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Heidi - posted on 01/30/2009 ( 6 moms have responded )

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Hi Ladies...just curious about your gluten-free story. I have been living mine for 5 years and my 5 year old son was just diagnosed in November. What are the ages of your children? Are they in school? If so, how do you work out lunch plans, class parties, etc.?

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Lori - posted on 10/30/2011

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I am brand new at this, please be kind:) My 11 year old daughter has tested 54 on the antigliadin IgG (native). The doctor said to start her on a gluten free diet. My question is, did they check for celiac disease since it was positive for gluten sensitivity? Or is that my next step? I am so thankful I finally have a reason my daughter complains of stomach aches and headaches all the time! It will be hard to be gluten free in our household, but I am ready for her to feel better.

Barbara - posted on 03/25/2009

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Hi, my name is Barb and my daughter who is 6 was diagnosed with Celiace disaease at 18 months. She was having horrible bum rashes and pooped alot we took her into the dr and at first thought it was a lactose intolerance. We stopped giving her dairy but didn't work. Our dr referred us to another dr who ran blood tests and and her leves came way above 200. She immediately was sent for a biopsy which confirmed she had Celiace Diesease. She has been gluten free ever since. I also have a son and he does not have it nor does he carry the genes or anitbodies so he will probably never get. My husband and I have been tested we both are negative and no one else in our family has it. There are times it is hard and I feel bad for her when she is going to birthday parties now and we send food for her. But she is pretty good about it, she doesn't know any different. She has her bread, cereal and pasta and we have ours since it is quite a bit more costly. In the beginning we found it really hard but now I don't think about it too much. We still go to eat out and have found many restaurants to be very good. There are times my daughter says she wishes she never had celiac and could be like other kids and eat whatever she wants and it breaks my heart. But overall she is knows what she can and can't eat as we taught her from the beginning. Our friends and family are wonderful at accomodating and always having stuff for her to eat. She is a tiny compared to most of her friends and falls below the 50th percentile but our dr's are very happy with growth and weight gain which makes us feel good.

Heidi - posted on 02/04/2009

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The one thing I have definitely learned is that you cant push/convince anyone to try the GF diet. Let's face it, we are a country that lives for food and convenience. We have come so far from even when my parents were kids and there weren't fast food restaurants, pizza delivery, carry out menus, etc. Not to mention they didnt have the money to "afford" those conveniences (my Gram is 94) Potatoes were a staple due to their diversity and cheap price...meat was a luxury (kind of like the Sunday-after-church-roastbeef-dinner). Life was slower, no tv, video games, cell phones, atm cards...jeez, you mean you had to go in the bank to get money???) We have become a society that values speed and convenience. We dont know how to wait for something, we want it now. The GF lifestyle is anything but easy and fast!



I love to cook but even I get frustrated at the time consumption and planning that goes into EVERYTHING!!! I went the route of ordering everything GF pre-made for awhile but it is expensive, and often resembles a dog bone. The good thing though, is if it has been made, I have probably tried it and can tell you whether it is worth the money. Not much is. We really have gone the route of shopping the perimeter of the grocery store, which is what everyone should do anyway...it's healthier and cheaper. Produce, fresh meats, dairy, etc. and **most** of those items are GF. I do buy some things at whole foods or our local co-op, like GF cereal, GF waffles and a sandwich bread (it is strangely very good) and pasta. The great thing is that it is getting easier to find things just in the regular grocery aisles, like Rice Chex, Oscar Mayer bolonga, Lay's chips, etc. I am working on a book for a friend of mine whose daughter was just diagnosed with a gluten-intolerance. She is a preschool teacher (and lets face it, teachers are WAY underpaid and undervalued!! GF food, especially the convenience items are hideously expensive. $5 - $7 loves of bread???) on just common grocery store items that are GF...keeping in mind to always read the ingredient list for changes.



My husband came around on his own, once Sam was diagnosed, he wanted to forgo gluten so he could still give Sam kisses and after a week, once he saw how great he felt...has decided to go all the way. Feeling good trumped McDonald's :-) I love it!!



Heidi K.

