weluvgators

Just wanted to pop in and let you know that our family has had heaps of difficulties with diagnosis and protocol development in our journey. To make progress, our family adopted a gluten, dairy and soy free diet. We experienced some extensive complications that resulted in hospitalisations for one of my children, most likely due to chronic gluten exposure at school. Our family manages both celiac and gluten allergy, and two of my gluten-free children report that Zyrtec helps with the bellyaches. We also find Zyrtec helpful in managing the extensive skin issues that we endure when our gluten exposures are not managed with enough diligence. We have been able to navigate childcare as well, and if your centre has good allergen training, they should be able to manage your child's medical condition well. Play dough is often one of the more difficult ones to work through for early childhood activities, and we have approached that in several different ways.

I am happy to share more specifics of our experiences if you want, and we have entirely more experience with juevenile arthritis issues than I want (a complication that I had not seen coming after months of extensive and chronic skin issues). I hope that you are able to find relief soon. We really had to scale back all dietary variables as much as possible to make good progress. We then had to refine our environmental exposures to ensure our good health. You may want to review "atopy" as it sounds like you may be dealing a bit with that. I didn't read all of the pages of this thread, so apologies if I missed important info. While my kids have not had elevated IgE readings, my skin tests and family history lead them to allergy predisposition. As such, and based on their past reactions, they each have a specific Allergy Action Plan. Good luck navigating this diagnostic process.

Our family moved from America to Australia, and it has been fabulous. I appreciate the more stringent labelling and inspections in Australia. And best of all is the abundance of "no detectable gluten" food that can be found in so many places here. I really hope that Australia maintains their current standards and that other countries follow their lead.

am finding that zyrtec (in liquid form, which is lactose free) is very helpful in reducing the severity of symptoms

Ooohh, thanks for sharing this note. I have been using liquid only because that is what we always have on hand since I am dealing with kids. I recently got tablet form because it seems easier to always keep it in my purse or to just carry it in my pocket (so much smaller!) . . . but I have not yet trialed the tablet form. I also appreciate that I can do smaller dosing with the liquid form, as that is usually enough to get me over the edge of a reaction (we use it for respiratory/asthma and skin reactions, including itching).

You may also want to check out catsmeow posts about introducing Zantac to help with her wheat allergy. We have found it helpful to work with a doctor group that specialises in gluten intolerance, in addition to our other doctors (as they each seem to figure out different pieces). The gluten intolerance doctors were able to identify a complicating infection for one of us, and we have been very pleased that they seem to have been able to expedite our healing in this process.

Welcome to the board! It sounds like you may be dealing with allergy issues in addition to possible celiac complications. We have found it necessary to work with a team of doctors because we have been unable to find a single doctor to manage both our allergies and our celiac. I did find conventional allergy testing helpful, although it was a difficult experience. We have found that Zyrtec (generic cetirizine too) works well for us as our primary antihistamine, and we find an effective antihistamine very helpful in managing our allergy complications as we also manage the celiac. We have found a diet of simple, whole foods to be the easiest way to root out all of our complicating issues, and we found that a gluten, dairy and soy free diet was the basic first step for our family. We have used rice and nut milks as our dairy substitutes, but we have also had to take great care in those foods to investigate if they as gluten free as our family requires.

Good luck in figuring out your puzzle! It has been quite a process for our family, and it certainly has helped us to reach out to support groups as we have tried to decipher our celiac and allergy issues.

I don't think that living gluten free is tragic, and I would help my family be gluten free. I do think it is odd that so many people are obsessed with eating gluten, often with a chunk of dairy. It seems that many people focus their diets on processed gluten foods with dairy, and I think *that* is tragic.

What my kids did away from home would be primarily up to them (assuming they are capable of cleaning themselves sufficiently when returning home), and if they started having symptoms/issues, we would work through that together. My kids seem quite pleased to have a nice selection of gluten free foods to eat when away from home, and we have had many gluten eating people comment that they envy the foods we eat.

Welcome to the board, bcsamm! I think several, if not many, people here have h. pylori experience. My DD was treated for h.pylori, and she is also treated for celiac. The story is long and complicated. I think there is some relationship between the two, but I don't have any links handy. The untreated celiac gut is susceptible to all sorts of things, as it is constantly injured (assuming the standard cultural diet of daily gluten).

