not explain that, in retrospect, I am sure were acute exacerbations of celiac disease.

I suspected celiac disease only when my second child developed foul-smelling, bulky stools after I began giving him rye crackers to teethe on. His older brother had had EXACTLY the same symptoms but hadn't been wheat-free, so his pediatrician had blamed fruit juice. Our new pediatrician explained (when I asked) that she would not suspect celiac disease in their cases because they are very tall (80th-95th percentiles) and hitting all their milestones--but when I explained my symptoms and reported that I had had a non-zero salivary anti-gliadin antibody test (performed as part of a chronic fatigue syndrome panel) even after months of consuming virtually no wheat products, her eyes got wide and she started talking about false-negatives and family history and maybe getting both boys tested for celiac disease!

Unfortunately, conventional testing would be a difficult option to pursue, partly because we have no health insurance right now but also because I am not yet healthy enough to cope with putting the boys through a gluten challenge! Their behavior deteriorates incredibly fast when we have an accident. Besides, I am philosophically opposed to deliberately mutilating my children's bodies just so doctors can ignore the evidence that is right there in front of them in favor of performing some unreliable but lucrative tests! And doing a gluten challenge myself is entirely out of the question since I very quickly become borderline suicidal with repeated exposure to gluten. Later this month I will order stool and/or gene tests for us all (even my husband) from Enterolab to confirm what I already know (or suspect in my husband's case).

Anyway, I know you asked about our experiences with being gluten-free, but since I only went totally gluten-free a couple of months ago I figured I would just lay out my background with celiac disease. I have been wheat-free for about a year, though, and even that much has produced noticeable improvement in my emotional stability and sense of worth and well-being. Now I am in the hardest part of the gluten-free learning curve--NOT beating myself up when an accident happens! I get so frustrated, though, because I LIKE having a clear complexion (well, almost) for the first time since I was a child, and I like not feeling (quite so) bloated after every time I eat, and I know my family and friends REALLY like not having to walk on eggshells around me all the time in fear of setting off a bout of sobbing self-denigration!

I've been wondering about the seemingly slow pace of improvement in myself and especially in my children, but then I remind myself that it really has been only two months or so and we have had several accidents (which is only to be expected this early in the game), so I guess it is too soon to get frustrated! I am terribly jealous, though, of everyone who reports feeling sooooo much better in just a couple of weeks! Why can't I? After all, my symptoms are so "mild" that my mother thinks I'm "creating" them by "believing" that gluten will harm me! Thank heavens I HAVE healed enough to be emotionally capable of dealing with her reaction, even though it is unhelpful and unkind!

Above all, I am eagerly looking forward to meeting the "real" ME, instead of the subdued shadow I have been all these years!

--Sarah

P.S. Eileen, you MAY still have celiac disease, no matter what the blood tests and biopsy indicated. Both sorts of tests are subject to human interpretation and human error. In addition, the blood tests can come back false-negative if you have IgA deficiency (an immune system problem that is more common in celiacs), and the biopsy can come back false-negative if the inflammation in your intestines is only patchy--the doctor may miss it completely when collecting specimens since it is not usually visible to the naked eye! You may want to consider visiting the website I mentioned above, Enterolab, and possibly order a test or panel of tests for yourself to confirm or disprove what your doctor has told you. It is quite common for celiacs to have secondary food sensitivities, and some of these will go away as the body heals the damage wrought by gluten. I hope you decide to pursue the matter, for your own peace of mind if nothing else! Best of luck to you!

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Hi everyone.

I celebrated a year gluten-free on December 27! I feel so amazing and am still noticing changes in my health. I had a lot of stuff going on before and never realized they were all connected, nor that they were even symptoms at all. Here are some of the things that I DON'T have anymore after being gluten-free:

-- asthma (I was on medication since I was little)

-- anemia (doctors even did a bone marrow exam, but still couldn't figure it out)

-- gas and bloating, generally uncomfortable feeling all the time (but thought this was normal)

-- abdominal pain sometimes

-- burping a lot

-- diarrhea at times, which I believed were the results of a lactose intolerance or rich food or

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I have had a variety of symptoms since I was a baby, but was healthy enough to never question celiac disease as being the problem. The real problems started for me around my first pregnancy. I gained enough weight, but I was all belly. I never gained the extra pregnancy weight even though I ate everything in sight. I lost all of the pregnancy weight and an additional 20 lbs or so within 2 months of delivery. I have pictures that look like I must have adopted the baby because I was so thin. The weight just kept coming off and the doctors said this was normal, all in my head, or just prescribed prozac and things so I would stop bothering them. After numerous doctors I finally found one who listened and had thoughts about what was really going on in my body. Almost a year later I was finally diagnosed with celiac disease (Oct 2003). I'm happy that I have a doctor for life who I can trust. My gallbladder is gone, my stomach is functioning, I'm off most of my medications, and I have gained weight. Overall this has been a great year. (My daughter was blood tested twice for celiac disease and is negative - at least for now.)

