Me and B – My Celiac Disease Journey Continues

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I’ve written about B vitamins on at least a couple of occasions.  [Vitamins I take] and [A missing nutritional link for me?]

Disclaimer: This is a story about me and my symptoms.  This is in no way a recommendation to you.  This is not medical advice.  The following is for informational purposes only.

As far as supplementing B vitamins I have taken the following for quite some time, 1 tablet of each per day…

Recently I ran out of the Country Life B Complex and didn’t think a lot about it.  I planned to order more, but didn’t get around to it for a while.

Somewhere in that timeframe I started to experience some issues/symptoms that had gone away for the most part.

  • Facial tics/spasms.  I have one spot on the left side of my nose that spasms.  When its doing it, it does it regularly and it drives me crazy.  I had this on and off for years prior to being diagnosed with Celiac Disease.  It largely went away after switching to a strict gluten free diet.
  • Assorted tics, spasms, cramps and numbness all over the place.

At first, I didn’t put the two things together.  Thinking this may be related to a vitamin issue (but somehow missing the obvious), I started taking Magnesium supplements.  No change.  Then I tried Potassium.  No positive changes.  If anything, increasing my Potassium seemed to make it work.

More Internet searching, turned up another possibility, my old friend… B vitamins.

I re-ordered the co-enzyme complex and started taking it again.  It helped, but slowly and not completely.  Given time, I think it would have resolved.

I decided to try doubling up on B.  Initially I took two at the same time.  Of course, no change.  My body was only absorbing x amount, doubling up didn’t help because I didn’t absorb anymore.

I then decided to take one in the morning and one at lunch.  Whammo.

This made a quick and marked improvement nearly completely resolving all ticks and spasms.  I’ve also been sleeping much better.

I believe that B vitamin deficiencies have been the cause of a good number of my symptoms.  I believe that Celiac Disease has caused my body to absorb some vitamins poorly.

I have now started to rotate between two B complexes, again, one in the morning and one in the afternoon.

I’m not suggested you do this.  This is not medical advice.  I’m only letting you know what seems to have worked for me.

Before making a change to your supplement, vitamin or nutritional regimen, talk to your doctor or healthcare professional to see what choices are right for you.

Celiac Disease For Dummies

Celiac Disease For Dummies Paperback

Celiac Disease For Dummies by Ian Blumer and Sheila Crowe

About, from the book description: “Celiac Disease For Dummies is the ultimate reference for people with the disease and their family members. The book helps readers identify symptoms of the disease, and explains how doctors definitively diagnose celiac disease. It outlines how celiac disease affects the body, and what its consequences could be if untreated. The authors explain how celiac disease is treated, not only through the elimination of gluten from the diet, but with additional nutritional measures and alternative and complementary therapies. Written by two practicing physicians, the book also offers practical, helpful guidance for parents of children with celiac disease, whose treatment may be a particular challenge.

Celiac Disease For Dummies Paperback

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Highly Recommended Movie: What’s With Wheat?

What’s With Wheat? with David Perlmutter, Cyndi Omeara, Justin Brown and more.

This title is available on DVD, Blu-ray and for rental via Amazon Video.

This is a highly educational look at wheat and issues with our food supply in general.

I think that this movie contains revolutionary information that most people are not getting.  I highly recommend that you watch this.  I rented it via Amazon video, but I’m also going to pick up a DVD copy to be able to lend to people.

What’s With Wheat?

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Dear Outback Steakhouse…. Second Thoughts on Salad Safety

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This past weekend I had the joy of visiting my two college-aged children at their college, Iowa State University in Ames, Iowa.  The weather was beautiful and it was just an all around great time.

Since I have Celiac Disease [About Me] I must eat strictly gluten free.  The Ames area has a few really good choices.  One excellent choice is Hickory Park BBQ.  This enormous restaurant is always busy, absorbing mass numbers of people in relatively short order.  It reminds me of a bbq-themed amusement park.  All of this would normally make me nervous, but Hickory Park does an excellent job of serving celiac safe gluten free food when I’ve visited.   I’ve eaten there lots of times without issue and always walk away impressed.  Their menu is expansive and they really understand the issue.  We did visit Hickory Park on Sunday and had a great meal.

On to the subject of the post…

We also ate at a local-ish Outback Steakhouse.  Normally this location does an excellent job and I’ve never had an issue.  I’m thankful to Outback Steakhouse for having a nice-sized gluten free menu.  The other times I’ve gone to since being diagnosed have went well.  Thank you Outback Steakhouse your gluten free offerings.

This visit was different though.  Even though the restaurant usually does well with safe GF and the location gets excellent Celiac Friendly ratings on Find Me Gluten Free, I still went over my standard spiel.  The server said her mother has Celiac disease and she also said she was gluten sensitive herself.  I was assured there was nothing to be concerned about, that I would be taken care of.  Yay!

