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Changing Lives


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18 replies to this topic

#1 T.H.

 
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Posted 01 February 2011 - 10:10 PM

It's been frustrating with what seems like a sudden influx of articles about how the gluten free diet is just a fad, bad for you, etc... I thought it might be nice to share how we've helped people by spreading the information that we've learned from each other within the celiac community. :)

So, I'll start.

I have a little chatty Live Journal blog that is not related to Celiac Disease at all, but after I was diagnosed, I shared my story. Then I shared some common symptoms and encouraged anyone reading to go look into this if they found themselves with similar issues. In five months, I've had six people who ended up having gluten issues who got tested because of reading my post on the subject. One woman's health had been deteriorating for 30 years and she and the doctors had given up and assumed she would simply die young. Another tested negative for celiac disease, but after we had a brief discussion of possible false negatives or simply having gluten issues that weren't celiac disease, she tried the diet and all her symptoms resolved.



When I'm feeling kind of down about all the people out there who have this condition and are getting no help, it's really buoyed my spirits to remember that talking about this and sharing our stories really CAN make a difference in someone's life. It's one person at a time, but it's still making a difference.

So, whose life have you changed by talking about celiac disease or gluten intolerance?
  • 2

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#2 bridgetm

 
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Posted 02 February 2011 - 08:18 AM

My talking about gluten-intolerance hasn't helped others with potential gluten problems, as far as I know, but I have gotten quite a few comments about lifestyle changes in general.

My sister was the first. She'd been considering becoming vegetarian for years and had tried it for a few weeks at a time. When I got rid of gluten and told her I was feeling better she went all in. I have been gluten-free and she meat-free since April of 2010. She does most of her shopping at co-ops or Trader Joe's and has also been reading labels almost as carefully as I do; if an ingredient doesn't have to be there, she doesn't buy the product.

Some of my friends who have been trying to eat healthier for years, but not quite succeeding, are also trying harder. I often hear "Wow, if you can give up eating all that stuff, I can certainly skip dessert occasionally or stop buying processed food whenever it's on sale." College life is a big barrier to a healthy lifestyle, but once I assure them that I do in fact still eat food, they see that changes can be easily made.
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#3 Fire Fairy

 
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Posted 02 February 2011 - 08:23 AM

I've got my mom eating gluten free and one of my aunts is going to try it. Mom is feeling much better now. She had been to the hospital twice in six months for gastro-intestinal issues not to mention she's been having symptoms of celiac disease since at least 1975. I'm pretty sure that her side of the family tree is filled with celiacs.

PS after my diagnoses I discovered my cats could benefit from a grain free diet so technically that's another three lives changed. ;)
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If you over-salt a dish while you are cooking, that's too bad. Please recite with me the real woman's motto: 'I made it, you will eat it and I don't care how bad it tastes!'-unknown

#4 Cypressmyst

 
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Posted 02 February 2011 - 10:57 PM

Oooh! I really like this thread. It shows the positive side of this whole gluten fiasco. :)

There are seven people in my life who are gluten free because of me. :) And that is just in the last few months. Many more folks are starting to open their eyes to this poison. :D

It is the best feeling in the world to see them getting healthy, to see smiles on their faces and brain fog beginning to clear. ^_^


My Dog and cats would make 3 more. The dog was Grain Free from the start. After switching the cats they are doing great, very little to no shedding! White teeth! :) They are all on the Raw diet.

No one can digest this stuff! It's not fit for man nor beast! :lol:
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Grain Free
Casein Free
Soy Free
Refined Sugar Free
Preservative Free
Free Range
Free Willy
Freedom's just another word for nothin' left to lose...

...dang...there goes chocolate... :bawl:

#5 eatmeat4good

 
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Posted 02 February 2011 - 11:39 PM

It's for cows!!!

I have a younger sister who has been mentally "off" and had gluten ataxia all her life. She had been getting weaker and sicker the last few years. I was too ill to have contact with anyone and lost touch with even my family.