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Hi Lisa,

I have been gluten-free for a year. I feel pretty good. My biggest problem is flatulence after meals and a tiny wheeze with accidental ingestion of gluten or too much dairy. :( Do you need to take any supplements for possible malabsorption? (Perhaps folic-acid or calcium)

I hope this helps...

Tammy

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I have been gluten free for 3 years and am just beginning to adjust. The gluten free was easy. But after 50 years of misdiagnosis, I had many-many problems to overcome. My immune system is taking a long time to recuperate. My intestinal tract felt better in about six months. But the vertigo, soft nails, multiple allergies, bacterial & viral infections, plus osteoporosis, peripheral neuropathy, etc. are taking a lot longer to resolve and some may never resolve. You who are diagnosed at a young age are very lucky to have gotten a definitive diagnosis. You all have a chance to heal properly, just be very patient. Shirley whitley

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Shirley, it's hard to believe we are reaching our 3 year anniversary already! Like Shirely, I am still "in recovery." One year after going gluten free I felt better than I'd ever felt in my life (and I still do) - but I've problems with recurrent clostridium difficile infections (caused by antiobiotic use when I had pneumonia, before I was diagnosed with celiac). I also have mutiple food allergies because I wasn't diagnosed until I was 40. I still am unable to eat ANY dairy (even butter) because of a profound casein sensitivity. I also have to avoid all corn, soy and some nuts. I did NOT feel better the first 3-4 months because I hadn't identified the dairy / soy / corn problems. After I figured those out (through an elimination diet and ELISA blood testing) I started feeling better.

Happy Anniversary Shirley! ;)

Laurie

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Hello, I am new here. . .I found out I had celiac disease about 9 months ago. I had symptoms from as far back as kindergarten. When we finally went to a doctor they always said IBS which my mother has but the symptoms were not exactly the same. The years past and by the time of my senior year I was getting sick everyday with terrible diarrhea. I had moved to a new state and had a new doctor as soon as I told her about my problems she knew it was an allergy to food and tested me. From the day we got the results back I have been wheat free. There have been a hand full of times where I ate wheat without knowing it and got really sick but I am still learning. It is still hard for me when I go out to eat. I get so scared of getting sick. I will just not eat than risk the chance. When I go on vaction I take my own food which lets me eat. The only bad thing that has happened to me as result of being wheat free is that I have an anxiety problem. I was sick everyday and now I am not and I have the fear of getting sick anytime I go anywhere. I had stopped going out with people or even to the store. I would stress at college in my classes. My docotor recomended a therapist and I take some anto-anxiety pills which help a lot. I now do better and go out. I am always learning new things each day. Well, that is my story.

Kristina

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Hello everyone. I'm new here also and new to celiac disease.

I was diagnosed with celiac disease quite by accident on November 2nd of 03. It was the most wonderful day of my life next to my wedding and the birth of my two children. ;) For the last 10 years I have felt that I was falling apart and had no idea why. Now after being gluten-free since the diagnosis, I feel like a new woman. I have lost 15 lbs after gaining over 80 over the last 3 years. I was suffering from depression and anxiety. I was to the point that I couldn't leave the house unless it was a major necessity. My husband and children all thought I was crazy and to tell you the truth I thought so too. I couldn't explain it and neither could anyone else. I would never have imagined that it was caused by what I was eating.

