http://www.celiac.com/gluten-free/index.php Mon, 20 Feb 2012 09:25:30 +0000 60 http://www.celiac.com/gluten-free/topic/90122-how-to-cope-better-with-being-a-super-sensitive/
I believe I am more sensitive than most, since I think they were pretty conscious about their preparations at Chang's and my fairly CC sensitive boyfriend is just fine--although he did eat different dishes than I did. All I had was the salmon, made by steaming. I had it plain with no spices and some brown rice in its separate bowl. They insisted on adding something however so I relented and said some steamed cabbage and leek were fine (I am also salicylate sensitive and can't eat most spices and many vegetables etc.).

Having another migraine again is not fine however.

Its also very possible I picked up some gluten from holding my mom's arm and hand and helping her use the bathroom a couple of times. She uses those pull on things that are the adult equivalent of Pampers. At the end of the day I had to help change her out of her pants and into a new pull on before putting the pants and shoes back on. So definitely I could have gotten something from that maybe.

I tried to be conscious and washed my hands afterwards each time, as well as before I ate at the restaurant.

I wasn't as sensitive as I am now a year and a half ago. But now that I am off the salicylates too, plus took care of my mother and brother for roughly 3 months in late 2010 through the beginning of 2011, I got glutened too many times and lost a lot of my ability to cope with cross contamination.

I was already one of those who could not tolerate using a microwave that has previously been used for heating up gluten. In 2007/08 I got ill from kissing an old boyfriend who drank distilled whiskey when I first went 100% trace gluten free. I definitely get ill from using a shared oven. I cannot tolerate using a bathroom in a restaurant where they prepare wheat items from flour. I got very ill after walking through my Mom's kitchen when they were making wheat pies in the fall of 2008. I get sick at work if I don't use a mask and we are handling fresh plaster sheetrock, vinyl floor glue, fix-all, house paint etc.

I use nattokinase and acidophilous and some salicylate safe digestive enzymes daily on an empty stomach to help heal the intestinal villi scar tissue. Lately I have also been eating a lot of my home made plain yogurt I ferment 24 hours to get rid of all the lactose, as well as to increase the probiotics. I also make home made sauerkraut using cabbage, garlic and leeks, using a whey starter from the yogurt I make. All really help me feel good. And I do recover from my headaches, sinus congestion and body aches a lot faster than I used to after getting CC'd from gluten. I also don't get the diarrhea I used to.

However these episodes of cross contamination from gluten seems to occur now at least once and sometimes twice a week. It is definitely eating into my quality of life. I seem to be stumbling along between episodes of late. My night owl proclivities naturally have increased since sleeping has once again become more difficult, despite my epsom salt baths, almost daily walks, yoga etc.

Mostly I don't even go over to my mother's place anymore since they do eat wheat there and I am bound to get ill if I venture over there 9 times out of 10. I hate the fact I have to be so distant from them, but my mother is 97 and I will not get her or others there to change their ways. I am strongly considering wearing a heavy duty mask over there if I do go over. But mostly I honestly don't want to even be there under those conditions. It is just too humiliating.

Nevertheless, even without going there or hanging out with them, I still manage to have problems. Using common bathrooms, using doorknobs and rubbing shoulders at stores to buy supplies, go to art exhibits or poetry readings or take classes where people do use gluten which can be anywhere anytime USA.

I don't want to be a hermit. What suggestions do you have??

Don't tell me I am nuts since I know I am not. Even despite all this annoying sensitivity, my health is so much better now than it was there is no chance I will ever go back to eating gluten again.

Bea]]> Mon, 20 Feb 2012 09:25:30 +0000 http://www.celiac.com/gluten-free/topic/90122-how-to-cope-better-with-being-a-super-sensitive/ http://www.celiac.com/gluten-free/topic/90085-does-super-sensitivity-exist/
The full document can be found here:
http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf

I will highlight some of the stuff that has interested me, and I am curious what things may have stood out to others with regards to the existence of super sensitivity.

