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Did You Know? (Autumn 2014)

Journal of Gluten Sensitivity Autumn Issue - Originally published October 7, 2014


Photo: CC--Dennis Brekke

Celiac.com 08/15/2016 - Let's celebrate the good news first, and leave the disappointments until the end, where they belong.

Did you know that we are powerful when united? 5/19/2014 - The NFCA's Kristin Voorhees, MA, Director of Healthcare Initiatives, explains how advancing research lies in the hands of people living with celiac disease. A quick e-mail to a company that claims to have gluten-free food and does not even know the meaning of "gluten-free" needs to be educated and may even appreciate a quick note from you.

For instance, a fellow celiac sufferer recently telephoned a company that carried gluten-free muffins to tell them that the inserted package of blueberry filler contained wheat flour, and since there was no e-mail site listed she asked for a full refund on the product and payment of her telephone call. She had the nerve to do it and received full compensation plus the cost of her long distance telephone call. She also received several coupons for other products claiming to be gluten-free.

I, too, returned something that listed "gluten-free, wheat free, and even listed itself as "celiac friendly". They did not list an e-mail address so I asked for a refund and the cost of the postage stamp. I could not believe it when I received the entire refund; even though I had to use the money to purchase another product in the same store, I felt I had won a small battle.

Did You Know that a little advance work from you can get you a gluten-free Dairy Queen cake? I went in three years ago and explained my allergy to gluten, indicated that I could not even tolerate a cookie crumb coming into contact with my Dairy Queen cake, "Which I loved so much". It would have to be made separately and the person would have to wear gloves when preparing it. The whipped cream topping needed to be pure whipped cream.... and boldly I listed how deathly ill gluten can make me. They used frozen strawberries as the base, had the two types of ice cream and the fancy topping and I have never been sick eating the family Birthday cakes. Their ice cream has never contained gluten and I have tried this in the United States and Canada and have become well known in both stores.

Did You Know that Campbell's three mushroom, cream of mushroom soup suddenly changed their recipe? We always bought the three mushroom cream soup. Thankfully, my husband now carries a magnifying glass with him when he shops. Without any notice, they added flour to the soup and I have written to them. I received an apology and numerous coupons.

Did You Know that Catelli now had a "Pasta Freedom" line of pasta products? In the mail in May a small catalogue arrived listing their pastas, numerous recipes and a $1.00 coupon off any Catelli gluten-free pasta product. It is made in a dedicated gluten-free facility and has a web page to visit called catelliglutenfree.ca. There is also a U.S. web site; it took me two minutes at most to send a line to them essentially stating "Good on you Catelli". On June 2nd I received a further $1.00 savings coupon and was asked to tell my celiac friends about their certified site. That made my day!

Did You Know that manufacturers such as Bob's Red Mill and Pamela's Products test for the presence of gluten as an extra layer of protection? They have websites such as BobsRedMill.com, and PamelasProducts.com, If you find a flour or mix you really like and want to buy it in bulk rather than the small packages, try searching it at Amazon.com.

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Did You Know that the NFCA declared May to be Celiac Disease Awareness Month through their "Our Heroes Within Us" campaign? Celiac disease is no longer a "rare" disease, and though there is still work to be done, we truly have come a long way. Who would have thought that Robin Hood Flour would produce a gluten-free flour in a large bags?

Every time you talk to someone both in and out of the gluten-free community you are a Hero; we do not choose to follow this restrictive diet because of weight loss. Every week the NFCA will unveil a community member who is having an impact on the lives of those around them.

DID YOU KNOW: I am still raving about the Allergy Free Restaurant Translation Cards? They really help communicate your special dietary needs in foreign countries. They offer basic phrases in various languages about your gluten concerns, specific ingredients, and preparation requests. They come in Arabic, Dutch, French, German, Greek, Italian, Korean, Latvian, Norwegian, Portuguese, Russian, Spanish, and Swedish. It comes in either paperback or e-book format. If you have a smart phone download the FREE Travel Checklist app to jump start your planning efforts detailing airlines, meals, snacks, hotels, cruises and foreign language considerations. Chef dining cards for gluten-free and celiac/coeliac travel will get you to their web site.

