Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

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

gfp

Urgent - Any Friends Pls Help

Recommended Posts

Hugs, Steve...we're all here for you and will do what we can to help you through this. Sorry none of us can be there physically with you, but know we are there in spirit. You've gotten some good advice from your friends here--keep us posted on what's happening--we're all thinking about you.

CL


Dx'd with lymphocytic colitis 1/07

Dx'd by Enterolab 3/07--+IgA, +Ttg, DQ2 and DQ8

Dx'd celiac by Dr. Lewey 4/07--without +blood or biopsy

gluten-free 3/7/07

Share this post


Link to post
Share on other sites

Steve, I haven't been on the computer today, just found this thread, and I am pretty upset about what's happening to you. I am afraid that your mother did do it on purpose, to prove to you that you're wrong about the 200 ppm not being safe for you. However, since you say it has bad effects on her as well, she may not be rational anyway, and as somebody said, acting like she is stupid. Being your mother, she can't be stupid for real. But the gluten is making her that way.

It is a shame that in the UK the coeliac society and doctors will declare that all celiacs are safe consuming the 200ppm stuff.

Please just rest, drink lots of water and don't make any plans right now to do anything (other than calling your aunt, so she can let your mother know you are safe).

Once you're rational again, it might be best if you write your mother a letter to explain what happened. Let your girlfriend read it before you send it, to make sure it doesn't sound angry and hostile. Tell her why you will never feel safe in her house again, because you can't be sure she won't knowingly feed you things that you told her will make you ill. Make sure you also tell her that you love her, and will see her when in England, but on your terms. And that you won't be able to stay with her again.

Don't bother talking to your brother, he apparently isn't even trying to understand how you feel. I know what you mean about the books not being in alphabetical order really bothering you. My autistic tendencies are much stronger when glutened, and that one could happen to me as well (except with me, the books would have to be arranged by size and subject :rolleyes: ).

I really hope you'll be okay. Please keep us updated.

{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

Steve:

I have been thinking about you all day. I hope that you are feeling better.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

Share this post


Link to post
Share on other sites
Steve:

I have been thinking about you all day. I hope that you are feeling better.

Yea--me too.

I hope you got some rest and "alone" time. When you can, let us know how you are :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites

:blink::unsure: Why does gluten cause such anger? I relate totally and find I need to "hide" until the rage and symptoms pass. Is there a mediacal reason for the anger?

So sorry for your troubles. I whispered a little prayer for you and all of us...


Rheumatic fever at age 5 and again at age 6. Antibiotics for 6 years to prevent strep throat.

Anemia, Mono, Hepititis, Pernicious Anemia, Enlarged Heart, Osteopenia, Vitamin D deficiency, Ataxia, Digestive issues, reactive hypoglycemia, and on and on and on!

Following the SCD diet after gluten free didn't solve symptoms. Much better and getting back my life!

Share this post


Link to post
Share on other sites
:blink::unsure: Why does gluten cause such anger? I relate totally and find I need to "hide" until the rage and symptoms pass. Is there a mediacal reason for the anger?

So sorry for your troubles. I whispered a little prayer for you and all of us...

Chatycady, for many of us gluten has a neurotoxic effect. The action of the body trying to protect itself from a toxin that is coursing through the bloodstream can create reactions in any system. In addition there are chemicals in the brain that can be thrown out of wack by gluten. I believe it has something to do with neuroreceptors and transmitters causing either a blocking action or the opposite excess electrical impulses. In some of us gluten can even cause seizue activity. I personally think gluten intolerance is behind a lot of the depressive disorders and it also has a strong link for many to autistic syndromes. If you do a search here on 'Neurological effects of gluten' you should be able to find some links to some medical journal articles.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Steve, I hope you are doing a bit better. As many others are I am concerned and hope you have been able to find a place for peace. Hope to hear from you soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

just came on to ck on you steve.

hope your doing better.

think i'ts the middle of the nite where you are.

let us know ok

judy


Judy in Southern CA

Share this post


Link to post
Share on other sites

Just wanted to check on you too. I hope you're able to get some sleep.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

Share this post


Link to post
Share on other sites

I know it's probably around 4 a.m. in the UK and hopefully you are having a wonderful deep sleep and tomorrow will be a brand new day for you.....

Please post when you get the chance to let us know how you are doing......

When I was thinking about you today, I thought that the "neurological" glutening of the brain would probably affect you 10 times more than it would affect me. If our brains were musical instruments, I would be a fiddle and you woulld be a finely tuned Stratovarius! LOL! :lol: A brilliant mind like yours would probably be much more susceptible to toxic gluten than mine would! Considering when I get glutened, I change instantaniously from my normal self into "The Incredible Hulk" with an explosive temper, I can't imagine what it must feel like for you......

Thinking of you and sending hugs.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites

Steve,

I don't know you,but I can tell from the enormous response from these wonderful, caring forum members that you are a special man. Once again, I am absolutely amazed by the level of compassionate concern here! I ,too, hope you are finding sleep at this moment. I find that sleep will be your best friend until this glutening is over. If you are not sleeping, would you seek a druggist over there and ask for recommendations? Maybe you can find someone who will understand you have zero tolerance for gluten. I am sending you positive vibes across the big pond!!!

Ann


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

Share this post


Link to post
Share on other sites

Steve,

Eventhough we have had our scraps, I am very upset that you are suffering so much. It's really not fair that you have had to go through a situation like this. Especially since you are the "careful one" when it comes to gluten. I think everyone has given you some of the best advice. Stay clam and wait for your girlfriend to come to your rescue. I hope that you are feeling much better today. Hopefully, this will be over soon. Take care off yourself.

Vicki :)

Share this post


Link to post
Share on other sites

Steve,

I hope you are doing ok. Hope your girlfriend has gotten in to town.

Update us when you can.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

Steve, I hope today is a better day for you and that your symptoms have decreased. Please let us know how you are doing. As you already know - we all care.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

Share this post


Link to post
Share on other sites

STEVE hasn't posted has he?.

hey, buddy where are you???

hope your girl friend is there with you now.

hugs

judy


Judy in Southern CA

Share this post


Link to post
Share on other sites
nope, he hasn't posted.....wish he would let us know what's up....... :huh:

Hopefully, the day was taken up by making arrangements to pick up his girlfriend at the airport and her getting his stuff from his mom's, he just didn't have the time to get to the library to post anything.....

Hope we hear soon though......

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites
Guest AutumnE

Im so sorry your going through this, I hope you are recuperating now and feeling better. I feel so bad for you being away from home and having to be out when your dealing with it. I know no words to help as my mom did something like this to me on purpose, she thought I was being paranoid about cross contamination till I had a full blown seizure at her house from it. I have forgiven her but Im not sure I can forget it. I felt betrayed so badly.

Take Care

Autumn

Share this post


Link to post
Share on other sites

Just checking to see if you posted. I'm sure you're in the middle of the chaos that always accompanies a family wedding. I hope you're feeling better.

:(

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

Share this post


Link to post
Share on other sites

Just a hug!


Erica

Inconclusive blood test results

Positive Enterolab results

Positive dietary results

gluten-free since 2/10/06

Share this post


Link to post
Share on other sites

Hi Ravenwoodglass,

I have read most of your posts, and was so very interested in what you had to say about celiac disease! I started a gluten-free diet only a month ago, after reading Dr. Graham


From the book:

Share this post


Link to post
Share on other sites

Has anyone heard from Steve yet?

Share this post


Link to post
Share on other sites