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Does Super Sensitivity Exist?


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#1 weluvgators

 
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Posted 18 February 2012 - 07:37 AM

As a 90 page document, I have found the FDA publication, Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease: Determination of Tolerable Daily Intake Levels and Levels of Concern for Gluten by the Office of Food Safety Center of Food Safety and Applied Nutrition Food and Drug Administration in May 2011, to be a wee bit overwhelming. However, it seems to be packed full of good information for those of us trying to better understand the concerns that gluten exposure may present to those with celiac disease.

The full document can be found here:
http://www.fda.gov/d...t/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.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

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#2 Skylark

 
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Posted 18 February 2012 - 08:47 AM

Even the Fasano study does not draw the conclusion that 10 mg/day is safe. He says it's a "grey area" when you read the paper. The government has taken the next paragraph out of context. This is a situation just like GMO foods, where corporate interests outweigh the interest of the taxpayer.

I haven't seen a medical study on super-sensitivity other than the case reports. I doubt we will ever see one for a number of reasons. You have to find super-sensitives who have healed well to challenge. Then, let's say you want to challenge with 2.5 mg/day, 5 ppm by Fasano's math. Let's be really generous and say the relapses will be 1 in 50. (Not symptomatic folks, true relapses to villous damage.) That means you have to low-dose 500 people to find 10 relapses, some of whom will probably drop out. Even worse, you have to find 500 people who aren't already eating 2.5 mg/day, which is well-nigh impossible given that so-called gluten-free foods aren't really gluten-free. The study would be prohibitively expensive and would take years to recruit your subjects. To compound the issues, super-sensitives have a lot of acute symptoms from gluten so they're going to tend to drop out of challenge studies. You can't keep them in - paying enough that you will tolerate feeling really ill is coercion and is illegal.

You could try putting people on a "gluten-free" diet who feel OK but still have a little atrophy on a diet of naturally gluten-free foods, but the compliance issues would be a nightmare. Many celiacs feel OK with a little villous atrophy and while it's not an ideal situation, people won't do something like a ridiculously inconvenient diet if they don't feel like they need it. They will cheat and lie to the doctor doing the study. Nobody sane would take it on. You can't do the study on celiacs who don't feel OK because you can't confirm that the issue isn't another allergy, intolerance, or autoimmune disease.

Does it exist? I'm sure this thread will be full of replies that it does. I'm equally sure that some of the people who think they are super-sensitive are reacting to other foods, simply because that's what happened to me. You don't necessary react to a food to which you are intolerant every time you eat it and it can be very confusing to unravel.
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#3 dilettantesteph

 
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Posted 18 February 2012 - 08:59 AM

I haven't seen a medical study on super-sensitivity other than the case reports.

Two of those are studies on small amounts of gluten and not case reports: 1.5 mg/day (Chartrand) and 4 mg/day (Ciclitira). I don't know if you consider those amounts to be small enough to show super sensitivity or not. They seem to fall under certification levels.

Your points about targeting super sensitives in particular for a study are valid.
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#4 kareng

 
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Posted 18 February 2012 - 09:18 AM

Two of those are studies on small amounts of gluten and not case reports: 1.5 mg/day (Chartrand) and 4 mg/day (Ciclitira). I don't know if you consider those amounts to be small enough to show super sensitivity or not. They seem to fall under certification levels.

Your points about targeting super sensitives in particular for a study are valid.


I just don 't have the time to read all that today as its the last few build days for First robotics and i have to help. so I'm going to ask one who has read it. How did they know that the person only got 1.5 mg? Did they have to stay in a controlled environment? Maybe something they assumed was gluten-free had errant crumbs or something?

This isn't meant to argue just curious how they would do that. We have a place here that does drug studies and they lock people in for weeks if they have to be certain of what they eat or how much they exercise. I would think something microscopic but everywhere would be really hard to regulate. I wish gluten glowed under a blue light or something. :)
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#5 Skylark

 
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Posted 18 February 2012 - 11:46 AM

I went and read the Chartrand study. They gave people wheat starch that was 0.75 mg gliadin/100 g (15 ppm gluten) and they estimate people were eating about 100g/day, four slices of the bread they made with it. They didn't do any dietary manipulations to try to control people's diets other than adding the wheat starch, and the study was not blinded in any respect. They didn't biopsy but nobody developed anti-EMA antibodies during the study. Two people of 17 had DH outbreaks, which they do consider objective evidence that autoimmunity was triggered. The third person with DH was OK. By the end of 10 months, 15 out of 17 subjects had dropped out, refusing to continue eating the wheat starch because it was making them ill and the study, which was supposed to go a year, was terminated early.