On page 12, it summarizes this FDA Health Hazard Assessment of May 2011 as, “A survey of the available published literature that included dose-response information on the adverse health effects of gluten (or toxic protein derivatives of gluten) in individuals with celiac disease was conducted.”

Since the surveyed articles talk about mg of gluten per day, it has helped me to consider what that means in a PPM setting. For example, I often consider the study used to support the proposed 20 ppm labeling law: Catassi C, Fabiani E, Iacono G, D’Agate C, Francavilla R, Biagi F, Volta U, Accomando S, Picarelli A, De Vitis I, Pianelli G, Gesuita R, Carle F, Mandolesi A, Bearzi I, Fasano A. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Am J Clin Nutr 85: 160-166, 2007 . In this study 10 mg a day were found to be tolerated by most of the study participants. They considered how much of these foods someone might eat, and proposed that a concentration of 20 ppm would be safe. So 10 mg a day would correspond to a 20 ppm safe level for gluten free foods.**

But I think that there remains the question, are some individuals sensitive to lower levels than the 20 ppm "safe" level that has been defined by this study? In the FDA's Health Hazard Assessment of May 2011 (FDA HHA), on page 28 they state about the above described safe threshold study, “Also, it appears possible that the most sensitive celiac patients were not considered for analysis in this latter study, because those with any initial small intestine mucosal abnormalities after a one month pre-challenge strict GFD period (n=4 subjects), and a few subjects that experienced acute clinical symptoms in response to the gluten challenge, were excluded from consideration."

And the paper itself says this: “One patient challenged with 10 mg gluten/d showed typical signs of relapse (vomiting, diarrhea, and abdominal distension) after 6–8 wk of microchallenge but refused to repeat the t1 evaluation. “ It seems clear to me that some celiacs may not tolerate 20 ppm foods.

In this next study a daily dose of 1.5 mg gluten/day was found to cause a reaction in some participants. If 10 mg/day being tolerated relates to 20 ppm being safe, then 1.5 mg/day not being tolerated would relate to 3 ppm not being safe for these very sensitive individuals.

This study by Chartrand L, Russo PA, Duhaime AG, Seidmain EG. Wheat starch intolerance in patients with celiac disease. J Am Diet Assoc 97(6): 612-618, 1997, was also considered and on page 30 of the FDA HHA states, “they underwent a gluten challenge of 1.5 mg gluten/day” and “2 of 17 adults diagnosed as having celiac disease by ESPGN criteria reacted with adverse clinical effects to a gliadin challenge within an acute time period.” Page 31 of the FDA HHA further decribes that, “onset of adverse symptoms occurred within 1 to 3 months of daily consumption of portioned amounts of the test food products in 11 of these challenged subjects.”

And another study considered found reactions with 4 mg gluten/day. Again, if 10 mg gluten/day being tolerated corresponds to 20 ppm being safe, then 4 mg gluten/day would correspond to 8 ppm not being safe. From Ciclitira PJ, Cerio R, Ellis HJ, Maxton D, Nelufer JM, Macartney JM., Evaluation of gliadin-containing gluten-free product in coeliac patients. Hum Nutr Clin Nutr 39C: 303-308, 1985, “the LOAEL for clinical adverse effects was as low as about 4 mg gluten/day.”

And then there is the case study that found symptoms with only 1 mg gluten per day for a very sensitive individual. Again, if 10 mg per day being tolerated related to 20 ppm being safe, then 1 mg per day not being tolerated may relate to 2 ppm not being safe for some. Page 34 reports on an “estimated intake of approximately 1 mg gluten per day. While clinical and other physiological adverse effects of gluten exposure resolved on this “strict” GFD, multiple duodenal mucosal biopsies during this time showed an elevated number of IELs and persistent severe VA (classified as Marsh 3), along with levels of a few, but not all, celiac-related antibodies (e.g., TTA, tissue transglutaminase; IgG AGA, anti-gliadin antibodies) noted as “borderline.”" That is from Biagi F, Campanella J, Martucci S, Pezzimenti D, Ciclitira PJ, Ellis HJ, Corazza GR. A milligram of gluten a day keeps the mucosal recovery away: a case report. Nutr Rev 62(9): 360-363, 2004.

