Loey

Homegrown for the past ten years

 

Stay safe Boston!  We all know how strong you are.  Our family stands with you.

 

For me....Oklahoma, Columbine, 911 combined to make me very fearful for about two years while my children were quite young...fearful of the world we were leaving my babies -- those babies are now 18 and 19 years old -- they have grown in the shadow of these events and I am proud to say are strong, brave young men.

 

I am no longer fearful of what is happening in this world -- I am a member of my local CERT team and suggest to everyone I meet.....prepare.

 

Do not be fearful -- be prepared and remain watchful -- if you see something "fishy" wherever you live in this "new" world report it to your local police -- NON-emergency.  Millions of eyes can see far more than any homeland security group.

 

Busy day...off to move my Mom into her new home...

 

Happy Friday Everyone

 

Truer words were never spoken!!!  "SEE SOMETHING - SAY SOMETHING!!!!  My son is 21 and wants to join the FBI. Hopefully the next generation will accomplish what we have only been able to start.

I have a few updates on my cancer.  I'm having 2 wide excision done Friday on 2 dysplatic Nevis.  Then next Tuesday I have scans done, chest, gut and pelvis.  My chest scan in December showed a 4mm Spot in my lung.  This is one that scares me.  I've also been having neurological issues that seem to be getting worse.  My brain is selecting some kind of word for me in a sentence, that doesn't make sense.  Forgetting info five seconds after I've been told.  My beautiful handwriting is suffering.  I been mispelling simple words.  and I am having balance issues. I gonna ask for a head ct scan too.  My depression has been very heavy. My anxiety is as high as I've ever experienced and I am totally fatigued and couch bound.   The waiting for these procedures on Friday and then the scans on Tuesday is debilitating me and my appetite is especially very low.

 

Please keep me in your thought if you can. I truly appreciate it

 

Thank you

 

Colleen

 

I'm sorry I haven't responded on the site sooner. I've been offline and following on my Kindle (which doesn't seem to let me reply to email or on the forum). You have been in my thoughts and prayers since your first post and continue to be. You're on my list of heroes and heroines. Please know we're all pulling for you!

 

Sending positive energy, healing (((hugs))) and love,   

Loey

I will say extra prayers that day (I pray for you daily) that whatever the next step is will be the safest  and most medically sound option. Please know you are not alone and that this forum is a pretty amazing family. I don't know what I'd do without all the wonderful folks here giving love, info and constant support.

 

Sending lots of positive energy, healing (((hugs))) & love,

Loey

That's really sweet, Loey

 

Second day in a row I wake up with eyes semi-closed by an allergic reaction. WHAT on earth is causing this? The only new thing I ate these nights was coconut butter, but I am usually ok with coconut in any form? I am so, so tired of this. As soon as I think I mastered one allergy, something new comes up. This sucks big time.

 

Glad yur startng t feel better. I would still look into other types of allergies.

 

Love,

Loey

 

Thank you Loey - and I am sorry you got CC'd. My body is in alert-mode: I think what triggered the puffy eyes was a Neutrogena wash, because soon after gaining sight again I realized that my face was burnt red and sand-paper rough. It b****y hurts. To even have facial expressions. I also have a bright, boil like strip on my wrist, where I carry my watch. So, yeah, pretty much anything I use causes me a reaction.

 

On the psillie note: I am ready to baffle my baristas once again! Known in the Heights as 'the woman with the teeny-tiny travel mug' (8 ounces), I have recently got a new mug that measures 4 ounces. I feel so cool.

 

I have met other scholars interested in the problems I tackle in my dissertation. Weirdly enough, they are all in cybernetics. How on earth did THAT happen?

 

Here are some thinks between cybernetics & the Romance Period. I hope they help:

 

http://teachers.sduh...it moements.pdf

 

http://homepages.rpi...youth/youth.htm

 

http://leonardo.info...ark-zilberg.php

 

http://docs.lib.purd...iod literature"

 

http://stevenejones.org/c-v/

 

http://lucian.uchica...ds/cybernetics/

 

http://catdir.loc.go...32/98042851.pdf

 

http://theanarchistl...etic-hypothesis

 

http://www.academia....Ordinary_Things

 

Let me know if you need me to do any more research for you. It' my passion!

