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Member Since 21 Nov 2007
Offline Last Active Apr 26 2013 01:24 AM

#741565 The What's For Dinner Tonight Chat

Posted by on 24 October 2011 - 08:27 PM

Tonight we had thin beef sirloin tip with garlic, peeled white sliced potatoes boiled and served with butter, and cooked green beans. A simple meal, but delicious!

These days I seem to crave beef twice a week. It gives me more energy. I just make sure I have some pancreatic enzymes to help with the digestion and I am fine.

It was a nice antidote actually after a couple of days of having suffered from some trace gluten after a new friend came over with her supposed gluten-free dish for a gluten free potluck. She didn't realize that an oven previously used to bake gluten pies etc. was a big no no for us. She should have since she otherwise is eating gluten-free. She has celiac and thyroid cancer which isn't going away. Not hard to guess why.

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#741465 Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies

Posted by on 24 October 2011 - 02:26 PM

Just wanted to add that both my boyfriend and I experience ataxia as well as migraines and slurred speech with difficulty finding the right word associated with being cross contaminated with gluten. And yes it very much is like being drunk, but not so fun since its not on purpose.

Both of us have had severe gluten intolerance more than likely since as long as we can remember, since both of us were constantly ill as children, and had chronic neuro and ataxia symptoms to boot. For myself I had occasional visions and the whole nine yards, including losing my amazing athletic balancing abilities I had when I was off gluten the first four years of my life. For Chris as a child and adult he was always experiencing being dizzy as well as migraines and had severe depression and ADHD and excessive sensitive emotions--all of which has disappeared now that he has been off gluten. So take heart! One can improve. I don't think we are so very unusual in this regard.

We both have had ataxia so bad we have gotten so dizzy we have not been able to get up, quite independently of each other. So it very likely is a fact our villi are quite severely compromised. However its also possible that the gluten also attacks our nervous system itself. Certainly it feels like it whether its a direct correlation or downwind of the villi.

I also think my salicylate sensitivity has added to the problem since salicylates for me also attack the villi and in effect the nervous system (its primary area of assault actually--as well as the skin). Now overall I am far less dizzy, whereas in the past it was a daily thing, especially upon standing up from sitting or lying down. I even fainted so badly I broke a couple of teeth and another time severely damaged my foot. So eventually I learned to get up and move slowly. Now however I am noticing overall I don't have to be so careful anymore unless I get glutened.

Just two nights ago both my boyfriend and I got glutened from eating someone's supposedly gluten free dish that actually was baked in a non gluten-free oven (even though on a piece of clean aluminum foil). Last night we were wandering around the tool section at Home Depot hardly able to make a decision and very much like we were drunk. Fortunately today I am much better, though still taking it easy... Whereas Chris has neuro symptoms creeping up his shoulder and neck area and onto his face---even though he went to work anway.

We both hope he does not get a migraine. I already had mine the first night--relieved by initial drinking baking soda in water followed by several doses of a homeopathic headache formula and drinking lots of water, eating plain real yogurt and taking extra acidophilous and nattokinase, none of which he did. I will encourage him to do so next time around.

Plus for him he could take charcoal capsules to absorb the errant gluten, which I cannot given my salicylate sensitivity since its usually made with high salicylates -- coconuts etc. (though I can burn a rice pancake, can't I?? I tried burning some plain rice, however it just got dried out and messed with the pan).

I think one reason docs don't want to deal with ataxia is that it is caused by so many different things it makes their poor heads spin (LOL!). Plus just giving us a magic pill does not work... Thankfully however there are those researchers out there proving what we experience is real and actually has a cause(s).

