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celiac3270

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Hello there...I haven't posted in awhile....but I visit to read on how everyone is. My name is Kelly, I live in Arvada Colorado, I'm 35 years old, married for 14 years, and have 2 beautiful daughters 12years and 7years. Also the proud owner of 2 mini schnauzers 6yrs and 1yr which I adopted from the pound.

I was diagnosed on April 26, 2004. I started on my diagnosis rollercoaster because my younger sister had DH and was diagnosed via skin biopsy. My mother then had her blood tested after learning it can be genetic, and alot of my sister's symptoms were similar to my grandmothers (mom's mom). Her TTIGA was 181 on a low carb diet (diabetes). My sister and mother bugged and harrassed me to have my blood tested....So I finally I went and had my blood tested....and surprise I had a count greater than 200 (apparently it was off the charts)...anyway I went through the endoscopy and my GI doc was shocked at the damage, and concluded I Celiacs. My girls have both been tested (oldest by blood-negative, youngest by endoscopy-inconslusive & blood-negative). My youngest has been diagnosed with ADD and Bipolar Disorder for over a year now and takes 2 different meds for it. I still think it's Celiacs, but the peds GI doc says no...so I am going to take her to another doctor now in August.

I am doing okay gluten-free. My kids and husband still eat gluten and that makes it hard, but I try to stay away from gluten. I have had a few accidents, and I know when I have had them.....but I have to admit now I finally after being gluten-free I know what it is like to feel "GOOD"....so when the accidents happen I am miserable....but I know the "GOOD" day will be back soon, and then I just start over from the basics and move on. I would rather have a handful of "GOOD" days than a lifetime of bad. I work for pediatricians, and one asked, "Are you glad you know?" I can't imagine not knowing....I have lost 18 pounds and 2 sizes.....I have energy to do things, and my mental clarity is awesome! So I simply told her, "I would rather not have this, but I needed to know why I had been so sick for years..."

So now that I have ranted my whole life story....I think this site is great too....

Kelly

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Hi Molly. That is an INCEDIBLE story. So are you all well now? I certainly hope so. Glad you found all this while you were young. Have you been to Stanford Theater lately? I assume you meant Palo Alto but I could be wrong. If so where is Stanford? We went last night and saw a couple of real old movies. It was fun.

I meant to add in my post that I am married 32 years with 3 kids ages 24, 27, 30. The middle one has Autism and goes to a day program (he is very high functioning). My oldest has had her challanges but is doing well. Except that I think she needs to consider this diet. I also have many interests in life that I hope to be able to pursue more fully when I'm completely well. Walking, hiking, dancing (square, folk etc), fruit and veggetable canning (as well as pressure canning), ham radio, quilting (simple patwork), gardening, church activities and ministries, music (tinker with the guitar, accordian and piano and sing in the church choir), reading, history and many other things.

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That's awesome about your acting in the childrens theater. Good for you. So are you going to college at a young age or does your family live on campus?

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My name is Emily and I'm a 19 year old from Topeka, Kansas. I've always had different health issues, but it was during my Junior year when things got really bad. I started throwing up in the mornings and just being really nausous all the time. I went from 130 to barely 100 lbs in about a month. My doctor as well as my Mom thought i was bulemic, which I didn't find out about until after I was diagnosed and started putting on weight. My 28 year old sister was actually the first one diagnosed in our family, while she was teaching in Austria. Her doctors there then suggested the rest of her family be tested, which we did. I was diagnosed August 24th, 2002 at the age of 17 *a week into my senior year of high school* as was my Mom and 4 of my 5 siblings.

I am now a sophomore at Brigham Young University-Idaho majoring in Early Childhood/Special Education. I have already met two others up here at school who also have Celiac, and so I hope to, in the near future, start up a Support Group here on campus to raise awareness of celiac disease and offer a way for students here to come into contact with others like them.