Back in August I hurt my knee and when I went to have it checked out this wonderful new dr. to our area started asking a lot of questions about my health. I just turned 52 on Nov the second and he wondered if I was having any pre-menopausal problems. I told him about everything that was going on and he decided to run some tests to see if it would be possible to go on HRT. Since there was history of cancer, diabetes and heart disease in my family he decided to do a colonoscopy to make sure I was okay. He sent me to the Gastroentrologist and he asked further questions, like have you had any problem with indegestion or heartburn and I told him that I had been having problems with just about everything I ate anymore so he decided to do the Endoscopy as well. I would gladly go thorugh both of them again to get the same results. Now don't get me wrong, I'm not glad I have celiac disease. I'm just glad they know what I have. In just the short amount of time that I have been gluten-free, I am a totally different person. I can be with my family and not be on edge the whole time, I can go out in a crowd and not feel like I was being smothered. In fact my husband and I just got back from a wonderful christain concert in NC where we brought the new year in with over 20,000 people. I'm still having a hard time dealing with eating in restaurants and I do get a little frustrated with being unable to find the things to cook with. The only place that carries any gluten-free products is the local Food City, and that's just rice flour. I live in a little town in southeastern KY and no one here has ever heard of gluten-free products. :( I guess that's why I was so surprised and thankful that a dr. actually found out what was wrong. My family dr. who we have been seeing since 1975 couldn't find anything.

I'm so glad I found this site, because all that I have learned about celiac disease has come from celiac.com Even the dietician I see had to go online to find out what celiac disease was.

I'm also glad that I was invited to join this group. I couldn't find anyone who could talk to me about celiac disease and the things that I am going through. Thank you all for letting me know that I'm not alone with celiac disease.

Lucy from KY

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Wow! Thanks everybody, and hello back to everyone, keep 'em comin'!

Tammy,

I would say that I think digestive enzymes (I use plant enzymes) would be a good thing for you, I won't recommend a brand because I haven't done my research yet. We had a good little discussion on this subject on the thread started by Lily, I think it was entitled "I Know What Is Wrong, When Will I Feel Better" or something to that effect. She has just gone to a nutritionist that recommended some supplements and posted them there. I personally think the supplement for leaky gut sounds like something to try. I also mentioned somethings I have read that may help you, if your still having problems I think you really have to look deeper and see why your having that gas and so on. Welda always makes good points about other foods that may be bothering some of us that haven't obtained total relief, I think it is important to remember it can be other things your not doing well with as well, at least during the healing process. And speaking of supplements....

Kristina, have you ever gotten any good B vitamins into you? There was a study in one of the articles I read about Celiac patients still suffering from anxiety/depression after a time of being gluten-free and then they put them on Bs and it improved for many....I'll have to look that up, it was in the archives on this site.

It is so nice to read everyones experiences, I know many of you have posted a lot of this info before, but for all those that are finding this site this is great. Thank you...

Lisa

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Hello Everyone and Happy New Year to all

I am new here but not new to celiac disease. I was diagosed as a baby but it was thought I outgrew it. In fact I did not even know what it was.

I am 56 I do not have pain or bad sysmtoms, and am overwieght so doctors all say no way josa. <_< Your just getting old, you have to loose wieght, all the doctor-type anwsers, but not quite hitting the mark. ;)

What I do have is ashma, cronic diarrhea, diabetes, leg pain for no reason the list goes on .

So started to do my own research. Well we all know what I found.

My daughter suffers from all of this and depressioin, endometrious --hystorectomy at 27. :( And mood swings OMG. Now we are both trying to get well.

I am so glad I found this page. Not only have I validation for what I know to be true, there is great support here. :D

Thanks all

Daywyn

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Happy, Healthy 2004 to everyone, old and new!

And thanks, Lisa, for asking for progress reports. Good idea. I'm enjoying reading everyone else's. I haven't posted for a while but I've been reading everyday and always learn something new.

January 11th will be my 6-month gluten-free anniversary. Overall, I'm steadily improving. The mental relief, alone, of finally knowing what's going on with my body, has turned my life around. Here's my report:

Mouth ulcers: Frequency and severity diminished immediately after going gluten-free! I'd say they are 80-85% improved.

A happy side note: My last teeth cleaning showed significant gum health improvement! I had oral surgery several years ago and seemed to be heading in that direction again, but no. Hooray! I've been brushing my teeth with only baking soda and water for over a year, as well as using a proxy brush dipped in diluted hydrogen peroxide in between my teeth (and flossing daily, of course). It's doing the job well! There are too many ingredients in toothpastes that could be a problem - gluten, of course, but also SLS (sodium laurel sulfate). SLS has been shown to cause mouth ulcers in some people. No, thank you!

Diarrhea: Got worse at first. Now it's only a day or two every couple of weeks.

A happy side note: I've gained 13 pounds since going gluten-free! I no longer look anorexic. I'm now at a weight that feels right for me and have started taking exercise walks again.

