Anyone 20+ Years gluten-free? Many Questions

[Lisa16]

Please share your perspective. It would really help me (nad probably lots more people too!)

What is the best advice you can give somebody starting out?

Have you noticed over time periods of sensitivity or greater tolerance?

Have most of the secondary issues cleared up or do some persist? Which ones?

Have you become less or more vigiliant over time? Do you ever kind of "relax" into it?

How many times do you get glutened per year (approx)? Is this pretty constant?

Do the glutenings remain constant in terms of their nature? Or do they improve?

What is the best way you have found to cope with social situations?

What is the best way you have found to explain the disease (or do you?) Did your family and friends ever totally "get it"?

Do you ever eat out? If so, where?

Thank you.

[Welda Johnson]

Hi,

My name is Welda, I'm 64 years young, and I've had Celiac symptoms since age 8, though at that time doctors didn't identify Celiac, just asthma, then food allergies, bronchitis, and sometimes pneumonia, as well as colitis, ulcer, etc. At age 19 they gave me the dire warning that if I didn't have allergy shots for 3 years I would most likely be bedridden by the time I was 25. Since I already had 2 babies, I was in misery, trying to breathe and take care of my kids. I did all the skin tests, took the shots for 3 years, was often at the doctor's office, and eventually spent all my money on office visits, testing, medication, and specialists, without little change in my health.

Finally, at age 36 I started eliminating foods from my diet, starting with all grains, moving to milk & dairy, then eggs, sugar, etc. I would begin feeling better and would return to my old ways of eating. Oohhh, it was such a long process of learning what I could and couldn't tolerate, but I continued to contract pneumonia, be in the hospital, have breathing and digestive problems, and on and on and on. However, just as stubbornly, a part of me wanted to be healthy, and I continued to study nutrition and to learn what I could.

Sometime around 2000 I went for a colonoscopy (my father died of colon cancer) and the nurse looked at my list of food intolerances and told me I must have Celiac. I had vaguely heard that term before, but this time the knowledge took hold, and I went home and began learning everything I could about Celiac. Now, in 2009, I have been totally gluten free, milk & dairy free, egg white, yeast, and a few other ingredients-free for a LONG time, and I would never knowingly eat any of the aforementioned items. My health is top-notch, and at 5 feet tall I weigh about 100 pounds, sleep like a baby, have long, thick hair, clear skin, and lots of energy. I think "the best is yet to come..."

I like to eat at home, because then I know my food is safe, but when I do eat out, it is usually at a Mexican restaurant, because I sometimes eat vegan and avoid chicken, fish and meat (but sometimes I will eat chicken or fish if I feel I need the protein). I may order tamales, refried beans, rice, and green salad, all with no cheese, and do fine. If I'm eating chicken, that makes restaurant eating pretty simple, because you can order chicken, green salad, vegetables, etc. When I'm eating vegan and go to a "regular" restaurant, I might order a baked potato with green vegetables and green salad. That seems to work pretty well.

So, I avoid all grains, all milk & dairy, egg whites, yeast, casein, whey, maltodextrin, modified food starch, and msg. Those are the things that bother me. It may take awhile for you to learn what YOUR body thrives on, but please, stick with this diet, and I know that you will feel better. We are all here to support you. Welda

[Jestgar]

Wow Welda. You're a pretty sharp lady. Amazing that you figured that stuff out on your own without all the resources we all use now. You're one of those people that makes me happy knowing we exist in the world at the same time.

[Lisa16]

Thank you so much for sharing your extraordinary story Welda. I am inspired!

I hope one day I will be lucky enough to look back on my life as you do here and have such a positive outlook. You are blessed indeed.

Lisa

[Generic]

I've been gluten-free for 21 years now. Let's see, I will run through some of your questions.

What is the best advice you can give somebody starting out?

Be your own advocate. Don't be afraid to ask questions and don't freak yourself out. If you get glutened, yeah, it sucks, but it isn't the end of the world. Stand up and dust yourself off.

Have you noticed over time periods of sensitivity or greater tolerance?

I got more sensitive as time went by. After about a year of acupuncture my immune system is back in check. I still will get a reaction, but I won't end up in the ER dehydrated anymore.

Have most of the secondary issues cleared up or do some persist? Which ones?

I'm still low energy, but I have other health issues, so I can't say for sure.

Have you become less or more vigiliant over time? Do you ever kind of "relax" into it?

I can't litteraly be coming out of surgery and still know I can't eat gluten. (stupid nurse tried to insist I eat a cracker). So I can pretty much be asleep and know naturally, it's just programed into my mind.

How many times do you get glutened per year (approx)? Is this pretty constant?

Not really sure. It is random.

Do the glutenings remain constant in terms of their nature? Or do they improve?

Glutenings got worse over time but after the acupuncture, they improved dramatically.

What is the best way you have found to cope with social situations?

Be honest and don't make a big deal out of it. People always say they feel sorry for me. I tell them don't, it really doesn't bother me. I eat healthier because of it.