 

Love,

Loey

MERRY CHRISTMAS TO ALL AND TO ALL A GOOD NIGHT!!!!!!!!!!!!!!!

Love,
Loey

Thnaks guys. I live in England and there is a shop called Body Shop and most of their stuff is gluten free which is reassuring, but buying everything again in one bulk is a little daunting on the money side of things of course! I used Botanics Body Lotion, with the name you'd presume it would be okay but good old wheat protein makes an appearance... And my hand cream and most my make up and my shampoo... Sigh! I am in the early diagnosis, only been gluten free for 4-5 months now... thank you for all your loving support, its nice to 'speak' to people who actually understand!

It is quite daunting to have to replenish everything. Just try to buy a little something every week and always read labels. I'm unemployed and was just rejected for disability (seeing a lawyer tomorrow - fingers crossed) so it's really hard or me to buy large amounts of products. Especially when the gluten-free food is so expensive.

Good luck!

Loey

Preface - haven't eaten out for 8 months. I can't eat gluten, corn, dairy, or nuts. I don't eat processed foods.

I've been dreading this day for a month. We had a going-away lunch for a colleague at a local sushi place and I've been getting more and more anxious as the date approached. I even thought of calling in sick, but I really like this woman and she'd be disappointed if I didn't go.

Like many of you, I've turned down a lot of engagements that involve food because I thought I couldn't eat anything or would have to take my own food. It's easy to bring food to work-based functions, but not usually restaurants - although I've done it. I've felt really lonely and like a shut-in because everyone else goes out to dinner and I am stuck at home.

But I did it! I pulled our server aside after drinks were brought - as I always do, while people are busy reading menus and talking - and told her about all of my "allergies" (much easier to explain than "intolerance"). I asked about the duck salad and would she please asked if it had any of those things.

Out came another woman who knelt near me and we talked about the food. She said she had a wheat allergy and would personally make all of my food. We tailor made my lunch: grilled salmon with salt only, a salad with specially-made salad dressing that she would mix up for me, and sticky-rice. She wrote everything down. The regular server took everyone's order (10 people) and when she got to me she said, "You've been taken care of" and moved on. And my lunch came out with everyone else's! No one knew!

I'm definitely going back there. I felt so at ease and worry-free.

I also figured that I can go to restaurants and order fish with salt only. I can't imagine that it can be pre-marinated because it would fall apart. So fish and a green salad with vinegar or fresh lemon juice as the dressing (I eat salad with vinegar only when I need a fast dressing - sounds weird but it's pretty good when you get used to it). And fish is grilled with skin side down, so less chance of cc.

I could do this again.

You go girl!!!!!! It's so good to hear a story with a happy ending. See, we can be normal (if normal exists).

Hugs and congratulations,
Loey

I agree with keeping the house gluten free. Your little one's not going to suffer by your keeping the house gluten-free and you can possibly make her own gluten-free baby food (or check Whole Foods and see if they carry it). Your baby is going to need a healthy energetic mother more than a diet with gluten in it.

Sending positive energy!

Loey  

I know just how you feel.  I've been at this for a year in April and I am still angry.  My family is tired of me calling them "tribe Wheaterites" in an joking/antagonistic manner.  I thought it was time for me to particicipate in the support forum because I need it really bad.  Your post and the replies made me cry cry cry.....I feel like I found my tribe, "the Gluten-free-darites"  I'm so tired of being high maintenance!!!

This is part of an email I wrote to my sister on Sunday.  Sunday, I was at my lowest point so far in this journey.  She has Reumatoid Arthritis, so she understands, and we vent to each other.

By the way, I have a wheat allergy.  It's hard to find other wheat allergy peeps, am I welcome here?