There is also the case study where the reaction would relate to 3 ppm not being safe. As “an exposure of 10 mg gluten (one time) per week, or if averaged over a week, it would reflect about a 1.4 mg gluten exposure per day” where “an intestinal biopsy revealed the presence of “partial villous atrophy.”” This one is by Scotta MS, De Giacomo C, Maggiore G, Siena S, Ugazio AG. Eucharistic problems for celiac patients. N Engl J Med 307(14): 898, 1982.

It seems that the research indicates that there ARE people who are sensitive well below a 20 PPM threshold. I find it fascinating that with these indications of adverse reactions by some celiacs to well below the "suggested safe" level of 20 PPM that there are not more who advocate for lower thresholds of detection.

LOAEL = lowest observable adverse effect level
GFD = gluten free diet
IEL = intraepithelial lymphocyte cell count
VA = villous atrophy

**As a tangent, I still wonder about these "safe quantity" restrictions, and I appreciate the food consumption estimates section that starts on page 35.]]> Sat, 18 Feb 2012 15:37:22 +0000 http://www.celiac.com/gluten-free/topic/90085-does-super-sensitivity-exist/ http://www.celiac.com/gluten-free/topic/89935-for-those-who-are-grain-free-and-low-to-no-beansnuts/
I've figured out what has been causing the headaches, it's been tested and confirmed by the doc, and it may be of some relevance for super-sensitives, so I pass it along.

I am severely molybdenum deficient. This is pretty rare, I understand, because humans don't need much of this and we get plenty in our usual diets. However, grains, beans, and nuts are some of the main sources in our diets, so for those of us who have little to none of these, we may run the risk of becoming deficient in this mineral. For example, my headaches started worsening when I dropped legumes due to allergy issues.

Molybdenum levels are not usually tested for (rare and all), so it's unlikely to be discovered unless you ask for the test.

The reason it can cause issues is because molybdenum is needed to create Molybdenum Cofactor. This is used to make 3 important enzymes: sulfite oxidase, xanthine oxidase, and aldehyde oxidase.

Sulfite oxidase converts sulfites to sulfates, so without it, you will become mildly to severely sulfite intolerant/sensitive. Which can be a problem for, say, water with high sulfite levels, many processed foods, many injected medications, eggs, garlic, onions, and more.

Xanthine oxidase is used to metabolize purines, which can be found in many fish, organ meats, beef, and others.

Aldehyde oxidase takes care of aldehydes, which are organic compounds that add the scent for many volatile essential oils, such as what we might find in herbs.


With all three of these depending on molybdenum cofactor, a molybdenum deficiency can have a broad effect. And as I said, with many of us super-sensitives going grain free, and often legume and nut free, it's may be difficult to get enough of this mineral unless your water supply has higher levels. So for anyone getting headaches or other problems with bottled water, injected meds, or a wide range of foods, it might be worthwhile to ask to be tested for this.

I haven't seen any signs that this affects super-sensitivity in and of itself, but there's a little part of me that's crossing my fingers and hoping. If my body's sensitivity levels could chill the heck out once I get my molybdenum levels back up, that would be AWESOME. :D I'll let ya'll know how it goes.