The study is interesting because they also had a group of 14 people who were already eating wheat starch foods before and tolerated the starch perfectly well.

Is not tolerating bread with ~15 ppm super-sensitivity? It seems like so much gluten to me. :unsure: I think I would be sick eating that every day and I don't consider myself super-sensitive.

This is pretty compelling evidence that wheat starch is a problem for a lot of celiacs (not surprising), but can we safely generalize to CC of tapioca starch or rice flour breads? Probably?
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#6 dilettantesteph

 
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Posted 19 February 2012 - 06:08 AM

I just don 't have the time to read all that today as its the last few build days for First robotics and i have to help. so I'm going to ask one who has read it. How did they know that the person only got 1.5 mg? Did they have to stay in a controlled environment? Maybe something they assumed was gluten-free had errant crumbs or something?

This isn't meant to argue just curious how they would do that. We have a place here that does drug studies and they lock people in for weeks if they have to be certain of what they eat or how much they exercise. I would think something microscopic but everywhere would be really hard to regulate. I wish gluten glowed under a blue light or something. :)

Sorry, just saw this, I worked yesterday. I don't remember the details and am glad that Skylark replied to you. I need to get to taxes and the FAFSA application.

Hope you enjoyed the robotics, my kids did that too.
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#7 dilettantesteph

 
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Posted 19 February 2012 - 06:13 AM

Is not tolerating bread with ~15 ppm super-sensitivity? It seems like so much gluten to me. :unsure: I think I would be sick eating that every day and I don't consider myself super-sensitive.

This is pretty compelling evidence that wheat starch is a problem for a lot of celiacs (not surprising), but can we safely generalize to CC of tapioca starch or rice flour breads? Probably?

This is hard. For one thing we are comparing ppm and mg/day which don't directly translate since it depends on how much you eat of the stuff.

I think that different definitions of super sensitivity also exist so who knows if we even discussing the same thing there.

Perhaps we can agree that a celiac/gluten intolerant having problems with gluten free foods might want to try a diet of unprocessed foods?
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#8 kareng

 
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Posted 19 February 2012 - 06:30 AM

Sorry, just saw this, I worked yesterday. I don't remember the details and am glad that Skylark replied to you. I need to get to taxes and the FAFSA application.

Hope you enjoyed the robotics, my kids did that too.


I figured it would be hard to keep people not in an enclosed environment " gluten safe". This seems to be one of those things that currently is probably impossible to test. Maybe someday they will be able to test differently but there's probably no money in it.

At Robotics, I helped some kids hand sew Velcro onto the bumpers. Since the cloth was already on the bumpers, it was really hard. I got some surgical clamps to pull the needle thru. Hub and son, M, spent most of the day re-organizing all the nuts, bolts, tools, etc they need to take to competition and re- welding the cabinet. Just typical teen- age stuff - lack of planning & dis-organization. :D
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#9 Skylark

 
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Posted 19 February 2012 - 07:10 PM

This is hard. For one thing we are comparing ppm and mg/day which don't directly translate since it depends on how much you eat of the stuff.

I think that different definitions of super sensitivity also exist so who knows if we even discussing the same thing there.

Perhaps we can agree that a celiac/gluten intolerant having problems with gluten free foods might want to try a diet of unprocessed foods?

It is hard. They have to get some idea of mg/day in a study to be quantitative but it's a really iffy number.

I think we have people on this forum who react below 1 ppm of gluten in a not-large portion of food. I don't know that any study has addressed that level of sensitivity. It reminds me of the most serious peanut allergies, where someone eating peanuts in the same room can give the allergic person hives.

I totally agree with you about the value of trying a diet of unprocessed foods. I'd exclude milled flour too, on the basis of Tricia Thompson's study that showed all the CC in flours that one might think would be naturally gluten-free like cornmeal and soy flour.
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#10 dilettantesteph

 
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Posted 20 February 2012 - 06:45 AM

I think we have people on this forum who react below 1 ppm of gluten in a not-large portion of food. I don't know that any study has addressed that level of sensitivity. It reminds me of the most serious peanut allergies, where someone eating peanuts in the same room can give the allergic person hives.

We have other people on this forum who say that these people actually are reacting to the fat in their food, have other intolerances, or are crazy obsessive.

I totally agree with you about the value of trying a diet of unprocessed foods. I'd exclude milled flour too, on the basis of Tricia Thompson's study that showed all the CC in flours that one might think would be naturally gluten-free like cornmeal and soy flour.

I agree with the milled flour comment. I think that there are some other foods that are commonly cc'ed due to farming processes. I hope to see more research on that topic so that we super sensitives can know what those foods are without having to find out the hard way.
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#11 IrishHeart

 
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Posted 20 February 2012 - 07:29 AM

Perhaps we can agree that a celiac/gluten intolerant having problems with gluten free foods might want to try a diet of unprocessed foods?



