BRUMI1968

I think grains can cause demineralization through 1) being very acid and 2) containing phytic acid. Of course, lots of foods contain phytic acid, such as nuts, seeds, grains, and to a lesser extent some veggies.

There are a few books out about grains - dangerous grains maybe is one title name. I can't recall.

You say your joints hurt and your teeth are dissolving in front of you - I would suggest cutting out grains entirely - all of them. They demineralize the body and can cause joint pain and demineralization of teeth. If you have joint pain you might also want to see if you are eating a lot of nightshades (tomato, potato, eggplant, peppers (not black pepper) and tobacco). If so, you should quit those too to see if the pain goes away.

I have Celiac and have had it actively since I was a toddler. I have had amazing teeth my whole with only one shallow cavity (I'm 42) - and that was when I had braces and it was hard to clean the old choppers. In the past year, my front teeth have started to look clear and I have pains in my teeth whenever I eat brown rice and other high acid demineralizing foods.

That would be my advice to you - try one or both of those eliminations. No grains is a bit difficult at first - we are really used to eating grains. You can use quinoa and amaranth to substitute, but know that they have mineral blocking qualities as well. Take a good calcium supplement and see if that helps.

Good luck.

Sherri

I've been doing the low fomap diet with amazing success (way less bloating, farting, etc.) I am having trouble getting enough fiber, because I also go grain free for the most part (teeth hurt when I eat brown rice, and just do better grain free all in all, so that is a bit of an issue for me that I'm working on. Here is my question:

If aduki/adzuki beans are fermented into MISO, are the sugars in them that would otherwise bother me (fodmap) be already digested up by the bacterias in the miso. This is soy free miso, and gluten free miso. I am trying it out to see how I do on it, I just wondered what you all thought about it. Logically, it seems that miso would be okay on low fodmap - okay as the only way to eat beans. Also, if fermenting does eat sugars, couldn't fermenting other veggies that are off limits also make them back on limits? Hmmmmmm.

Also, why does the low fodmap diet lady say you can eat peanuts when they are a legume? Seems odd to me. I don't really go with the book; rather just got a list of the foods online and eliminated them all - have not officially added any back but have noticed right away with garlic, onions, and beans, the times I did "cheat".

Thanks for your thoughts.

IMHO your doctor was giving you the right advice. Go with the natural D3 he advised rather than the lab made D2.

OH MY GOSH I'M SO SORRY ..DYSLEXIA ATTACK. It is D3 that is the natural one that is the better one to take. I'm so sorry. That is also the one Dr. Mercola talks about - and why you should choose it over D2.

Good luck.

When I was a little girl, I often had blood in my stool caused by fissures. These are tiny cracks in the sphincter or the skin down there, whatever it literally is. This is caused by constant constipation. Some things you can do BESIDES cure the constipation, which would obviously be the best thing, is not to use harsh soaps on the bottom. These dry out the skin further and make fissures more common.

Also, more and more I am really doubting these celiac tests. I know I'm talking out of school here, but I have met so many people who not only have symptoms, but who have gotten substantially better going gluten free, but still test out negative. The tests are not as good as your experience on a gluten free diet.

I would definitely try your daughter out on a gluten-free and dairy free diet and see if her Constipation and Vomiting get better. It can really change her life if she does not have to grow up with those things, the way I did. Take good care.

Sherri

Sorry. I keep thinking of other things. I don't know how much water you are drinking, or if the drinking water changes from weekeday to weekend, but one can demineralize oneself with lots of water.

I hope you figure it out.

Oh, and as a counterpoint, even a drop of ghee gets me constipated. I'm dairy free. I know it is supposed to be lactose and casein free, but it gets me every time. Just tried it a couple days ago (and went two days w/o pooping. ug.)

This is never a popular thing to say (and being someone who grew up suffering from Celiac and having her parents and doctors accuse her of being a hypochondriac, I agree)...but it sounds like it might be influenced by a mental state...have something to do with the fact that you have school on those days. Are there any bathrooms at your school that are private?

