Aly1

Thanks!

Do you normally react to small amounts of gluten? I ask bc their rep got back to me and said that while there aren't specifically any gluten-containing ingredients in their Allergy c caps, they "can not guarantee that they are not processed in a gluten-free facility". I was going to avoid those based in that description...

I need supplements that are free of gluten (obviously!), corn, dairy and sugars. I specifically need a multi, vitamin C and echinacea. Has anyone heard of supplements that would fit the bill? I'm so frustrated looking everywhere

I am too tired and brain fogged to read through the scientific description of various DH types that's pinned to this board! My 3 yo gets really angry-looking red areas of inflammation that have tiny red dots - usually just a few compared to the size of the inflamed itchy area. They never break open, only if she's happened to scratch one open. They do not seem p%$#@# at all, just red dots. We'd thought it was a reaction to something in our old apt but today she again has a patch on the back of her hand, and we moved a month ago.

We took her gluten-free 1 week ago, and yesterday, day 6 of gluten-free, my hubby forgot and let her have a slice of pizza. :/ When she woke up this am she was complaining about her hand. It does itch but is NOT driving her to distraction as I would expect DH to do. So it probably isn't that but I thought I'd ask here just in case...

Thanks!

I am wondering if this happens to anyone else. When you get glutened, soyed, corned, caseined, etc. during the month, do you find that your period that month is more painful and heavy. When I haven't had any reactions to my offending foods, my periods are much better.

Thanks!

Also, what works best for the pain?

One of my sensitivities is gums like guar gum and xanthan gum. I did not know this and for a month straight was regularly eating a couple of new gluten-free products that contained them; a week before my period I swear my breasts swelled up over a cup size and were incredibly tender (I had to sleep in my bra!) and was bloated and crampy and uncomfortable during my period. This was in sharp contrast to the several months before where I was gluten free and experiencing minimal symptoms. So in answer to your question, a resounding yes!

As for how to deal with the discomfort? I use Aleve for cramps (always on a full stomach, it can chew it up in there if your stomach is empty). I start with 2, per label instructions, then follow up with one at the appropriate interval (can't remember if it's 6 or 8 hrs). That's what works best for me.

Hmmm, maybe!

And really, what self-respecting PhD celiac researcher is going to waste time on a controlled study of residual gluten in a microwave.

Lol!

Yes again and again! I would like to know how it's, even remotely possible, for invisible gluten particles, propelled through the air in a microwave can be deposited into a cup of coffee and make someone sick. SHOW ME THE PROOF! Ya can't, there is none.

I actually find the microwave theory interesting. IF it were true, and someone would have to test to find that out - theoretically, you know how with some things that you heat make the insides of the microwave a bit wet with condensation; if moisture can rise up out of the food, then perhaps small particles of food might also; then when the next person uses it to the point of condensation, cc might happen as was suggested above? I just put that out there as a theory as to how it might occur. I have no research at all to back that up and it's not even an opinion. . Maybe someone with test strips can press one up on the microwave walls after doing a big slice of pizza or something .

Yes again and again! I would like to know how it's, even remotely possible, for invisible gluten particles, propelled through the air in a microwave can be deposited into a cup of coffee and make someone sick. SHOW ME THE PROOF! Ya can't, there is none.

Just because there is no current research / "proof" that something happens, that doesn't mean it doesn't. The poster was just saying, "hey, I stopped doing this and I felt better, something to consider." To me, that doesn't require proof as she was relaying a personal experience and not trying to pass it off as known science.

Remember, as recently as 2008 there was no PROOF that people without celiac were getting sick from gluten - but that didn't mean it wasn't the case!

Interesting stuff, Aly. I notice Wikipedia mentions that einkorn may not be as toxic to folks with celiac and gives a reference to this super-interesting study. They took a biopsy from people with celiac disease and exposed it to modern wheat or einkorn. There was only a reaction to modern wheat. Open Original Shared Link

Spelt is old too, and supposedly kamut is, but both are toxic to celiacs. That gives me trouble with the whole "modern wheat is bad, old wheat is good" idea. Same with my friend's wild Triticum grains. That was not cultivated stuff or even wheat, it's natural grasses where she collected grain to eat for fun. (Turned out to be not so fun.) I wonder if einkorn is just different enough to be safe, like oats.