As I ate my salad, a foreign texture and sensation came from my mouth.  A distinct crunch I haven’t felt in a long time.  It confused me at first and for the first couple of seconds I continued to chew.  When the dots connected, I immediately spit out what I had it my mouth and rushed to the bathroom to rinse my mouth.

I shared the incident with our server and received a quick and chipper “I’m sorry about that, can I get you another salad?”  Yeah, ummm, no I don’t want another gluten-filled salad, thank you.  The staff’s response went downhill from there.  No additional follow up and no reduction of the bill for the salad I wouldn’t eat.  It was “have a nice weekend and pay up”.  When I realized nothing was going to be said or done, I asked to speak with a manager.  Although he meant well, he really continued to handle the situation somewhat poorly.  Among other things, he said the salad should have been made from ingredients directly from the cooler instead of the salad line.

Outback Steakhouse should ensure that their staff is properly trained when it comes to everything including salads.

If you have a similar experience, I encourage you to kindly and respectfully speak up.  It’s important that restaurants know what’s going on.  You are an ambassador of the gluten free community.  Your effort to help educate food service providers benefits the entire community.  Likewise speak up when you receive good food and service.  Talk to staff and management and add fair reviews to Find Me Gluten Free.

How Safe are Salads?

Let’s face it, there’s probably a lot going on at most salad prep stations.  Multiple ingredients, some containing gluten (croutons, chow mein noodles, bread, maybe more) all in close proximity.  People building salads on top of other ingredients with things falling everywhere.

I don’t believe that a salad is the safe go-to some make it out to be.  Not saying there aren’t plenty of safe salads, just saying that they are not a slam dunk, “of course, it’s gluten free, it’s a salad!” just isn’t accurate or fair.

The silver lining is… I did not get sick.  My takeaway is… I’m leaving side salads behind.  They offer little nutrition (iceberg lettuce and oily dressing) for a lot of risk.

If you’re sensitive to gluten don’t assume a salad is safe.  Ask about prep and cross contamination.  If gluten containing ingredients are close by, ask for a salad made from fresh ingredients from the walk-in.

Related: Outback Steakhouse Gluten Free Menu and FAQ

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Lots of experimenting going on and… I’m the laboratory

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The longer I walk the journey of Celiac Disease, the more I am coming to grips with the fact that it really is a chronic disease.  My initial beliefs/hopes that my life would go back to “normal” after being on a strict gluten free diet have been pretty well dashed to bits.

Although, for the most part, I feel healthy and function pretty much normally, I continue to learn about myself.

A recent example… I have been trying to avoid dairy.  Not because I noticed a particular reaction or felt particularly ill after eating dairy, just because I know dairy is difficult to process and felt it would be better for me to skip it as much as possible.

That was all until this past Sunday, when what I now call “dairy-mageddon” happened.  I must have been low on calcium because I ate and drank every dairy related thing I could get my hands on – americano with cream, a latte, yogurt, three glasses of milk and ice cream.

Fast forward to Monday and I was laid low.  Extremely groggy, fatigued, trouble thinking and just overall ucky feeling.  I can’t say for sure, but I think it was the dairy.

I get it, I shouldn’t eat dairy or at least very much.  I guess the experiments continue.

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Celiac Sufferers – How Sensitive Are You? Sensitivity vs Severity of Symptoms

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I have Celiac Disease.  If you’ve read GF Finds for long, you know that.

Because of my work on GF Finds, I regularly communicate with folks with Celiac Disease online.  As far as face to face interactions with fellow Celiacs that mostly happens when I attend my local Celiac Support Group.  If you’re not a part of one of those groups, I highly recommend it.  It’s a great place to learn, fellowship and receive/give support.   See: Celiac Support Organization to find your nearest group.

I will say that I am lately stricken by (at least my perception of) how lax some Celiac Disease sufferers are with regards to eating at home and eating out.

Example: 1: “My children and I share mayo and peanut butter, I just look in the jar and try to avoid the crumbs”, 2: Eating at restaurants that have a “gluten free menu” without inquiring about preparation and cross contamination.  3: Hey… If it says it’s gluten free bread, I should be good to go.  Or… 4: My GF bagel came out on the same plate as my spouse’s regular toast.  I ate it.

Many of these people have years more experience living with Celiac compared to me, some decades more.

I’m left confused.  Am I too careful?  Or, am I uber-sensitive vs most Celiac Disease sufferers?

If you are regularly exposed to small amounts of gluten, here are the options as I see them…

  1. You are not sensitive to small amounts of gluten, you feel well and your body is healthy.
  2. You are not perceivably sensitive to small amounts of gluten but you are continuing to do damage to your body.
  3. You are not perceivably sensitive to small amounts of gluten because you are used to continual exposure.  You are damaging your body.
  4. Your symptoms are relatively minor or have otherwise become normal to you and you just live with them.  You are damaging your body.

3 out of 4 of those options have you doing damage to your body.