When I was in college a few years ago, I HATED going at school...but my schedule was such that it was not hard to just go when I got home. And then this last summer when I worked at a kids camp from 8am to noon, I could never go in the mornings before leaving. It really does disturb me not to have a nice safe private place to go to the bathroom. Not germs...but other stuff...like the way it might take me 20 minutes to really get things done. That sort of thing. I wait to go to the bathroom at work until my boss is at lunch because his office is next to the toilet and the walls are thin, and I don't like feeling rushed.

Is it possible that it is something mental with your schedule?

The only other things I can think of are: if you normally go at say 8:15 - where are you at 8:15 on M-F? Could you get to the bathroom at that exact same time? Do you eat the same things during the week that you do at home? Are you eating something for snacks or "on the road" type food? If so, what are those things and what do they have in common - or how are they different from what you eat on the weekend. Have you looked into sugar malabsorption problems - low fodmap diet, etc.? If you are eating those foods, that might influence it.

I don't know. I'm into really examining all facets of why something might be happening. I hope I did not offend by wondering if it might be something emotionally charged or intellectually charged that is affecting you -- I know that can get annoying when it sounds like folks discount your symptoms or your ill health. I in no way want to do that. Take care.

Sherri

Hi. Most vitamin D does not come from food for us, it comes from the sun. I don't know where you live but I assume it's in the northern hemisphere, which means we're getting out of the sunny season.

Supplements are practically mandatory for everyone in North America - and D2 is the supplement you want, NOT D3. It is also important to have Vit. A to absorb properly the Vit. D.

When sunshine comes back, don't use sunscreen for at least part of the day, and get at least enough sun to get your skin barely pink. Once your skin is pink, you are no longer absorbing the D.

D is so important - they actually say it is not really a vitamin but a hormone. Anyway, I would definitely supplement with Vitamin D2. Check out mercola.com about Vitamin D. He has a lot to say about it. You certainly don't have to buy his Vitamin D supplement, but there's lots of good info on Vitamin D on his site.

Good luck.

Hi. I would definitely 100% do the celiac panel first and foremost.

Something else comes to my mind right away, and that is an inability to digest certain sugars well. It looks like your diet is fairly high in carbohydrates. I recently tried something called the low fodmap diet. Fodmaps are sugars that ferment quickly in the bodies of some folks, making them full of gas and discomfort and fatigue and ... (many potential symptoms). When I cut out all the high fodmap foods, I stopped being bloated probably within seven days. I started to feel better all around - fatigue got better (admittedly, I also started taking iron supplementation), stomach felt better, etc.

If you google it, you can find out more info like which foods to eat and which not to. The idea is to take them out of the diet and then stabilize (hopefully get better) and then add them back one family at a time to see which families bother you. To be honest, I've felt so much better that I have not wanted to add any of them back in. So I pretty much eat low fodmap all the time and will probably continue to do so.

Something to consider.

Small bowel bacterial overgrowth is another one, but I do think also that high fodmap foods, in folks that are prone to poorly digest them, will contribute to that.

Good luck to you.

On B12 - a sublingual is just as effective as injections, at least the one I was taking. I as borderline deficient two years ago; then a year ago, after pounding some B12 for about 2 or 3 months, I was WAY OVER...and this was from taking sublinguals. They were called PERQUE I think, but anyway, I was glad to know they were working!

(I am working on anemia right now, and don't know if that was a contributing factor to the weird feelings I was getting - but I am getting much better on the anemia since I quit drinking tea w/i two hours of drinking, and starting eating red meat - veggie for 20 years!)

Funny. I've had several. They typically involve a family dinner where I eat bread. Then I realize, oh crap, i forgot I can't eat bread. For me there is never the sense that I thought something was gluten-free when it wasn't - it's that I just spaced out and ate bread. Then I worry in the dream how I will get sick, vomiting or crazy pooping. I typically stop having the dream before I find out, though in one dream I had the same worries but the only facility was an outhouse.

Ug.

I was the bloat queen, even years after going gluten-free, CF, SF, etc....everythingF. I finallly tried the low fodmap diet, and that has really helped. Sorry I don't have a link, but if you google it, you'll find out more...or even search this board.

Good luck.