Okay so it took me a while to find his reference to other grains because his book is about wheat so it was a buried in there. Here's what he says as to why he doesn't address other grains:

"Of all the grains in the human diet, why only pick on wheat? Because wheat, by a considerable margin, is the dominant source of gluten protein in the human diet."..."most people don't each much rye, barley, spelt, triticale, bulgar, kamut, or less common gluten sources; wheat consumption overshadows consumption of other gluten-containing grains more than a hundred to one."

I don't know if I really agree that things like rye aren't consumed a lot, but I guess I agree that wheat would still "win" by a fair margin given how so many processed foods use wheat as an additive. So it would seem that he based his research on this only - and he delves pretty deep with it; if he had investigated the background of all those grains it would have been quite the fat book! .

I hope you read it, I'd love to hear your thoughts on what he says!

Have you added any supplements that might have ingredients that contain stuff you have problems with? If not, I think I would probably do a strict elimination diet at this point...

With due respect, I have not seen any credible source that microwave circulated air could cross contaminate anything, unless gluten drippings from the top of the micro would drop into your food or drink.

L

Has anyone found any primary sources that indicate that shared microwaves are not safe for those of us with Celiac? I think there is no substantiation, just anecdotal theory. I share a kitchen, without issues.

Ugh here we go again requiring research backup for something, something that was clearly *supposed* to be anecdotal. The poster didn't say "gluten in microwaves can make you sick - she said "I discovered I got sick from a microwave". Very good info to pass on and something that others can decide if they want to try or not try. A LOT of what is said on celiac.com forums can't be found in current research, but that doesn't mean it isn't valuable info!

Hmmm, I am curious about this sulfite load concept as I recently discovered problems with onions, garlic and now potatoes; we had a roast with potatoes and my stomach bloated out right away. Didn't get the connection but the next day I had the left over roast potatoes and within a half hour my ears were ringing so loudly. This ear ringing thing has been coming and going for the past two months (it's really loud!) but I hadn't been able to associate it with anything I was eating until now. I have issues with corn so I thought that maybe it had to due with the way potatoes are treated with a corn-based spray to stop sprouting...but maybe its sulfites (?).

Interesting stuff, Aly. I notice Wikipedia mentions that einkorn may not be as toxic to folks with celiac and gives a reference to this super-interesting study. They took a biopsy from people with celiac disease and exposed it to modern wheat or einkorn. There was only a reaction to modern wheat. Open Original Shared Link

Spelt is old too, and supposedly kamut is, but both are toxic to celiacs. That gives me trouble with the whole "modern wheat is bad, old wheat is good" idea. Same with my friend's wild Triticum grains. That was not cultivated stuff or even wheat, it's natural grasses where she collected grain to eat for fun. (Turned out to be not so fun.) I wonder if einkorn is just different enough to be safe, like oats.

Very interesting...I haven't returned the book to the library, and now I am curious as to what he says about spelt and kamut...I think he might have said something but I would probably have glossed over it. If he says anything interesting I'll post it .

People with celiac disease absolutely react to kamut, spelt, and other ancient grains, and they have plenty of gluten. What he did is interesting but it's obviously not generalizable. I have a friend who is a gluten-intolerant botanist and she even reacts to wild triticae grains she's collected. I haven't read the book to comment further.

The author (which I see is William Davis MD) says "triticum species of today are hundreds, perhaps thousands, of genes apart from the original einkorn wheat that bred naturally." The wheat he used for his "test" was the einkorn wheat grain. He got it from a woman who's the founder of the Heritage Wheat Conservancy (www.growseed.org). I should go look that up, I wonder if anyone can order it or if she just provided it for his personal research. Anyway it apparently is totally different species of wheat and modern wheat comes from a different species. Supposedly you can't even create our modern-day baking feats (think croissants, cakes, bread as we know it) with the stuff, those qualities have been bred into various types of grains.

