Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

Welcome "newbies", Thank You "oldies"


frustratedneicey

Recommended Posts

frustratedneicey Apprentice

Hi. I have not been on here on a regular basis, but I want to say a few things.

I want to thank all who have been supportive and helpful and sympathetic. I have had good experiences on this board for the most part.

I also want to welcome all new members and say that please don't be discouraged if you get one poster who is not so supportive. This happened to me when I first became a member and it discouraged me and I wasn't sure if I would return to the site.

When I first began this lifestyle, I was having HUGE coping issues. So, I entered into this message board about coping with Celiac Disease. Everybody was helpful and supportive, exept one person. She was very condescending and rude and basically made me feel like less of a person because I was having a hard time coping. ONe of the things she told me was that I needed to learn how to cook real meals from scratch. Well, I do when I am able. Because I also have MS, my fatigue sometimes prevents this. She also tried to make me feel guilty because "so many people have it worse than I do and I should be ashamed that I am acting like this about something as trivial as a diet change".

I was not going to come on here again and then I thought "Hey, there is a reason why this is called "Coping". Obviously, it is here for a reason. Since then, I have been a little reserved about posting anything. I have noticed that this particular lady has not been on any posts that I have read recently, so I feel safer giving my thoughts and input.

If this particular lady is still on here and reads this, I would like to tell you that you are no help to anyone who needs some guidance, you only discourage people, and maybe you should avoid this board.

But anyway, (sorry for whining), I want to let you new people know that this is a wonderful board, and everyone else is sympathetic to your trials and feelings and that you should continue to voice your questions, concerns, and feelings.

Thanks again to all who have been there for me and gave me guidance and backed me up with dealing with this lifestyle. You are all special people and it has meant so much to me.

Thank you

Denise

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Denise,

I am so sorry you met with someone who wasn't as sensitive to your feelings. I am aware that there are people on here like that. Learn to trust the ones you can and take the things that hurt with a grain of salt. Most people who hurt don't do it intentionally, others are having a hard time dealing with their own issues and have difficulty being sympathetic to those they perceive as less sick. I'd be one who was less sick and I don't understand everything people are going through but I do try to encourage them and give them ideas.

I'm glad you came back and welcome again. :P

Link to comment
Share on other sites
jerseyangel Proficient

Hi Denise--

I'm really glad that you deceided to stick around. I'm sorry that you were upset in the past by another poster, but hopefully that won't happen again.

Keep in mind, that if something like that should ever happen again, you can just hit the "report" button at the bottom of the post in question. This will alert the moderators and the board administrator.

Again, we're happy that you're here :)

Link to comment
Share on other sites
tarnalberry Community Regular

I'm going to guess that I'm the one who hurt your feelings on the "cook from scratch and get over it" front, because what you describe sounds like my sort of response. I apologize for hurting your feelings, but it brings me to the advice to newbies to realize that the written word is woefully inadequate for getting across the full meaning of something. There's no way to convey the intonation, body language, and nuance that is a part of our normal conversation, so - instead - assumptions are made about those things, and sometimes the assumptions are wrong.

So, again, frustratedneicey, I apologize if my advice to simpilfy by cooking from scratch to avoid cross contamination in manufactured foods and that in the grand scheme of things, after getting past the learning curve and having had time and practice with it, the dietary change will become relatively easy was not what you wanted to hear or failed to come across in the way I had intended it. I hope you have found the advice you are looking for, and have been able to seen positive change since you've gotten your diagnosis and are seeing improvement these days.

Link to comment
Share on other sites
penguin Community Regular

I found the thread you were talking about, frustratedneicey. Man, that did get ugly! But I don't think it had much to do with you, but more the two people fighting. One I've never seen before and the other was banned :P

Glad you stuck around :)

Link to comment
Share on other sites
floridanative Community Regular

Denise - thank you so much for your post. I too felt the same way when someone (not Tarnalberry) told me when I asked about dining out that my life of dining out and travel was over. In the words of Jon Stewart - "whaaaaaaaa???!!" If I'd listened to them I would have missed the vacation of a lifetime this past May! In fairness it is easier and more fun to eat out OUT of the US than you'd ever assume. When I looked at the board as a whole I noticed that there were only a few on here that I needed to ignore.