Just a quick additional note. I have not had vertigo proper for a while now, but I do still get a sort of strange feeling like my vision is not quite right, I'm not totally balanced, slightly lightheaded etc. Last month I remember telling myself, hey, it's right around your period and you feel this again - watch for it next month. Sure enough, period came and feel slightly dizzy and strange. So that is something to consider as well. I don't think I'm getting glutened - had myself tested some time ago for antibodies and it looked like I was clean.

Anyway, just another sidenote. I'm going to look into the ataxia thing too, though. I definitely feel I have something neuro going on, but don't have the insurance to have it checked out. Taking iron helped it, and B12 helped it, but nothing seems to quite cure it.

Good luck.

Hi there. Just wanted to say that I had celiac as a kid (and still do, obviously) and my main symptom was always constipation, to the point of having blood in my stools frequently. Ug. I wish my parents had figured it out, and I'm so happy to hear you're on the right path! (Me? Diagnosed at 37 years old!)

Sherri

Hi

My husband started going to a foodbank in our neighborhood a few months ago. It is a once-per-month thing. Anyway, typically they don't let folks go through - they just give you a box (actually, many boxes) of food to last the month. My husband told them that I had Celiac and need to be gluten free, and they let him walk through. He got tons of Amy's soups and some Whole Foods stuff. Now he always gets to walk through. So I know it is really hit and miss as to what person you get, but hopefully you'll find someone with a kind heart who will let you walk through and look for gluten-free stuff.

And on a bigger note, shouldn't we be doing something about this in our communities? Like writing letters to our food bank organizations and such. I'm going to write a letter to the Oregon foodbanks and just ask that folks be educated that people with Celiac Disease and other food sensitivies may need to be able to choose their own food. And maybe volunteer at foodbanks to help sort food by intolerance? I don't kow, but this problem is only going to become bigger, as the economy is not improving quickly and more and more people are being diagnosed.

Good luck to you.

Sherri

I'm so glad to read your post. I am doing the low fodmap diet right now and it is amazing how much it has helped me. I've known for some time that rice bothers me (both digestively, and makes my teeth hurt [demineralization?]). I don't do dairy or soy, and didn't eat meat. But I've developed a bad case of anemia (undiagnosed) all the way to having my lips perpetually peeling off. So I've started eating beef, and I'm doing really well on it so far. Last time I tried it I did not do well - could it have been the massive pile of carmelized onions I put on top?

Anyway, it's great to hear about your journey -- oftentimes the people in our lives who are wonderful but don't totally understand think we're crazy for limiting what we eat so much. But they don't know what it is like to have our total quality of life messed up.

Thanks.

This is too bad!

I have this tortillas every morning and love them. They don't make me feel bad but if they do have gluten I will stop eating them.

Can anybody recommend another brand of corn tortillas that are indeed gluten-free and don't have any "unnecessary" ingredients (e.g. only corn, lime, water, salt). Thanks a lot!

Sara

Sara,

I suggest you buy Masaca Masa Flour. It says gluten-free and is also GMO free...I think. You have to make your own tortillas, but they are super good and it does not really take long once you get the hang of it. It is just corn treated with lime. We eat them all the time - no problems. You'll want to get a tortilla press, but they are pretty cheap. We used a wine bottle to roll them out before we bought one.

I've never really done an elimination diet or a real serious investigation into which grains do me the worst. I can say that rice, believe it or not, both bloats me and makes my teeth instantly hurt. Well, brown rice. Jasmine I can tolerate a small amount of but not for days in a row. Corn does not seem to bother me that much. You would think it would - storage grain (moldy), gmo (I try to get non-gmo), etc. Oats I tolerate like for one day, but if I eat multiple days, it can start to. For me it is more of a noticing how much better I felt when I was grain free in general - so I mostly just went with it. Plus, it fit into the raw food I was doing at the time.

I would just go easy adding in the fat of the paleo if you decide to go that way so your body can get used to it. You want to make sure you have enough stomach acid to digest the meat - you can look that up on google. I am just getting used to eating meat again. It has not bothered my lower digestion, but has caused quite a bit of gurgling in my stomach after I eat it. My anemia does not feel better at all yet - it's only been a week but I might have to succumb to supplements if I want to get out of this funk any time soon.