Just to clarify, the author's point isn't that high levels of gluten are causing issues, but that current-day wheat has been genetically altered to produce pest resilience, fast crop growth etc etc., to the point of causing problems with human consumption. In his opinion, small changes in wheat protein structure spell the difference between "a devastating immune response" vs no response at all. I should have made that clearer given the context of the ongoing discussion here.

I agree wholeheartedly with GFinDC. I've been gluten-free for five months but am only just getting hints of feeling better, after discovering other food issues. Corn is a big one for me, and although I'd removed it from my diet, I didn't follow through with ensuring that my supplements were corn-free. Just this week I stopped all my supplements as a test and noticed quite an improvement. I recommend looking for other things that might be making you feel lousy...I hear it's common for people with gluten issues to have other issues as well...

Oh, I suspect a lot more than 1% would be helped (based on what I read in Wheat Belly). But these grains are so entrenched in our culture that I don't think much is going to change. I bet in the end everyone would just take Glutenease rather than give it up!

I know this post hasn't been active for a week but I have to say, I have been quite swayed by reading "Wheat Belly" (can't recall the author - a physician - but it is a current NY Times best seller so it shouldn't be hard to find). He discusses the changes in wheat through selective breeding etc and how in the last 50 years wheat has changed *dramatically*, and illnesses that appear to be linked to wheat consumption have also risen dramatically during that time. We are NOT eating the same wheat our grandparents were.

The author had a gluten intolerance, and discusses a test he did on himself; he got ahold of some "original" wheat, apparently very hard to find but he found a source, and ate some bread made with that, and had no reaction. Then he had bread made with identical ingredients except for regular current-day wheat, and he got totally ill. Anecdotal, yes, but I will assume he wasn't lying for the purposes of dramatic effect.

I highly recommend the book, it has changed my perceptions of how we are handling our food supplies in this country... I can't remember the sub-title to the book, but it really makes it sound like a diet/weight loss book - I guess he did that to sell more copies - but it is an excellent read and should not be mistaken for diet fad fluff.

I eat Aldi's version of brown minute rice about once a week. I eat Koala Crisp cereal every day though. It's made from Organic brown rice flour.

I swear..no food is safe to eat!

You're doing better than me, I eat it 1-2 times a day 6-7 days a week!! And we thought brown rice was healthier. Whatever. If I cut one more thing out of my diet, I swear I will disappear.

I've been where she is and I know what it's like to be getting worse and worse and fear what might happen next. My heart goes out to her.

By the way, can I ask a weird question? Is there any chance that there are things in your environment that are contributing to your illness? I ask this because for me it's not just that I was eating gluten (and other allergens for me) all these years, but I have been living in an apartment with a serious mold problem. Dr. Bolte is convinced that that is playing a big role in keeping me sick. (We are really trying to find a new place but wheelchair accessible housing is a problem...)

I ask it only because I imagine it's one of the things he would be thinking while dealing with you. When people get as sick as we are "for no reason" that docs can find, there are usually several different things that are causing it.

Anyway. If you were able to come out this way, I'm sure my hubby and I could help pick you up at the airport and get you to your hotel (we live in a 1 bedroom with a 2 year old so I can't offer you a place to stay. Besides as I said it's moldy!). I don't have a lot of energy so would rely on hubby's help, and he is only available on weekends. But Dr. Bolte takes weekend appointments. Anyway. I know you are nowhere near contacting him or anything, but just to let you know if you were coming out this way I'd offer whatever help we could give.)

Thanks Aly. I'm quite a ways from NYC, so I don't know how it would work with your Dr. "House"?

It scares me that I'm not getting any better..and they don't have any answers. Traveling was difficult, even though I used a wheelchair in the Airports.

Some of the tests at Mayo were scheduled for dates that they knew I wouldn't be there for. We told them how long our stay would be. Most of them I went on "walk in-stand by", (where they'll squeeze someone in if someone is running late or miss their appointment). To do that a person has to be at the test site and just sit and wait...for hours sometimes.

I was able to get everything done but meeting with a Neurologist. The fact that my brain is getting spacy and sometimes I lose my balance and stagger to the side a few steps has me pretty nervous.

Apparently my doc - Dr. Thomas Bolte - can treat by phone or email but you do have to travel to NYC for the initial consultation (required by malpractice laws I believe).

