Changing Lives

[T.H.]

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?

[bridgetm]

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.

[Fire Fairy]

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.

[Cypressmyst]

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.

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!

[eatmeat4good]

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!!

[mushroom]

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

[Roda]

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.

[lynnelise]

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!

[jenngolightly]

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.

[notme]

i couldn't count anyone, really, because they haven't admitted it yet 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

[cassP]

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

[Roda]

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.

[Dixiebell]

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.

[srall]

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.

[Cypressmyst]

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.

[tehjrow]

Here's my story

[AzizaRivers]

My best friend was the reason I started thinking about celiac in the first place. She was diagnosed about 4 years ago, and my symptoms started to develop about a year after we met. Since they so closely matched what she told me were her issues, I decided to check it out.

And post-gluten-free for me...my mom decided to take my dog off gluten to see if it would resolve his problem with hot spots (itchy spots on the skin that he licks and bites until it turns red and raw and all the hair falls out) and low and behold...it did the trick. Now he stays on the special food and shares my gluten-free pretzels as his treats, haha.

[Monklady123]

I have one to add to this thread.

I have a friend who has narcolepsy. She also has had IBS for awhile, but I didn't realize that since I've only known her for a few years. I do remember she'd mention the IBS from time to time, once saying that she couldn't eat fruit because of it.

But recently she had been having pretty bad stomach pains, and had to rush to the bathroom after eating. The doctor said this and that, nothing really helpful. He told her to give up dairy, but she was able to eat cheese. Not yogurt, although she had been eating yogurt up to fairly recently. So that seemed odd.

Then one day I was browsing around the gluten free forums and discovered people who were saying there was often a link between narcolepsy and celiac. Suddenly a light bulb went off in my brain and I asked my friend if she would consider trying a gluten free diet. I did tell her that if she suspected it and wanted the endoscopy she shouldn't go gluten free until she talked to the doctor.

She went on the gluten free diet and in two days she was a different person! I could tell just by talking to her on the phone. She was chipper, and awake. She said the pains had gone completely. She didn't have that can't-keep-my-eyes open fatigue right after eating. No more rushing to the bathroom.

So there's my success story. lol... Oh, and the yogurt -- she had recently started eating yogurt with added fiber. Yep, gluten. She switched back to regular yogurt and no problems.

[Cypressmyst]

After a year of being gluten free more and more people around me are aware of how they feel after eating gluten and are transitioning to gluten-free. Some people need time before it can sink in, or need to hear it from multiple places to start really listening.

At the end of the day though all that matters is that they woke up. I am more and more convinced that everyone should be gluten-free. It would solve the Healthcare crisis for sure.