And in the end it was the naysayers that forced me to find a meetup/Celiac group that eats out around town every month. So I really owed them a big thanks for being pretty ugly to me. B)

Link to comment
Share on other sites
tarnalberry Community Regular

Never let celiac keep you from traveling!!!

Ok, maybe not touring the great french pastry chefs... :P

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



evie Rookie

[quote name='frustratedneicey' date='Aug 16 2006, 01:41 PM'

Soo glad you came back!! :) I came on early April, 06 but do not remember such poster, may have been before that. sounds like a very unhappy person taking things out on you. I am hoping you still learned from the forum and are feeling much better now as I am too. It is so great to be able to learn from the posters who seem to have more knowledgeable doctors than most of us or who are good at research and share it with us!!! Sooo many have been sooo generous that way. I am trying to get up the courage to eat out in a resturant but since we do not have places in our area that cater to gluten free people am still hesitant. So far I have taken along my little cooler to eat while others order.

Hope to hear more from you in the future here. :):D:P evie

Link to comment
Share on other sites
schuyler Apprentice

Thanks for coming back and giving us another chance :D . All of the regular posters on here are awesome and helpful. I'm so sorry that you had to deal with rude people. I know how if feels. A few months ago, I posted a topic about how I was a vegetarian, but I was thinking about eating some chicken. Lots of people responded and gave me their advice and opinions, but there were 2 people who sent me nasty PM's (they were posters I'd never seen before then, and I have not seen since). I know it hurts.

Again, thanks for posting again.

Link to comment
Share on other sites
mouse Enthusiast

Evie, if I may make a suggestion to you about dining out where they do not have gluten-free menu's. I eat at a local hole in the wall that has fish fry every Weds and Fri. I mean a real hole in the wall. It is owned and family operated. When I first got diagnosed and finally decided to eat out, I went and talked to the owner. They had a meeting and I now eat there as safely, if not more so, then the gluten-free dining places. They worry about cross contamination. If I want cat fish, I call first and they defrost a non breaded one for me. The cook (and I have met him) puts it on foil and broils it. I take my own salad dressing as I have other food allergens. I am totally relaxed during my meal. I might suggest that you pick a restaurant that you would like to eat in and go and talk to the owner or manager during a time they are not busy. If they have more then one manager, find out the schedule for the one you talk with. It is a start. I go to this hole in the wall restaurant when I decide on short notice that I just want to eat out NOW.

Link to comment
Share on other sites
jkmunchkin Rising Star

I'm really sorry to hear that one of your 1st experiences with us was so negative, but I'm glad you returned. I don't know what I would do without the people on this board. For starters I think I'd be eating only bananas and white rice. But I truly think we have an extremely supportive, patient and intelligent group. There are always going to be a few bad apples, but overall I've gotten some incredible advice not just on celiac, but even when I just need to vent about something going on in my life or ask a question about something unrelated; I always get support and help.

I've browsed on other celiac message boards and found they were extremely judgemental. This one is so welcoming. We're glad to have you.

Link to comment
Share on other sites
Lisa Mentor

Evie:

Some times we do get "possers" (posing as others), but there are some old schoolers here that can nail them is short time. Perhaps the one that offended you, it not longer on this site for obvious reasons. If anyone respondes to you in an inappropriate way, please go to "Report" and it will be dealth with.

I have changed my user name, but I have been here a while. We have so many members now and it is very hard to keep up and answer questions. I'm good with the "newbees" and there are other experts to handle the tech. aspect.

Never the less, I am glad that you are back.....and I bet you are as well. Welcome.

