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Member Since 13 Aug 2010
Offline Last Active Sep 28 2014 03:48 PM

#923074 5 Years Gluten Free- Encouragement For The Newbies

Posted by on 07 July 2014 - 04:56 PM

It's good to hear you are doing well.  I used to post more 4 years ago when I went gluten free and I always loved your spunk and spirit.  The gluten-free lifestyle does get easier.  I have had to go deeper with my healing as I was diagnosed with another auto-immune disease this past March (Sjogren's) but I love that I've been able to manage both diseases with diet (for the most part…Sjogren's is proving to be a bit stickier).  Learning to love real and nutrient dense food took time, but it is so worth it.   Our bodies are amazing and can heal themselves with proper TLC.  I think it's a "great" time to be gluten free.  There is so much more awareness that even 4 years ago when my family went gluten free.   Feeling better is worth every step of this arduous journey.

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#885793 Newly Dx - Reading And Learning A Lot

Posted by on 25 August 2013 - 04:27 PM

I'm so glad you have your diagnosis.  I hope this doesn't sound at all cruel, but whenever someone in my life tells me they are diagnosed with celiac, I actually feel a little happy for them because I know (if they stick to the diet) that they are going to feel so much better very soon.  


I second the Udi's chocolate muffins.  They are so good.  They actually still make me a little sick, but sometimes I just have to do it, like a birthday.  


I do not have a celiac diagnosis, because after a negative blood test (hadn't been eating gluten for months) I just could not face going back on gluten for the endoscopy.  But whatever you decide to do is fine.  If I had the blood test I'd probably call it a day, but some people like to know the extent of villi damage.


I hope you start to feel much better very soon!

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#873015 Celiac Symptoms But Doctor Doesnt Believe In Food Intolerances

Posted by on 06 June 2013 - 08:44 AM

You need a new doctor.  Anyone who told me that I may need psychiatric help because of stomach problems and perceived binge eating would not be getting any more of my business.

Sometimes we crave foods that contain vitamins and minerals we are deficient of, without knowing that's the problem.  Also for the reasons that cyclinglady stated.  Please dump this turkey and find someone who listens and will do the testing you need!



You need a new doctor.  Anyone who told me that I may need psychiatric help because of stomach problems and perceived binge eating would not be getting any more of my business.

Sometimes we crave foods that contain vitamins and minerals we are deficient of, without knowing that's the problem.  Also for the reasons that cyclinglady stated.  Please dump this turkey and find someone who listens and will do the testing you need!


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#866903 What Other Communities/forums Are You A Part Of?

Posted by on 04 May 2013 - 08:39 PM

I am on a grain free diet and feeling quite good! There might be something to that.

I have seen a lot of posts poo-pooing this particular "doctor" (actually I think he's a chiro) but I have to say the only way I feel really good is grain free.   I know it's not the solution for everyone, but if someone is looking for that final "oomph" then grain free might be the solution.

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#855319 Cracks/sores At Corners Of Mouth

Posted by on 22 February 2013 - 05:44 AM

I am speaking only from personal experience here.  There may be much better advisers.  I personally get those cracks when I'm vitamin B deficient.   Usually a few high doses of b will get rid of those cracks pretty quickly.   I know celiacs are often deficient in b.   


Also, one of my really good friends is a nutritionist.  I haven't seen her on a professional basis, but she has told me in the past that those cracks might be indicative of yeast overgrowth, or yeast infection.  


So, I guess you could try the vitamins and getting rid of the sugar and yeast for awhile. 


eta:  When my daughter was first diagnosed that was one of her worst symptoms.  They took weeks to clear up (it seemed) but they did clear up.  I think it was a combo of high doses of vit B and diet change.

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#840897 From Mn To Pensacola, Florida And Back

Posted by on 04 December 2012 - 10:14 AM

I have an app for whole foods on my iphone that we've used as we travel. We go to Florida a lot, but never Pensacola. Anyhow, probably like your travel, we now make sure we have a kitchen and know where all the WF's and Outbacks are. I know that's not organic, but my daughter and I can get a steak and potato and they seem pretty aware of gluten free diets.
The thing I love about Florida is it's so easy to get fresh seafood and a salad. Honestly, that's one of the easiest states I've been too. Not that there is necessarily a huge awareness of celiac, but easy to get seafood.