Heidi - posted on 02/02/2009

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It sounds like you've been through a lot too!! It is amazing how this can run rampant in famalies and no one ever knows until someone puts it all together. As for you ending up with the gastic symptoms..the same thing happened to a friend of mine with DH. She went years before finally getting the DH diagnosis (about a year before Cody's), but once she went GF, the sores and rashes went away completely. She thought she was in "remission" and ate a canoli and all hell broke loose...the DH came back worse than before and she had gastic problems as well, just like you describe. Now she believe me that it doesn't go into remission. lol



I completely forgot to include the gastro symptoms Cody had too! lol Maybe its because I have pushed the memories of those wretched, mucousy, all-too-frequent diaper changes to the back of my mind. lol He also had issues with diaper rashes that I always thought were just a result of his nasty poops. I had only heard of celiac disease from my friend, but had no idea that there was a gastric "version" too so it never even crossed my mind.



I've gone back and forth about having the genetic testing done on the rest of the family, but honestly it has mainly been the cost that has kept me from doing it. My husband is adopted so we have no idea about his family history and as far as we know there is none on my side. My dad and both of my sisters had celiac panels run and were all negative. The only thing I will always wonder is about my mom. Growing up I remember her not eating many foods because they didn't agree with her, but it was mainly things that are generally hard to digest (i.e. roughage). She lost a battle with breast cancer at 55 and was post-menopausal (hystyerctomy at 39). Some day I will research if there could be a link there. However, I am convinved the CD gene has come from my husband. He often has a bad tummy, but he doesn't eat well and he's been tested twice...23 and 5. I KNOW he would feel better if he went GF, but he would never commit to that kind of a change. I don't push it because I'm not convinced he has CD and like I said he wouldn't go GF anyway. Men!! lol I just rationalize it because most of our meals are GF anyway so he is consuming less gluten than most people.



What has amazed me is how many people say "Me too!!" when I happen to mention that my son has CD. I'm sure its much more common than the medical community has reported. Hopefully by bringing awareness, people won't have to suffer for years and doctors will consider it a possibility sooner. Whenever I talk to someone who is trying to figre out what has been ailing them, I encourage them to ask for a celiac panel the next time they have blood work done.



I hope to chat some more with you and BTW...your boys are adorable!!!



The Other Heidi

Heidi - posted on 02/02/2009

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Hey Heidi (GREAT name btw!!)



208???!! WOW...I thought Sam's 36 was high.....poor baby, I cant imagine the pain he was in, and to not be able to communicate that to you, your heart must have just been breaking! I am proud of you for following your "mom-stinct"....if we dont fight and push our medical professionals on behalf of our kiddos, who else will?



I went through quite an ordeal with my youngest son, Luke starting at 11 months when he developed a bad case of "diaper rash"....which ended up being a hideous case of excema in his diaper area, front and back (my husband came close to passing out a few times at the sheer rawness of Luke's front side). He was having 10+ blow-out diarrhea's a day, and the wipes just burned him, so each time was a hose down and I put on every diaper cream...let him run around the house naked (tile floors and LOTS of Lysol wipes) but nothing worked. I moved on past my pediatrician to a pediatric GI to check into celiac or Dermatitis Herpetiformis (DH)...since I have both diseases (yep, I hit the gluten sensitive lottery!). The GI did an initial test for celiac and it was negative, since he had had very little exposure to gluten at that time...so we challenged him for 6 weeks and re-tested him, this time (since the first blood test was quite traumatizing) I also insisted on the gene test. The Dr. didnt want to do it, saying that even if he carried the gene, he only had a 20% test of developing celiac and that is was a very expensive test. I have never been so P.O.'d at a Dr.!!! I told him that with all due respect, since he wasnt the one living with an inconsolable baby, or changing his diapers, that he was in no position to tell me anything...especially since I have BOTH celiac and DH, and if I want to pay for the gene test, then that is my business, not his...unless of course he wanted to pick up the tab. He gave in and ran the gene test too. My whole reason for the gene test was that I knew I would always wonder with every diarrhea, weight loss, skin rash...."does he have it now?" I was also having the gene test run on Sam. He had the panel done at 3, it came back negative. So I decided that I was going to run that blood test every 2 years. Over time, I realized that I didnt want to put my boys through that if they didnt even carry the gene (I am a bit hypochondriacal at times...I now know I got DH when I was 15 and was diagnosed with celiac at 30 (I was a symptomatic)...I had already developed Graves disease too for having gone undiagnosed for so long....and my favorite uncle died last year from Non-Hodgkins Lymphoma, which I strongly believe was due to undiagnosed celiac (this particular NHL strain has close ties to celiac) and my dad (my uncle's brother) was just tested and while he has the antibodies, he doesnt currently have celiac...just another family tie.