And further yet, we can heal from this. Believe me, so many here on celiac.com have improved amazingly from this ataxia that its not a secret, except perhaps for some doctors.
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#741442 Medical Alert Jewelry

Posted by on 24 October 2011 - 01:11 PM

I'm not sure which direction I'm going with it yet, but as of now, my plan is to take it not as a 'complainer' standpoint, but as an "I'm an employeee with Celiac and I can see many opportunities (a big buzz word in restaurant management) that we have in which we can better serve other guests like me." I want to approach it not with a 'look at all these problems,' but with a 'look at the ways we can do this BETTER' mindset. At that point, I think it might be good to include a letter-writing campaign so that they can see we are here (and in numbers) and that it will positively impact the bottom line by tweaking the way things are done to open up a new market. As my husband keeps reminding me, we are a community (national and world-wide) and we DO talk about such things. If they take these steps, we WILL get word around. And word of mouth advertising (both positive and negative) has a much greater impact than ANY marketing campaign they could come up with.

So that's about where my thought process is with it right now. Any thoughts anyone???


Jen I think you are exactly right! Having someone(s) on the inside to create more awareness of a possible income flow for your restaurant corporation is a more positive and effective stance than what I was thinking of. Certainly I would be willing to sign email letters of support for your project.

As far as my idea so far (such as it is given its infancy) I agree that it would be strengthened by folks working inside the medical establishment. And then the rest of us could brilliantly support their point of view. I know there are a few folks here on celiac.com in the medical world. Soon we should start a thread to see if any would put their necks out for helping to alter the medical establishment point of view. Many I think are terrified of the possible economic consequences; however there may be a few brave souls who would be willing to buck the system and stand up for good medical science if not for fellow humanitarian reasons.

No matter what I agree it is unwise for either the food or the medical establishment to be so unaware of all the folks they are leaving out of their system. Nevertheless, as far as the U.S. medical system, it seems to be consistent with their beliefs to be blind concerning this and similar issues unfortunately. I have been advised that we are considered to be part of the costly "complications" they would rather avoid even acknowledging whether it makes sense or not. Part of it is because we don't represent a good way for them to make money. However the other part is that they are not set up to deal with medical issues that are holistic in their very nature.

They are better at dealing with emergencies or at singling out parts of the body rather than dealing with the whole being that celiac and severe gluten intolerance affect. You would think this attitude would have changed by now given how easy it is to cross reference things using computers and the Internet. Instead I am told they often don't do the cross referencing themselves and additionally think of informed patients as folks to shunt aside.

Thus I think it is important we take care of ourselves and help watch each others backs and stand up for our rights, like it would be for any other underdog group it seems. Never easy, but for the safety of our lives, perhaps quite necessary. The ironic spin off I think is that it would end up helping most everyone by eventually improving the attitude of the medical system.
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#734211 Work Week Random Cc

Posted by on 26 September 2011 - 11:06 AM

You know I kind of figured this would be a "touchy subject"--lol!

Or like my brother says, you only laugh when you cry.

I think its way too easy to think that one's level of sensitivity is all there is. There is however the actual reality for some of us that they/we are more sensitive than others. And they/we need the rest of everyone else to be sensitive to that fact.

Of course no one wants to live in a bubble.

Facing the sensitivity and creating strategies to deal with it, that is called growing up. If you get anaphalaxis, sweet jeez, you better be careful!

Hmm, I think my next new subject will be homeopathics and CC. I think it really is perfect how they can help. Its just the energy of a substance that they are dealing with after all. For some of us, we are nearly that sensitive to gluten etc. So it makes perfect sense that if one is also free of stimulants that the homeopathics can and do work as powerful remedies for much of what ails us, esp. if we are very sensitive, eh? Am only beginning to explore homeopathics, but am finding them to work wonders so far against my migraines as well as old spinal and hip injuries. Not a magic pill, but definitely helpful at the least.
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#730048 Why 3 Weeks Dizzy After Gluten?

Posted by on 13 September 2011 - 11:58 AM

I don't know where I would be today without the help and advise from this group. I do take a pro-biotic. What is nattokinase? The veggie drink sounds interesting enough to try, thanks for the thought. Can you explain leaky gut? I have heard the term but wasn't sure what it meant.

Hi again.

