virginiabeach

What does it matter what the diagnosis is? I know if I am hit on the head with a hammer it's going to cause physical pain and possibly neurological damage. If I ingest wheat it will do the same thing. It no longer takes a doctor to confirm this.

Yes, we get a tax break if we have a "legitimate" diagnosis... What else? I got my diagnosis from a naturopathic physician back when the orthodoxy of western medicine believed we were one in 100,000 and they'd never see one of us in their practice. The ordeal of getting the diagnosis would have done me too much damage by the time western medicine realized it was wrong.

But, in the end, it's not what the diagnosis is, it's about how we survive. Take it and run.

Yup. Virginia Beach here. Canary in the kitchen when it comes to gluten. I've learned that most of my food has to be cooked "from scratch" -- Organic Food Depot on Commuter Drive (right off Holland Road & Independance Dr. is a great place to shop, best prices on gluten free pasta & other goodies. I know that level of sensitivity varies, and many of us have other sensitivities as well. Been trying to be gluten free for 18 yrs, and have been successful the last 4 (had to divorce somebody to do that).

I'd be glad to help.

Oh, my name is Ellen Honeycutt. If you want you can add me on Facebook.

Hi,

It would be so nice to actually share a meal with someone who doesn't have guilt about what is not on my plate.

My young adult children (college students) have both taken jobs in the food industry that allow them to insure that they don't eat here.

Anyone in Tidewater Virginia want to trade off cooking?

Thanks.

Ellen

Hi,

I just made brown belt... Took me just over 2 years, probably averaged 7 hours a week in the dojo.

I would love to connect with other celiacs with this interest.

I guess the post title about says it... I've noticed that some of what I post does not show up on the board... I'm concerned that I have somehow broken a rule I am not aware of. Could I get an explanation, if I have somehow offended?

Thank you.

One note about the 1 in 5000 diagnosed... I was put on an elimination diet in 1994, and wheat and it's relatives were determined to be my personal problem, (at the time, just a sip of good beer would puff me up like a balloon & send me to the bathroom for an hour or so). I tried once to get the official diagnosis, years ago. I was supposed to eat 3 servings of wheat a day for 3 months, before I could be tested. I lasted a month. It was miserable. Others I know have also been told by their doctors to just go ahead and follow the diet to see if it helped their symptoms. Oh, and I'm finally divorcing the jerk for whom love just doesn't ask so much as to make his own pb& j.

It would be a very special man who could convince me that his wheat food wouldn't contaminate my kitchen.

If you even look at the packaging of the waffles in their freezer, despite the large lettering on the front of the box, they most likely at least admit, at the end of the list of ingredients, that the product is "made on equipment shared with wheat."

The official explanation, (I've called to ask), is that they are legally allowed to call the product "gluten free" if there are less than 20 parts per million of gluten in the product. I understand that this is acceptable for many, as level of toleration varies for us. This is the same answer I got from Van's and one of the other companies that produces "gluten free" waffles. Not for me. I have to be worse than "Monk" about this.

Trader Joes gluten free rolls and bread may have been produced in a gluten free facility, but it is shipped and shelved with the wheat stuff, and somehow it seems to have become contaminated -- at my favorite shop, Organic Food Depot, (organicfooddepot.com if you want to see if one is near you), there is a separate freezer for the gluten free products, and they are very careful not to store, shelve, or ship gluten free products with the wheat. Bread wrappers tend to be thin.

General Mills products, (5 flavors of Chex, so long as the words "gluten free" appear over the word "Chex" on the front of the box), are produced in a gluten free facility. I've called the number on the box and have been assured that while not all rice and corn chex are gluten free, General Mills will never put the words "gluten free" on a product that was not produced in a gluten free facilty.

On gluten, I get extremely paranoid and neurotic.. on top of the negative moods, nightmares, anxiety, sleep problems, etc. I see things out of the corners of my eyes, and become ridiculously impulsive. I've learned not to talk to people if I have been glutened for an extended period of time, i just get too weird.

I read that certain vitamin deficiencies, common in celiacs, can make you flat out loony.

Does anyone else experience insanity-lite while on gluten?

Uh... Yeah. A little over a year ago, I joined a dojo (karate school) in the hopes that the training would fix the neurological problems I was having due to wheat exposure. (I'd just managed to pressure the jerk I'm divorcing into getting out of the house -- it was too much trouble to him to not poison me).

I still am not to where I can get/hold job, but I'm done with the nightmares and hallucinations.

Oh, by the way, martial arts training really does help with focus, balance, all that good stuff... I really recomend it to anyone who feels their nervous system has been compromised.

Timewise, it's easier for me now that I am only responsible for myself. Wouldn't have been able to do it before last summer. The limited hours available at other dojos was one of the setbacks for me.

Most sensais have a full time job elsewhere... mine does this full time, 7 days a week. His wife owns a shop in the same strip mall. She helps out with the dojo, too -- leaves a note on the door of her shop when she does.

They run a summer camp for children -- 28 kids average a week this summer. The kids classes are almost that large most of the year, and the adult classes can be from 8 to 12 any given night, sometimes more.

It's a small building, but I guess it is a big dojo. I've seen one that consistantly had classes twice as large -- but only one hour twice a week.

There aren't many who could pull it off. I'm lucky I found this.

Congrats on the brown belt. And yes to the mental/spirituality aspects. Our diet is a good bit more rigid than those imposed by various religious sects, and anything that re-enforces discipline is good for us I think.

