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Back On Track
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Hi

I am new to all of this, well not all of this I have been celiac since I was almost 2 years old (now 21). I was always very good about my GFD when I was a kid, prbably until I hit the 4th grade from there it was once and a while to now when I dont even think twice about it. This is totally inexcusable since I will be graduating from nursing school in 2 months :angry: , I know the risks and everything that goes with this diease. I dont know what caused this sudden interest in my well being but I am gonna really try. I am also trying to lose weight which makes it very difficult sometimes being on the GFD, everytime I go back on a GFD I gain more weight. :unsure: Does anyone have any ideas on what I should do to get back on track, dietician, doctor, support group?????

Thanks

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I'm right there with you. Diagnosed at 2, began eating everything and anything I wanted. now 28 and terrible problems/symptoms. going to a specialist today. one of the few docs in my area in Colorado - listed as a recommended doc for celiac.

I gained about 12 lbs in less than 2 wks. I can do nothing to lose weight. less calories, more execise - nothing.

I'll keep you posted following my appt today. Hang in there.

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Thanks for replying, I have seen some of the postings and everyone seems to be completely compliant with their GFD. Makes me feel so guilty, like I am a traitor. What are the things you cant resist?? Are you trying to get back on your diet? Is that why you are going to the specialist?? I used to go every other year since I was 2 to a gastro guy at Sick Kids Hospital in Toronto, now the guy I go to doesnt want to see me unless I have problems or I want to get pregnant. I just feel very little support from him. I am wondering if seeing a registered dietician will help me?? Hope you appointment went well.

Lisa

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I started gaining weight and went on gluten-free diet and now I have lost most of my weight. I try not to buy the rice noodles and breads a lot. I eat them once in awhile but not a lot. I eat a lot of fresh fruits and veggies. Lean meats are great. Just set your mind to it and cut out all junk foods. also try not to reward yourself with your fave food. I did that and then it puts me back at square one. It is hard but today my Husband said that I was looking good and it made me feel good and proud of myself. My advice is to get a healthy cookbook and make some great meals. good luck ...you can do it!!!

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I have been trying relentlessly to not eat anything i'm not supposed to eat. But i feel worse. I went to specialist yesterday - great doc! he is probably in his upper 50's and he has studied Celiac his entire doctor life. Most recent research two weeks ago at a clinic.

He took blood work and of course scheduled me for a biopsy. He said he figures that he will then continue with colonoscopy, ultrasound, etc. So I fear that I'm in for months of tests and waiting. He told me the symptoms I am having could range from a wide range of things. From polyps on my colon, damage to intestine that may or may not be able to be fixed, cancers, to the extreme of nothing being able to be done. Scared? yeah a little but i'm optimisitic that it won't be too serious and will be able to heal.

I cannot eat anything or drink anything right now without feeling sick. sucks. like having the flu for the past year.

I have a hard time resisting pasta. and the rice and corn pasta's don't taste good to me. have been trying different brands with no success. I actually stopped craving breads, etc. and have no desire to eat them. which is great.

I'm thinking about going to a dietician myself b/c i'm having a hard time finding things to eat - for a balanced diet. Doc yesterday told me to start taking multi vitamins, etc. to help.

Good luck. Also - I have two boys - 3 and 4 and although my 3 yr old shows all signs of Celiac - otherwise - i have two very healthy boys and had no problems getting pregnant, nor labor and delivery. they both went full term.

so - keep me posted on your progress and i'll do the same!

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Do you ever feel like every time you have an ache, pain or anything else abnormal with your body you just chalk it up to the celiac? My boyfriend says that I am always sick, but in my opiion I am never sick because I say its self induced. I get scared that everytime I chalk something up to the celiac it could be something bigger that I should have checked out. :(

I need to build up some will power, my family can say with ease how I need to stick to my GFD but sometimes its just too hard. I plan to start today! I mean really try, its hard to picture my life without the cramping and bloating adn gas and without Mcdonalds little hamburgers :unsure:

I hope that they can get all your tests done soon, so you dont have to go through months and months of testing. I was very young when I went through all of that so I dont remember it. Stay strong and I here if you need someone to talk to.

Lisa

P.S. thanks kayjay for the advice :)

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Hi Lisa,

I'm a newbie, too. Been gluten-free since the end of January and I feel so much better. Had a couple accidental ingestions and paid the price; abd pain and bloating, diarrhea, just like the old days.

I had no idea how significantly gluten was literally poisoning my life until recently. I'm more energetic (not going to the gym or anything, just participating more in everyday activities and life in general), my skin looks younger and feels better, even my posture has improved over the "shrunken" appearance I had developed. My advice is to give the gluten-free diet a try. I've always been a "carb head" but once you get over expecting gluten-free food to taste like the real thing, most of it is not too bad.

Congrats on your upcoming graduation! I've been an RN for almost 8 years. It's a noble profession though it does tend to harbor the "eat our young" mentality, especially among the older nurses. Don't let them get to you. (remember this... you'll need it daily !!)

It's the field that makes us all hyperchondriacs, but you know, it probably IS the gluten is responsible for the majority of your complaints. I know all of my fragmented symptoms easily fell under the celiac umbrella, but they've all improved (not disapeared) since going gluten-free.

Good luck to you, and take care of yourself!

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once you get over expecting gluten-free food to taste like the real thing, most of it is not too bad. 

Please rethink your thinking! gluten-free food >is< the real thing! :D

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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