I grieve for the loss of Gluten
LadyElsena
Posts: 17 Member
In mid March after over a year of my mothers "gentle" encouragement I was tested for celiac disease, I thought gluten free was little more than a fad diet. The tests came back positive. By chance I found a book a few days later by Dr. Peter H.R. Green and the severity of this disease became very real. But now I cry every time I go grocery shopping, I have been told to get rid of all my wooden kitchen tools unless I want to try and basically set up a second kitchen, one for gluten and the other gluten free (my kitchen is way too small for this) nonstick pans are not safe if exposed and my $600 dollars worth of stoneware (wedding gifts and the only baking dishes I have) has to go. I can't afford to replace these wonderful tools and I really enjoy cooking
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Stoneware and cast iron can often be ok to use if you place them in the oven during the self cleaning cycle. The extreme temps burn all the seasoning and old food off! After they cool you can wash them and restart the seasoning process again!0
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Does the heat actually break down the gluten? Any idea how hot that is? My oven doesn't have the self cleaning function. Thanks0
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Start slow. Don't think about what you CAN'T eat as much as what you can/want/like to eat.0
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If you have kids it is quite likely that they have Celiacs as well, perhaps the whole family would benefit by eating this way. Re: toaster bags for keeping your GF bread safe in the family non-GF toaster: try ElPeto.com
-another useful site for learning all about this is a food service PDF for training: http://www.glutenfreediet.ca/img/training.pdf0 -
Not knowing how sensitive I am other than I have been sick since I was a child and it just keeps getting worse, so I am banishing gluten from the house, having a rough time realizing what all contains gluten so that pdf is helpful. My kids are pretty young so it's not a surprise to me that they tested negative but I am surprised that no one else in my family has tested positive. This is supposed to have a high genetic trend doesn't it?0
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I'm such a goof, I didn't stop and think, Kamut it's an ancient wheat right? So likely not gluten free food!0
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No kamut, spelt, or einkorn. Sorry.LadyElsena wrote: »I'm such a goof, I didn't stop and think, Kamut it's an ancient wheat right? So likely not gluten free food!
New Interview in my inbox for Medscape: You might find it interesting...
Preventing Celiac Disease in Infants: The Known and Unknown April 13/2015
"Hi, I'm Ritu Verma. I'm one of the pediatric gastroenterologists at the Children's Hospital in Philadelphia, and I'm the director of the Celiac Center.
Today, I would like to provide some updates about celiac disease. As you know, celiac disease is an autoimmune condition, and it's the result of certain genetic factors and eating gluten. However, we do know that there are some people who have these specific genes, eat gluten-containing foods, and do not get the disease. There has been a lot of discussion about what these other factors are that actually cause the disease to be manifested.
One of the big concerns and questions in the past has been about actual nutritional input for these babies, in terms of when do we introduce gluten. Does it really make a difference in onset of the disease or the severity of the disease?
In the past, studies have found that introducing gluten between 4 and 6 months of age—not too early in life, and not too late in life—and breastfeeding at the same time seems to have been protective. We've recommended in the past that children who are genetically susceptible to celiac disease be fed cereal between those 4 to 6 months of age.
Recently, however, there were two large studies[1,2] from Europe that followed genetically susceptible babies and their eating patterns over time. It seemed that it did not make a difference whether these babies were given cereal early or late in the first year of life. It did not seem to make a difference whether they were being breastfed or not. This is definitely contrary to what we've been discussing so far with our patients.
What was also found as part of the studies was that the genetic types seem to be the more important factor. Babies who were HLA DQ2 homozygous-positive had earlier onset of the disease. Once again, it did not seem to make a difference when the cereal or gluten were introduced.
Currently, what we are recommending is to have babies and moms and dads follow the guidelines[3] by the American Academy of Pediatrics (AAP) in terms of when to introduce cereals and foods. We totally agree that breastfeeding is important for the babies. This has been confusing. However, this is what we have currently.
These questions are just like, for example, those raised by the Learning Early About Peanut Allergy (LEAP) study,[4] whose results were published earlier this year. Initially, we were always taught that peanuts should be introduced later in life to cut down on peanut allergies. The recent study indicates that introducing peanuts early in the diet seems to cut down on peanut allergies in life.
A lot of confusion; however, this is the update, currently, for celiac disease. As we have more research and more long-term studies being done, we will bring those back to you as well. Thank you.