I think you're smart to realize that you're going to have to adjust any one else's diet to match your own body and your won life. I don't know if I'll keep eating meat - I keep having a yucky taste/feeling in my mouth and I don't think that's good, is it?

Good luck to you!

Hi all. Wondering if raw sauerkraut, which is made from cabbage, would be allowed on low fodmap. So far, low fodmap has really helped my bloating. I made a mistake with onions and it showed, and then yesterday I got bloated for a spell for no good fodmap reason....

Anyway, I'm also struggling with low iron so am adding meat back into my diet, but like to eat it with raw sauerkraut to help me digest it - any thoughts. Also, apple cider vinegar (to raise my stomach acid) - that's made from apples, but would a tiny bit be allowed?

I use Uncle Harry's products. You can find them in some food co-ops and health food stores, but they also ship from their location in Washington State. They are totally all natural. I especially like their tooth products, though not at all like regular stuff, i.e., don't foam (the thing that makes toothpaste foam is not good for you [sLS]). So if you're going for uber natural, check out Uncle Harry's. I also use Desert Organics shampoo and conditioner sometimes, though I like California Baby as well. We have really hard water here, so it's hard to get a lather on the natural products.

Good luck.

Hi. I was diagnosed over three years ago and have done almost every diet you can think of: paleo, body ecology, raw food - traditional, raw 80/10/10 low fat. Have gone nightshade free, grain free, bean free, fat free, salt free, soy free, dairy free, etc.

It sounds crazy, but I'm actually really glad I did all those diets over the years. They all have their good points, and I think having experimented with them is giving me stronger foundation to personalize a diet for me.

That said, I just started what is called a low fodmap diet. The idea is that certain short-chain sugars ferment in your body before they move through your digestive system, causing all manner of gas, bloat, stink, C, D, etc. What the diet proposes is that you cut out all of these, then add them back by family (fructose, sucrose, raffinose (beans), lactose, etc.) I've already found that quitting them did indeed cut my bloat - and bloat is pretty much the only symptom I have left from being gluten-free so long). I accidentally ate onion a day ago and boom, w/i 24 hours was bloated and stinky. So what you should end up with after doing this diet for a while (getting rid of all high fodmaps then adding them back, finding out which bother you), is the understanding of which sugars you don't digest well. YOu can either avoid them entirely, or use some tricks like only tiny amounts of something or adding glucose to something. It's an idea. It sounds like the things this diet talks about are things that you are experiencing. There are a couple folks on the board who have done this diet. Another diet folks on the board have done is the Specific Carb Diet. I have not done that one, as it relies on dairy more than I like, but lots of folks feel it works well.

But I can outline the benefits I experienced from each other diet I've done below.

RAW FOOD (traditonal): PRO: felt clean, easy digestion, regular poops, good poops CON: expensive, too fatty really, lost too much weight, can be really labor intensive to create "gourmet" stuff, puts you on the outside of regular folks - slightly isolating I guess.

RAW FOOD (low fat): PRO: always had accessible food (fruit), clean, know stuff is gluten-free, really hydrating CON: bloated and C (banana), expensive, weight loss, have to train stomach to eat large amounts at once in order to get enough calories - slightly isolating, though less so that regular raw since you're not making a bunch of raw food all the time, you're just eating fruit.

PALEO: PRO: no grains works best for me, and no beans; bloat went away for the most part, don't think I ever got my stomach acid up to snuff for digesting meat CON: expensive (I will only eat humane, local, and GRASS FED meat - anything other than that is like animal cruelty in my mind, and unhealthy), a bit on the acid side if you don't balance out the nuts and meats, nuts too hard to digest.

BODY ECOLOGY: PRO: this is a great diet to kill yeast, easy to prepare stuff CON: expensive (meat), not enough carb energy for me, yeast killoff can be intense if you have problems with yeast.

Remain free of: dairy, gluten, soy, sugar, grains (mostly)

Just checking that you are not coming off benzodiazapines.....I had to go on them temporarily a few years ago so that I could eat, but when I came off them, I had horrific nightmares. Probably not your case, just thought I'd mention it.

One thing you can try, I've read this someplace, is write down your thoughts and worries and stuff before going to bed at night - have the paper and pencil right there at your bed. Write them down and then put them aside, knowing that the paper will keep them for you all night until you wake up. You have every right to worry about that stuff on the list the next day, but try really hard to just put it all in that lockbox before you go to sleep.

