To The 'senior' Celiacs

[danikali]

Hi guys,

I'd just like to know how many of you out there consider yourself 'healed' but are just on this forum to get new tips, food ideas, give advice, etc.

I know they say that everyone is different when it comes to your gut healing and being able to STAY healthy, for a while at a time, but I'd just like to read some actual experiences with this.

I've been gluten free since November (besides tiny accidents) and all I notice is that everytime I think I'm on my way, I get glutened, or develop another food intolerance.

Also, are you able to eat a more wide variety of foods than when you were first diagnosed?

Give me your stories! Please?

[danikali]

I guess nobody is healed yet? That's scary...........

[Nadtorious]

I don't know if I'm considered a senior celiac or not, but I've been dx'd for 3 years and have been unsymptomatic for almost 2 years now.

A few things I've noticed:

I am more in touch with my body now than when I was diagnosed. I don't know if I have more food intolerances now than at the time of my diagnosis, but I know that I can definetly tell when I've eaten something wrong-whether it be caused by gluten or another food I can't eat. When I was first diagnosed, I was so relieved to not be in pain and not have my stomach rule my life that I didn't notice things like soy and eggs bothering me. Now I feel even better-but my food choices are more limited. I don't eat out, and I don't eat anything processed-not even the stuff marked gluten free.

I used to get sooooo frustrated whenever I'd get glutened-I'd beat my self up and think it was my lack of responsibility for my disease that I was sick all time. Then I realized that it wasn't my falut-that I was just gaining experience as a celiac. I very rarely get glutened anymore-if I do, its usually just from trying a new food.

I like to read the posts on this site, both because sometimes I can offer up my 2 cents and hopefully help people, and as a reminder as to how far I've come. It does get better, really!

Good luck-

Nadia

[danikali]

Thank you so much! These are the kind of things I want to hear! Yeah, I would consider you a 'senior' celiac, since you've been off of gluten for at least a year and you know what to eat and not to eat.

May I ask why you got off of all processed foods? I am too, except for rice cakes and rice milk. I don't really eat out anymore either except a gluten-free resturant once in a while........but I'm still figuring out which natural foods bother me, and where all of the hidden gluten is, so that's the stuff I'm dealing with right now.

But I'm glad to hear someone who got better. I want to hear more stories so I can have hope. And I know what you mean about blaming yourself........I do it everytime a symptom comes back, and that's most days these days! For example, I'm staying away from all nuts right now because I was eating a lot of them and things were getting back to the way they were before gluten-free. Well, I was having a GREAT day yesterday, but at night I had a craving, and the only thing I could think about was some Pacific Almond Milk that I have. I love it.......to me, it's such a treat and when I want chocolate or a shake or something, I grab that. Well, of course, I'm having problems again. I woke up this morning with bad stomach cramps, HORRIBLE heart burn and a headache. Now tell me why I had ALMOND milk when I have taken NUT out of my diet! Sheesh!

Also, may I ask what other food intolerances you have?

And more stories pleasssssse!!!!

[Nadtorious]

Well, not to hog this section, but my other intolerances are egg, dairy, soy (in large doses), and some nuts, ummmmmm............ I think that's it. Every now and then I'll make a pie with an egg and some soymilk in it and just pay the consequences (usually just a little discomfort)

I cut out all processed foods during an elimination diet trial 2 years ago. I thought everything was making me sick-so I just cut out everything except fruit and fish, then just kept adding things back in one at a time, keeping track of what gave me issues. Well, everything processed, from gluten free bread to frozen dinners were making me ill. These days I make everything from scratch-even my own chapstick It's a pain sometimes, but well worth the way I feel. I race mountain bikes and coach a kids race team and need to be alert and energetic. This diet that I have now has been the only thing that keeps me at the level I need to be at.

Good luck!

Nadia

[Carriefaith]

I started feeling better after 6 months on the diet, but most of my symptoms didn't start to disappear until after 1 year on the diet. I developed an intolerance to dairy around the same time I started getting sick from celiac disease. I still cannot tolerate dairy products.

[jerseyangel]

I'm with Dani--these kinds of stories from those who have been gluten-free and dealing with this for a longer time are most interesting, and give us a better idea of what still lies ahead. Please--more Celiac success stories

[Guest CD_Surviver]

well i guess you could consider me a senior of celiac because i have been dx'd for ten years now and was some what gluten-free but i cheated a lot because i always said i wont kill me to eat a little but then sebveral years ago i found out that i could develope lymphoma and that could kill me . so i have as completely gluten-free as i can possiblly be for about two to three years now. i have come up with a lot of my own recipes if anyone is interested just let me know.