It's taken me less than a year to go from white to where I am... I do spend about 9 hours a week in the dojo, and I was very into martial arts when I was young, but finding a dojo I could stick with that actually tested was impossible. When I don't work out that much, fibromyalgia and neuropathy raise their ugly teeth, anyway, and I prefer knowing that if it hurts I know how it happened. But my dojo is open 7 days a week with about 14 hours of class available for adults not on the exhibition team. And, we pay by the month, not by the class, unless you want private instruction.

You don't state your age... I am 54. Two years ago, when my ex moved out, and I could finally live the level of gluten free I needed, my resting pulse was 80 to 100 (on toprol, to control rapid, irregular pulse. It's now 60 or below, the last of the toprol went in the trash a year ago.

My sport is not running -- it's martial arts. But yeah. And the carb loading and sports drinks have a place in the diet of a celiac that's not physically active -- they tend to be really portable.

I just joined today and have found this site to be filled with great information. I am only one month into being gluten free and I am an avid runner. My running has improved incredibly. I knocked off 3 minutes off of a 7 mile run that I do all the time, placed in a race and my resting heart rate went from 58-60 to 48-51! I can't believe the difference and I haven't even realized my full potential. My body must have been really suffering and compensating whenever I ran since I now don't have that mental fight anymore and I feel like I have so much energy. Has anyone had a similar experience? Each day is still so exciting when I run. I'm now learning how to eat, carb load, and manage this disease. I'm 39 and I feel I have had this for at least 8 years. I know my body pretty well and once I hit 30 things were just not the same anymore.

Thanks to all for doing the research when it comes to carb loading and sports drinks/bars. Please share, I would love to hear any athletes who have had similar experiences.

-Run like an animal

I spend about 9 hours a week in the dojo... I shied away from running because I am 54 and know that I did have mild osteoporosis 2 years ago when I had bone density test. This is one of "our" problems. I take calcium with OJ for that. I'm not near as worried about the kicks & bumps in the dojo as I am about the mis-step on the trail.

Just got a blue stripe on my green belt Friday -- I've been doing this less than a year, started when I realized how much damage I had after putting up with an inconsiderate (process of divorce) husband for 15 years after I knew what the problem was. It's hard to explain, but the mental part of the training really helps cut through the fog.

Has anyone else gotten sick from eating something marked Gluten free?

Unfortunately, companies that make "gluten free" products do not have to inform us that they were made on equipment shared with wheat.

Van's gluten free and Nature's Path both claim to clean their equipment very well before they produce the gluten free products. Open Original Shared Link for example.

Don't trust anything from Trader Joe's either. General Mills, however, does not put that label on a box that was not entirely produced in a gluten free envireonment. Does anyone know if there is a site here or on another site where lists are kept as to how gluten free a particular brand it?

It would be good if we could collect all the responses from different companies in one spot so that we would not each have to do all this research.

It would be helpful to have a celiac aware gp here in virginia beach. thank you if you can help.

I'm 53. Female, divorcing probably partly because of it, but that's not the point. I think it would be fun to just go have lunch with someone who wouldn't cringe when i pestered the waitress about ingredients.

Put your own gas mask on first. That's the rule.

You sound like me, about 15 years ago... Except we never legally separated before now, he (merchant seaman) would ship out, come home 6 months later, sabotage my diet, (it's hard to prepare wheat based food without contaminating yourself somehow), and my excercise programs, (needed me at home for something so I couldn't go to the gym). Then, when I had my hysterectomy, (celiac totally trashes your reproductive system), he displayed the bedside manners of a hyena. It did not get better after that.

Your husband _asked_ you to leave while you were sick and caring for a newborn. The spouse is the one that's supposed to have your back.

Oh, and I know you weren't in a healthy mental state -- this thing goes for our nervous system, read that brain too.

I hope you have a good lawyer. Most states would give you pretty much what you need. You have 2 major concerns at this time, since the husband isn't going to provide anything resembling emotional support. Someone has to take care of the baby, so you have to take care of yourself.

Where are you, by the way?

Hi, Separated due to Celiac and now trying to save my marriage. Not sure which way it will go. I often joke that I wish people had clued me in no what feeling like a human was supposed to be like.

My pregnancy threw the then undiagnosed Celiac into overdrive. Lost 100 pounds in 7 months (I weight 110 now after putting on some weight) and husband asked me to leave and I moved out while deathly ill and had to care for an infant.

Sometimes I feel like an idiot for still trying to save this marriage, but when every Dr. and every Shrink either tells you you are fine or diagnoses you with something new - how could my husband believe something like a WAFFLE was killing me. Not to mention I was not in a healthy mental state at all - that really hurt him.

AGGHGHGHHGHG I HATE GLUTEN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I'm 53 years old and am divorcing now. I had a lot of trouble holding a job since I understood what I had, (not the "official diagnosis, but what that involves is very much like hitting myself over the head with a hammer to prove it would hurt).

Right now I'm looking for work

If the relationship is good, and the spouse really wants you to be healthy, happy, and productive, I'm sure they'll figure out how to get a wheat fix without poisoning you -- but for 14 years after learning what my real medical problem was, it was quite clear that he was not going to cooperate. I tried very hard to be wheat free, but his need to have his wife cook him regular pasta and such was far greater.

I had fibromyalgia, neuropathy(mostly gone now), host of "female" problems that was solved with a total hysterectomy, I had glaucoma, an irregular heartbeat, memory loss, loss of coordination, and was in general a mess. Most of the last 15 years I have not been a good physical candidate for employment.

Since he's moved out, the glaucoma and fibromyalgia is gone, my resting pulse is 60, and as for the rest, I've joined a dojo to help me "fix" the neurological symptoms -- working my backside off -- I test for my purple belt tomorrow night. It's working.