In MN I shop at the co ops and get organic as much as possible, but when we travel I sort of just do the best I can. It doesn't always work as I am now dealing with muscle and joint pain from TG travel, but most trips we (daughter and I) come back in one piece. Good luck on the trip.
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#839531 Sick And Tired Of Being Sick And Tired...

Posted by on 28 November 2012 - 08:11 AM

I could give you a lecture about cheating, but I think deep down I know the only reason that I don't cheat is because I couldn't get away with it. I got some cc at my inlaws house for TG and have been racked (wracked?) with pain for days. I've also been sitting on a heating pad constantly. But it sounds like you're ready. Once you get over the hump and truly start feeling better I don't think you'll be tempted to cheat anymore.
The one thing that still gets me all these 2 1/2 years later is that I still have bad days and like now, bad periods of time where I am just sick...can't get anything done, and it bums me out. So, expect those days, and a possibly slow recovery, but embrace the good days...they are there for you if you are diligent. Good luck.
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#828942 What Do You Want To Tell Your Friends And Family About Living Gluten Free?

Posted by on 11 October 2012 - 05:59 AM

Please don't tell us that that you wouldn't be able to handle our situation because you "would just DIE without breads and cakes" - we get it, you like bread....personally, I'd prefer to go an hour without running to the bathroom... :)

(I heard that one THREE times this week!)

But more importantly, get yourself tested!! I had no idea I had it, so you may not either!!!!

Sort of on that note: I heard from 2 different people over one weekend that they put their dogs on a grain free diet because it's so much healthier for the animals...but they themselves would "die" without bread.
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#828772 What Do You Want To Tell Your Friends And Family About Living Gluten Free?

Posted by on 10 October 2012 - 10:45 AM

That I cannot "reverse" my gluten intolerance by eating small amounts of it, gradually increasing the amounts. So glad it worked for you (I personally suspect your gut has healed for now and you will be hit hard again in a matter of time), but as for me and my child...um: NO.
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#800402 Went gluten-free In Support And Found Out You Had It?

Posted by on 03 June 2012 - 03:40 PM

OH my goodness, it drives me crazy all the people I talk to who I KNOW are having gluten problems but don't even want to hear it. (Because I was the same way I guess)

After my mother who was diagnosed with a wheat allergy and my girlfriend who actually had a dairy allergy (but figured it out doing an elimination diet) convinced me that I should at least try dropping gluten and dairy to get to the bottom of my many health issues, I finally was at least convinced to do a trial.

O. M. G. I felt human again. I wanted to shout from the rooftops "gluten free has changed my life" I was amazed.

Then....after 7 months gluten (and dairy and corn free) I FINALLY realized why I was set on my journey. My 7 year old daughter who had chronic diarrhea and constipation from the time she was off breast milk, who was the tiniest one in her class, who was ill all the time, had cold sores and chapped lips, hives and rashes...she was in much worse shape than I ever was...I realized that God (fate, Karma, the Universe) had made me sick so I would really understand how sick and miserable my child was, and because I understood I could make it better for her.

I;ll never forget the day after she'd eaten a piece of cake and collapsed in my arms that I finally figured out that she was going through exactly the same thing that I was and that I could make her feel better right this minute by eliminating dairy and gluten.

Neither of us have an official celiac diagnosis. The closest I came was the doctor saying "I think you have celiac disease but you'll have to go back on gluten for two months to test" (many symptoms and DH rash)...um no. And for my daughter I wish I did it before I took her gluten free, but I didn't want her to feel that way for one more day.

My 40 year old brother absolutely should be gluten free....my husband can take it or leave it without getting ill. My whole immediate family (dad, mom, brother) has diabetes...So, it's been quite a journey. I worry for my brother, but my biggest blessing is my little girl who is now nine and completely on board. I think she would go on a broccoli and celery diet to never feel sick again like her first seven years.