Lauren

[danikali]

Thanks Nadia. Starting today actually, I'm doing an elimination diet and I got a journal to prove it! I'm only going to have bananas, apples, applesauce and rice cakes because I am positive these things don't bother me. Now, when should I start adding other foods in? Like in a week?

Also, is there anyone else out there with a story of encourgement? Anyone else feeling good most days?

Thanks Nadia. Starting today actually, I'm doing an elimination diet and I got a journal to prove it! I'm only going to have bananas, apples, applesauce and rice cakes because I am positive these things don't bother me. Now, when should I start adding other foods in? Like in a week?

Also, is there anyone else out there with a story of encourgement? Anyone else feeling good most days?

Oooh, people are replying! Good!

So what is your story Lauren? Do you have other food intolerances? HOw did you find out? How long before all of the symptoms went away and you felt 'normal' MOST days, instead of feeling bad MOST days. I'm still really new, so I feel better a lot less than worse, unfortunatley.

[Guest CD_Surviver]

well i dont really remeber because i was only 6 when i was dx'd. but it took me several years ecause the doctors had me on metimusal which when i stopped taking thats when found out it hade gluten in it so that was a hugh factor in me feeling better.i dont know of any other intolerences yet but i think i may have a processed corn intolerence or something because i have been haveing episodes of constipation and i dont think i have had any gluten so i dont know yet . the one thing is it has been 10 years now and i am just now haveing problems again. now i feel great most days but it is just when i have something that i have those episodes.

Lauren

[Guest Viola]

I've been on a gluten free diet for 17 years. Shortly after going gluten free I found myself intollerant to almost everything including citric acid (fruits and veggies) The only thing I really got away with were eggs. So I went to Calgary to under go NAET treatments for my allergies. I was very lucky and found a doctor who's sister has Celiac and he explained that he could treat my allergies, but I would never be able to eat gluten as that is a disease not an allergy, which was fine with me.

After the treatments I found that I could add everything but gluten back into my diet. I started out with just small amounts of course, but eat normally except for gluten free.

I'm a fan of all the allowable foods including the gluten free junk foods I rarely get cross contaminated ... perhaps a little more often when travelling, but carry Imodium and Gavascon and deal with it that way. I don't let it spoil the things I like to do.

BTW .. the doctor that I saw for the allergies had a theory ... Because we were eating all kinds of things before the diagnosis and of course was getting very ill with all the glutens, the body had learned to put out anti-bodies every time we ate. What I mean is .. we were eating perhaps garlic toast with salad .. and instantly got sick .. the body couldn't decide whether it was the toast or the salad. That's a simplification, but it got so my body was simply reacting to everything I put in it, including fruit, rice, or meat. It had decided that "food" was making me ill. Don't know If I've explained this very well.

[Jenn2005]

This is a great thread. I love to hear positive stories it makes it seem like there is a light at the end of this very long tunnel. Keep them coming.

Jennifer

[danikali]

Wow that's great Shirley! You can everything except gluten now! That's so encouraging to someone like me who also seems to not be able to tolerate a lot of things!

May I ask how your allergies were treated? And were they actual, blood tested allergies, or 'food intolerances' that you had to detect through eliminating? It scares me to see how many people couldn't tolerate ANY grains for a while, even rice and potatos! I'm going to a registered dietitian in two weeks, do you think she would be able to help treat my other problem foods? By the way, did you have to take out those offending foods or did you get medicane for them?

Yeah, keep the stories coming guys! I should have started this thread a while ago!

[Guest Viola]

I had taken out all the foods before I was treated because they all made me sick.

The doctor tested for each group ... Dairy, poultry, Citric Acid etc. Then I was treated with a combination of accupuncture, accupressure and heat, and you had to stay away from everything you were being treated for (don't even touch it) for 25 hours. Like when I had treatment for the metals I had to drink distilled water and wear gloves so I didn't touch metal. Anyway ... the idea is that you are re-training your immune system to not put out antibodies when you ingest "safe foods" We made three trips to Calgary .. one a year where I had four or five things treated each trip. It does take time as you have to wait at least 25 hours between treatments.

So each trip made life easier when I got back home. I really noticed a big difference when I had the metals done as I could never wear a watch or necklace etc. I would have blisters all the way up my arm with a watch before and now I wear one with a metal band without any problems at all. It also added food back into my diet that were high in iron and zinc etc.

