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Member Since 19 May 2010
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#758624 What's The Best And Worst About Being Super-Sensitive?

Posted by on 21 December 2011 - 08:59 AM

Just to clarifiy I did not mean to imply that Steph was offended. I am not her nor do I know her personally. I meant only to say that I am hurt and offended by the insentivity of others. And that is fitting with this topic as it was asked what is the worst part about being supersentive. In my two years being gluten sensitive this has been the worst thing I have witnessed--other celiacs not showing compassion (not just in this thread but elsewhere) to those MORE sensitive then themselves.

This is important to know.

Since all we have are words on a screen, and no facial expressions, it's easy for eight different people to read a sentence eight different ways.

If something really ranks you, then please either respond in the thread, or hit the report button, and tell us what you see the post as saying. It's the only way we'll know that something was taken amiss by someone else.

So to be clear, are we allowed to say if "eating at such and such a restuarant made me sick"? Or are we allowed to point out that under 20 ppm makes some people sick and certain gluten free products make us sick? Is there a liabiltiy issue with pointing this out and naming company names? Because I have been on this board for almost two years and I only noticed in the last few months that whenever someone posts, "Oh I can't eat _____" there are two or three people pointing out that they are indeed wrong and that most celiacs can eat _____. I find this very counterproductive and demeaning to always be pointing it out. It may be true that most celiacs eat 20 PPm products just fine but how does it help the person with the problem of not being able to eat _____?
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#758608 What's The Best And Worst About Being Super-Sensitive?

Posted by on 21 December 2011 - 08:32 AM

Sorry, but I never said those words. I never even implied them. Please do not put words in my mouth.

I have never openly attacked anyone --in fact, I try to temper remarks of those who are critical because I feel bad when anyone is not treated kindly --and I certainly have never said a word to you about anything regarding the topic of super sensitivity.

Wow, I have always been kind to you, GFManna, so I am very surprised by your angry response to me.

You said that you agreed with Gemini who said:

I think anyone who is sensitive can go out to eat successfully because there are restaurants who can produce a truly gluten-free meal.

And then goes on to describe how to eat out carefully. Sorry but his statement is NOT true for everyone. It is his experience and he is free to share that but to share that when responding to someone saying they can't eat out is just as invalidating as what you implied Steph was doing IMO. My response was not meant to be angry. I am NOT angry. I am just very hurt that this website that used to be my positive support place has turned into a place where others are not allowed to share their expereiences without being questioned/doubted/told they must be doing somethign wrong. Lately I have noticed more and more posts saying we can't share if a particular gluten-free product makes us sick or if we can't eat at a particualar restaurant. You, IrishHeart, have always been kind and that is why I am so shocked at your hurtful responses above. I understand you didn't mean them to be hurtful but they were. I am not trying to hurt you back. I am tryign to make you understand where the supersupersensitives that post on this board are coming from. Perhaps I am doing it poorly. I apologize as we can't read facial expressions on a forum. But I am not angry. I am heartbroken. :(
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#758591 What's The Best And Worst About Being Super-Sensitive?

Posted by on 21 December 2011 - 08:00 AM

You do not have the right to negate my experiences and I respectfully ask you to please stop doing that.

I understand that you felt she was attacking you but are you not doing the same thing to her by invalidating HER experience of not being able to safely eat out? She should be able to share that without being attacked and put down and told in effect--"oh you could eat out if your were really careful". No. Some of us can't eat out. I didn't see anything attacking in Steph's post. I saw it as her trying to clarify why some people get tired of preparing all their own food--they can't eat out-- but your post was very hurtful, in my opinion. It's amazing to me that you don't see this. I'm NOT as sensitive as Steph and TH and yet I see them constantly harrassed on this forum for sharing what their life is like as super-super sensitives. They have NEVER claimed their responses are typical. They have NEVER claimed that ALL celiacs should have to live like they do. What I see is people reaching out hoping for some empathy or a chance to share their stories in hopes it might help the small number of supersensitives, and they just get slapped time and time again for it. It's for this reason I have not been around this forum a lot lately. I'll probably be banned or repprimanded for posting this but it's how I feel. <_<
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#758495 What's The Best And Worst About Being Super-Sensitive?