The nattokinase is a fibronylitic enzyme derived from natto, soybeans that have fermented after being inoculated with a bacteria found in straw--something the samurais discovered over 1000 years ago care of their hungry horses. It is a strong anti inflammatory and acts against scar tissue--which is important to heal the damaged villi in the intestines.

In case you react to all soy, there are other anti inflammatory agents--like the active ingredient in Vitalzymes, whose name I am forgetting right now. It is basically the enzyme derived from silk worms. Its easy to look up. Unfortunately many of the other (lesser) fibronylitic agents are full of salicylates....like bromelain. However papain is probably safe. These fibronylitic agents are good for getting rid of plaque in the blood vessels too. A lot of research has been done on them for people who have heart problems.

Garlic helps too.

By the way, the nattokinase is best taken on an empty stomach, as are the enterically coated pro-biotics.

Leaky gut comes about after the villi are damaged, often flattened or scarred. Then without them, undigested proteins leak through the lining of the gut and into the blood stream. Then the proteins are mistaken as foreign invaders and the body's system of defense attacks them and often the surrounding material becomes inflamed. Thus are born many sensitivities and seeming allergies.

Also wanted to mention that for me I have to take co-enzyme B vitamins or else they do me little good. The co-enzyme factor makes it so they go directly into the blood stream, rather than having to pass through the liver first. For this to happen however they need to be taken on an empty stomach. I take them with the above mentioned nattokinase and pro-biotics.

I use the co-enzyme B complex by Country Life. I hear Now also has some. Who knows what is available in Germany?? Maybe you? I avoid the sublingual kind since I am sensitive to sorbitol, not to mention the increased expense. If you like whatever kind you like, you can usually find them online and order a big bottle for a lot less money.

Again, hope this helps.

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#729812 Why 3 Weeks Dizzy After Gluten?

Posted by on 12 September 2011 - 04:36 PM

I agree, it can easily take three weeks or longer to get over being cross contaminated with gluten. It seems neurologically affected people often are a little more sensitive than others.

By the way, I have discovered recently that homeopathics can shorten the duration of a gluten attack. Might be worth checking out, no?

Plus if you have some salicylate involvement, as it seems you do, your intestines are probably more sensitive than many since you have both the sals as well as the gluten messing up the villi and creating leaky gut.

Thus using things like nattokinase and pro-biotics can really help. Plus you can make veggie smoothies out of safe vegetables that help you to detox faster: parsley, celery and ice-burg lettuce with a bit of water. It can really help. Almost no sals at all, if any.

Baths taken with epsom salts will also help you to detox, as well as long walks -- daily if you can muster it.

If you still are having problems, you may need to reduce your salicylate content even more. Hope not, but it is possible. Many with this too have to heal a while before we can tolerate even bananas or peeled golden delicious apples, not to speak of other fruit or chancy items like nuts and seeds. When I do have bananas or apples (which now is rare) I find cooking them makes them more tolerable. If I don't cook (and peel them), I get neuro problems...all by itself (i.e., no gluten involved).

Good luck!

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#728022 Bone Pain & Itchy Skin

Posted by on 05 September 2011 - 11:53 PM

I have to take minerals every day, twice a day. What really made the positive change was taking silica drops, lots of calcium, mag., zinc, trace minerals, vitamin D. I also take nattokinase and some pro-biotics on an empty stomach to help heal the damaged villi.

Hopefully you just have another food sensitivity or food allergy. I would try testing out the common ones first.

Its also possible related to DH--which iodine can exacerbate as well as gluten.

For me I even went on a grain free diet, but in the end, I discovered it did not help me. The healthier I ate, the worse the itching got.

As it turns out I finally discovered I have salicylate sensitivity--after having a summer very high in salicylates from my beautifiul vegetable garden (tomatoes, cucumbers, zukes, herbs etc.). I was avoiding grains, so made many zucchini/sunflower seed pancakes, casseroles with eggplant, tomatoes and zukes and mucho wonderful beet stews and the like seasoned with our hot peppers, basil and oregano etc. from the garden. I itched like a madwoman and could hardly sleep a wink--so I beefed up on even more herbs to help me sleep, which of course they didn't since they were all high in salicylates.