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Hi everyone,

I'm new to this computer thing and have never posted on a message board before, so I hope I do this right. My name is Sheryl and I was diagnosed with celiac disease a month and a half ago. I have had bouts of constapation and then diarrhea for several years but was afraid to say anything to my doctor about it because I was afraid of colon cancer. I didn't matter what I ate( as you all know). I would take Imodium like water and it never helped. Then in February, my husband was diagnosed with prostrate cancer. I was a mess, I was so worried and stressed. My diarrhea was the worst it had ever been loosing a lot of weight. My husband had his surgery on June 2. Everything turned out fine they caught it in the early stages and he is cancer free thank the Lord. Anyway, I lost 12lbs in 1 week while he was in the hospital. He came home on the 5th of June. The next day, I started vomiting which I had never done. He made me go and see the Dr the next day, by now I was very dehidrated. My protien, calcium and potassium levels were way down, I was anemiac. He wanted to put me in the hospital that day, but I wouldn't go. The next day he called, I wasn't any better so he said I didn't have a choice, I had to go to the hospital. That worried me even more because my husband had to be left by himself and only 3 days home from the hospital. Anyway, He had me see a gastro Dr. as soon as I told him the sympoms he was pretty sure right away what was wrong with me. He did a blood test and sent it to Mayo Clinic. I came back posivine for celiac disease. I have been gluten-free since, at least I hope I am. Feel sooooo much better now. I felt so alone and didn't know who to talk to it seemed like Everything had glutten in it. Then my daughter found this website for me and I changed my life. It is so good to hear about everyone else. I have learned so much from all of you and I don't feel so alone anymore. I just wanted to thank all of you and tell you is is so good to be able to talk to other people like myself. By the way, I am 55(56 next month) married for 36 years to a wonderful supportive man, and have a daughter and 2 grandsons. I live in NW Indiana and am a manager for the Dairy Queen. Well I guess that's all for now thanks for listening to me ramble on. Bye for now. Sheryl

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Welcome Sheryll to the board. You and your husband have had a pretty rough summer, but at least you are taking care of your ailments. It is great that you are already feeling better, but it may take more time to be totally gluten free. You mention that you are a manager at a Dairy Queen. A lot of ice cream has an ingredient called "diglycerides" which could contain gluten. You should check with Dairy Queen to determine if it has gluten. Otherwise don't eat the ice cream which must be very tempting. As for your husband, tell him that I also had prostate cancer and had the prostate removed 10 years ago. Tell him I am fine and everything is working. Best, Joe

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Hi Sheryl. I too want to welcome you to the group. This is a wonderful site with lots of info. I'm still learning myself. Glad your husband is ok and that you finally found your answer.

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Thank you for my welcome! Joe, just to let you know, Daity Queen vanilla and chocolate ice cream is all gluten free. Since I have learned to read ALL labels, I have made a list of toppings that are gluten free theu are as follows,

Pinapple

Cocoa Fudge ( contains peanut oil for those with peanut allergys)

Butterscotch

Carmel

Chocolate, Cherry, and Butterscotch Cone Dip

Vanilla Syrup

M&M Blizzards

"Recees Peanut Butter Cup" Blizzards

"Snickers" Blizzards (without the Chocolate Syrup)

These items have Modified Food Starch and I don't know the source of the starch so I wouldn't eat them,

Chocolate Topping

Hot Fudge

Blueberry Topping

Cherry Topping

Raspberry Topping

Cream de Mint

Marshmallow

Hope this helps any of the DQ fans out there.

Sincerely, Sheryl

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Sorry, it's me again I forgot to add

Fat free Fudge Bars

Fat Free Vanilla Orange Bars

Fat Free Raspberry Bars

Star Kiss ( Cherry, Grape, and Lime only also these are lactose free if anyone is lactose intolerant.

Thanks again, Sheryl

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Guest sushi

Hi all,

I am 46 years old and married with two children. I am a home ec teacher. I can't eat anything I have the students make. I can't even test the recipes to see of they're good. Funny, huh.

I have had two blood tests one in Jan 2003, and a second one in Feb 2004. Both came back positive. I have not had an endoscopy. My Natural Path did the first blood test which my internist laughed at until she did the second one. I was very puzzled as to why the second test came back so strongly positive, so I took a closer look at my diet and am looking at all kinds of other things like lotion, shampoo, hair color, toasters, etc.