Another thing to check out is Chinese medicine on this. I know they have all sorts of ideas about how you wake up, when you wake up, etc. And there might be something there to work with.

Lastly, if you are eating anything before bed, quit doing that. Or drinking anything. Whatever it is you do before bed if it is food/drink related, don't do. Switch it up.

Good luck to you.

I second the B12. I imagine they tested this in the hospital, but even it is marginal, I'd sign up for a shot or two of it, if you have insurance, or a good sublingual. I used this stuff called Peroq, and I KNOW it worked because I got my B12 up to like 2X the "max" amount. (I was glad to know it was working...but obviously cut back from the 4 a day I was taking.) I was taking so much because I was having dizzy, disconnected, strange brain problems.

But I wanted to say that prior to going gluten-free, I had terrible anxiety attacks. Since getting off it, I literally have zero. Now that's me, and obviously everyone is different. I was also off soy and dairy, since I knew they bugged me.

Minerals are important for anxiety - I just don't know. Do make sure you're totally gluten-free - lotions and potions, foods, cross contamination, etc. And then look at your labs - how is your B12. By the way, if your B12 is on the cusp, you might request an MMA test. This is a better indication of anxiety.

Iron deficinecy is another one. I'm sure they tested for it, but you should get your records and look at your results. IF they are on the cusp, consider tryin Floradix, which is an iron supplement that is gluten-free and does not give constipation. Make sure on this one you're deficient though, as you don't want to get too much.

Good luck! Talk therapy helped me too -- it was definitely diet related, but the two years I spent in talk therapy helped me make sense of why my anxiety manifested the way it did, and taught me some coping skills.

I feel I could have a PhD in Constipation. I have been diagnosed just over 3 years, but have had active C type celiac disease since I was like two or something. I mean I have not asked my mom about my diapers, but I remember all through childhood having INTENSE gas pains and not pooping for days and days at a time. Also, and this makes me sad just to think about since my parents didn't have enough information to understand to be worried, I kept thinking I was starting my period, even when I was really young, because I was getting fissures - that's how rock solid this poop, when it finally did come out, was. Why on earth and I putting in this preamble.

Anyway, I'm going to list the main things, most of which you've already done no doubt, but just to cover all the bases.

1. drinking a gallon of water a day might be demineralizing your system and straining your kidneys. That's a lot. There's quite a bit of new research showing the whole "drink a ton of water" idea to be a bit overblown. If you're thirsty or get a ton of activity or are hot and sweating a lot, it makes sense. It does sound that you are adding back magnesium, but it's possible you've got other mineral loss that could be causing problems.

2. Vitamin C. I've never done this, but folks say that you can up the dosage of Vt. C until you get D, then back off it. Like I said, I've never tried it.

3. Trifal. This is an Indian herb, only slightly laxative in quality, but helps regulate and heal the intestines.

4. Consider quitting dairy. This is A#1 for me - one teaspoon dairy, a week of C without fail.

5. Is the diet getting enough of the 3 requirements: bulk (fiber), grease (fats/oils), water (we know you are on this one)

6. Walking. There are also yoga exercises specifically for this.

7. Self massage of the lower back and abdomen. I've actually found if I'm sitting on the john and am having some trouble getting things started, putting both hands on my spine and pushing down and toward my hips. This can actually get me started when I'm sitting there wondering if it'll be bust again. I hate these good for nothing visits to the throne.

8. Consider a low fodmap diet. You can google this. It has to do with fermentable sugars that your body isn't tolerating. I'm having good luck (just doing for about a week now) with it lowering my bloat. I have actually been more constipated, but I think that's in part due to the fact that I lost (temporarily) some of the veggies I normally eat.

9. Magneseum. -Sounds like you've tried this one. I never have, but I hear it helps quite a bit.

10. If you eat bananas, consider dropping those for a spell and see if that's it.

11. Amaranth for breakfast. I mean hot cereal amaranth. It made me uber regular.

Well, I don't know if I got most of the ideas, but I think so. I hope you feel better. C sucks. Going poop every day rules!