References
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Also another article on Children and non-biopsy testing for Celiac Disease:
Non-Biopsy Celiac Diagnosis Guidelines Perform Well in 'Real World' Children April 20/2015
NEW YORK (Reuters Health) - European guidelines on when children can be diagnosed with celiac disease (CD) without a biopsy performed well in a referral-based pediatric gastroenterology practice, according to a new report.
The study, involving 17,505 patients who had celiac serology testing, is the largest reported single-center experience with the 2012 European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines.
The ESPGHAN guidelines say children can be diagnosed with CD without a biopsy if they are symptomatic, have a tissue transglutaminase (TTG) level at least 10-fold higher than the upper limit of normal (ULN), a positive endomysial antibody (EMA) test, a positive human leukocyte antigen (HLA) DQ2 and/or DQ8 status, family consent, and respond to a gluten-free diet. Children with TTG levels less than three times the upper limit of normal may be followed to evaluate trends in serology testing, according to the guidelines.
To evaluate the performance of the guidelines, Dr. Dominica Gidrewicz of the University of Calgary in Alberta and her colleagues looked at consecutive children, at least 3.5 years old but less than 18, who underwent serology testing for CD between July 2008 and December 2011. Out of 775 with positive TTG tests, 437 underwent biopsy. Another 574 patients with negative TTG tests also underwent biopsy.
As reported online March 31 in the American Journal of Gastroenterology, 98.2% of symptomatic children with a TTG at least 10 times the ULN and a positive EMA had biopsies consistent with CD.
For patients with TTG between three- and 10-fold higher than ULN, 75.7% of those who were EMA-positive had CD, versus 40% of those who were EMA-negative. For patients with TTG one to three times ULN, 52.2% of those positive for EMA had CD, versus 13.3% of the EMA-negative patients.
Four patients who met the ESPGHAN non-biopsy criteria and were positive for HLA DQ2/DQ8 turned out not to have CD.
CD prevalence in the cohort was 34.6%. The TTG test was 98.7% sensitive, 86.4% specific, and 79.4% sensitive, the authors reported.
"Before a center applies this protocol they really need to know how their antibody test performs, because there are multiple different antibody tests out there that hospitals can be using, and not every one performs the same," Dr. Gidrewicz told Reuters Health in a telephone interview. "Greater than 10 times (the ULN) for one kit doesn't always mean the same thing for another kit."
"When we applied the protocol to our patients," she added, "there were still a small group of patients who had over 10 times the upper limit of normal but their biopsies were not positive for celiac disease."
"You can still have false positives with that high serology, and you would need to continue to follow the patient to see what happens with their serology and potentially need to biopsy them down the road if things remain persistently high," Dr. Gidrewicz said.
SOURCE: http://bit.ly/1ISyufU
Am J Gastroenterol 2015.
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I use to HATE grocery shopping. I mean I HATED it. All I could see were the foods around me that I couldn't buy but I wanted. Then one day I was in the middle of a rant about how much I HATED it I had a profound realization. I HATED that I couldn't buy foods. I had the means to buy the food. I have the money, the health, and the ability to buy foods but I have to CHOOSE not to buy them because they aren't good for me and my family. I realized how lucky I was to finally figure out what was making my family sick. All it takes is going gluten, soy, dairy, and egg free. I can buy any thing else. All the meats, vegetables, and fruit I want. I can go stark raving mad and fill the grocery cart to the brim because I can have the means to do so if I want. I realized how lucky I was.
Now that isn't to say that I don't still find grocery shopping challenging. I still have a physical craving for foods when I walk buy them. I have to focus on breathing and walking. Yes literally, I breath and take a step and repeat. I just stay in the moment and focus on this one little decision to keep walking.
Also, the best advice I ever heard was..."If your taste buds can't be with the ones they love, they learn to love the ones their with." This is true. After a couple of months when you get in a rut try something you use to hate or just something new to you. I now like roasted Asparagus and fried squash...go figure.0 -
Ahhhhh, it's asparagus season here! And roasted with garlic cloves and a drizzle of EVOO is the BEST!! Top with a grinding of sea salt and of pepper and repeat often until the season is over. BTW, butternut squash julienned or even coarsely grated and just baked for 5 minutes in the oven is great in a slaw 1/2 n 1/2 with cabbage, add pumpkin seeds or sunflower seeds, apple cider vinegar, favorite spices, and a bit of oil & chow down.0
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I just want to offer words of encouragement that it does get better! I felt the exact same way when I was first had to go gluten free. I remember just staring in an aisle in the grocery store holding back the tears. It was so daunting. I was so terrified that the food I'd pick would be wrong.