What I think people fail to think about other than the obvious short term gastro issues, is that celiac can lead to death. It is a very serious disease. Even I had a hard time coming to terms with the seriousness of it. I was in denial for the sheer fact I didnt have any gastro issues and I didnt know of anyone else in my family with the disease...it is genetic!! I went on and off the diet for the first year, then when I decided to get pregnant again, I went ahead and did the biopsy...of course it was positive. I was great during my pregnancy but went off after giving birth, so I could just eat what friends brought over...shoot, the hospital I gave birth in wouldnt even make me a gluten-free meal!



This last time was quite different though....I got every known side affect of being glutened, gasto, exhaustion, lethargy, nausea....you name it. My DH also blew up, the rash that was once contained to a few bumps on my knees (I had thought it was a grass allergy) covered 50% of my body and the pain and itching was almost too much to bear. I was bruising myself from scratching so much. My denial was over....I felt like God was screaming at me to "get over it...you cant have gluten you nincompoop!!! How much more proof do you need?"



I had such a hard time for a few reasons...one, being diagnosed later in life, it is much more than a "simple" dietary change, it is a cultural change....and one that not everyone can or will embrace with/for you. That led me on a road of depression and isolation (I will write another post on that some other time).



We Luke's Dr. called with the results of his blood work, negative for celiac and negative for either gene...I was so relieved. I assumed this disease would die with me (remember Sam's negative blood work from 2 years earlier? I assumed he would get the same clean bill of health....the next morning the ped. called with the results that he tested positive for the gene, positive Ttg....but his later biopsy came back clean. We assume that he just hasnt had celiac long enough to do enough villi damage, so we are treating him as "pre-celiac" and started the gluten-free diet anyway. If we can prevent other auto-immune diseases like Type-1 diabetes, etc., then it is all worth it. We decided to make our entire house gluten free and guess what....Luke's butt cleared up for the first time in 7 months, no more diarrhea and even my husband feels awesome, we assume there is some non-celiac gluten sensitivity going on.



We have decided to look at it like we're vegetarians....it is just our lifestyle and it has brought our little immediate family together like never before. We cook together and have a great time. There are a lot of great foods out there and we dont feel we are suffering at all (anymore).



Heidi

Heidi - posted on 01/31/2009

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Hi Heidi! Thanks for starting this group! I am also a Heidi and I am also a mom to two kiddos. Victoria "Tori" will be 7 in a few weeks and although she does not have Celiac and is not currently GF, she may be ADD/ADHD. Depending on the outcome of some testing we may try the GF diet with her. My son, Dakota "Cody", does however have celiac. He is now 4 and was diagnosed at 15 mos. Following Cody's diagnosis, we were all tested and were all negative.