To me, there are two factors at play here, I’m not doctor, these are my own terms and understanding…

Sensitivity – My threshold for reacting to foods.  Example – If I just ask Chipotle workers to change their gloves, I will generally will not feel well.  Changing of (presumably magic) gloves doesn’t do it for me when they are serving the exact same mildly cross contaminated food using fresh gloves, my threshold for reaction is lower than that.  Related: How I order at Chipotle

Severity of Symptoms – How badly I feel or react after I am exposed.  This will vary from person to person and presumably vary based on how much gluten you’re exposed to.  Although I believe I’m extremely sensitive, my reactions are relatively minor in comparison how some react.  I do not have to run to the bathroom or go to the ER.

I would make the case that whatever we call these two factors – that we should not confuse the two.

Just because I can make it through the day doesn’t mean I’m not sensitive.

Low level reactions, or symptoms are not acceptable to me as an everyday way of life, because I know I can feel well and I know that when I am having a reaction to any degree, I’m doing a disservice to myself and the people I love.

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GiG: “Gluten-Removed” Beer May Be Unsafe For People With Celiac Disease

“GLUTEN-REMOVED” BEER MAY BE UNSAFE FOR PEOPLE WITH CELIAC DISEASE

A new research study conducted by the Gluten Intolerance Group (GIG), the leader in the certification of gluten-free products and food services, indicates that beers labeled “gluten-removed” may not be safe for those with celiac disease. A first of its kind, the pilot study, “The Celiac Patient Antibody Response to Conventional and Gluten-Removed Beer,” was published online by the Journal of AOAC International, and was conducted by GIG at the University of Chicago’s Celiac Research Center. It used blood samples from individuals with celiac disease to see whether the proteins in gluten-free beer and gluten-removed beer were recognized by antibodies that were already present in the blood. It was found that no blood samples reacted to the gluten-free beer. However, a percentage of blood samples did react to the gluten-removed beer.

All I can say is… finally.  This first of it’s kind study finally gives us some objective scientific based information on this subject.  My hope was that this type of study could validate the safety of gluten-removed beers, unfortunately it seems the opposite is true.

“GLUTEN-REMOVED” BEER MAY BE UNSAFE FOR PEOPLE WITH CELIAC DISEASE at Gluten.org

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Gluten Free Diet is Inadequate for Many Celiac Disease Sufferers

I received this email today from the Celiac Disease Foundation…

The evidence cannot be denied:

For many, if not most, celiac disease patients, strict adherence to a gluten-free diet is an inadequate treatment for celiac disease.

Because research dollars have been so hard to come by for celiac disease, biomedical researchers are still at the beginning of understanding the short- and long-term implications of the disease. What they have learned, however, is shocking: for many more celiac disease patients than ever previously thought, even strict adherence to a gluten-free diet, while possibly tempering symptoms, does not resolve celiac disease and/or comorbidities associated with celiac disease.

These revelations have only fortified CDF’s commitment to support celiac disease research for FDA-approved treatments and a cure. You are likely aware of iCureCeliac®, our growing and revolutionary patient registry that is fundamentally and positively changing the economics of celiac disease research. We are also proud of an exciting new, strategic initiative, the Young Investigators Award (YIA). We need to keep the pipeline going of talented biomedical researchers committed to celiac disease research. Thanks to a fruitful partnership, CDF has committed $150,000 to fund the North American Society for the Study of Celiac Disease (NASSCD) Young Investigator Award. We are pleased to announce the first YIA winner, Dr. Matthew Shale, a research fellow at Stanford University School of Medicine’s Institute for Immunity, Transplantation and Infection. To understand more about his pioneering research, please watch this video.

It is urgent for our generation, and for generations to come, that we invest right now in cutting edge research to find treatments and a cure for celiac disease. CDF recognizes that urgency and is committed to making well-vetted, strategic research investments. But we cannot do this without you. Please make a tax-deductible donation of $100, $500, or whatever you can afford, to support CDF’s critical research investments, including the Young Investigator Award.

Sincerely,

Marilyn G. Geller
Chief Executive Officer

I agree with this.  As a Celiac Disease sufferer myself [About Me], I would like to see an effective cure or therapy for all CD sufferers.

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Chicago: University of Chicago Celiac Disease Center’s Annual Celiac Education Day

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from the University of Chicago Celiac Disease Center:

Please join us at our Annual Celiac Education Day!

Celiac Education Day: On October 22nd, join The University of Chicago Celiac Disease Center in a free, educational event not to be missed! Celiac Education Day will feature three guest speakers, a live Q&A panel, as well as our free blood screening.

Schedule of Events: 10:00 a.m. – 11:00 a.m. Q&A Panel with Dr. Stefano Guandalini and a panel of experts

11:00 a.m. – 11:30 a.m. Personal and Psychosocial Challenges of Celiac Disease (Presented by Lori Welstead, RD, MS, and Tina Drossos, PsyD)

Celiac Education Day events are free and open to all, but preregistration for the Blood Screening is mandatory. Registration will open on September 14, 2016. For more information please visit: www.cureceliacdisease.org.

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