Posted by on 20 December 2011 - 09:49 PM

The best thing is eating healthier and actually feeling better.

The WORST thing is being openly MOCKED by those less sensitive.
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#740006 The What's For Dinner Tonight Chat

Posted by on 19 October 2011 - 02:32 PM

Tonight I made rice chex encrusted chicken breasts with green beans and mashed potatoes.
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#740003 The What's For Dinner Tonight Chat

Posted by on 19 October 2011 - 02:30 PM

Have you tried that really pretty yellow and green one shaped like an acorn? I love butternut, but I love this variety even more.

I love to cut an acorn squash in half, put the halves in my crock pot and fill them with different things--You can go sweet and fill with apples or applesauce with cinnimon, brown sugar, raisons or craisins and walnuts or pecans. Or fill with a savory ground meat filling--ground turkey and rice with sage and butter is good.

Last year I tried delicata squash for the first time--it's a long striped multi-colored winter squash and tastes very similar to sweet potatoes when roasted.
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#739998 The What's For Dinner Tonight Chat

Posted by on 19 October 2011 - 02:22 PM

Wow! That sounds good, Manna. What is Med Rice?

Oops, I mis-typed that. It was actually called Middle Eastern Rice. Here's the recipe: http://allrecipes.co...eas/detail.aspx

It was just okay. I felt like the recipe would have been better with ground beef or lamb instead of ground turkey. The rice was good but the turkey just didn't taste right with the beans and spices to me.
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#739722 It's Annoying!

Posted by on 18 October 2011 - 01:42 PM

You have to consider people who have not fully made the connection to their health problems and gluten or those who are just developing symptoms. When I first was diagnosed as wheat intolerant with a barely allergy I was told that it was ok to eat small amounts of wheat as long as I wasn't having a reaction to it.

I wasn't talking about people trying it out because they thought gluten might be making them sick. Everyone does things imperfectly in the beginning because it takes time to learn some things like cross contamination. That's understandable. However you know NOW the people that told you small amounts of wheat now and then were okay were not really aware of what a gluten-free diet means, correct? (and before everyone jumps on me and says 20 PPM or less is okay. I'm assuming that sariesue is talking about having some croutons on her salad or a small bite of cake every once and a while--much more than 20 ppm--I dopn't even want to enter that debate.) It's the people that are spreading that mis-information by being inconsistent that bother me.

Someone else above mentioned family members eating gluten-free to support someone. Well my husband eats gluten-free with me at home and he often will eat gluten-free with me at restaurants too. However, he doesn't go around telling people he is on a gluten-free diet, because he's not really. He tells people he likes to eat gluten-free to support me, but he can have gluten whenever he wants. That's different than telling people, "oh I can't have that bread because I'm on a gluten-free diet," and then eating a (non-gluten-free) cookie for dessert. Or a tennis player that abstains from gluten in order to play well and then brags about having a gluten feast on purpose after his match is over. Those people send mixed messages to the general public about gluten free and are the reason (IMO) that some people may not think gluten is a serious health risk to anyone and is just a fad. Again, I don't care about people doing it for a fad so long as they admit they are doing it for a fad and that other people have serious health reasons for avoiding gluten. If fad gluten-free dieters want to have gltuen every now and then they shoudl not say they are on a gluten-free diet but should say they eat a "low gluten diet" or something else besides a gluten-free diet.
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#739339 If I Cheat On My Gluten Free Diet, Could I Be More Likely To Get Type 1 Diabe...

Posted by on 17 October 2011 - 08:12 AM

Thanks everyone for being so supportive. The day came and it was absolutely great. I feel so guilty now for contemplating eating a normal cake.

The gluten free wedding cake was so good. We didn't even tell anyone else I'm celiac, only the venue staff knew and everything served was gluten free. :)

Had it not been for this forum I don't think we would have been convinced to make alternative plans, so once again THANK YOU!

We're on our honeymoon at the moment, and the gluten-free food offerings have been really good, too! :D

Congratulations! I'm so glad your day went well and the cake was good. Your off to a great start now with a new husband that knows that gluten-free food can be good food too! Enjoy your honeymoon!
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#739300 It's Annoying!