It's funny it worked so well, because I was so scepticle the first time I went. Getting treated for pultry also got rid of my allergy to bird feathers

The ones that didn't work were the treatment for my dust allergy and perfumes. It's just impossible short of being in a bubble to stay away from dust and perfumes for 25 hours. But even at that, it did lessen the symptoms a bit.

The treatments were very comfortable ... kinda like being in a spa

[Rachel--24]

Shirley,

I wasn't aware that NAET had been around that long...for some reason I had thought it was fairly new. Anyways, is it very expensive? Seems like it would be. That would be something I'd look into down the road if I don't improve with other methods first. Obviously it helped you but I've seen other posters say that it didnt help and that its just a bunch of hooey. I'm open-minded and will give anything a chance as long as it doesnt cost a fortune to find out if it'll work for me.

[Guest nini]

In March of this year (2006) I will have been gluten free for 3 years... In that time I have lost just about 100 pounds (been hovering between 95 and 100 pounds lost), have gotten off almost all of my prescriptions, except for one for fibromyalgia pain (instead of four different Fibro drugs), and one for blood pressure (which my Dr.s office is in the process of trying to wean me off of, I have to go in next week for a workup before they can lower my doseage)... I used to take about 20 prescriptions EVERY DAY...

Also in that time, my skin has cleared up, I very rarely get the big "D" anymore and only if I've been accidentally glutened, I write a regular collumn for the local Health Food Store's newsletter to help others living with the Gluten Free Diet, I feel more confident about eating out and shopping at a regular grocery store, My chronic sinus/nasal allergy problem has almost all but dissappeared, I can't remember the last time I had a bout of depression, and my libido has returned! LOL!

I still don't consider myself completely healed, because I still have pretty bad fibromyalgia pain, but NOTHING like the debilitating pain I used to experience, my sense of smell is overly sensitive and I find myself reacting horribly to perfumes and artificial fragrances, I don't know for sure if this is related to Celiac, or just to the years of mistreating my body and now it's still having a hard time processing... I don't know if I'm just developing other sensitivities or allergies...

Anyway, I DO feel so much better than I did before my dx. I am loving the comments on my weight loss. I was tickled at myself when I went shopping a few weeks ago and realized that I'm now fitting into a size 14 jeans... (instead of 3x baggy sweats and big t-shirts) I'd still like to lose more weight. I want to wear a size 8... that is my goal... although I will be happy with a size 10!

[Guest Viola]

Nini ... you're doing great! Good for you. I'll bet you are loving shopping for clothes too

[Guest nini]

Nini ... you're doing great! Good for you. I'll bet you are loving shopping for clothes too

Yes I am! I found a style of black jeans that fit me perfectly and were SOOOOO comfortable, so guess what? I BOUGHT SIX PAIRS OF THEM!!! LOL!!!!

[jerseyangel]

Yes I am! I found a style of black jeans that fit me perfectly and were SOOOOO comfortable, so guess what? I BOUGHT SIX PAIRS OF THEM!!! LOL!!!!

Nini--You are truly a girl after my own heart!! Seriously, your story is inspirational. Continued good health to you

[danikali]

Oh, I'm so happy for you Nini! That's great that you are not only feeling better physically, but mentally too with the weight loss!

May I ask if you had any food intolerances? And also, when would you say you really noticed that you were feeling like a 'normal' person again (aside from the fibro.).?

And what do you think made all the difference? Taking out all of the offending foods? Or just time....

More stories!!!

[darlindeb25]

When I read the title of this post, I thought you wanted to hear from the senior celiacs and I was hoping at 50, that you didnt think I was a senior yet. Here you are talking about those of us who have been gluten-free for some time! So, now I guess "I" am kind of a senior. I have been gluten-free now for 4 1/2 yrs. I was ill a good share of my life in some form or other. I have always gotten car sick, my mom used to tell me they couldnt take me anywhere without a change of clothes because I got sick in the car. My sister also was very vitamin deficient as a young child, so we have been dealing with this for a very, very long time. I seemed to get worse after my first son was born and he will be 32 in May. I went gluten-free at 46. I did feel better quite soon, but I dont feel that I have healed completely. I have other intolerances that I have developed over the last couple of years and allergies along with problems that were caused by the celiacs. Summer before last I tried the Eat Right For Your Blood Type Diet and found that I cant tolerate any processed soy, I cant have a little soy oil and lecithin, but now flours. Then Christmas 04, I found out I couldnt tolerate processed corn any longer--I made cornbread stuffing and got so sick and yes, I tried corn again, I can only eat the veggie itself, nothing processed. Then this summer I found I am now intolerant to tomatoes--I also have to stay away from anything in the cabbage family. Outside of the intolarances, I alos have periphereal neuropathy in my arms and legs, with carpal tunnel in my hands. There must be something else I havent figured out yet because I have a constant headache. BUT, I still am 75% better then I was the day before I went gluten-free. My sweetie worries that eventually my system will be intolerant to everything, I pray that isnt so. Well, that's my story and I'm sticking to it! Deb

[Guest nini]

Oh, I'm so happy for you Nini! That's great that you are not only feeling better physically, but mentally too with the weight loss!