I think I may have had DH in high school because I had a rash on my arms. When I was in my 20s I was diagnosed with IBS due to abdominal pains and getting the runs when under stress. The worst was when I turned 40. I had episodes of diarrhea, palpitations, hives, acid reflux and muscle cramps in arms and legs all at once. They didn't last very long, but it was very bad, I thought I was dying. My internist checked almost every organ in my body, my heart, lungs, nerves, etc, but everything came back normal. I would also get sick quite often, which meant that I needed to take some sort of medication. I finally started getting allergic reactions to all the medications she gave me. I was taking Benedryl for almost everything.

Finallly, in 2002, she said that she couldn't help me any longer, because she didn't know what was wrong. All of my tests were coming back normal. That's when I started seeing a natural path, who tested me for allergies and gluten intolerance. This is when I discovered that I am allergic to sooo many things, probably due to celiac disease. I have not had a biopsy. My internist said I didn't need one, which is good, because I would not go back on gluten to do it.

I have been told by a GI that I do not have Celiac because I am not Caucasian. I am half Okinawan and half Japanese. I live in Hawaii and I do not have the classic symptoms of celiac disease. My reactions to gluten are like an allergic reaction...I become itchy, have difficulty breathing, etc.

Anyway, that is my story, sorry to have been so long winded, but I have gone sooo long before being diagnosed. Mahalo,

Susette

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This is not an introduction but I just wanted to comment on the DQ thing. One of my co-worker's parents owns a DQ and I asked her if there is a chance of cone pieces getting in the dipped cone chocolate topping and she said "Yes, definitely, and they just add to it when it gets low." (Meaning, they don't clean it out and put fresh chocolate in. They just add chocolate to what's already in there, increasing the chances even more)

So, the chances of getting some cone in your chocolate are there. Broke my heart, because dipped cones are about my favorite thing!

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Welcome Susette :D I am glad that not all doctors have stereotyped celiac disease to one race. It is out there in all races. I guess I am what you'd call caucasian but I am really a heinz 57 mut. :D I am German, Englsih, Black Dutch, Black Irish, Apache, Creek, And Comanche Indian. I'd like to see a spot for that on some census form. :P But really, I am one race, Adams (Adam and Eve). I came from two people(the first two) and so did everyone else. So really, everyone in my family (all people) have a chance of celiac disease. I hope your celiac disease journey goes well.

Best Wishes, Rian

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It's wonderful to read up on everyone here!!

Susette, welcome! Your post in particular caught my eye regarding "stereotyping" celiacs. What delayed the diagnosis for me I think is the fact that I don't "fit the bill" for a celiac either. Although I am of Irish descent, one of the characteristics of celiac disease is short stature, well, I'm 5'9". Not exactly short. Also, celiac is supposed to affect your fertility, well, I have four children, including twins!!!

So it just goes to show you that this disease does not discrimate or play favourites, it affects those of all age, race, sex, or religion. The medical community at large must be more on the lookout for celiac, instead of just thinking it is "starving children with protruding stomachs..."

Again, welcome to the forum! I have found invaluable info here and a great bunch of people!

Karen

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I'm a 19 year old college student in Pittsburgh, PA. I play 2 sports and am pretty active in the off seasons. At school I'm studying Biology with the hopes of going to med school in a few years. I'm involved with my sorority and a pre-med club. I was dx in the middle of the freshman year in college by blood work, scopes, and biopsies. Being away from home with no way to cook or buy gluten-free food was really tough. My coach helped me out so I made it through the end of swim season. Now things are mostly under control, but who knows what's going to happen when I have to cook between classes :lol: Take care!

