the patient celiac

Springtime Celiac Musings

9 comments April 17, 2015

It seems like every 3 to 4 months that I hit a rough patch in which it is challenging to find time to dedicate to writing and posting on this page. Sometimes it’s because of work demands, often it’s because of family demands, and right now it’s multifactorial (work, family, planning for our big upcoming move, brain fog, etc). There are some pretty cool things that I’d like to share with you, though, so here goes:

If you can get your hands on the National Institute of Health’s Medline Plus Magazine, there is a beautifully written article about celiac disease featuring Jennifer Esposito. Although the Spring 2015 issue is not yet up on their website, it should be soon. I tried to take a photo of it with my phone but couldn't get it to upload properly. This supports that I need professional help with this page :)

I recently found out the Celiac Disease Foundation has one spot available to run the New York City Marathon on November 1, 2015 as part of Team Gluten-Free. I was fortunate to be able to participate last year and it was truly an experience of a life time. For more details please click here.

While perusing the CDF’s website I also came across an article called “Celiac Disease Myths Debunked” which clarifies some of the misinformation that I have seen propagated over and over again on the internet. It reiterates that coffee and corn are safe for those of us with celiac disease.

During one of my recent trips to T.J. Maxx I discovered the Sticky Fingers Bakery line of gluten-free scone mixes. They are super easy to make, taste great, and are made in a dedicated gluten-free facility. It looks like they are available at multiple retailers in the NW states of the U.S. as well as on amazon.com. I am going to add them to my "Products I Like" page soon...and update the rest of that page too. I am always open to new recommendations for products to try as well.

chocolate-chip-gluten-free-scone-mix

Speaking of "Products I Like," I recently learned through a reader that some of Garnier's products now contain hydrolyzed wheat protein as an ingredient. Although many experts state that those of us with celiac do not need to avoid gluten in skin and hair products (see #3), I do choose to avoid it in my shampoo as I worry that shampoo may come in contact with my mouth as I am rinsing my hair in the shower. I am also careful to use only gluten free lipsticks as well. My favorite GF lipstick brand is Red Apple and I am currently using a shade called "Audrey."

Also, I have come across a few interesting gluten/celiac related abstract and journal articles over the last few weeks, including one that reiterates that there is no association between infant feeding practices (i.e. breastfeeding and the timing of gluten introduction) and the risk of celiac disease development. Although my brain is too tired to summarize them for you, here is a list for you so that you can check them out on your own if you'd like. I was able to hear Dr. Benjamin Lebwohl speak in person at the International Celiac Disease Synposium in 2013 and he is one of my celiac "heroes."

1. Lebwohl B. Celiac Disease and the Forgotten 10 %: The "Silent Minority.” Dig Dis Sci. 2015 Feb 10. [Epub ahead of print]. http://www.ncbi.nlm.nih.gov/pubmed/25875755.

2. Gadoth ANefussy BBleiberg MKlein TArtman IDrory VE. Transglutaminase 6 Antibodies in the Serum of Patients With Amyotrophic Lateral Sclerosis. JAMA Neurol. 2015 Apr 13. doi: 10.1001/jamaneurol.2015.48. [Epub ahead of print]. http://www.ncbi.nlm.nih.gov/pubmed/25867286.

3. Szajewska HShamir RChmielewska APieścik-Lech MAuricchio RIvarsson AKolacek SKoletzko SKorponay-Szabo IMearin MLRibes-Koninckx C,Troncone RPREVENTCD Study Group. Systematic review with meta-analysis: early infant feeding and coeliac disease - update 2015. Aliment Pharmacol Ther. 2015 Mar 26. doi: 10.1111/apt.13163. [Epub ahead of print]. http://www.ncbi.nlm.nih.gov/pubmed/25819114.

I hope you are all doing well and I wish you a happy spring! Please feel free to write about anything you'd like in the comments section. I do moderate comments, but the only ones I do not post are the obscenity-laced ones and spam ones. So far I have had close to 150,000 spam posts since starting this blog 2 years ago. It's ridiculous.

Comments
Jess
In reply to Erica.
Hi Erica,
There seem to be so many with topical reactions to wheat as well. Thank you for sharing your experience. It is alkways great to hear from you.
I am tempted to write about the ALS article but I have to figure out how to do so in such a way so that people do not think that I am trying to say that all cases of ALS are related to gluten. Quite a while back I wrote about some case reports of patients with chronic fatigue syndrome improving on the GF diet and I got some rather hostile emails from people who thought that I was trying to claim that all cases of CFS are related to gluten. I don’t want history to repeat itself.
I am sorry that your husband’s aunt suffered with ALS too.
Jess
7/21/2016 1:52:28 PM
Jess
In reply to Darlene C.
Hi Darlene,
Thanks so much for writing and sharing your thoughts. Your opinions on the CDF remind me so much of an almost identical conversation that I had with a colleague about the AMA (American Medical Association) the other day. I have never joined the AMA, never will, and do not agree with many of their principles.

I am glad that you feel comfortable sharing your opinions on here and I appreciate them. At the same time I do have a good relationship with the CDF. I do agree with you about the need for a widescale media awareness campaign for both the medical community and the general public. I have not heard of anyone taking this on, have you? I wish there was a way for all of the major celiac organizations to be able to work together and collaborate on this.

It is good to hear from you, as always. I hope you’re doing well.

Jess
7/21/2016 1:51:14 PM
Jess
In reply to Susanne.
Hi Susanne,

It’s great to hear from you. I haven’t tried their mascara yet, but you’re about the 5th person who I’ve heard positive feedback from, so it might be time for me to finally buy it.