A warning!
If anyone suspects this could be an issue, please check with a doctor and get tested. Supplementing for this vitamin when you are not deficient can be dangerous, because Molybdenum toxicity is a definite risk. It doesn't take much to reach levels that are too high.]]> Tue, 14 Feb 2012 01:55:50 +0000 http://www.celiac.com/gluten-free/topic/89935-for-those-who-are-grain-free-and-low-to-no-beansnuts/ http://www.celiac.com/gluten-free/topic/89913-so-delicious-coconut-milk/
Also, do any of you bake with coconut flour? Any good brands out there?]]> Mon, 13 Feb 2012 17:38:21 +0000 http://www.celiac.com/gluten-free/topic/89913-so-delicious-coconut-milk/ http://www.celiac.com/gluten-free/topic/89823-canyon-bakehouse/ Has anyone tried their products? Right now I eat Udi's bread and I really love it. But the store I shop at here has a bunch of canyon bakehouse prodcuts they rave about and their cranberry muffins look SO good and I've been eyeballing them for months. But I haven't gotten them because I saw someone on this forum saying that they aren't trustworthy or certified (even though it says they are?) and saying they got all sick from their products and stuff and they sounded pretty pissed... so idk which is true, are they safe or not safe? They look good and I'm tired of just wondering... ]]> Fri, 10 Feb 2012 19:59:58 +0000 http://www.celiac.com/gluten-free/topic/89823-canyon-bakehouse/ http://www.celiac.com/gluten-free/topic/89789-feeding-pets/ Thu, 09 Feb 2012 19:07:44 +0000 http://www.celiac.com/gluten-free/topic/89789-feeding-pets/ http://www.celiac.com/gluten-free/topic/89627-need-updated-info-having-difficulty-with-broths-soups-etc/ Okay so I need some updated information because I keep finding outdated stuff.

I'm like the most anal person ever about what I eat since I'm supersensitive, and I'm very hesitant to trust things that say gluten free as I've gotten burned from CC, and I know I absolutely cannot have Amy's, Bob's Red Mill, Pamela's etc. and almost nooo mainstream products claiming to be gluten free. Well, the ONE time I don't check something 10x before eating it and research the company, I get sick. It was those stupid Food For Life brown rice tortillas, which I found people talking about on these forums and realized that THAT'S why I'd been feeling great and suddenly started having all these crappy symptoms and feeling like I was dying for a few weeks. I'd been going through packs of those like crazy. Just my luck. So now I'm trying to recover, and once I get glutened I'm on my death bed for weeks... I am starving and I look like a skeleton, and I need food. I saw a lot of good things on mccormick bouillon cubes and wondered why I cannot find them anywhere, then saw on their site that they were discontinued...

So basically I need things to eat while sick and trying to heal, and I would like soup type stuff because I can't take anymore onion and garlic water ugh. Anyone know of good broths and things that have NO possibility of CC that could make me feel a little better? Or anything at all? I keep finding old information and topics from years ago.]]> Sun, 05 Feb 2012 20:11:18 +0000 http://www.celiac.com/gluten-free/topic/89627-need-updated-info-having-difficulty-with-broths-soups-etc/ http://www.celiac.com/gluten-free/topic/89307-tea-super-sen/ I was a Twinings tea drinker until they removed all of their gluten free labeling and info off of their website. Under the allergen info, it doesn't say anything about being free from wheat and barley in their big list of allergens. It did it the past. The reason that I checked is b/c I am coming off a glutening and wanted to make sure.
Which teas are you ok with? Luzianne says gluten free on the box. I was thinking of trying that.]]> Thu, 26 Jan 2012 00:06:42 +0000 http://www.celiac.com/gluten-free/topic/89307-tea-super-sen/ http://www.celiac.com/gluten-free/topic/89264-gluten-free-society-gene-test-for-non-celiac-gluten-sensitivity/
I am contemplating getting this test done. From what I have been told by my practitioner (here in the UK), it is supposed to tell you if you have sensitivity to non-gluten grains gluten - ie. the glutens in corn (zein) and rice (oryzenin), for example. The gluten free society, which appears to provide this tes, argues it is sensitivity to the glutens in these other grains which may prevent healing in celiacs on a traditional gluten free diet.

I just wondered if anyone has done this test, or has any thoughts on it? I am struggling to find any real evidence of how the test works, but am basically very keen to find out if it is really safe for me to eat rice or not. Corn I can probably live without.

I did a year on the Specific Carbohydrate Diet, which has definitely helped healing, but I am keen to expand my foods back now, especially as I think I am developing salicylate and amine sensitivities through the restricted diet.

The other thing I wonder is whether it would just show that - yes, I have another gene which may cause sensitivity to the non-gluten grains - or may not. Because of course around 30 - 40% of the population apparently have at least one of the celiac genes, but it doesn't necessarily mean they go on to develop celiac disease.

Thank you so much for any knowledge / thoughts on this.