It sounds like Mayo dropped the ball in a number of ways with getting you in quick to see them, which just sucks when it's a one shot deal. I'm sure when they got to the end and they didn't have any answers you must have wanted to cry (I did). Someone out there has got to be able to do something for you!

I've been waiting for you to post and wondering how things went. I'm so sorry they were not able to give you any answers. I know how that must make you feel, you were at your wit's end before going. Sigh.

I've said this to a couple of others - I have a good doc in NYC who specializes in medical mysteries, if this next doc doesn't work out. He's not a god but does not give up and says he has a success rate for helping people of 95% or so. I would be happy to pass his info your way.

I'm sad for you that you are no closer to feeling better than before you went to Mayo. Hugs.

PS re the NYC doc. He is required to see you in person one time but then can treat from a distance, fyi.

I am a self-diagnosed Celiac, based on family history, my symptoms, and the fact that the gluten free diet got rid of those symptoms. And then the other intolerances hit. It's pretty hard not to get corned - it's in everything,even whole foods like potatoes, bagged salads, and a lot of other things. And because I have this jaw problem (as yet undiagnosed by any of the dozen or so doctors and dentists I have seen), I had been "corning" myself with painkillers.

Hi,

I've recently discovered I have a real problem with corn too, so I need to ask, how is it in potatoes? And have you found painkillers that don't have any?

Thanks!

I've been using Clinique Long Lasting Lipstick in Bamboo Pink for many years. It's a great color for me. But I just found out it has gluten in it!! The last time I wore it, I noticed that it made my lips a bit chapped. So I think I was reacting to it and should stop using it

Does anyone else wear that color, and have you found a good substitute for it? I just don't have the energy to start lipstick shopping. I'm hoping that someone else on this forum has figured this out.

Thank you!

Baagh! That's my favorite lipstick, now I have to toss it (I only wear lipstick every once in a while and haven't since I went gluten-free.) Glad you posted. Do post again if you come across a good substitute, please.

He's right. (i do not often say that about a doctor! )

And the Mayo Clinic reports:

For adults, the recommended upper limit for vitamin C is 2,000 milligrams (mg) a day. Although too much dietary vitamin C is unlikely to be harmful, megadoses of vitamin C supplements may cause:

Diarrhea

Nausea

Vomiting

Heartburn

Abdominal cramps

Headache

Insomnia

Kidney stones

However, the Linus Pauling Institute does confirm that overdosing on vitamin C does not cause dangerous toxicity, and you should not have any lasting effects. Any symptoms you may develop from high vitamin C dosages should go away when you stop taking supplements.

But this study was more disturbing, which in part reads:

"The finding, published in the current issue of the British journal Nature, corroborates warnings that have been issued for decades by an American physician, Dr. Victor Herbert, professor of medicine at the Mount Sinai School of Medicine in New York. Dr. Herbert has shown, primarily through laboratory studies, that vitamin C supplements promote the generation of free radicals from iron in the body.

''The vitamin C in supplements mobilizes harmless ferric iron stored in the body and converts it to harmful ferrous iron, which induces damage to the heart and other organs,'' Dr. Herbert said in an interview.

''Unlike the vitamin C naturally present in foods like orange juice, vitamin C as a supplement is not an antioxidant,'' Dr. Herbert said. ''It's a redox agent -- an antioxidant in some circumstances and a pro-oxidant in others.''

In contrast, vitamin C naturally present in food, he said, has no oxidizing effects.

Vitamin C supplements in large doses have been linked to genetic damage as far back as the mid-1970's."

The full article is here:

Open Original Shared Link

It is best to get vitamins/minerals from FOODS, but until absorption is improved, we all may need some supplementation. But it should be the right ones and in the right amount.

After that, too much of any supplement, is just a waste of money and can cause more harm than good. I speak from painful experience and having spent thousands of dollars (pre- DX) on suggestions from alternative and functional med practitioners on things that did nothing except create more digestive issues, assorted neuro symptoms and lighten my wallet.

IMHO

Baaagh! Now someone tells me. I have been taking tons of vitamin c for YEARS. Insomnia has been a major issue for me for years. Sigh. Just goes to show that all the online reading you do does Not make you a physician .