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Guest sushi

Thank you for making me feel welcome here. It is so interesting reading everyone's stories and I have learned so much from them. Mahalo,

Susette

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Hi everyone, I am 26 living in NYC with my wonderfully supportive husband. I was diagnosed w/celiac disease a little over a year ago thru blood tests. I have had symptoms for as long as I could remember and never understood why I was always sick. I had horrible migraines, bone pain in my legs, tingling in my toes, was always exhausted and taking naps, and was always getting sick. After years of going to Drs, having cat scans, etc... my mother-in-law suggested I stop eating wheat for a while to see if it had any effect. I felt better immediately and started doing a little of my own research when I stumbled upon Celiac Disease on the internet. I had to beg my primary to test me and sure enough, the test results came back positive. Since then, I have switched Drs and now see a celiac specialist. The best part of my diagnosis is that my mother-in-law is a Pediactric Hematologist- which means that she treats children with blood diseases. Before I was dianosed with Celiac, she wasn't aware of the disease and has several unsolved cases of children with severe anemia. Ever since my diagnosis, she has added a celiac disease test to these kid's test and has diagnosed at least 4 children!

When I am not avoiding gluten, I spend most of my time working (in fashion industry), working out (yoga, ballet, running & weight training), reading, listening to classic rock and hanging in Central Park with my husband. Oh yeah, and I spend a lot of time on this website hearing from all of you- it makes me feel normal and is a great source of ideas and support. So thanks everyone!

Erica

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Hi, My name is Krista I am 48 and I have the Celiac Difference. I was shunted from doctor to doctor from childhood. I was repeatedly tested for diabetes as a child and suffered my entire life from severe episodic depression, ataxia and stomach problems. After my daughter was born I became very ill and they decided I was manic depressive even though I didn't fit the criteria very well they felt they needed a label. Then the joint pain started, and the parathesias and muscle pain. Doctors repeatedly ignored the fact that I lived off imodium and just looked at me when I told them I was up every night with gut wrenching pain and diarrhea. When I went to a GI doctor they did a colonoscopy and found extensive diverticulosis and told me to eat more fiber. I did and of course got worse. Then they decided it was 'all in my head' and started trying to get me to take antidepressents. These of course made me worse. I was able with imodium to do shopping and leave the house for short times but as time progressed my joint and muscle pain became so bad I could only drive short distances and even housework became harder and harder to do. Meanwhile my son was diagnosed with failure to thrive and aspergers syndrome(a form of autism) and both he and my daughter were told they had acid reflux and depression by the time they were 12. My daughter was so sick that for over a year she thought I was trying to poison her and would not eat unless she was beside me when I cooked. They put her on antideppressants and she spiraled down to a point where I recieved a call from school one day that she was suicidal. After picking her up and taking her to the hospital she confessed that she had been cutting but that did not help her pain any longer and she didn't want to live. I had not been diagnosed yet and the pain of not being able to help her was excrusiating. Meanwhile my son's growth was stunted, he is now 21 and 5' tall and he decided to join the Army August 20th 2001. He made it into the 82nd airbournes parachute infantry before celiac over took him to the extent that his phone calls home were terrifying in their psycotic content. Thank God his small stature blew out his knees and sent him home. I was diagnosed November of 2002, both my children had bloodwork done and my daughter was biopsied(they've got to get that last wad of cash for the obvious!) Now to the good part of the story- my daughter has gone on to be a presidents list quality student and has been accepted into the behavioral neuroscience program at Northeastern U with a $23,000 scholarship. She is particularly interested in the extreme psychological reactions that celiacs have. She has had no more depressive episodes and her GERD is gone. My son is doing a dual degree at Rutgers to prepare for a future in business law, he is making freinds and the autistic tendencies seem to be gone. He no longer suffers from depression, joint pain or GERD. As for myself I wish I could give them back a childhood not filled with activities next to bathrooms, movies we had to walk out on, trips to the store with the cart left in the aisle. A childhood without a mom so tired and in so much pain that she would take 3 days to shovel out after a snow. A childhood without a mother who would listen to her children cry themselves to sleep and be able to do nothing to ease their pain other than to rub their backs and cry with them. Undiagnosed celiac disease is hell. But the celiac difference is just that, once it is found. And once we learn to live with it, and we can live very well with it, it is like being reborn.

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Wow Krista!

When I read your story, it broke my heart! What a nightmare your family has been through! I also am on two different anti-depressants and have been treated for depression for so long. I truly believe it is due to the celiac disease also.