Totally agree!

That is the advice I offer to someone who is still having symptoms and is getting frustrated/panicky trying to figure out if it is gluten or other food intolerances.

That is too complicated to sort out when there are multiple ingredients in a product.

I am, in fact, following my own advice right now. :lol: Back to a PLAIN as can be diet. I seem to have issues with food additives and high histamine foods. (post- DX 1 year) I am not sure that I qualify as a super sensitive, but could just still be healing. I DO have a quick onset of neuro symptoms from trace gluten (my "tell"-- so to speak) and I take nearly 8 weeks for all the other nasty symptoms to diminish. That happened just once--when I tasted a "flourless chocolate cake" from an upscale restaurant, It was likely CCed in the bakery where it was made. (I was unaware that it was not made on the premises--they are very good about gluten CC and food allergies) The chef got an earful from me!! It was the ONLY time I trusted a "gluten-free menu" item.

My doctor thinks it's just slow gut healing. (I was DXed late in life and had symptoms for 40 years. )

If only I knew back then what I know now. :rolleyes:

I read the study you guys posted (twice) because I want to understand what super sensitivity MEANS and how it is determined, but I have so many questions about it all. Skylark has helped clear it up some more for me.
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#12 dilettantesteph

 
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Posted 20 February 2012 - 10:15 AM

Totally agree!

That is the advice I offer to someone who is still having symptoms and is getting frustrated/panicky trying to figure out if it is gluten or other food intolerances.

That's great. This forum has come a long way.
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#13 IrishHeart

 
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Posted 20 February 2012 - 10:42 AM

That's great. This forum has come a long way.



I think there are a lot more of us "veterans" who suggest to newbies that they try a whole foods, unprocessed diet than may be evident. :)

I wish to qualify that I personally am not against using certified gluten-free products as I have used some myself and I am not convinced the ones some folks say are "not safe" are unsafe for EVERYONE.

I honestly think so much of dealing with celiac is an individual experience.

There is no "one-size fits all."

I always say I "wish I were a NORMAL celiac"--you know, 6 months on the diet--and someone feels great? If only. :rolleyes: It's going to take me years.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#14 Skylark

 
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Posted 20 February 2012 - 06:42 PM

We have other people on this forum who say that these people actually are reacting to the fat in their food, have other intolerances, or are crazy obsessive.

This argument about super-sensitivity exists IMO largely because other celiacs are afraid of it. What is more frightening than realizing that it's within the realm of possibility to react to the loaf of GFCO certified gluten-free bread in your refrigerator that you thought was safe? Or that there are people with celiac disease who cannot consider eating out... ever? It's much easier to tell the person who is threatening your entire, carefully-constructed, gluten-free world that they must be reacting to fat.

I think it's reasonable to remind people that super-sensitivity seems less common than reactions to other foods and food chemicals, and to remember to consider ALL the ingredients in what they ate. I think it's a jerk move to tell someone they are obsessing. Aren't we questioned enough by family, friends, and doctors?
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#15 UKGail

 
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Posted 21 February 2012 - 01:51 AM

IH "I always say I "wish I were a NORMAL celiac"--you know, 6 months on the diet--and someone feels great? If only. It's going to take me years."

Ha Ha, yes I have a friend who is one of those. Diagnosed by positive blood and biopsy last year, after feeling tired due to anemia. She had previously been one of those people with boundless energy and enthusiasm. Now feels fine, and only gets a mild stomach ache if she gets zapped. CC doesn't seem to bother her too much.

As for me, well I've been tired and have struggled with various symptoms for 25 years. I have no antibodies to gluten. A doc couldn't find any villous atrophy a couple of years ago after a gluten lite diet. Having been put on the gluten-free diet by a well-meaning rheumatologist, a GI is not likely to find any now either. I got about 70% better within a few weeks of going gluten free, including many of the longstanding problems (which I hadn't previously thought were gluten-induced), and the rest, are still hanging around. And that is by eating mostly unprocessed foods, avoiding dairy and oats, taking enzymes, probiotics and vitamin supplements, not eating out and banning gluten from being cooked in the home. I am not complaining, but it does perhaps go to show how wide the spectrum of symptoms, and their severity is. And I know from reading many of your stories here how tough many of you have had it prior to diagnosis, and how hard you all work to find your way back to good health, in particular those of you who are suffering from super-sensitivity, multiple intolerances or other serious health conditions. It is your posts, current and past, who help me decide day-by-day and week-by-week how to manage my own healing process.
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