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Never Let Anyone Tell You This Isn't Serious

bonnie blue

By bonnie blue
in Coping with Celiac Disease

Recommended Posts

T.H. Community Regular
T.H.
Posted

Oh so glad to hear you caught it early.

Kick that cancer's butt, hon. Stomp it flat.

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lucky28 Explorer
lucky28
Posted

Glad to hear it's only in early stages! Glad to hear your dr wants u to get a port (it makes the chemo easier~saves your veins!) Kick that adenoma to the curb! Keep us updated~

yorkieluv Newbie
yorkieluv
Posted

I am so sorry about your diagnosis but so glad it's in the early stages. Hang in there with your treatment and keep us updated.

Di2011 Enthusiast
Di2011
Posted

My Nan's name was Bonnie :) I wish you well and lots of "good" Bonnie.

"The name Bonnie has two meanings:

1. It is derived from the Scottish word "bonnie" meaning "pretty, attractive". The Scottish word is derived from French "bon, bonne" meaning "good".

India Contributor
India
Posted

I've been thinking about you a lot since I read your post and I'm so glad that you've had such positive news. Good luck to you xx

Reba32 Rookie
Reba32
Posted

wow Bonnie, it sounds like a rough road ahead! I had no idea they could build a stomach out of intestines :unsure:

Best healing thoughts and prayers to you, and wishes for a speedy recovery. {{{hugs}}}

and if I were you, I'd think about suing the doctors that told you it's all in your head. Had they taken you seriously, it's possible there would have been less damage and you may not have had to have your entire stomach removed. :blink: At the very least, send them a copy of your dx, and tell them to be more diligent in future so the same doesn't happen to someone else :(

cougie23 Explorer
cougie23
Posted

Wonderful news that it's in the early stages and there is treatment for you. You advocated for yourself and got answers quickly.

You can beat this. Cancer is treatable these days.

Do everything you can to support yourself nutritionally too. I started juicing lots of green veggies and then adding apples, carrots and oranges to flavor it up. It is helping me a lot.

Hang in there and keep posting when you need us.

Just a reminder- Juice your greens yourself...the greendrinks in the stores(even the healthy ones) have gluten in them...their one of the few health drinks that do!

Hang in there! :D(naked juice, green machine,,ect.,ect.)

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      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
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      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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