Bloating: Instead of days on end, it seems to happen only when I overeat now.

Abdominal ache: Infrequent now.

A strange neck/throat sensation that feels like it's swollen on the outside and tight on the inside: Used to happen quite often but has only happened a couple of times since going gluten-free and not for a couple of months now.

Since going gluten-free, I've developed the following symptoms:

Itchy Scalp: Started about 2 weeks after going gluten-free and hasn't quit yet, although sometimes it's less irritating than at other times. In fact, maybe someone can answer this question: Is salicylic acid gluten-free? I think I read or heard somewhere that it is NOT safe for us to ingest but I can't, for the life of me, remember the source. <_< Salicylic acid is a preservative and flavoring agent in aspirin and I know that some aspirin isn't gluten-free. Anyway, I'm asking because Neutrogena sent me a list of their gluten-free products and after using their "Healthy Scalp" anti-dandruff shampoo (that they say is gluten-free), my scalp began itchin' like crazy! It contains 1.8% salicylic acid. Needless to say, I stopped using that shampoo, and I'm back to wearing hats to help me resist scratching. I can't wait for my scalp to calm down!

A happy side note: It doesn't help that I now have stronger, longer fingernails, in terms of the scratching, but.....what a delightful surprise my nicer looking nails has been! I've never had nails this nice. I take this as a sign that my body is now absorbing calcium much more efficiently and I'm keeping my fingers crossed that my lower back osteopenia is repairing itself.

Itchy red splotches: About 5 months after going gluten-free, several small red splotches (intensely itchy and like pinpricks when touched, too) errupted all over my upper body. They were easier not to scratch than my scalp, but it took a major effort. They lasted about 2 weeks and haven't reappeared, fortunately.

Knee bone pain: About a month after going gluten-free, my knee began to feel and act weird. There was one spot in particular that would cause a sharp pain every time it hit the cabinet door when I stood at the kitchen counter. I was SO close to contacting yet another doctor, but decided to wait it out a little longer, and it disappeared. So far, so good.

Am I happy to be gluten-free? You bet. Eating away from home is the most difficult part. Planning is the key. Have food, will travel! Don't leave home without it! I have to push myself to prepare my own food sometimes, but I'm always happy when I do. Being gluten-free is well worth the effort.

Each of our stories is so unique, yet there are also so many common threads. Thanks to everyone for sharing your story. We're all helping each other in a BIG way!

Take care, all - Toni

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Hi and Happy New Year! I' ve had celiac disease for over 12 years and it's been a long hard haul. Don't want to bore you with all the details but I was at first dx'd with IBS and lupus before they found the celiac disease. By that time I was SO sick I thought I was going to die! When I first went ignorantly semi-gluten-free the change was drastic! The lupus symptoms cleared up as did the IBS, of course. It took several years before I came close to a totally gluten-free diet and added vitamins to the regime. That made another big improvement. But I still had nagging problems for years, and doctors were no help, so from the good advice of people on this site I began a food diary and discovered that starchy products (white rice, rice noodles, etc.) also were giving me problems. Once I cut those out of my diet I finally felt healthy again and am happy to report that I am now doing great! New celiac disease'ers are so lucky to have this site and the wealth of info it offers!

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I was diagnosed 3 months ago. I do feel a little bit better but still not good. I am 40 years old and have suffered with assorted symptoms most of my life. I am very depressed by the weight gain, although I am greatful to be getting my energy back. I am still searching for good gluten-free food.

My children have had a blood test and they were both negative. I am however still concerned, my 9 year old son has many similar symptoms as I did but the pediatrition sees no need for any further tests. I am the youngest of a large family, only one sibling was willing to be test, he tested negative. I suspect my sister also has Celiac but she does not want to deal with it.

This has been a challange but I look forward to feeling better. I am greatful I found you all. My doctor gave me very little information. He told me not to go out to eat ever again, don't let anyone else cook you food,he told me to eat meat, fruit, vegetables and don't take Communion at church. I went to a dietition who knew nothing about the disease. She gave me a flier for a health food store and said good luck.