There definitely seem to be many of us who have not only celiac disease but other food intolerances. I always say that it’s best for us to listen to our own bodies, and if we find that there’s a food that we cannot tolerate, to avoid it. I avoid foods with sulfites, but my reactions to sulfites are not as a result of having celiac disease.

I do have a problem though, with some of the broad statements that I’ve come across on the internet that ALL people with celiac disease need to avoid corn, coffee, etc. because these are not true. In the only research paper that has been published in regards to cross-reactivity between gluten and coffee (titled “Cross-Reaction between Gliadin and Different Food and Tissue Antigens,” by Vojdani and Tarash, published in 2013), the authors speculate that the immune response to instant coffee (no other types of coffee caused a “reaction”) is due to gluten cross-contamination of the instant coffee. They clearly state that the instant coffee that they use for gluten cross-reactivity testing is made on shared equipment with wheat and has a disclaimer on the package that it “may contain traces of wheat.” This one finding, that wheat-contaminated coffee does cause a gluten reaction has led to a broad generalization that no one with celiac disease should drink coffee. The science is flawed. I am sure that there are some people whose systems do not tolerate coffee, but it is a problem independent of having celiac disease or NCGS.

Thank you for listening–I’ve actually been wanting to write about this for a while. I’ll try to tackle corn next time :)

Jess
7/21/2016 1:50:13 PM
Jess
In reply to Julie.
Hi Julie,
Thank you so much for sharing the links…the ice cream cones look good too.
Hope you’re doing well!
Jess
7/21/2016 1:49:07 PM
Erica
Hi Jess. Good luck with everything and take care of yourself. A note on the shampoos containing hydrolyzed wheat protein: I stay away from them not for fear of ingesting them but every time I have tried to used a product with hydrolyzed wheat protein, after a few uses I get sores on my scalp. Not saying it is reaction from celiac but it happens only with shampoos containing that ingredient.
I’m interested in that article referring to ALS as my husband’s aunt passed away from it years ago. I hope it is not too technical.
Again….Good luck with your move and all that is going on.
7/21/2016 1:48:43 PM
Darlene C
Always good to hear from you Jess.
One think I would like to share , since you mention the Celiac Disease Foundation in your article, is my disappointment in that same organization. I used to make a yearly donation to the CDF, but stopped . Why? I feel they are not spending their funding monies wisely, nor spending time on projects that are more important than organizing & promoting Expo after Expo, year in & year out. One of the newsletters
I received last year was an article about how they were praising themselves on how they had educated graduating nurses about Celiac Disease , & I thought ,
Great , that is a good thing ! But I read further to note that the grand total of nurses that they had reached that whole year was such an insignificant number , it was almost laughable. ( I think it was less than 200? I can’t quite remember he exact number they claimed ) . How they imagined that was a win is beyond me, compared to the total number of nursing students that actually graduate each year in the U.S.
I sent them an email stating my concern, & that until I saw them create a program for Celiac Disease Awareness , not just to educate all medical professionals, but to the general public in a media campaign, Radio & TV , – so that all groups of the general population are exposed & EDUCATED on the reality of Celiac Disease & Gluten Intolerance , & so the “celiac myths” are busted & the “gluten free ” annoyances are eradicated , & most of all, so that the percentage of undiagnosed cases of celiac disease trends downward from 80% toward zero.
This is what is needed – not Celiac Conferences or GlutenFree Expos- the people that attend those are ALREADY EDUCATED on CD !
The answer lies in reaching the millions of people that are clueless, uninformed , or undiagnosed. This can only be done through a media. campaign,
Radio & TV , Facebook ads, Magazines, etc. Get interviews on popular TV shows – They need to use some actually imagination – so that all groups of the general population are exposed & EDUCATED on the reality of Celiac Disease & Gluten Intolerance . So that the “celiac myths” are busted & the gluten free “annoyances” are eradicated , And most of all, so that the percentage of undiagnosed cases of celiac disease trends downward from 80% toward zero.
This is what is needed – not Celiac Conferences or GlutenFree Expos- the people that attend those are ALREADY EDUCATED on CD !
The answer lies in reaching the millions that are clueless, uninformed , or undiagnosed, & this can only be done through the media.
7/21/2016 1:47:51 PM
Susanne
Regarding corn and coffee, top researchers who presented during the gluten summit last year indicated that their proteins are similar enough to gluten that we can react to them via cross reactivity. Corn has one of the highest gluten content levels after wheat. There are many Celiac who also react to it, whether through cross reactivity or allergy. In both cases it will hold up out healing, and perpetuate symptoms. I most certainly react to corn severely. I agree that gf shower products are important. Dr Tom O’Bryan also indicated the inhalation of the steam containing gluten can cause a reaction as some residue is swallowed. I love Red Apple Cosmetics too! The mascara is the only one that doesn’t make me twitch! My go to lipstick is maven mauve. Thanks!
7/21/2016 1:43:14 PM
Julie
I meant these: http://www.amazon.com/Wild-Riceworks-Gourmet-Crisps-Sesame/dp/B0075SCI82/ref=sr_1_1?s=grocery&ie=UTF8&qid=1429245958&sr=1-1&keywords=Rice+Works+black+sesame#customerReviews
7/21/2016 1:41:37 PM
Julie
Thanks for the heads up on the scones! I’ll share a favorite gluten-free treat of mine. I buy them at Publix or Costco. Here they are on Amazon: http://www.amazon.com/gp/product/B004I5FD2S/ref=pd_lpo_sbs_dp_ss_1?pf_rd_p=1944687542&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=B001EHHRSG&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1NVAYGCC5QGXMW8NFNRT
7/21/2016 1:41:16 PM
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