Jump to content
  • 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 Our Content
    eNewsletter
    Donate

How Has The Forum Helped You?


CarlaB

Recommended Posts

StrongerToday Enthusiast

I'm so glad you started this thread. Will all the recent um... "emotional outbursts" (for lack of a better term) we need to concentrate on why we're really here.

I learned 100 times more here then I did from my own doctor, nutrionist, and wellness coach combined! From cross contaminiation, to reading EVERY label especially lotions and shampoos - which I never ever would have worried about... to the most important is that I AM NOT ALONE!!!


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast
I'm so glad you started this thread. Will all the recent um... "emotional outbursts" (for lack of a better term) we need to concentrate on why we're really here.

Yea, I had an ulterior motive, I wanted to distract everyone from some of the other threads! Seems like everyone wants to post, so I thought I'd redirect to a more positive thread!! ;)

Canadian Karen Community Regular

Gee, where to start:

1) I learned that a 13 yr old boy could be an amazingly articulate human being with the capacity to singlehandedly reassure me, calm me down, give me clear concise information and show a level-headedness that I didn't think existed in a 13 yr old. celiac3270, of course I am talking about you. Our wonderful celiac3270. We luv ya! Oh, and we're sooooooo proud of you too!

2) I didn't even know cross-contamination existed until I came on here.

3) I have learned that everything that I have read saying "Going gluten free almost immediately shows positive results and that as long as you go on the gluten free diet, you are guaranteed that everything will go away" IS A LOAD OF CROCK! True, it happens to many people, but there are many of us out there who have had so much damage done that we are beyond the point of no return. I have gotten comfort in the knowledge that there are more than just me that have not reached total health again due to this disease.

4) I have made the most wonderful, caring, exceptional friends on here. Friends who have offered to pay for me to get additional testing down in the States, friends who have sent me little "pick-me-ups" in the mail when I am feeling down, friends who have sent other things that have helped me tremendously, friends who I know can be counted on no matter what. This point alone is the single most important reason why I thank God every day (sorry, Steve) for steering me to this site.

5) I know that no matter what comes in the future, I have a whole family here that I can count on to help me through.

Hugs.

Karen

jayhawkmom Enthusiast

I am still very new to this group and the Celiac Lifestyle.

When my daughter's pediatrician first said the words "Celiac Testing" to me, I started doing research. We'd been dealing with months of "D" - months of stomach pains, waking in the middle of the night, not eating, vomitting...etc.

The first blood tests came back "negative" as far as the doctor who ordered them was concernerd. (NOT our wonderful pediatrician) But, thanks to the folks here, I learned that I could not take someone on the phone saying "Negative" as proof positive that she didn't have Celiac Disease. You all helped me find my backbone and to question the results.

I did just that, and learned that her results weren't NEGATIVE at ALL! But, the allergist didn't know how to read them. We took them to a GI who decided that it was important to scope her to see if there was anything else going on. That's when we found the ulcers in her duodenum. And, that's when "treatment" aside from the gluten-free diet began.

She's been gluten free since the day of her endoscopy(in June) and has gained 3 lbs and grown almost 2 inches!!! She's being treated for the ulcers, and she's a MUCH MUCH MUCH happier child. Pain is a thing of her past, unless accidentally glutened. I hate to admit, that's happened a few times due to MY inadequate detective work. But, I'm getting better!!!

I had no idea that a "normal" person would/could question a doctor's diagnosis! You guys pushed me to do just that. And, because of it... my daughter is a much healthier little person!!!!!

ANd, I greatly thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

myserenityprayer Explorer

Just when I thought I was losing my mind, this forum has helped save my sanity. Everyone here has been and continues to be so supportive, whether I cave in and get fries from McDonald's or not! Carla has given me the most useful advice and is always quick to respond to my anxiety ridden questions. I have learned alot from Ursula especially about soy products. It so comforting knowing there are so many others out there feeling the same way I do. I like reading about the success stories and how going gluten free has drastically improved the health of many on this site. If it wasn't for this forum I would still be eating soy soy and more soy. Not to mention cheese!!! I have learned about other intertolerances to keep my eyes out for and have learned of the importance of cleaning out your house for unknown traces of gluten in things like beauty products and toaster ovens. I am working on feeling comfortable offering my own advice when others post. I feel so knew at all of this and wouldn't want to give the wrong advice. But I guess thats what this forum is for. We know that there is not nearly enough info out there on celiac disease and gluten intolerances. Heck, I feel like I know more than my nutrionist or doctors, thanks to this forum and the research I been doing on my own. We all must continue to support each other and learn as much as we can on gluten issues. I have also learned that I am not the only one suffering from serious brain fog and I am still fathomed by the connections to other autoimmune diseases like the ones I have. This forum has seriously changed my life. Thank you so much to everyone!!

ravenwoodglass Mentor

Misdiagnosis and false negatives on celiac testing had left me disabled and very isolated. This forum has helped me to feel like I have a bit more of a life. That maybe my experience and recovery served some sort of purpose, if I could recover as much as I have from so much that I was handed pills for and told 'learn to live with the pain' perhaps others could also. I am most thanksful for the info on CC and on personal products. My hair would have never stopped falling out if I had continued using the stuff I was using. Although it was hard to go through my cabinets and throw out lots of money spent on stuff it was so worth it. But I think the most valuable thing I have gotten here is not feeling so alone, I still get lonely at times and wish I had freinds to talk to or do something with but then I come on here and realize that many are also in my shoes and it helps a great deal.

IrishKelly Contributor

First off, I don't sit a stage of panic anymore because i've now realized other people truly have these same issues...i'm not just crazy!!

Second, i've learned through this board about my dairy problem...which i would still have now if it wasn't for all of you out there!

Lastly, besides tons of support i've gotten alot of great recipes :D


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



Celiac.com Sponsor (A8-M):



Turtle Enthusiast

Wow...this is one of those questions we could sit around and talk about for hours b/c the list is so long for how this forum has been so helpful to each of us. I don't even know where to start....but i'll try:

First and foremost I would have to say that there are some WONDERFUL people on this forum. It's such a pleasure to come to this forum and to be able to talk with someone else who TRULY understands celiac and all that one can go through with this disease. It is so great to come to a place where people are "johnny on the spot" to your questions, concerns or if you just need some support. Everyone is so helpful and giving. I have made some great friends thanks to this site and for that alone I will be forever grateful! Thank you to everyone who shares their knowledge, their insight, their courage, gluten-free products you've found, recipes, etc. EVERYTHING is sooooo helpful!!!

The top 10 things I can think of off the top of my head in trying to answer this question:

1. Where else can you go and talk about diarreah, gas, bloating??? :lol:

2. Where else can you go and admit to everyone and their brother that you were a moron for glutening yourself?

3. Where else can you go when you've been in your kitchen for a really long time trying to cook something and you need HELP!!!! And fast!!!???

4. Where else can you go and talk about gaining weight including all the details about fat rolls, having to buy bigger sized underwear, having to buy maternity pants b/c you're so bloated you can't fit into anything else, etc.???

5. Where else can you go and ask for help in trying to find the hidden gluten?? You know it's somewhere.

(Thank you GreenFingeredGaelic for helping me to see the hidden gluten in my wood cutting boards, DUH)

6. Where else can you go to find such awesome unending support????

7. Laughter, Laughter and more laughter!! (I think even GFP has even laughed a time or two) :P

8. Links to gluten-free products

9. Safe food lists

10. Patti for being my personal hygiene product consultant, especially with regards to our unruly hair & sharing ideas on which products are safe that can tackle our manes! Oh...and of course, Nini & the newbie packet she put together!!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.