To my sister on Sunday:

I am very depressed today about my wheat allergy. I got glutened all week by Splenda. It use to be a safe food, but I think they must have changed their maltodextrin supplier to one that is not in the U.S, because the bag I opened last week has been breaking me out in hives and migraines all week. I thought it was the coffee, but I eliminated splenda first, just this morning and did not break out. So, raw sugar it is for me. Maltodextrin made outside the U.S. is not safe.

Then I had to be a pain in the butt at church with communion. They have you dip the bread into a large goblet of grape juice. It did not occur to them that the rice cracker dipped in the grape juice full of wheat crumbs was a problem. But they were so nice and rinsed out the cup and put fresh juice in it for me......while 20 people waiting in line.....once again, I was a pain in the butt.

Then I went to my weight loss meeting, where they were all sampling this wheat bread. but, Jessica's fiance' made them take the bread into the kitchen to try. He's a chef and somehow knew that I would get sick from it in the air. I didn't have to say anything. That was nice...however, I was a pain in the butt.

Then we went to a neighbor's BBQ. I had to ask about every single ingredient in every dish before I found something to eat.....The host had to ask people things like "what brand of mayo did you use in the potato salad?" Did you make the Spanish rice from scratch or did you use a box mix?"

Again....I was a pain in the butt.

And I still got sick. It happened at the BBQ with all the cakes, wheat products, beer and wine in the room. I get sick from wheat in the air. I have a migraine.

I need a support group. My family is soooo sick of hearing about the wheat allergy, and I'm tired of being a pain in the butt.

I'm angry about this wheat allergy. I'm so sensitive now that I can't even be in a room with wheat without breaking out in hives.

I learned that the reason I cannot handle fragrances is because they have wheat in them. The manufacturers do not have to declare it. I saw that on "The doctors", believe it or not. They said if you have a wheat allergy and can handle certain scents (me) chances are that they are wheat free, but most have wheat ingredients and therefore make me sick!!!!


Sigh........

I hope I can be a part of your group as I am still working on coping...........

You already ARE a part f our group and we'll be here for you!!!!

Loey  

I am the worst dieter in the world.  I am absolutely crushed by having to admit that I have to change my life and my habits.  I LOVE being low maintenance.  I know that I will feel better by receiving this diagnosis (it started with Dermatitis Herpetiformis (horrible skin rash) and has led to me needing to lead a gluten-free life, so I know that I will get some relief... but I just can't imagine how this is going to work. You all seem so matter-of-fact, and I am just downright annoyed and sad.  Did anyone else just feel mad and sad and exhausted by this whole thing?

This disease sucks and you have every right to feel all of the emotions you are going through. Finding this forum was the best thing that's happened to me since my diagnosis last June. It's made up of the kindest, most generous and intelligent people gathered in one place. You can always come here to vent and know that no one will judge you. You're not alone in this. Hang in there!!! Feel free to PM me if you need to vent one-on-one.

Loey

Hi friends,
Let me start at the beginning, I was diagnosed with Celiac in September of 2010, felt pretty darn good, but then at the beginning of December started feeling bad again, the D was back with a vengeance, pain, dizziness, more weight loss.  I ended up in hospital after my husband came home from work and found me on the floor passed out.  I was in the hospital for three days, my blood pressure and heart rate were very low, they ran many blood tests and all they could find was that my potassium was low.  So they decided another endoscopy and to add to the fun a colonoscopy.  The good news is that they did find I am responding to the gluten-free diet, however I still have the D, pain, exhaustion, dizziness, and horrible depression.  The doctor did call today and they want me to see an endocrinologist, you see my Grandmother died from Addison's diseases, and there is a concern for this.  I must admit I am a little concerned and just need someone to tell me it will be ok.  Please understand I have an amazing family and a strong support system, but sometimes you just want to talk to someone who is going through the same thing you are.  

I used to see an endocrinologist for problems in my family history so please know that you don't automatically have that ailment. Also know that you are not alone. I'm fairly new to this forum and don't know what I would do without it. They are the most supportive, knowledgeable and caring people I've ever met. I was only diagnosed last June and then moved to a new state the next day. I still have D and severe pain but being able to connect with all of the wonderful people here has given me the strength and belief that we'll all get through this. If you need to vent or want to just let go one on one with someone please feel free to PM me. As I mentioned I'm not the most experienced person here but I'm an avid researcher and would be happy to look up Addison's tomorrow if you'd like. I just wanted you to know you're not alone.