I am currently starting from scratch and working my way up again because of continued permanent diarrhea. I can't remember the last "YEAR" I have had a solid bm. But I have found a few sources of gluten that slipped through and also some cross-contamination issues, so now I am just praying that eventually the symptoms will finally, after many years, go away.....

My prayers are with you and your family and what an amazingly happy ending, such successful children you have! And it sounds like you daughter is really going to be doing some ground-breaking research into celiac disease that will probably help millions of people! That should make you very proud!!!

Karen

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I know I'm way behind jumping on the introduction train, but here goes...

My name is Tiffany (duh, I know, but I'm not good at these introduction-thingies), and I'm a 25 year old system engineer in Orange County, CA. I was born and raised in California, and while I understand that other places are great too, I simply can't leave the West Coast permanently, 'cause I love the place too much! I enjoy cooking (and am a self-described food snob, as I'm sure I've mentioned far too often :-) ), painting, running, swimming, and not working oodles of hours all the time. :-) I'm toying with going back to grad school (MS in Computer Scient? MBA? MS in Systems Engineering? Follow up on my physics degree? Even though about getting a degree in physical therapy...), but haven't made up my mind yet. I'm married (to a non-gluten-intolerant who loves bread! :-) ) and we'll hit three years this September - no kids planned for a few years. We enjoy traveling, but don't have the vacation time to do it often enough. (Nor money since we're saving for a house.)

I discovered I was gluten intolerant last year as a suggestion by someone else. I have vulvar vestibulitis - a gynecological thing - and one of the members on a similar message board _insisted_ that it MUST be related to celiac and everyone with VVS should try a gluten-free diet. I was very skeptical - she was just too pushy about it for my tastes and it kinda threw me into "and here we have a sleazy used car salesman, don't listen to anything he says" mode. But I looked up the symptoms, discovered that it wasn't a bad match and - against normal advice - tried the gluten-free diet right away. I saw some improvement in my (slight) GI symptoms, and asked the doctor to run blood tests after 2 weeks being gluten-free. (I know, I know! I've learned much since then. :-) ) The tests came back inconclusive - well, she labeled a bunch of negatives (anti-gliandin IgG, IgA, tTG, and EMA) and one low positive (anti-reticulin IgG) as an inconclusive, and suggested going back on the diet, then doing a gluten challenge. So after another month of being gluten-free, I ate a cup of yogurt (which never gave me gluten-like symptoms) with two tablespoons of vital wheat gluten mixed in. That was possibly one of the foulest things I've choked down (nearly literally) in a while. But I felt like crap the rest of the night - and for a few days afterwards - so I feel that's a decent answer. (On the other hand, I'm having questions about dairy, so I may do an elimination diet (in the future, I'm traveling for work too much to do it right now), and may retest gluten while doing it.) I've been gluten free (fairly successfully, but with a handful of accidnets) since then.

I am in fairly decent health, or at least I think so, and was never hit very hard by gluten intolerance symptoms. I've had asthma all my life - though always mild, and had fairly bad allergies, but going off the birth control pill helped that even more than going off gluten. I've got miscellaneous other issues from bad knees (chondromalacia patella) to that mentioned above to generally fairly sensitive pain receptors in my muscles and tendons (seems like I've got the slightest touch of tendonitis just about everywhere). I also have a tendency to dysthymia, but my screwy childhood may have something to do with that. ;-) But none of this is severe enough to regularly stop me from living my life (well... that last one can be a pain...), and after reading many of the stories here, I feel very fortunate that I haven't been bed-ridden, house-bound, or (most of the time) terribly limited in my work (though tendonitis, in your wrist, when you work in front of a computer all day long, scares the crap out of you in worry for your job security! ;-) ), and very fortunate that I have a doctor who believes in me and works with me so well.