Our story began around Thanksgiving of '05 when I started to notice something just "wasn't right". I guess you could call it mother's intuition. There was nothing that I could really put my finger on other than a very large belly. His doctor commented on it at his 1 yr check up in early November, but he was very healthy and thriving (25 lbs and 95th percentile on height) so we all thought that was just the way he was built. We had no idea what was lying ahead for us. Over the next two months or so symptoms started popping up, many of which none of us, doctors included, had any idea were symptoms at the time. He would often (at least once a day) turn blue around the lips when I changed him and ALWAYS had very red, cold feet and chilly hands. He was also tired a lot and caught every bug that came his way, but again it wasn't alarming and we figured he was just a kid that needed his 2 naps a day. I called the on-call nurse service that my pediatritian's office provides a couple of times when he turned blue, but because he never seemed to be in distress and it always resolved itself in a matter of minutes once he was changed and dressed again it was just written off as "he just got a chill". Just after Christmas Cody came down with bronchiolitis and never truly recovered...until his CD diagnosis and a GF diet. He often needed a vaporizer at night and we were giving him nebulizer treatments 3 times a day. In January '06 he began vomitting. At first it would last for a day or so and then he'd be fine for a week or two, so again it was written off as being just stomach bugs (he was in day care). His teacher at day care also told me that he would often just stop playing and lay down. By mid-February he was vomitting at least once a day and we even had a Dr. note for day care saying that it was not a stomach bug and he was basiclly just a puker. We were seeing the doctor weekly at this point for check ups (thank God for insurance!). It quickly became more frequent, 4-5 times a day and he obviously wasn't getting better. The doctor and I had been holding off on putting him through blood work hoping this would all resove itself and not realizing that all these symptoms were related. When he lost 12% of his weight in one week we quickly changed our minds and had him tested. The doctor ordered so many tests that they had to draw 5 viles of blood. Ironically, Cody wasn't even phased by the blood draw and barely flinched...much less cry!! He was never a complainer and the pain of a tiny needle in his arm was probably nothing compared to how his tummy had been feeling for the past few months. The doctor visits had been bumped up to every other day by now. I'm sure that was in-lieu of admitting him. The day after we drew blood the doctor had some of the tests back and everything looked fine with the exception of slightly elevated proteins. 3 days later, Febrary 25, 2006, the rest of the tests came back and his tTg was 208...waaay above normal. All other other tests (including cancer and cystic fibrosis because of his respiratory problems) were normal so his doctor disgnosed celiac and refered us to a GI. Because his symptoms (distended belly, lethargy and vomiting) were so "classic" we chose to forgo the biopsy and start the GF diet almost immediately. Within 3 days the vomiting completely stopped and he was regaining his energy. The respiratory problems completely disappeared in about two weeks and we were given a 99% confirmation of the CD diagnosis by the GI in Boston. The hardest part for us at this point was learning the ins and outs of the GF diet. Cody wasn't even phased one bit by it and to this day has always taken it in stride. Six months later we had him retested and his tTg was down to 146, still very high. We stepped up the segregation of foods at home by designating a section of the counter and several cabinets as GF. We also purchased some items (bread knife, pizza cutter, toaster and stoneware) to be used for GF foods only. We worked very closely with the cook at day care to be sure his foods were GF and cross contamination was eliminated. Our saving grace here was that the cook's mother was disagnosed as celiac at the same time Cody was so she had a truly vested interest in learning the ways of GF food prep! After another 6 mos we had Cody tested again and he was below 100. About this time he also needed surgery for ear tubes and hernia/hydrocele repair so we decided to do the biopsy at the same time as well. He had been GF for a year, but his tTg was still high enough that the GI concured it was worth the risk since he was "going under" anyway. On May 5th, 2007 he underwent surgery for all three procedures at the same time at Children's Hospital Boston. Even after a year on the GF diet, the biopsy gave us 100% confirmation. There was still some blunting of the villi and other indications of CD. The ear tubes and hernia/hyrdocele repair both went very well also. This time we opted to wait a year for the next blood test and this time it was...drum roll please...5, yes FIVE. We continue to keep him on a very strict GF diet because after all the research I have done, I side with the doctors who feel that celiac disease does not go into remission...at least not in the sense that CD goes away and one can resume eating gluten until symptoms arise. I firmly beleive that even tiny amounts of gluten can do damage and that damage will add up over time and result in much larger problems later in life (i.e. intestional cancer), even absent all symptoms. I also know first hand that celiac symptoms can mainfest in very strange ways and can appear to be something totally unrelated - just not a risk I'm willing to take.



Cody turned 4 this past November and is doing absolutely wonderfully. You would never guess that my BIG boy has celiac disease just by looking at him. He is 95th percentile on both height and weight. He weighs more than Tori!! He always has a smile...OK almost always...and to say he is high energy would be an understatement. He rarely gets sick and never complains about the GF diet. He now goes to a sitter every day rather than day care so we brown bag most of his food, but his sitter has taken it upon herself to learn about CD and GF cooking. She even made a GF cake for another child's birthday...and it was a hit! The kids didn't even know the difference. When we go to non-GF birthday parties cody gets to bring brownies. I have found that by only allowing him to have brownies (GF of course) for special occasions he is excited about it and doesn't care that he can't have the cake. We have found a couple of GF bakeries (Manchester, NH, Worcester, MA and Ayer, MA) so he does get a cake for his birthday. He will be going into public school in a year and a half and I know we are going to have to deal with another host of issues, but given that he is so accepting of the fact that he needs GF food I don't forsee it being too much of an issue.



I know this has been VERY long, but there is one other thing I want to share...Remember the cook from his daycare? She left the daycare shortly after his diagnosis and I was devastated. The new cook just didn't get it and I had to brown bag everything, not that this was the end of the world, but we had been spoiled. About a year ago our neighbor's house went up for sale and when the new neighbors moved in I was shocked to see that it was Annette, the first cook, and her family. She had taken a new job and now manages the lunch program for our district, even more reason why I am not dreadding Cody's entrance into public school. "But wait, there's more"...last summer she opened a cafe in our tiny town, complete with a GF menu!!! I am not a religious person, but I know she was "sent" to us for a reason...



I think that between making dinner and tending to the needs of two young kids this has taken me about 3 hours to write!! Hopefully, it didn't take you that long to read it. lol Thank you for reading our story and thank you, Heidi, for giving me the opportunity to share it! I'm looking forward to reading more stories here.



Heidi

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