However when I read about Celiac, I immediately thought of her. I called her after 3 years of no contact. I was literally bed-ridden. I told her my story. She told me she had been sick and wasn't able to walk to the store any more. She had been to Dr.'s who told ehr she was "depressed" but it was much more. I told her I think we have had this our whole lives. She immediately went gluten free. Two weeks later sent me a text saying "I think you cured me."

I have my son. He has been sick with asthma his whole life and muscle weakness, and gluten ataxia, we knew that stumbling gait was hereditary, but didn't know what it was. He developed depression which I attributed to my being sick all the time. He took the challenge to go gluten free for 4 days to see what happened. He got sick as a dog eating that last pizza. His affect had been muted and flat for several years.

He is 100% a different kid. Happy, energetic, smiling, and he is no longer stumbling and uncoordinated. He is thrilled that he is normal and all the asthma and bad feelings went away. He used to tell me he couldn't handle hugs...(neurological symptoms?) Now he has started hugging me. He has started jogging. His self-confidence is back. He has only been gluten free for 3 months.

A girl I work with started feeling "spacey" around Christmas time. She said, "I just can't think straight and I can't get organized like I used to." I said uh oh, that is how mine started. We talked aobut Celiac symptoms and she told me her daughter has terrible migraines and nosebleeds. She has three daughters. Two are symptomatic. They all went gluten free and now she give ME recipes. She is thrilled it seems to have gotten rid of her daughter's migraines.

So there is my list of successes from sharing my story.

The total is about 6 people 7 counting me.

I hate that I lost so many years to this disease and so are others.

Thank you for starting this post.

It horrifies me that people can only know about this by word of mouth and the Dr.'s are missing great big giant celiac symptoms.

I think pamphlets about gluten intolerance and Celiac should be in grocery stores by the gluten free section. I saw gluten free food when I was stumbling like a zombie through the store trying to buy stuff that was easy to make cause I was so damn sick. Surely I would have picked up one of those pamphlets out of curiosity. Surely other's would too. So that is my next project to get the word out. Gonna see if the store manager will let me put some flyers in the gluten-free section.

Also wish a newsletter about Celiac and gluten intolerance could go to the parents of all children who are school age. List the symptoms...let them have the information. There has gotta be a way. I'm 47 and I have been symptomatic and doctoring since 15. Surely we can save some of these kids from living our lives all over again.

My sister has 6 kids. They are always sick. Asthma, flu, diarrhea, rashes. She has been reluctant to try gluten free but finally did. For only a week. But she listens to my story of my recovery and my son's. And I hope she makes the connection soon. For their sake. I hope to add 6 more to my list soon.

Thanks TH....great question!!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#6 mushroom

 
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Posted 02 February 2011 - 11:59 PM

eatmeat4good, that is a very uplifting story. I agree, T.H., great topic and it is wonderful to hear of the differences our posters are making in other peoples' lives. Now, if I could only work on my sister a little harder....:( She is a tough nut to crack, even though she is now acknowledging her own other food intolerances and avoiding them (but never gluten), and she still runs to the bathroom after every meal :o
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#7 Roda

 
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Posted 03 February 2011 - 05:37 AM

I probably haven't changed to many lives but I do get information out there about celiac. I put my youngest son gluten free in Nov. since his last ttg test was positive. My oldest son's test are still negative, but his allergist and I feel he needs to be gluten free, so I'm still working on the husband on that one. I may even take him for a gi consult since in the past he did have so many issues. I do seem to be the "go to person" at work for anyone needing information on celiac or recipes. I work with a few people who are diagnosed or have family members that are. I have even given a few patients some information and have wrote down the tests to have done for them. I guess one of my coworkers has greatly eliminated wheat(not totally gluten free though) because of me. She says she does not eat much because it bloats her up. When I told her about doing a gluten challenge after 3-4 months for my youngest she almost cried. She feels bad for him for how it might make him feel. I have raised awarness that gluten free food is not gross. Now after 2.5 yrs my coworkers are eating my food and requesting it! Some have even started eating healthier (although not gluten free but I suspect several would benefit) so it's a start. Now if I just could get my father and brother to go gluten free that would be great. I don't think that will ever happen in my lifetime though.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#8 lynnelise

 
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Posted 03 February 2011 - 06:35 AM

I've had several people contact me for more information on symptoms and such because they are worried about someone in their lives who might benefit.

