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Saying Hello And Thank You!

Abbygail

By Abbygail
in Coping with Celiac Disease

Recommended Posts

Abbygail Newbie
Abbygail
Posted

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

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Jestgar Rising Star
Jestgar
Posted

:) I'm glad you feel well.

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

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

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
Nantzie
Posted

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
Lisa
Posted

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
ravenwoodglass
Posted
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
Nantzie
Posted
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

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UNCHeel Rookie
UNCHeel
Posted

Amen Sister!!!!

ravenwoodglass Mentor
ravenwoodglass
Posted
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
lcbannon
Posted

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

Welcome.

Abbygail Newbie
Abbygail
Posted
  • Author

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
chocolatelover
Posted

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
Abbygail
Posted
  • Author
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:

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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