Best wishes,

Carolyn]]> Tue, 24 Jan 2012 21:24:53 +0000 http://www.celiac.com/gluten-free/topic/89264-gluten-free-society-gene-test-for-non-celiac-gluten-sensitivity/ http://www.celiac.com/gluten-free/topic/89229-has-anyone-been-glutened-from-gluten-free-chicken-broth/ Mon, 23 Jan 2012 23:33:00 +0000 http://www.celiac.com/gluten-free/topic/89229-has-anyone-been-glutened-from-gluten-free-chicken-broth/ http://www.celiac.com/gluten-free/topic/89185-also-corn-product-infochips-especially/ Sun, 22 Jan 2012 18:56:42 +0000 http://www.celiac.com/gluten-free/topic/89185-also-corn-product-infochips-especially/ http://www.celiac.com/gluten-free/topic/89183-any-bean-info-that-you-can-give-me/
I just made white chicken chili for my family for tonight, and I'm afraid to try it. I need to hear reactions and brands from the super sensitive group!!!!! I also used King Arthur Flour...not sure about that either. It is the weekend and I cannot call for testing info, so I hope that you all can help me? I am also looking for tasty bean dishes that do not include dairy or soy or corn. I am still not able to eat those plus potatoes. I have not tried peppers or tomatoes since they are also nightshades, but might be willing to try. I have not tolerated any kind of vinager, but might try again. I am looking for safe dried beans, canned beans, baked beans for hubby, refried beans for nachos...and whatever other good stuff anyone can tell me about:) I just put frozen Kroger lima beans in some chicken noodle soup, and have to wait a couple of days for a reaction. I am just so nervous about processing contamination!!! I have am hoping to find more nutritious food to eat, and to be creative for my family. I would also love to make regular chili for my family...that I can also eat. I miss eating food with them. I have also begun to use the crock pot, so chilis are easy.

Thank you so much!]]> Sun, 22 Jan 2012 18:25:14 +0000 http://www.celiac.com/gluten-free/topic/89183-any-bean-info-that-you-can-give-me/ http://www.celiac.com/gluten-free/topic/89167-wallpaper-reaction-sleeping-hands-swollen/
Anyway, I've had issues with my hands falling asleep at night which wakes me regularly (this started before the diet). Yesterday I spent the day removing wallpaper from a room in our home using water and peeling it off with my hands, primarily my right hand. Last night my hand was very cold to the point where I needed to hold it against my body to warm up and it took a long time to get it to room temperature. This followed by the worst night of hands being asleep and the right hand was by far the worst. This morning my right hand is swollen and I have a slight loss of mobility (as if my hands were cold and not working right). Has anyone else experience this with wallpaper removal? I am looking for a local naturopath but in the meantime, this is scary for me. Having been flagged with a very low white blood cell count a few years ago by a walk in doctor who said it was nothing to worry about, I'm now thinking it could be auto-immune related in conjuction with all of my other symptoms. I'd love some feedback if you've experienced this please!]]> Sat, 21 Jan 2012 17:29:18 +0000 http://www.celiac.com/gluten-free/topic/89167-wallpaper-reaction-sleeping-hands-swollen/ http://www.celiac.com/gluten-free/topic/89076-pet-food/ Does anyone have their pet on a gluten-free diet?
I looked for gluten-free food last night, but after reading about 10 labels I gave up. Seems like the all have some form of gluten in them.
Is there somewhere you buy their food? A specialty store? Or online?
Did you find that removing gluten for your pets diet eliminated your CC issues?]]> Wed, 18 Jan 2012 17:43:54 +0000 http://www.celiac.com/gluten-free/topic/89076-pet-food/ http://www.celiac.com/gluten-free/topic/88930-scotch/
Well. Apparently not.

Within 10 minutes of consumption, I had sinus drainage and my voice dropped half an octave. Then today, I've had a stomachache. We'll see if it gets any worse in the next few days, but I will never drink scotch again.

Anyone else here have a reaction?]]> Sat, 14 Jan 2012 05:48:51 +0000 http://www.celiac.com/gluten-free/topic/88930-scotch/