I threw out all of the food that had gluten, cleaned out the entire kitchen, and started fresh. My husband was thankfully very thoughtful and wouldn't bring home any food for himself that I couldn't eat. He would only eat it out of the house. I do most of the cooking so that was easy; I just started looking for substitutes.
Now that I am a couple of years in I can't believe how much healthier I am and also how sensitive I am. I had doubts about my sensitivity because I never had the typical symptoms and always attributed my symptoms to Hashimoto's. I feel like a normal person. People often apologize now when they eat things that I can't eat in front of me and I just don't care anymore. I know how much it makes me sick and I so happy to not eat it. There are plenty of delicious things that we can eat!0 -
I had such a huge and immediate response to going gluten free that it has been very easy for me to avoid all the things I used to love to eat. And I am someone that has huge food issues. Focus on how good you feel and remind yourself that gluten is poison to you. I did not think this would be as easy as it has been. I am not at all tempted by donuts, cookies, breads, cakes. All those things I used to eat tons of!0
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Miriamwithcats I am with you on that. Pastries and baked goods do not tempt me either, I just see poison.0
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I see it as poison also, but one I just want to eat up and deal with the consequences afterwards
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canadjineh wrote: »Ahhhhh, it's asparagus season here! And roasted with garlic cloves and a drizzle of EVOO is the BEST!! Top with a grinding of sea salt and of pepper and repeat often until the season is over. BTW, butternut squash julienned or even coarsely grated and just baked for 5 minutes in the oven is great in a slaw 1/2 n 1/2 with cabbage, add pumpkin seeds or sunflower seeds, apple cider vinegar, favorite spices, and a bit of oil & chow down.
sounds like my kind of dinner
YUM!!! I am from Germany and we always ate our fill of white asparagus during the month of May.
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I understand your pain - I don't really have it while shopping because I love fresh produce and really don't care too much about the bread/cakes here in the US however when I eat out I get really sad and frustrated because all the great pasta dishes, pizza or just lightly breaded dishes are off limits. It almost makes me not wanting to go out to eat. The restaurants that offer GF menus are nice but it gets old after a while. But as many above said, after a while knowing that it makes you feel badly will make it easier to avoid it and not to get upset about it anymore.0
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I haven't been tested or diagnosed with Celiac but I decided to try going gluten free a couple of years ago and noticed improvements, mainly a huge reduction in gas. I had tried going off of wheat and/or white flour so many times in my life and was never successful.
What I've found that has really helped is going low carb which I did shortly after cutting out gluten. Low carb has taken away the desire for those foods. It's worked on my husband too who has been doing low carb mostly by default because that's how I cook now.
Another thing that I've found really helpful is making breads that are low carb and having those. I have a couple of bread recipes that I really like. I'd be happy to share but I'm new and not sure if that's allowed so I won't share the links right now until I find out it's okay.
I have found that making close substitutes to the foods I loved is crucial though. I've made "spaghetti" using cabbage in place of noodles and I've heard that lots of people use zucchini made into noodle shapes. They can be steamed or pan fried. Years ago my friend came up with an awesome recipe. She sauteed some spaghetti squash on a pan with butter and then put sauce on it and it was soooooo good.
Wishing you the best of luck. I understand the pain of giving up wheat/gluten. If you go to low carb and paelo websites, you will find good alternatives to everything from bread to cereal.
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Explore Asian Gluten Free Organic Edamame & Mung Bean Spaghetti is great and is low in carb, high in fibre & protein. Cooks up fine, just like regular pasta and they have others made from Adzuki beans, and Black beans. We love it. Even my non-GF husband likes it, we don't buy anything else.0
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Just bought this! Glad to hear it's good. I love pasta and corn and rice versions taste like Coen and rice. Haven't tries it yet but I hope it will satisfy next time I get a craving.0
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canadjineh wrote: »If you have kids it is quite likely that they have Celiacs as well, perhaps the whole family would benefit by eating this way. Re: toaster bags for keeping your GF bread safe in the family non-GF toaster: try ElPeto.com
-another useful site for learning all about this is a food service PDF for training: http://www.glutenfreediet.ca/img/training.pdf
This! And a supportive spouse willing to go that route with you may find themselves feeling better off gluten, too. My sister went gluten free when her husband was diagnosed celiac. Last time she ate a tiny bit of gluten after a year or so without it, her face broke out in a rash from forehead to chin. She also swears her moods and energy are better off it. Best to just make the whole household gluten free.
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I have been GF for three months. I grieved. It's getting better, but I still have those days that I want to cry.0
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About the only thing I really miss is good craft beers. GF beers are quite limited.0
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