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

Saying Hello And Thank You!


Abbygail

Recommended Posts

Abbygail Newbie

Hello to everyone! Finally figured out how to become an unanonymous user. :blink:

I can't tell you how much finding this forum and all your wonderful information and advice has changed my life for the better.

It has been a difficult year or so for me, trying to figure things out, but a ghastly encounter with a stack of pancakes on Pancake Day in February finally clued me in and made me sicker than I had ever been. When I thought that maybe wheat was causing my problem, I went online to see what I could discover about it. It never occurred to me that it would be a wheat and gluten sensitivity or worse. Celiac was not in my vocabulary and it has taken months of intensively reading everything I could find to put it all together. It is so debilitating to be afraid to leave your own home for fear of what might happen. Luckily, I don't work anymore, so had an easier time than many have.

I have been gluten free since then and aside from some accidental glutenings,am beginning to feel so much better. It was a very emotional past couple of months and think that just now am accepting the situation. There was so much anger and ups and downs emotionally, who would think that food could cause so many different emotions. I'm really glad that my husband is a patient person and has been so supportive - my miserable behaviour would have driven less hearty souls running for the hills. :o

My only proof of this is my response to diet. Too much time has gone by gluten free to have the tests done and I can't go back to eating gluten to find out - it would be impossible to go through all that again, at least for me it would. Through all the reading I have done on this forum and seeing the stories of others and your wonderful acceptance, I felt encouraged to post and let you know how appreciative I am and how much your information and the support you offer has helped. It does feel very lonely sometimes.

Hopefully I can provide some encouragement to others to hang in there and take all the love and concern and valuable information offered here. This is going to be a long journey, but we don't have to do it alone. Thank you again. :wub:

Gail


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

:) I'm glad you feel well.

Welcome to nonymity (what else could be the opposite of anonymity?)

Fiddle-Faddle Community Regular

Welcome, Gail!

I'm more or less self-diagnosed, too --my Dr. claimed that a sky-high IgG did not indicate celiac or a problem with gluten(??!!??!!) , so we're pretty much in the same boat!

Nantzie Collaborator

Welcome to the board. I'm glad this has been so helpful to you.

I think that the "gold standard" for diagnosis should be the doctor telling an already gluten-free patient to eat gluten for testing - If the patient bursts into tears, threatens the doctor with bodily harm, screams "You can't make me!", or turns green, it should be a positive diagnosis of celiac. :lol:

Opposite of anonymous - Anti-anonymous? Nonanonymous? :D

Nancy

Lisa Mentor

Gail:

I am so glad for you that things have turned around for you. Every day is see 100 - 175 people lurking, reading and learning. There are so many educated, informed and giving people here, from all walks of life and varied experiences. I've been hanging around for almost two years and I am still impressed with the folks here. Glad that you have "de-lurked". :)

When I was diagnosed, I had never heard the word Celiac. I went into the panic mode, then the information mode and I found myself here. I think there are still some people here who watched me fumble around trying to figure all of this out. They know who they are and they have become very good friends.

Your experience can be helpful to those that come behind you. You sound willing to share and that's a good thing. Welcome to the Club. :)

Another "de-lurker"....yeah!

ravenwoodglass Mentor
Welcome to the board. I'm glad this has been so helpful to you.

I think that the "gold standard" for diagnosis should be the doctor telling an already gluten-free patient to eat gluten for testing - If the patient bursts into tears, threatens the doctor with bodily harm, screams "You can't make me!", or turns green, it should be a positive diagnosis of celiac. :lol:

Opposite of anonymous - Anti-anonymous? Nonanonymous? :D

Nancy

:lol::lol::lol: I like your 'Gold Standard.

I think if we follow the 'rules' ? onymous ? would be the opposite since the an means not or against. I think it has a nice flow to it anyway but sounds like a disease.

Almost forgot to add welcome Gail. Sorry I was just laughing too hard.

Nantzie Collaborator
I think if we follow the 'rules' ? onymous ? would be the opposite since the an means not or against. I think it has a nice flow to it anyway but sounds like a disease.

Yay! Something to research! I looked it up -

From Late Latin annymus, from Greek annumos, nameless : an-, without ; see a- 1 + onuma, name (influenced by earlier nnumnos, nameless); see n-men- in Indo-European roots.

So onymous would mean - with name.

Yep - I'm lettin' my nerd flag fly.

:lol:

Nancy


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



Celiac.com Sponsor (A8-M):



UNCHeel Rookie

Amen Sister!!!!

ravenwoodglass Mentor
Yay! Something to research! I looked it up -

From Late Latin annymus, from Greek annumos, nameless : an-, without ; see a- 1 + onuma, name (influenced by earlier nnumnos, nameless); see n-men- in Indo-European roots.