May I ask if you had any food intolerances? And also, when would you say you really noticed that you were feeling like a 'normal' person again (aside from the fibro.).?

And what do you think made all the difference? Taking out all of the offending foods? Or just time....

More stories!!!

before my dx, I thought that I was lactose intolerant, that went away after being gluten-free... I also thought I was allergic to poultry. Turns out I was only allergic to the hormones and antibiotics in commercially raised poultry... once I discovered Organic chicken and turkey, I was turned on to a whole new world of eating! I think I may also have issues with soy, but that hasn't been confirmed yet, only a suspicion.

It hasn't always been easy that's for sure, I would say time and dilligence made all the difference. I think it was about 6 months into it when I really started noticing that I felt human. Other than the fibromyalgia, I feel really good most days.

[ianm]

I am coming up on two years mostly gluten-free, one year totally gluten-free and for the past couple of months I feel 100% healthy. I was one of the super-heavy weight celiacs. It felt so good to lose that weight.

[fritzicurls]

I feel like a senior celiac even though I have not been gluten free for extremely long - 10 months, but I feel senior because of all the changes. I feel like my symptoms before gluten-free were very intense - seizures, high blood pressure, debilitating anxiety and depression, vertigo, constant feelings of unbalance, fatigue, oh the fatigue, arthritis pain, pale skin and at times white as a sheet and felt like it, constipation up the wahzoo, etc. etc. Four days after going gluten-free the anxiety shut off like a faucet and only returned once (I was he lping clean out an old building and the mold made my throat feel thick and I could feel the anxiety return - I went outside and instantly felt better!). The depression lifted a few months later (this was no small depression - thoughts of suicide were constant. I had also been diagnosed with low blood flow to the brain and concerns about dementia looming - my mom died with dementia so I was terrified. However, I have since read two of the articles posted on this site that celiacs typically have low blood flow to the prefrontal cortex (anyone can guess why perhaps there is so much ADD diagnoses when perhaps it's really celiac disease!) and that the low blood flow restores itself after going gluten-free!) My blood pressure dropped 25 points top and bottom - no one could figure out why I had high blood pressure because I am thin, run daily, meditate and was vegetarian for 20 years. Celiac disease!! The fatigue went next as did the pale skin - a client of mine (a cardiac surgeon actually) asked if I had been tanning! Nope, just gluten free! Then I stalled out and wasn't getting better. Oh by the way, I was eating nothing but chicken and veggies. Then I found the candidafree.com site and figured out I had a severe yeast infection. I started using their product with some success but not what they had promised. So I contacted them (they promise return emails in 24 hours and they do. They are wonderfully supportive and knowledgable!!) and they helped me figure out that I am TREMEMDOUSLY deficient in magnesium and have an extremely resistent strain of yeast infection. But with their help I am overcoming that as well. Right now, no more vertigo or unbalance, no more constipation, no more low grade ear infections, arthritis pain cut in half and diminishing. And I am beginning to feel great. I have a ways to go but I could easily live like this!!! And by the way, I have been through the Mayo Clinic. the Amen Clinic (big research on the brain clinic), the University of TN Epilepsy clinic (I live in Iowa and travelled there for treatment), Andrews/Reiter Epilepsy Reseaarch Clinic, a nuerochemical/biological nutritionist, and two well known oriental medicine specialists. Not one of them mentioned there is a strong correlation between epilepsy and celiac. I found that out by reading Natural Healing and Prevention by the Balch's. A great resource book. So I can only say, hang in there, keep educating yourself, be fierce and fearless in asking questions and holding healthcare providers accountable. I am the top member of my treatment team - I hire them as my consultants and I make all the decisions. If they don't like it then I find others who are secure enough to respect me and my knowledge!!!

I have learned so much from this site. I spent the first several week-ends after discovering I was celiac doing nothing but reading this site. Thank you all!!

Fritzicurls.