What is the best way you have found to explain the disease (or do you?) Did your family and friends ever totally "get it"?

I just tell them it causes an auto-immune reaction and "it will cause me to s**t all over the carpet". I find humor goes a long way, along with the brutal honesty.

Do you ever eat out? If so, where?

From time to time. The usual gluten-free menu places, plus where ever. I can always find something on the menu (may just be a fruit cup or cottage cheese), barring it is an Italian place etc.

Hope this helps...

[GottaSki]

Fantastic Thread...thanks for sharing...

I am new to gluten-free and craving info!

[Lisa16]

Generic, thank you so much for sharing your insights. It actually helps me a lot.

Once I have stabilized, I will go get acupuncture!

I love your advice about standing up again and dusting yourself off. Here's to making it 21 years with such a healthy outlook! May your humor never fade.

Lisa

[Welda Johnson]

Dear Jestgar,

Thank you!

Welda

[Generic]

Your welcome and thanks!

[Indigo - Brighton -UK]

Thanks for that it is really helpful.

I feel my story is similar to Welda's as despite advances I have been unable to get medical diagnosis and found out much of my problems myself. My asthma and rhinitus started when I was 16 or at least were diagnosed then, but I had lots of health problems as a child too.

I have found a few helpful health professionals but most have been dismissive, some have been rude, some misinformed and some even aggressive and that does not even cover the unnecessary request to strip to the waist I had to endure from one consultant when I was in my late teens and early 20s.

Unfortunately my parents taught me the doctors are always right - took me a little while to work out that wasnt true at all. In some cases I have asked if I should do something been ridiculed for suggesting it and then gone back four years later to be told to do that very thing.

Now I know I am coeliac or massively gluten intolerant and have a rash that looks different from DH but responds in the same way.

This site has speeded up my learning curve and I pass the info on to my sister too as she is a diagnosed coeliac.

[munkee41182]

What is the best advice you can give somebody starting out? Don't cheat!!! not worth it even if you feel better! I went off the diet for 2 years because I never had many symptoms when I was diagnosed (family history was the cause for testing). Then i started reading more about it - and notice that I had a lot of symptoms that they don't really tell you about - brain fog was the main one as well as increased temper. I've been back on the for almost a year, and feel a whole lot better. Less temper, I can complete my thoughts.

Have you noticed over time periods of sensitivity or greater tolerance? I've actually started to get a greated sensitivity. One night I was craving mexican....went down the street with my husband, got a chimichanga and a margarita. Didn't ask about gluten-free, didn't really care. Literally after eating the chimichanga and margarita, we walked home, I walked upstairs and vomited like I just drank an entire bottle of tequila (when I only had ONE margarita)

Have most of the secondary issues cleared up or do some persist? Which ones? Brain fog! Constipation/hardened stools (you don't know how happy I am now that I can go to the bathroom without pain). Both of these have cleared up. And my belly is flat again (squee!!!). I'm just glad I don't have to dodge the "are you pregnant" question anymore.

Have you become less or more vigiliant over time? Do you ever kind of "relax" into it? I might be thinking of the wrong "relax" but I'm more comfortable about going out to eat with friends/family at restaurants. They usually let me pick the place or they'll do research on their own so i can enjoy some gluten-free goodness when we go out.

How many times do you get glutened per year (approx)? Is this pretty constant? I say probably about 5 times a year, usually through cross contamination (steeling a french fry or two from my husband's plate)

Do the glutenings remain constant in terms of their nature? Or do they improve? It depends, Usually if I have alcohol in me, the glutenings are worse. If i don't have a drink or two when I am glutened, I get a belly...if I have a drink or two (like above with the margarita) I end up vomiting....which never happened before.

What is the best way you have found to cope with social situations? Bring my own food, something I can eat, eat before I go. That's abut it

What is the best way you have found to explain the disease (or do you?) Did your family and friends ever totally "get it"? My family gets it only because there are 3 others that have celiac. Some of my friends don't get it, one of them knows another girl with celiac, but she doesn't care about cross contamination (if someone orders sandwiches for lunch, she'll take the meat right off the bread). So she doesn't understand why she can do it, and why I can't. (or should I say, why she does and I won't do it)

Do you ever eat out? If so, where? Oh yes - a lot....we usually stick to chili's or uno's, but that's only because we like those types of places. I usually google or use the search function to find out restaurants if we want to try something different.

[digmom1014]

Thank you to all three of you for you insite and honestly. I wish I had thought to ask a these questions a year ago. I think it would be great to have this posted somewhere in a newbie section. I'm sure many people could add to it, i.e. good gluten-free foods, viatmins, make-up, etc.

[munkee41182]

LMAO - you know what I just realized that this post said "20+ years gluten free" not "anyone 20+ years old" LMAO!!!

Sorry about that....but at least you get a perspective from someone a little greener....and who went off the diet for a period of time as well!