Taking the Advil could have made you go over the top in that regard. Hope you don't have it, but it might be worth checking out on the internet.

If you do have it, there are many vegetables, herbs, fruits and nuts that are high on the salicylate list. Even though its a bitch, its worth the trouble to stop the itching etc. All by itself Salicylate sensitivity can cause leaky gut (i.e., not to speak of the fact you already have gluten sensitivity which causes the same thing--a double whammy!). The scratching can lead to nasty infections if you are not careful.

Taking hot baths with epsom salts helps. A little goes a long ways if you want to avoid nausea and excessive tiredness. Going off high salicylate soaps and shampoos also helps. Ditto with lotions etc. Coconut is out, even coconut based charcoal filters used to filter most bottled water. Use spring water instead if this fits your profile.

People who have had or still have things like anxiety, depression and ADD and skin conditions often have this kind of sensitivity to salicylates--not to mention bone pain.

Its kind of like overdosing on aspirin all the time. Its hard to be completely salicylate free since its in most everything; plants like it to protect themselves from the elements and bugs.

With Salicylate sensitivity, one ends up eating this boring English diet, but if it makes you feel better, its worth it. You begin to appreciate simpler foods. Think making veggie smoothies with celery, parslely and iceburg lettuce as well as eating a lot of chicken and rice with cabbage or brussell sprouts or green beans with garlic and salt as seasoning.

Be careful of the oils too. Safflower and sunflower are basically IT. Olive oil is OUT. Too much salicylates.

Fortunately maple syrup is fine. Most other sugars are not. Even stevia is problematic since it is an herb.

I find that taking the homeopathic "sulpher" also helps--the pills, not the tincture since tinctures are often made with gluten based alcohol. It is good against things like eczema and rashes and no doubt, itchies.

If you have a problem with the lactose, generally you can use the pills as a "mother" and add a few of them to a bottle of water, percuss it a bunch of times. It should last you a month. You can check out how to make water based homeopathics on eHow.

Good luck!

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#727568 Please Help Me Figure This Out..my Roommate Is "poisoning" Me :/

Posted by on 03 September 2011 - 10:09 AM

Just wanted to add that the dust on the chef's clothes and person is enough to cause cross contamination in your kitchen etc.. I have gotten glutened just walking through a pizza place to use their bathroom in back. I also have gotten it from shaking someone's hand and then opening up a water bottle. I have had to learn to wash my hands constantly.

Clearly the situation with this tenant as is is untenable. Maybe you should give him the 30 days and insist he make a separate mini kitchen for himself in his bedroom? And wear a separate set of clothes in the house than what he wears when he works? And leave his shoes outside and/or put them in a bag when he comes in the house? And take a shower immediately when he comes home.

Either that, or you could temporarily go live with a gluten-free friend??

What amazes me is that your bf doesn't see this relationship between your suffering and the appearance of this guy. If he continues to be in denial of that fact, it would make me think twice about him too...

Good luck!

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#724973 Celiac Cost Me Everything

Posted by on 23 August 2011 - 10:19 AM

I agree-a beautiful dog Pooh was! He'll always be there in your heart. He's still with you in ways that count.
He just might also encourage you to find room in your heart for a new companion later on down the road. You will know when the time is right. For now its appropriate to mourn and be glad his big spirit shared his time with you.

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#722191 Is Anyone Else Just Angry That Drs Missed Celiac For So Many Years?

Posted by on 11 August 2011 - 05:53 PM

It is my personal belief that good nutrition is the key to everything. The key to health, happiness, longevity, and a good life. The fact that it is BARELY taught in medical school is a joke on the entire human race. So it does not surprise me that the medical establishment would over look a disease like celiac disease. Ask yourself, before your diagnosis, when was the last time you were in the doctor's office and they asked you what you eat? When was the last time they inquired about your nutrition? It's reprehensible. So, yes, I'm angry. But I channel it into positivity. I use that anger to spread the word about celiac disease and help people get better informed. I can tell you this - every single person I know, and every single person that I have any internet contact with knows about celiac disease! I make sure of it. :D Facebook is a wonderful way to help educate others.