Did You Know; the top SIX supplements for celiac disease and gluten sensitivity? Melinda Dennis, MS, RD,LDN, nutrition coordinator of the Celiac Center at Beth Israel Deaconess Medical Center and lead nutrition author for CeliacNow.org indicates that a family multivitamin/mineral supplement is a base-line protection for getting a lot of the key vitamins and trace minerals that are not present in your diet. Make sure your supplements are gluten-free bearing the gluten-free label indicating they contain under 20 ppm gluten. Natural does not always mean safe! Look for chelated minerals and gently absorbable formulations, like calcium citrate, minerals that come in oxides like magnesium oxide, are not the most easily absorbed formulations.

Calcium is really important but it is also easy to overdose. Melinda Dennis says that she tries to get patients to reach their calcium goal through diet and then make up any difference with a calcium supplement. Calcium citrate is better absorbed than calcium carbonate, plus it does not cause as much gas or boating. It should also contain vitamin D and magnesium to help with absorption. Vitamin D: almost everyone needs vitamin D as it is so protective. It helps heal the small intestinal lining, helps with hormone regulation, and helps calcium absorption. It helps prevent colon cancer and is a mood enhancer. It is naturally produced by skin exposure to sunlight.

B Complex or B12: B vitamins can help with flagging energy and fatigue, since they are important for metabolism, red blood cell production, and tissue repair. Also, when the stomach is damaged, the body cannot absorb vitamin B12 properly, sometimes leading to a B12 deficiency. The B's are water soluble so your body mostly gets rid of anything you don't need. They are good when you are travelling, have high stress, or when fatigued. Be careful though, as synthetic B6 (pyridoxine) taken for prolonged periods at high doses can cause nerve damage.

Zinc: Many people newly diagnosed with celiac disease have low zinc. This trace mineral is involved in over 200 enzyme systems in the body and is responsible for growth and development, helping to heal wounds and protecting our immune system. It can also help with quality of our fingernails, skin, gums and hair.

Did You Know That the pharmaceuticals associations in the U.S. and Canada make a directory sized book available to every pharmacy or drugstore in the country? Try going to the pharmacy that you deal with and asking them for their out-dated issue of the compendium and see if they will give you their out-dated copy. It contains the names of the companies producing the drugs and their e-mail or web pages. This is the perfect way to check whether the drug or vitamin you are taking is actually gluten-free. I was taking a drug that was in pill form and made on machinery with other pills containing gluten. Having dermatitis herpetiformis which restricts ingesting gluten I broke out in DH sores in some amazing places - in my ears, back of my knees and chest as well as the places considered normal for the IgA deposits. I itched and stung as I scratched the tops off the lesions and had to go on Prednisone for two weeks. Is there anyone else out there that has had to take Prednisone and found it made them irritable, and as my husband stated, "it makes you really weird and wired".

Now the BAD NEWS: According to Jason Clevenger, PhD, research editor for Gluten-Free Living, who is a principal scientist with the consulting firm Exponent, Inc., and is the former editor of a Boston celiac support group, there is more evidence that ancient strains of wheat are as toxic to those with celiac disease as more modern types. Researchers harvested immune system cells from thirteen patients with biopsy proven celiac disease. They then tested the response of the cells to ancient and modern strains of wheat, including varieties known as spelt and kamut. All of the strains tested, regardless of being ancient or modern, triggered responses in the immune cells. The CONCLUSION; This report adds to the evidence that kamut, spelt and other wheat varieties should be avoided on a gluten-free diet. They provoke the same immune system response in those who have celiac disease as more modern strains of wheat. "Evaluation of the safety of ancient strains of wheat in celiac disease reveals heterogeneous small intestinal T cell response suggestive of celiac toxicity." That is from a report dated February 14, 2013 by Sulgo T.Gregoin.

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I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue. I knew better and we have been gluten free for 2 years. Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got. Feed dust everywhere. Total mess. Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems. Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough. His suggestion was maintain vigilance gluten free. I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two). At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!) But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure. And doctors state side that are worth seeing? Who is looking at gluten ataxia in the US?

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease. They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD. You should not have a goiter if your thyroid is functioning well and your TSH is "normal". Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today. Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free. It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac. I was diagnosed with Hashi's long before the Celiac diagnosis. I am not sure Vitamin D has anything to do with thyroid antibodies but who knows? Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South. I take 5,000 IU daily and that is a safe level to take, believe it or not. I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!

I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass? But a nice reminder place, with a dishwasher, should be fine. If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle. - ciders on tap might, just a slight chance, have an issue. Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The high sugar content of the drink. I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink? Not this " redds Apple" pretending to be a cider - it's beer with apple flavor. Or one of those " gluten removed " beers?

Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have! As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already.

Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables. As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.