My DD's case was very different (and she never has bellyaches, nor did she have any typical symptoms associated with h.pylori), as she had been treated with a gluten free diet for years when we identified and treated her h.pylori infection. I hope that your DD is feeling well. My DD's h.pylori protocol was similar to the one that you describe, and we did see improvement in her condition upon completion of her treatment. We also needed to address our DDs B12 issues, as she hadn't been properly absorbing B12 for some time (top suspect is our DD's severely injured gut just didn't allow for absorption). We have also had to work on our DD's iron levels.

There is a lot of change in simply adopting a gluten free diet, so your DD has a lot going on right now. I hope that she is feeling better quickly. Our kids have had issues wax and wane, so it hasn't been a really clear cut path. We have found that a whole foods diet prepared at home is the most effective treatment for them (and we had to adopt a gluten free home early in this journey). And we have found it necessary to do everything possible to eliminate the risks of gluten exposure in school.

When all else fails for my other DD with frequent bellyaches (also celiac, but tested negative for h.pylori), I massage her belly. We have also used heating pads. Sometimes we just cannot understand what all is playing into it, so coping with it is all that we can figure out to do. Please let your DD know that there are other kids out here that understand the struggle! My kids always appreciate when I can tell them about other kids that I read about here that have shared in similar struggles with celiac . . . and all of the stuff that seems to come along with it!

Take care and ask all the questions you want. We are happy to help you, as many of us understand how overwhelming and complex this can be.

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.

The best thing is eating healthier and actually feeling better.

The WORST thing is being openly MOCKED by those less sensitive.

I could not have said it better myself. It really is so nice to know that others can relate to our experiences with living gluten free.

She can always talk to me herself in a PM and I will be happy to discuss it with her..

I don't know about others, but I do not have the ability to PM anyone about their comments that concern me . . . Or even if I just want to share something more personal or trivial,. Like even a "thanks". I can either post it openly on the board or remain silent. I find myself often choosing silence, as it often seems the safer of my given options.

As a mother of super sensitive children, having integrated two of them into the school system, I feel it is very important to review hand washing procedures with your child. We have Individual Health Care Plans for each of them to review with all necessary parties that handwashing RIGHT before eating is critical to their health and well being. Our health care plans also identify the other necessary accommodations that we have found necessary to keep our children safe in school. And it is shocking to see how hand washing before and after eating are discouraged in our schools.

I would be very careful in assuming that your child is "cheating", as you will need to develop a solid partnership that is proactive with excellent sleuthing skills. I know all to well how critical it becomes when you are just trying to keep your kid from another hospitalization. There are so many, many places for gluten to enter the equation, and the ultimate decisions will be your son's for how he wants to navigate the hazards. We have been extremely grateful for the wonderful and insightful experiences and advice shared by the extreme super sensitives. While we may not apply the most extreme measures, we have found the experience base from those that have to go the extra mile to broaden our abilities to more safely navigate our gluten filled world. We also made tremendous strides by adopting home testing of our "gluten free" foods. We have found it necessary to fully support our children in adopting a whole foods diet.

We have found that working with our doctors as we navigate our issues has been critical. We have continued to watch and monitor for other complicating conditions, but we have yet to turn up a "something else" to explain or reduce our gluten hypersensitivity. . . However, we continue to discuss and monitor any concerns that arise, as even our doctors are perplexed at the complexity of our exquisite gluten sensitivity.

Good luck! Please do let your son know that he is not alone! Have you found any local support groups? My kids love meeting other gluten free kids!!

We often use an ultrasonic food washer - that is amazing stuff, not even from a gluten perspective - it truly opened my eyes to how thickly coated some of our produce was!

We also use a soap and water with scrub brush method. We generally follow a three wash process - first with soap and water, the next two with water only. Our washing processes depend on our past experiences and the particular food being washed. Peeling is another defense we use as well.

For grains and beans, we do an initial visual inspection, followed by an extensive wash procedure in the ultrasonic food washer. We also rely extensively on gluten home testing to ensure that our sources meet our gluten free requirements.