I'll second that thought!!
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#721946 Is Anyone Else Just Angry That Drs Missed Celiac For So Many Years?

Posted by on 10 August 2011 - 05:02 PM

I so l hear you.

The thing is is that doctors and most of their supporting crew are not taught much if anything about nutrition--or diseases associated with it. This begins in college.

I started to take a physiology class at the local community college, and on the first day the teacher said not to do any projects on things like Beri Beri since we don't get conditions like that in this country. Thing was that I had just discovered I had Beri Beri--due in large part to heredity and probably worse because of celiac. I was low on vitamin B-1 which ain't supposed to happen here. Well I doubt the good teacher would be open to research on gluten intolerance or celiac either.
My doctor was all hot on the fact I had a heart condition, however after I started taking co-enzyme B vitamins and nattokinase and then went off all trace gluten my heart condition went away.

Ironically I was originally diagnosed with celiac sprue as an infant when I stopped growing and got pneumonia when introduced to grains. But back then the docs all thought one could "grow out" of it. So later when I was re-introduced to gluten I did continue to grow so they thought I was OK. They just didn't notice my peeling fingernails, hair falling out, dental carries, bruising, constantly getting sick and staying that way longer than anyone else, spacing out, seeing and hearing things and people who weren't there, problems with contracting urinary infections, pneumonia and bronchitis, migraines, anxiety attacks, poor memory, bad teeth etc.

The fact I survived is a testament to my body's resilience. Now I don't generally get ill unless I get glutened too frequently--and I have discovered I actually have a calm disposition and an excellent memory overall.

It sounds like you too, like many of us here, really went through the ringer. Its natural to be upset about it. I mean after all this is our lives we are talking about and how many missed years and thus missed opportunities??

Now here I am 62 years old feeling better than I did in my early twenties, and in many ways better than I felt when I was a kid. Its Not all bad to feel good now (actually I celebrate that fact), but honestly I would have liked feeling this way back then.

Gradually more awareness about gluten intolerance/celiac and other associated conditions is improving. But for many it won't happen until another generation of doctors and teachers are in charge.

Our job then is to take care of ourselves, and inform others when appropriate. Unfortunately for many they just aren't open to the information, either the docs or the patients themselves. When that happens we just have to move on and find others who are more open and supportive.

Gradually our situation will become more and more accepted. Give it time. Already there have been huge strides in just the last 5 years.
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#712787 Glutened Or Colitis?

Posted by on 28 June 2011 - 09:29 PM

"I did have some Trader Joe's chocolate macaroon cookie thingies with ganache yesterday. There are no gluten ingredients listed on the label but it is done with shared lines. But I thought Trader Joe's was very careful with CC so I didn't worry about it. A couple of hours later I had my usual anxiety and feeling like crawling out of my skin that I get when glutened. "

I hate to tell you, but its my belief you did get glutened by the cookies etc. I used to think it was OK to eat things made by TJ's on shared lines with wheat, but both my bf and myself have gotten badly glutened from cross contamination ('CC) eating such items.

My best advice is to only eat things not made on shared lines or in a facility that also processes wheat.

If you end up being really sensitive (as I am) you many need to make most everything from scratch, especially at first. Think of it this way, it costs far less and is usually a lot better for you.

Am also wondering why you were eating chocolate macaroon cookies right after having been in the hospital for severe intestinal difficulties... Might want to wait a bit to heal more before introducing sugary chocolatey items.

Meanwhile, consider taking some pro-biotics and eating things like papaya and pineapple maybe with some plain yogurt to calm things down, assuming you are not allergic to them. Vegetable smoothies made in your blender might also be a good idea... I like to make them combining chopped up celery with parsley and lettuce. Further, home made chicken/ vegetable/brown rice soup is very healing.