Whew... good thing I'm also a chatterbox, or that would have been harder! ;-)

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Hi, my name is Theresa. I am 55 years of age. I am married with two adult children(Son and Daughter). I have four Grandbabes. Ages 13, 7, 6 and 3. I have been in home daycare for the pass 31 years, and own an alterations business. I was diagnoised in January of 2004, after 14 long and miserable years of illness. The Doctor has said he thought I was probably born with it, knowing my medical history and the looks of my Villa. I started very early with convulsions at 18 months. Then followed by anemia for 8 years. Then I seemed to go into remission until puberty, at which time I had a bout with the big D for 3 months and lost 60 pounds. Then it eased up except for always having bloating, vomiting and constipation.(Could never wear jeans, as they put too much pressure on the tummy). When I married, I had a hard time conceiving, along with 4 miscarriages. I have had cysts and tumors removed over the years. I have 2 forms of Arthritis. I have had heat stokes, skin cancer (right now I have a tumor on my Thyroid), sinistitus, hair loss, constant pain, brain fog , until I couldn't tell you my name.

July of last year I contacted Giartia, and even after treatment the big D did not reside. I was loosing 1 to 1/2 pounds per day. I had no strength left. By end of December I could barely walk. At that time the Doctor decided to preform a biopsy, thinking I was full of cancer of the liver, as my liver emzmes had been unusually high for the past 3 years. What a blessing this was. I am a new person now, and have my life back. I grieve for the fact I lost my Mother and baby Sister to cancer, which could possibly been prevented if we would have known. My Daughter and my Granddaughter have both tested positive so far. I only hope they will have an easier go of it than I did. My oldest Grandson gave me a beautiful compliment the other day. He said "It is sure good to have the old Grandma back, who likes to play with us, and isn't a grouch and sick all the time." I almost cried. Thank you so much for sharing your stories with us. Please make sure you write your story in a journal to remember. As we get well, we forget too easily how sick we actually were. And the journal will be valuable information to generations to come. T-Bell48

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Hi Theresa. Welcome to the group (along with anyone else I failed to welcome). That is an incredible story. I'm SO GLAD you finally found answers. I too am 55 and just found out a few months ago.

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Hi Theresa,

Welcome, I'm so glad to hear you are feeling better! I too, have been sick

for a long time with many unusual symptoms. I want to thank you for suggesting

the idea of a journal especially for my children, who are in their thirties and are

very much in denial that they might have the symptoms. My son gets bad

migraines, frequent mouth ulcers and is loosing his hair. So far my daughter

is relatively free of symptoms, although she had to have a hysterectomy and

sometimes gets bad headaches. I thoght maybe I could drop a line to their

doctor to let there be a notation on their medical records. She used to be my

doctor so I think she might do this, although I can't have any access to their

records because they are over 18. Anyway welcome to this board...

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Hey there! I am a Wife and Mom (two unbelievably great kids!) of two newly dx celiac. My husband, May 12th, 2004 and 19 year old daughter, July 12, 2004. We live in sunny California and farm peaches and plums and DH teaches Math.

Now looking back I see the celiac in my husband, he has had the D.H. skin outbreaks forever. When he lost 20 pounds and I forced him to the Doctor he was severely anemic while telling me "I'm fine". The Doc disagreed with him and he was in for an colonoscopy and endoscopy within 3 days. So we feel fortunate. Our Doc has said, you are my first Celiac patient, at least he's honest! We did the IgA blood test on the kids a.s.a.p.

Daughter is asthmatic. Already has been milk free, acid free(citrus, tomato etc) carbonation free and caffeine and chocolate free.

I have felt overwhelmed at times, especially at the grocery store and when I hear the two of them talking about the worse thing about Celiac is being hungry all the time! They both have wonderful attitudes and are easy to please, I desire to be the best Wife and Mom I can be. Our oldest will only eat gluten-free in front of them, I told you, great kids! I feel fortunate to have found support online. Thanks everyone! God Bless You All!

Peggy Z

Karen: I agree, invaluable bunch of people here!

celiac3270: Good idea! We have close friends in NYC, I wish I were there!

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Thank you for all the replies.......I've been checking back frequently, but did more reading than posting in this topic :)

Everyone here seems to have an interesting story.

The journal is a good idea........but it might be too painful to write about how bad and sick I feel.....I don't know if I want to dwell on it like that...good suggestion, though--I just don't know if it's for me.

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