I am diligently trying to get a few members of my family to try it, but that is slow going. I'm trying not to be pushy but I really think my aunt with RA with benefit. Lately things have been getting worse for her in that she's anemic and has needed blood transfusions, her potassium is off, and her she now needs insulin shots for her diabetes. That is a work in progress.

I also have a blog where I share recipes and stuff so people can see it's really not a deprivation diet!
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#9 jenngolightly

 
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Posted 03 February 2011 - 01:17 PM

I don't know if this counts because it's not my "story" that's changed lives, but rather my lifestyle.

We often have food-based events at work that are either catered or someone goes and buys food for the meeting, lecture, or conference. Before I was diagnosed, the food was typical for these kinds of work-events that many businesses hold: bagels, cookies, coffee, soda, pastries, sandwiches with chips, and an occasional fruit tray.

I had only worked here for about 6 months when I got my diagnosis and at first I was really reticent to say anything about the food, but I slowly got more brave and told people that I would appreciate things that I could eat, too. Slowly, over the past 3 years, we've gotten away from donuts and caffeine and now it's just part of our work culture to serve whole foods for events and fewer processed, gluteny foods. We also offer lots of iced water now (not in bottles - we're trying to be green) instead of just coffee and soda and a few bottled waters. For luncheons, we often order salads instead of sandwiches. We always order from high-end places that have fabulous salads so no one feels like they are being served cheap rabbit-food. We haven't completely gotten rid of gluten - we still have bagels available along with fruit, yogurt, and deli trays.

We've gotten great feedback!

So it's not exactly my "story" that has changed lives, but it's definitely due to my diagnosis. I've gotten my whole office to eat better when we hold office-events, and people who come to the events have a wider selection of foods. Some of those people who come will have dietary restrictions anyway, so we're being more considerate of people in general.
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Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010

#10 notme!

 
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Posted 03 February 2011 - 09:07 PM

i couldn't count anyone, really, because they haven't admitted it yet :D but i have a strong suspicion my sister has started cooking gluten-free for her family. (four people) also my friends always seem to be eating gluten-free - very interesting....... didn't push for anything, they just see the huge change in me, physically and mentally. sister likes to post her dinner menus to facebook, (well, me too, and that is so crazy b/c i was never this hungry or enjoyed food so much!) so maybe it is all a ripple effect :)
  • 1

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#11 cassP

 
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Posted 04 February 2011 - 06:48 AM

whenever i get really frustrated and worried about my family especially my dad who i totally think has celiac, and he wont get tested.. i try to remember the few people who have listened to me and actually changed course in their life.

one of the first times this happened- i was at work- massaging my manager's neice. im an LMT, and we go over their medical history before the massage- she had written down Crohns, and infertility... and she was on Prednisone, etc. at that same time, i had just gotten tested a 2nd time for Celiac. so after the massage i asked her if she had ever heard of Celiac, she said no.... and i wrote it down, and told her to ask her doctor to check for it- i said- IF you had THIS instead of Crohns- then all you would have to do is change your diet, and if you did not have Crohns, you wouldnt have to take any steroids. about 6 weeks later, my manager came up to me at work, and told me that her neice wanted her to tell me thankyou- that she had gotten tested for Celiac- and that THAT'S what she really had!! :) i hope they were also able to get pregnant...

