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Completely Adjusted!
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10 posts in this topic

It occured to me that Celiac doesn't control my life!!--I do! :P

My whole family has been gluten-free for 6 years now, and now it is no problem

for me/us to shop in regular stores, eat out, go to parties, go on

trips, have a gluten-free hospital stay (we just had our 2nd little Silly

Yak!!),bring snacks for a group, and pack daily gluten-free snack bags for any of us!

So, to all you newbies out there, I just wanted to say that it does

get easier and easier--and better! Now-a-days there are sooo many

mainstream foods we can eat! :D

If you are still struggling, try to remember that soon you too will

be an old pro at this!! It won't take long...

If you are sad at the loss of your old life-style, know that you will now be far healthier than ever before.... Things will be different, but chin up, have courage, and look on the bright side! ^_^

Connie

gluten-free since 1-'98

--sitting with homemade pizza and beer, reflecting....

B)

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Hi Connie - thank you for these encouraging words. :D Lately I have been feeling down and this is just the "pick me up" I needed! :)

Thanks again!

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Hi,

Thanks to both of you! Connie, you are right there are a lot of easy gluten-free foods out there!

After a year gluten-free (diagnosed April '03) I find ways to prepare for outings and I am way better at asking the right questions in restaurants. And I feel better! I had forgotten how bad it was and then two weeks ago I got Celiac-Whacked twice I think in two days (accidental gluten ingestion). I'm still in some pain, but healing. I know how nice it is to be healthy again!

I having been gaining weight consistantly since fall. No more ribs poking out! I have energy! And I have answers (to why I was sick for so long)!

When I/we cook at home it is easy to forget that our kitchen is any different from anyone elses.

Best Wishes All!

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I totally agree! I've been gluten free for about 7 years and I think of myself as normal as anyone else. I am confident when I go out to eat that I can have a safe gluten free meal. I'm still working on the kitchen part since I still live with family that eat enough gluten to feed a small village for a year!!! There is hope for everyone, it takes work but it's worth it!! ;)

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Oh my, I'm glad I found this board. I took wheat out of my diet at the suggestion of a friend last August and within days felt wonderful! Unfortunately, when I finally got around to asking a doctor about it I'd been (relatively) gluten-free too long. My gastro-doc wanted me to go back on gluten for 4 weeks before the endoscopy after inconclusive blood work. I made it for all of two days. I guess that makes me part of the self-dianosed group! Connie, thanks for the encouragement! And "veggf" thanks for the new term..."Celiac Whacked" says it all!

Thanks again!

Lori

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Connie,

I just have a question. How long did it take you to feel better? I started feeling better immediately after going gluten-free, but I still am not where I need to be. My biggest problem has been chronic diarreah, and that has improved, but I still feel like sometimes I question if I have had gluten accident or not. I don't think so, but I will have diarreah or something. Is that common, to have good days and bad days even being completly gluten-free??? Just curious your opinion.

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Hi Laura,

I wish I could be of help on this one, but I never felt bad... But, I do remember feeling much better (if that makes sense!) :D

Yes, you will have good and bad days. And, you will still learn a lot more about celiac and the diet. It takes some longer than others to undo the damage a life full of gluten has done. And, it will take a bit yet to understand where hidden glutens lie...

And, once you become better and truely gluten-free, you will discover secondary food allergies that you have! :P

But, soon, you will be over the D, and writing to others on this board with helpful hints and suggestions!

Were you doctor diagnosed? Were other causes of diarreh ruled out? Are you still eating dairy? Do you kiss a person who eats gluten? Have you checked all your makeups for gluten? Sooo many places for gluten to hide!! Trace amounts might give you D...

Well, you've already done the best thing you could do--you joined this board!!

Keep reading and trying to figure it out and you will!

Good luck!

Connie

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Been gluten free for almost 4 months. Not really having a bad time of it. Like someone said there are so many mainstream products out there that you can eat. I e-mail everyone and ask if the products are gluten free. I'm learning how to make bread and its really not bad. Good thing you don't have to knead the dough because thats where I'd probably kill it. Bought a cookbook at the gluten free mall .I do have to say that to get started it's a bit pricey, but very challenging. Also someone stated that when you go somewhere you might have to bring your own food. I go to McDonald and bring my own bread. It's really pretty good. Pizzas not bad of course its not dominos but edible. You adjust to it. Don't let eating rule your whole life.

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Thanks Connie.... Yes I was Dr diagnosed, but blood work only. My Dr did not 2nd guess the tests and although he recommended that I get the biopsy's done, I decided not to. As soon as I went gluten-free I started feeling better. I apparently have been misdiagnosed for most of 10- years. 4 mo ago I had extreme chronic D..., a week into the gluten-free diet, I started noticing an improvement. OF course from where I started I have a LONG way to go. with in a month 1/2 or so I had mostly solid stools ( although still much to be desired). All of a sudden I started back to D and I have really been stuggling to get it under control again. As far as I know I did not have any gluten. Of course contamination is always a possibiility, but I try to be very careful, you would think that I would have had more contamination in the beginning when I had no idea what I was doing. Normally a gluten accident will noticeable immedicately...as in an hour. I did eat out a couple times, but did not notice anything that would have suggested an accident. So here I am 2 1/2 mo into a strict gluten-free diet, having been making improvements almost daily, back to where I started. I do think possibly today I can say maybe I noticed improvements from the last week or so, but it's been most of 3 weeks since everything went array!!!!! I dont' know what happened!

I know it's a slow process. It's just odd, and I don't know how to fix it. Even when things were going great, I would have one day with really solid stools, and the next with D... and then back to solids again for a week, and then D... Im so confused :angry:

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Laura,

I have no idea whether this could be the case for you, but with my son the longer he has been on the gluten-free diet, the smaller the amount of gluten accidentally ingested it takes to have a reaction. Actually, not only does it take less in quantity (because now just trace amounts are enough) to cause a severe reaction, but his reactions are now worse with quite an acute initial phase, and generally last about a week. I have heard about this phenomenon from a number of people, so it

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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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