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:D hi there i have had celiacs for about 14 months now or should i say i found out i had it then heheheheh my youngest daughter has just had the tests and although they said the gut was ok she has a wheat intolerance so i have started her on my diet and she like it she misses the cakes and things but she did eat too much of them anyway she is 15 years old i am getting there still have days when i feel yuk but i bet we all do love this site

jacque

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Hi everyone,

I have looked at this message board for months and have finally need to have my say. I live in Australia and was diagnosed with Celiac disease in November 2002. Prior to diagnosis I was dismissed by the medical profession and it was a chance meeting with a surgeon who persuaded me to undergo a biopsy. Surprise, surprise it showed I have celiac disease. I still struggle to cope with the disease as I have found so many are quite ignorant as to what it is and I think I will scream if one more person states "A little bit won't hurt you"! :angry:

My biggest issue is the associated weight gain with the gluten free diet. I am 1.59m tall and weigh 80 kgs. I have put on 20 kgs since going on the diet. :( I find that none of the weight loss plans can assist as they all involve food that is inedible. I find diets difficult and exercise is difficult also. I need help. Does anyone have any good advice? Has anyone else experienced horrendous weight gain since going on the diet? I am 35 years of age and weight more than when I was at full term pregnancies with my children!!

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Hi Lily80,

Do I ever hear you and understand! I even had several doctors over the years tell me that a little bit of gluten wouldn't hurt! As for the weight gain, I did the same exact thing - getting heavier than I ever was while pregnant! Bummer!:( But I just have to tell you that I just recently lost over 20 pounds by finally trying a low-carb high-protein diet. I don't know if the Atkins diet is popular in Austrailia but please try to research it. It's the only diet I've been able to stay on and lose weight on and I've been trying for about 10 years. It's almost naturally gluten-free beacuse you eat all the eggs, cheese, meat and low-carb vegetables you want. The books by Dr. Atkins have delicious recipes included. I feel great now and want other people who need to lose weight to be able to experience this. Good luck! :)

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Hi, Lily!

Have you looked at the book _Eat Right 4 Your Type_ (and its sequel, _Live Right 4 Your Type_)? It is based on the premise that different people need different foods/diets and that your blood type (or, more accurately, your "tissue type," since the markers are present on every cell in your body) plays a large role in determining which foods help or hinder proper body functioning. It may sound hokey at first, but it does make sense when you read the background. I picked up the book so I could laugh at it and ended up on the (Type A) diet! ALL of the blood-type diets can be made gluten-free easily, and they all emphasize high-quality unprocessed or minimally processed foods, which are better for the body, anyway. Optimal exercise is also addressed. I hope this helps!

--Sarah

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Sarah, your comments about your mom thinking your symptoms were all in your head hit home with me, and perhaps with others. Celiac symptoms present themselves in so many ways, that it sometimes takes years and years to realize what is causing our distress.

Family members watching us go through so much pain are often stymied as to know what to think. I personally tried every route to health that I could think of or would come across during the years when I didn't realize what was happening. I think it is only natural that my family would watch in amazement, never knowing what I would be trying next.

Now that I know that my symptoms are caused from eating wheat and grains, along with allergies to milk, dairy, egg whites and yeast, and now that my new grandson has been diagnosed with gluten sensitivity and allergies to milk and dairy, it makes more sense when experts say to, "Have everyone in your family tested--this is a genetic disease!"

We probably all have family members who will eventually have to modify their diets to remain gluten free, in order to maintain good health. We'll be able to help them on their paths to recovery then. It makes all our suffering worthwhile when we can help someone we love. Welda

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I find the information in this message board very helpful as a newly diagnosed.

k.

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hello all- I feel like such a celiac baby, dianosed last week.

I have felt "icky" for over a decade now, given the usual answers of "maybe you have a parasite, here's a triple dose of Flagil" and "its just IBS." Not too helpful either one. So many times I was so sad, and frustrated and angry, even though I could see that my life was wonderful. I got diagnosed after being violently ill for three weeks, and spending some time in the hospital. Eventually my Incredible, Powerful, Mama-Bear mother said, that she wasn't taking me home until they found out what was wrong with me. One quick endoscopy later, we had an answer.

I have been gluten free for 6 days now, and I feel wonderful. My doctor says that it is the steroids I am on to supress my immune response. I know that it is deeper than that. I can feel that I am not "under attack" by a mystery source. I am still weak, but stable, and happy, and recovering.

All in all, I feel wonderful, and a large part of that is due to the thoughtful postings on this site. I love to hear all of your experiences, both familiar and new to me. I am so grateful to have a place to ask real people (those who actually live with this every day) questions. And there are many. thank you so much.

Libby

ps- I am only 23, and so grateful to have been dignosed young.

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
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