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#711090 My First Trip To The Mil's Since Diagnosis

Posted by on 22 June 2011 - 05:55 PM

No matter what, I think this topic struck a chord, eh folks??

Ignorance is bliss, but for us we can't be ignorant.

The advice to not be a doormat as well as the advice to not cause WWIII and gently and gradually start to educate your MIL are both wise. The thing is to learn to not take it to heart when others are ignorant and close minded; meanwhile do take care of yourself.

It also sounds apropos to get your hubbie to intervene with the apologies etc.--but from what you said, is that likely?? There is nothing like trying however. It could be one of those "growth opportunities."

And meanwhile the idea of having a separate vacation to yourself seems appealing at least occasionally. But probably not on major holidays. That is for you and yours I would think. If MIL doesn't see her son for a while at those kinds of events due to her bad behavior, maybe eventually she'll get the point.

With me at this late date, I don't even attempt to socialize with my biological family around food. Instead I have my true alternate family: my bf and my friends.
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#710756 Finally Taking The Plunge

Posted by on 21 June 2011 - 12:17 PM

Hi Sara,

Have you tried grinding your own rice flour? Just use brown rice and one of those large coffee grinders (sans coffee of course).

Growing your own or simply buying potatoes in bulk can help too. You can cook up a potato and mash it up later to put in your rice flour pancakes or other baked goods with eggs, agar or xanthum gum (or some combination thereof) as a binder. I personally am allergic to xanthum gum as well as all other things made from corn.

What I do is when I cook, I make a lot at a time. That way I don't always have to be slaving in the kitchen, plus it ends up costing less. I use leftover rice as an ingredient in a lot of baked goods as well as in pancakes. It makes them a lot less dry. I also cook more veggies at a time than we'll use for the same reason. Makes it easy if I want to whip up something fast to have already cooked rice and veggies and say chicken or whatever. Maybe make a dish with a bit of egg in as a binder for lunch or whatever, or a very quick stir fry or soup.

The only flour I seem to tolerate so far besides rice is sorghum flour. For me the potatoes have to be white and peeled -- this is the sensitivity to high to moderate salicylic acid talking.

Maybe if your family is supportive and helpfully participatory, you could have chickens and either a milk cow or goat.

Some people also have rabbits. Anyone there not squeamish about raising one's own meat??

A lot of work, but also very pleasant if you like that sort of thing. I haven't done the raising animals currently, but we did do so when I was a child. I wouldn't mind doing it again if I had the opportunity.

I do like having a garden, however, whenever possible. It just gives back so much good energy as well as good greens and squashes, and herbs even with my limited palate (i.e., the salicylic acid sensitivity). Being so far north, consider putting in a greenhouse--which would be better against the radiation too.

I think that's another subject of course; lately the continued radiation from Fukishima has been worrying me a lot since my original celiac developed when I was an infant exposed to radiation from Hanford nuclear power plant. I hear that from Santa Cruz to Seattle there has been a 38% increase in infant mortality since mid March... That is not talking about infants getting pneumonia and such--like what I also got after being healthy prior to. God only knows what the continuing radiation is doing to the health of the general populace, by now spread world wide.

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#709323 New Here

Posted by on 16 June 2011 - 11:56 AM

And the good news is that if your problem is indeed gluten, you very likely will eventually start tolerating most of those foods that seem to bother you now -- as long as they don't have gluten.


Richard is so right. I can now eat eggs whereas they used to give me migraines. Ditto with my partner who now can eat onions and garlic with no problem. For some of us however being completely gluten-free can also uncover other hidden food allergies and sensitivities. You will likely need to heal your gut for a while in any case--so its often important to eat simply at first and then observe your reactions (if any) when you add in new foods.

The other good news is that its very likely your gut will feel so much relief. You may notice other things too like a clearer, less anxious mind, your body feeling fewer aches and pains, improved overall health and stamina, fewer dental carries and improved gums, sleeping better, weight loss etc. etc. So it is way worth it.
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