So again, we have found that sourcing of our food is the most critical step for maintaining our wellness. We have been able to demonstrate with gluten home testing that our wash procedure works *sometimes*. We were able to take a dried fruit that was positive for gluten (not a high positive) to negative for gluten with our ultrasonic food washer. We were unable to clean a gluten contaminated amaranth to test negative for gluten . . . and we tried and tried and tried. I have had the same experience with other contaminated grains, as we were unable to sufficiently clean them from positive for gluten to negative for gluten.

Now is a great time of year to connect with farmers and CSA owners to discuss your produce needs, as they are already planning for next year's crops. We found that reaching out to a local CSA group helped us tremendously, as she was doing a lot of legwork in finding all of the local farms and interviewing them on their practices. She can quickly tell me the risk of any produce that she carries. She also grew a few of the crops herself this year and was able to meet our specifications.

Another fun produce adventure that we had this year was meeting up with another super sensitive friend in the next state over and going to her local farmer's market with her! She had already done all of the interviewing and could quickly steer me to the foods that met our requirements. It was so much fun!

As for considering other things . . . yeah, we do it all the time. But again, I spent over a year watching my child suffer in horrible ways, always in a desperate search for a *something else* (in large part because I listened to people that repeatedly told me that there *must* be something else) . . . well two hospitalizations, dozens of doctors, a trip cross country to seek more specialist healthcare provider input, and dozens if not hundreds of tests now have been unable to identify *something else* that relieves our super sensitivity. Incorporating our experiences and the expertise of other super sensitives COMPLETELY RELIEVES the chronic symptoms that otherwise surface. The list of *other* things that we have tested for borders on ridiculous . . . and OUCH - those bills have been extraordinary. And the hospitalizations, dozens of doctors (many reknown for their specialties) and experiences of our family haven't come up with anything more than continuing to follow super sensitive protocols . . . because that works (and it is enormously CHEAPER!!!)

I added that warning label about 12 hours ago.

Was that because a newcomer to the board posted as everyone else does, but didn't undertand the unstated caveats needed to ask a question for which she needed a super sensitive perspective?

And who would have guessed the tension that would ensue by having super sensitive people discuss their issues? I don't think it is fair to say

I stand by my statement that Shauna (T.H.) reports a level of sensitivity that is far beyond anything we have seen in the time I have been here.

without also disclosing that many super sensitives tire of the tone of the comments when they do share the precautions that work well for them. I have met several other super sensitives here that also take the level of precautions needed by T.H. and others with her unique gluten hypersensitivity. Many of them no longer actively post.

I admire the way that Shauna has supported others here, and I appreciate hearing how she copes with the necessary lifestyle changes. It certainly makes me feel better to know that she can understand the precautions that our family also needs to take in maintaining health and wellness in our gluten filled world.

I have one dire regret in my gluten free journey so far, and it was listening to others that felt our necessary precautions were too extreme. The consequences of that were devastating for our family, and I hope to never repeat that mistake.

Shauna, the level of hyper-sensitivity to gluten that you describe is not just unusual. In all my time here, it is UNIQUE. For most of us, it is way over the top.

I don't dispute that these are true stories of your life, and I feel sorry that you have to live this way. But these experiences just do not reasonably transfer to the lives of the rest of us.

You certainly didn't mean *all* of us when speaking on behalf of "the rest of us". I am still here, even though I often feel a grudging tolerance for our gluten hypersensitivity that seems to put us into a unique classification for which you feel sorry.

Other people for whom this information applies so well may not even bother to speak up or share their stories anymore . . . if they ever even ventured beyond lurking.

Shauna - thank you for putting together a very informative post that can help people that want to better understand the food that they eat!

Pacific Natural Foods has announced their NEW Seven Grain Beverage,

We’ve brought together seven of the most flavorful whole grains in just the right combination. From traditional Oats, Brown Rice, Wheat and Barley to Triticale, Spelt and Millet, each delicious grain contributes to a smooth, creamy beverage.

When I spoke with customer service this morning, they confirmed that this NEW grain beverage is being manufactured on the same line as their other "milk" products.