do u guys ever get the urge to go talk to strangers??? it's hard for me to resist the urge, i wish i could save everybody. i was in line at the pharmacy, and the guy in front of me was picking up his Synthroid- now the lay person would have looked at this guy and thought he was "mentally challenged".... but what i saw, was bad skin, neurological problems with one of his arms & one of his legs- and gait problems. right away i thought Gluten Intolerance affecting his brain, skin, and thyroid... but i didnt say anything... makes me sad how nobody knows about this disease in America
  • 1
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#12 Roda

 
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Posted 04 February 2011 - 07:13 AM

do u guys ever get the urge to go talk to strangers??? it's hard for me to resist the urge, i wish i could save everybody. i was in line at the pharmacy, and the guy in front of me was picking up his Synthroid- now the lay person would have looked at this guy and thought he was "mentally challenged".... but what i saw, was bad skin, neurological problems with one of his arms & one of his legs- and gait problems. right away i thought Gluten Intolerance affecting his brain, skin, and thyroid... but i didnt say anything... makes me sad how nobody knows about this disease in America

Yes, I find it hard not to talk to people about it especially at work (I'm an X-ray/CT technologist) and see patients who are very sick and have histories that definately would indicate testing for celiac. It makes me sad to think about this because so many of the health care professionals I work with know very little about it. I have on occasion when I am going over relevant history for exams have asked questions that lead to me asking if they were ever tested for celiac. It usually sparks a conversation and I have had several patients ask me to write things down for them. Everyone in the ER and on the nursing floors know that they can come to me if they have a celiac patient and needs help or someone to talk to. I did this recently.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#13 Dixiebell

 
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Posted 04 February 2011 - 07:24 AM

I wish I could say that I have helped someone. I am still working on my g-mother, aunt and mom. I don't bring it up as often anymore but I do post things on FB about celiac symptoms and testing. My aunt always 'Like's' things I post. She has/had Grave's so I have really woried about her. My g-mother has lost a lot of weight in the past year and a half and has been talking about getting a colonoscopy and endo and lots of bloodwork. So I guess it is a start. My mom, oh boy! I don't know if she will ever come around. I pray that she will. She has been so depressed for several years, has bathroom issues, gained a lot of weight, she says is because of the anti-depressants.
I have also met some parents and children in scouts that could possibly benefit from gluten-free also. Many of them have ADD/ADHD. Before my son joined I don't think many of them had even heard of gluten-free.
  • 0
Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#14 srall

 
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Posted 04 February 2011 - 02:00 PM

I have one girlfriend who was having a lot of the same problems I'd been having for years. When I went gluten free she had testing done and sure enough is not supposed to be eating gluten. I don't really think this is entirely because of me. She was on a journey to feeling healthier and she would have gotten there eventually.

The best story is that because I had problems for so long and finally went gluten free last spring, when my daughter started having the same problems a few months later, well, when I finally woke up and realized she'd been having the same problem for a few years :-( , I had done all the legwork and learned about safe foods, reading labels, practicing elimination diets and observing responses. Well, the short story is that when I pulled her off gluten/dairy/corn in the fall her journey was much less bumpy than mine had been.

And my mom went gluten free a few months before me because she's allergic and intolerant, but I've done so much more research that I have been able to give her a lot of helpful advice, IMHO.


It's really hard when I see people I don't know very well having fertility issues and I want to say something, but I'm afraid I'll sound like a crackpot so I keep my mouth shut.
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#15 Cypressmyst

 
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Posted 04 February 2011 - 11:51 PM

I go ahead and tell most folks if I see a connection. They all have one symptom or another. Let them think I'm a crackpot I really don't care, but my conscious is clear then. And maybe the next time they hear it it won't be as "new" anymore and they will listen.
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Grain Free
Casein Free
Soy Free
Refined Sugar Free
Preservative Free
Free Range
Free Willy
Freedom's just another word for nothin' left to lose...

...dang...there goes chocolate... :bawl:




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