Lisa

Link to comment
Share on other sites
evie Rookie
Evie, if I may make a suggestion to you about dining out where they do not have gluten-free menu's. I eat at a local hole in the wall that has fish fry every Weds and Fri. I mean a real hole in the wall. It is owned and family operated. When I first got diagnosed and finally decided to eat out, I went and talked to the owner. They had a meeting and I now eat there as safely, if not more so, then the gluten-free dining places. They worry about cross contamination. If I want cat fish, I call first and they defrost a non breaded one for me. The cook (and I have met him) puts it on foil and broils it. I take my own salad dressing as I have other food allergens. I am totally relaxed during my meal. I might suggest that you pick a restaurant that you would like to eat in and go and talk to the owner or manager during a time they are not busy. If they have more then one manager, find out the schedule for the one you talk with. It is a start. I go to this hole in the wall restaurant when I decide on short notice that I just want to eat out NOW.

Did not realize you had changed your name here till now!! :o Thanks for the hint, I do have a a local resturant where I have talked to the chef, planned my food but in the town where we shop mostly 30 miles away there is a buffet where I can't do that. So I just take my own food, also I am still taking on new allergies (food) and still doing 4 day rotation of foods. I think getting dx'd so late in life makes it a bit more difficult too. Thank you so much for thinking of me!! Hope you are doing well lisa !! :) momma goose, thanks for your input too. evie

Link to comment
Share on other sites
Lisa Mentor

Welcome Back, evie

Link to comment
Share on other sites
frustratedneicey Apprentice
I'm going to guess that I'm the one who hurt your feelings on the "cook from scratch and get over it" front, because what you describe sounds like my sort of response. I apologize for hurting your feelings, but it brings me to the advice to newbies to realize that the written word is woefully inadequate for getting across the full meaning of something. There's no way to convey the intonation, body language, and nuance that is a part of our normal conversation, so - instead - assumptions are made about those things, and sometimes the assumptions are wrong.

So, again, frustratedneicey, I apologize if my advice to simpilfy by cooking from scratch to avoid cross contamination in manufactured foods and that in the grand scheme of things, after getting past the learning curve and having had time and practice with it, the dietary change will become relatively easy was not what you wanted to hear or failed to come across in the way I had intended it. I hope you have found the advice you are looking for, and have been able to seen positive change since you've gotten your diagnosis and are seeing improvement these days.

Tiffany, It was not you who made those comments. I recognize your name and know for a fact it was not you. I am not sure what the lady's name was, but I know it was not you.

Denise

I am so sorry you got hurt. I hope you will find that most people on here are caring and loving. How are you doing now? Are you feeling better?

Thank you for asking. As far as Celiac is concerned, I am doing very well. A few cross-contaminations here and there, but I recently had a endoscopy for gastritis and while they were down there they biopsied my small intestine and said every looked good. No flattened villis. As for the other thing, (MS), summer is not a good time of year. The heat reaks havok on my symptoms.

Thanks again.

Denise

Link to comment
Share on other sites
tarnalberry Community Regular

Thank you for letting me know. :)

I'm glad to hear that your biopsy showed good results! Hopefully the heat will calm down soon! (Hehehe... come to Seattle... "Hot" here is 80. We get a handful of days that might hit 90.)

Link to comment
Share on other sites
eleep Enthusiast

Tone of voice is always an issue on message boards and in email, but, Tiffany, your tone always comes across as very technical, disciplined and practical to me -- not the least bit cold or condescending.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,090
    • Most Online (within 30 mins)
      7,748

    Nicole K
    Newest Member
    Nicole K
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @trents Just seen this - Boot's is a chain of pharmacies in the UK, originally founded in the 19th Century by a chap with the surname, Boot.  It's a household name here in the UK and if you say you are going to Boot's everyone knows you are off to the pharmacist! Cristiana
    • Denise I
      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • trents
      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
×
×
  • Create New...