Sending positive energy and healing hugs,
Loey

My understanding of Celiac is that the damage to the gut wall means that proteins from other foods and other ? can pass into the body and be seen as invading pathogens. Usually foods are broken down and absorbed before they pass through the gut wall, and so do not appear as invaders by the immune system. This adds stress to all the systems, alows opportunistic things like candida to take hold, and also means that the body does not get enough nutrients required for a healthy immune system. The organs get stressed, like the liver whose role is to break down the toxins. The net result is that there is a tendency to get a systemic breakdown, our immune systems are less effective, so we are more susceptible to illness, and gluten appears to be a fundamental culprit behind this. Other food intolerances like lactose, soy etc often appear to be made better by fixing gluten issues. I also suffer from allergies to dust mite and cold water urticaria (hives), and it appears these are linked to the damage caused by gluten. Unravelling the cause and effect chain is not easy but it seems like a very sure bet if you can succesfully get gluten out of your diet, over time (6 months to 5 years), overall health should improve. As you get older the longer it takes to recover. It is critical to be disciplined with gluten and other foods for at least 6 months - 1 year, gluten avoidance needs to be lifelong, other foods might be tolerated after time. I have been working through this for around 3 years, and made numerous mistakes and assumptions by being over confident, ignorant or ill disciplined, yet I have have had moments of excellent health that give me hope I will get on top of this. Forums like this where we exchange experiences are invaluable.

Thank you for your informative and thoughtful reply. I wasn't as strict as I should have been over the holidays (remained totally gluten-free but didn't adhere to IBS restrictions) and I'm still paying for it. I'm changing doctors and have heard excellent things about my new one. My appointment is on the 20th and I'm counting the day. I did finally get over the bug I had but think I was CC'd at the New Year's party I attended. in the future I'll bring a ziplock bag of food. it was the first time we met everyone in our neighborhood (we just moved to a new city and state in June) so I was concerned about looking batty. When it comes to health I don't think it should matter and I learned my lesson.

Wishing all of you a healthy and happy New Year,
Loey

P.S. my old GI in NJ thought that my Celiac had gone undiagnosed for decades.

Our local NPR station does an end of the year program wherein they ask listeners to submit a synopsis of their year, written in haiku, basically 5, 7, and 5 syllables.

It's fun on the radio, so I thought I'd see if anyone here is feeling creative.  I'll offer mine (and I think you can do more than one, if your year's been very complex).

Classes from Hades
New man waiting in the wings
Next year looks awesome

OK, I'll give it a try:

Moved to a new state

Diagnosed with Celiac

Found Awesome Forum

P.S. I was exercising before I got sick. Right now I find that even walking too much throws me off. I also had bouts of Ataxia. I've been a mess. But I'm an optimistic mess!!!  

Loey  

Just thought I'd add that I used mebeverine for a couple of years, it worked amazingly well in stopping the horrible spasming I used to get throughout the digestive tract. Happily I haven't needed it for months since I have been on an elimination diet, but it was the one thing that really helped. There were days I was in so much pain for days that I was close to going to hospital, and once I had that medication I never had sustained pain that bad again. My magic combination was to take buscopan (hyoscine butylbromide)to fix stomach pain and gassiness and mebeverine for the spasming and lower pain. Hope it helps, and your stupid dr should have no issues prescribing that to you as it is an antispasmodic, not a pain drug.

Thanks so much. I'm not going to my stupid GI anymore. I have an appointment with a new GI on January 20th. He's supposed to be very good and will spend an hour or more with a patient if they need it. They also do al of the testing right there (they have a unit for it). If I mention this medication to him my husband's colleague said he'll be willing to try anything. Now I just have to get through the last of my UI and pray I can get disability. I'm in no shape to teach - especially special ed. I want to get back in the classroom more than I can say.

Wishing a happy and healthy holidays to you and your family
Loey