Posted by on 17 October 2011 - 06:19 AM

Well, me too, but is it really all that different than the "pizza and a diet soda" mentality?

I think that IS different. Ordering the diet soda with the pizza has some "advantages" in their mind. Whether there is an actual health advantage or not is a different question,but it does cut down on calories or sugar in their total meal. What is the so-called advantage of cutting back on gluten but not eliminating it? They should call it a low carb or low wheat diet instead of saying they are eating gluten free.
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#739282 It's Annoying!

Posted by on 17 October 2011 - 05:15 AM

I only get upset at the people that claim they are gluten free and then turn around and eat something with gluten. I don't care why they are gluten-free, I just want them to be serious about it/educated about it.
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#739119 Could Intolerance/sensitivity Cause Me To Feel Lousy Only A Few Times A Month?

Posted by on 16 October 2011 - 10:56 AM

The total IGA was in the normal range. I am already doing a trial of gluten free. Starting to believe there is a lactose intolerance so I suspect that I'll be doing DF and then reintro gluten soon and I'll probably do the rest of the panel then.

Just make sure that when you reintroduce gluten you are eating it for 2-3 months before testing.
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#739044 Child Back In Hospital

Posted by on 16 October 2011 - 04:33 AM

In the mean time.. am I crazy for being concerned? Am I being over protective? Do those labs really mean nothing? I just don't know what to think. This is all over my head.

No, you are not crazy. I've read and experienced similar things in hospitals myself. Write down ALL of your questions for the PED and ask them in as calm of a voice as you can. It's hard not to get emotional over these things and your emotions can make you forget the questions you were going to ask or distract the dr from looking for the answer. So write it all down and leave room on the notepad for his answers so you can write down what they are going to do or what each thing means. I would strongly press for an immediate repeat of the TB testing and if they will not do that then find a new dr. Isn't Tb a very infectious disease? I can't believe they would let him out of there when he started having nosebleeds again (but I also sadly believe it because I've been discharged from a hospital when I couldn't even keep water down to swallow my pain meds yet). The only thing I can figure is that perhaps your insurance only covers a certain number of days in the hospital and then the drs have to have really serious justification for keeping him there in order to get additional days covered. Either way, don't let them just brush you aside. Keep asking questions and pressing for testing until you either have answers or your son's health problems are resolved (sometimes things resolve without clear answers).

Also I know you said you don't suspect gluten is the cause of this all (it may not be) but I agree with a few previous posters that suggested it's a good idea to make your home gluten-free to see if that helps him. If he does have another infection like TB, accidental gluten exposure (like the playdough incident at school) could make it harder for his immune system to ralley to fight that infection. When he does get better and returns to school I would offer to make/provide gluten-free playdough for the entire class so there isn't even an issue of other kids having it all over them and he can play with them. Moondough is a brand that is gluten-free if you need to buy it.

I hope you can get this all sorted out soon so you can get him on a road to recovery from all this. From what you have posted about his tests, it does sound like he has a thyroid condition and that can cause the night sweats and some muscle pain. Hopefully you will get good follow up from the drs and a plan of action to combat that.
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#738984 What Helps You Stay Positive?

Posted by on 15 October 2011 - 06:29 PM

Here's a pizza crust thread to help you find the perfect crust: http://www.celiac.co...a-crust-thread/

When you find a really good recipe, don't tell your husband it's gluten-free right away, just give it to him and see what he thinks. Then when he says it's good take piece yourself and tell him it's gluten-free. He might be hung up on the idea of gluten-free not tasting good and so he's hesitant to try things.

Also if you are in the US glutenfreeregistry.com has an "I want pizza" button for finding out if any restaurants in your area make gluten-free pizza.
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#738928 Help Me With Toast!

Posted by on 15 October 2011 - 12:01 PM

Fortunately for you, most gluten-free bread tastes better toasted. Rudi's bread is my favorite, followed by Udi's. You can get even better gluten-free breads by making your own. Search this board for some bread recipe threads. There have been some good ones in just the past few months.
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