I know for me a celiac diagnosis is probably meaningless. I hope at this point that a "gluten sensitivity" diagnosis will help at school with my daughter. I will put her in an apartment with a kitchen through college if I need to. I hope she gets to have the dorm experience, but gluten free and safe will be the biggest priorities.

Oh...My MIL did go gluten and dairy free at my urging. I urged because of her cholesterol and symptoms, but what she heard was "weight loss"....she's a believer. She did the classic eliminate for 6 weeks then go out for a dinner and 'cheat" and got very very sick...so she's convinced.

So, I have 2 converts I guess. Wish it were more.
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#764435 Why Do I Now Get Sick From Gluten When I Didn't Before Going Gluten Free

Posted by on 12 January 2012 - 05:27 PM

I admit I am completely paranoid about gluten. This comes from years of chronic fatigue, secondary infertility, miscarriage, migraines, rashes and very very bad joint pain...not too mention more than once having to give myself permission to just go to the bathroom in the car because I didn't think I could get home in time (for the record I made it every time).

And then I am paranoid on behalf of my young daughter who by age 7 was so sick she had fevers and strep more days than she was healthy, rashes, distended belly, sunken eyes, ruined teeth, ADHD, chronic diarrhea...and oh, I was gearing myself up for a cancer diagnosis, was thankful it was only gluten and dairy (and corn) so...um, yep. Terribly paranoid.

And unapologetic.
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#758241 "can You Eat This? What About That?"

Posted by on 20 December 2011 - 04:23 AM

Oh I know I know. That drove me crazy. Now what drives me crazy is people saying "Are you still doing that gluten free diet?". Um, yes. That would be a forever thing.

I don't know if this will help, but what I tell people is that it's easier to think about what you can eat instead of what you can't. I usually just say, the diet is pretty easy (hee hee); I just eat a lot of meat, veggies, fruit and nuts. It seems like most people can wrap their heads around that.
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#755693 Sick

Posted by on 11 December 2011 - 08:02 AM

I didn't ever comment on your last thread, but I read through it and the responses. I agree with Irish Heart. You have your answer. You are gluten intolerant. That is not food poisoning. That is exactly the response my mom had when she was accidentally given a wheat tortilla in a restaurant, and even now she's not convinced it wasn't food poisoning. It's just a little too coincidental for me...or I guess technically it is food poisoning since gluten is poison to YOU.

Drop the gluten and good luck. You are going to feel amazing in a few months, if not weeks or days. Safe journey!
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#751944 Still Angry Sometimes After 2 Years

Posted by on 29 November 2011 - 05:05 PM

You're welcome :) My son is a different child after going gluten free despite negative blood tests. His baby and toddler years were so hard. So very very hard. He had quit growing and after he went gluten free he is normal height.

Same with my daughter. She is 8 and is actually quickly outgrowing her clothes and shoes. Expensive, but I'm so happy. She's so much more mellow and happy gluten free. So am I, come to think of it.

Also, thanks for not backing down. So often I just ignore the naysayers, but it's important that those of us who are self diagnosed are heard.
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#748307 Why Aren't Doctors Up To Speed?

Posted by on 17 November 2011 - 03:51 AM

Sadly I have talked to two people (not a big sample but telling). One of my friends who just started her residency when I asked her what she knew about celiac and she told me that it was a disease you only have to look for in children. The boyfriend of my friend who just finished his residency in GI said that anyone who hasn't had a biopsy and thinks they have celiac should go back on gluten to get the testing as way too many people think they have celiac who really don't have any problem with gluten. Being this is what people are learning in med school right now, I'm not too hopeful about the current generation of doctors knowing much about celiac.

As someone who tested negative for celiac, I have a hard time with doctors who assume that a negative celiac test means that gluten isn't the problem. My poor younger brother has been suffering for years because of a negative blood test for celiac that his GI did. This poor man felt great on the Adkin's diet but he's convinced that it was the fact that he wasn't eating sugar. His health keeps declining (stomach issues, depression, diabetes) but because celiac is ruled out it must not be gluten. Unless a test confirms something, or unless there's a drug to treat a symptom, then it's all in the patient's head...and it's so frustrating that so many serious symptoms can be alleviated for people just by changing diet but this information just isn't getting out there.
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