So onymous would mean - with name.

Yep - I'm lettin' my nerd flag fly.

:lol:

Nancy

Hmmm, more than a little scary that I knew that off the top of my head. I guess med terminology and all those root words are still lurking in my addled brain..... Somewhere deep down inside.....now if I could only remember what day it is..... :D

lcbannon Apprentice

I too am self diagnosed to date- waiting for Enterolab results but can tell improvement with diet.

Welcome.

Abbygail Newbie

Thank you, though, a million times!!!!!

I am so happy to be able to post here.

There have been many times lately that I wanted to, but I was not sure that it would be appropriate till I read the posts a few back when there is someone like me who said that they were Celiac and that is all they need to say, that they cannot tolerate gluten and that is all they need to know is how sick they get and that it is their body and no one else lives there.

I totally agree.

I was diagnosed a few years ago as IBS, as was my daughter.

As an add-on, I was told that I may be also lactose intolerant. They gave me a prescription for antibiotics and told that when it got really bad that I could ask my doc for some antibioics which would help??? :blink:

Even though I love my doc and he has been my doc for a very long time, I have to wonder about this. He really is so good about other things, but I do question this.

After the last few months, I know deep down what the problem is. There isn't any way around it.

So, how wonderful for me that you are here and hopefully I can give back to someone else.

I am a dedicated foodie and am having such a time getting adjusted.

How do you give up all the wonderful foods that you must give up in order to feel well?

I am spending a lot of time trying to adjust recipes. After so much time spent buying specialty foods that are actually horrible. So many of them are total ripoffs.

I will go to the food threads and hopefully help someone else find things that they can have and make that will not break the budget and are good too. That can be such a challenge!

I love you all!!!! :P

chocolatelover Contributor

Gail, welcome, welcome! It's so nice to have you here. This place has been a lifeline for me--I spend WAY too much time reading, posting, lurking, commenting! :lol: It's a bit addictive, I must say (guess I just don't want to miss anything!).

What kind of food are you looking for? I am a foodie too! I have some great recipes--many for gluten free breads, pastries, waffles, muffins, etc., that I got from my friend who has been doing this forever. We haven't had a bad one yet, and I'd love to share if you want any. Keep thinking that I should just post the best ones over on the baking/recipes topic, just haven't gotten around to it yet.

I also have the dairy issue, though right now I'm concentrating on the gluten (avoiding dairy as much as possible, but not being as fanatical about it like the gluten). Have to give up one vice at a time!

Abbygail Newbie
Gail, welcome, welcome! It's so nice to have you here. This place has been a lifeline for me--I spend WAY too much time reading, posting, lurking, commenting! :lol: It's a bit addictive, I must say (guess I just don't want to miss anything!).

What kind of food are you looking for? I am a foodie too! I have some great recipes--many for gluten free breads, pastries, waffles, muffins, etc., that I got from my friend who has been doing this forever. We haven't had a bad one yet, and I'd love to share if you want any. Keep thinking that I should just post the best ones over on the baking/recipes topic, just haven't gotten around to it yet.

I also have the dairy issue, though right now I'm concentrating on the gluten (avoiding dairy as much as possible, but not being as fanatical about it like the gluten). Have to give up one vice at a time!

Thank you so much for your welcome. Yes, this place certainly has been a lifeline for me too. The more I read, the more I learn and less I feel like such a misfit.

It's nice that you are a foodie too. I have noticed quite a few on here. I have always had a passion for food, cooking and probably eating way too much at times too. :lol: I felt so betrayed when food became a major problem. Really ran the gamut of emotions - it is getting better now but the lows were so low. I wanted to cry all the time. There are a lot of things I really miss like Chinese takeout. :rolleyes: dining out, and not having to make everything from scratch. I swear I spend most of my time in the kitchen these days.

It would be great if you would post some of your favorites on the baking/recipe topics. I have been tweaking a few also and some have been successes - others not so good. Takes time to learn all the proper substitutions. As soon as I have time, I will post a couple also.

I find the dairy thing does not affect me in the same way as the gluten. I can handle the dairy, but the gluten is a whole other ball game. So far, I have never completely given up the dairy either.

I will be spending the next week getting ready for a vacation in the motorhome. We will be gone for a couple of weeks so I will have to make a lot of things ahead and freeze them. The good thing about the motorhome is that it has a bathroom :lol:

Archived

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

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

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,419
    • Most Online (within 30 mins)
      7,748

    kristitullos219
    Newest Member
    kristitullos219
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.