• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Sharon C.

My First Post- About My Son

Rate this topic

Recommended Posts

Hi-

This is my first post. I am glad there's a board like this. A little about my situation:

My son Jake will be 8 years old in November. A doctor has finally decided to test my son for Celiac Disease. For the last three years, I have mentioned my concerns to my pediatrictian that my son has not gained any weight. He hit 40 pounds in Kindergarten and stopped there. He is still 40 pounds 2 years later beginning 2nd grade. I have mentioned my weight concerns to two different doctors at the old doctor's office only to be blown off by them, and twice to my son's new doctor who assured me that if he is still growing in height, he's fine.

One doctor from the last office actually said to me, "You're so used to seeing fat kids that you forgot what a healthy kid looks like." Yeah, I must be stupid.

My son has lost so much muscle tone that over the summer I felt fear when I would watch him take his shirt off and jump in the pool with other kids. I kept trying to feel reassured by the doctor's words that he was fine. FOUR TIMES in the last TWO years I have tried to get a doctor's attention about my son's thin frame, tiny wrists, lack of muscle tone, and bony appearance. Not one of them was concerned that he hadn't put on a pound since Kindergarten. His feet have not grown much either, with me buying a 12 1/2 everytime we go shoe shopping since I'm not even sure when.

I had such a nagging dread looking at him play this summer- I knew deep down something was not right. Even when I took him to this last appointment, where my son had developed a bump under one of his nipples- I mentioned that he is in the 5th percentile for weight but the 50th percentile for height- and the doctor said he was fine and set us up with an endocrinologist to have his hormones checked to discover why he had a bump under his nipple.

The endocrinologist was the doctor who examined my son, said he was underweight, and screened him for Celiac as well as hormonal problems. It hit me then that these doctors had continually blown me off and allowed my son to become mal-nutritioned, and all these years have gone by with my son slowly starving and becoming malnourished. I am very angry. I am relieved, and at the same time I feel anger.

My son recently began needing glasses because he found it hard to see to the back of the classroom. I have recieved "poor mothering" looks from the dentist because my son always comes back with another cavity. I have recieved stares from my husband's sisters who gawk at my kid while he's running around in his bathing suit with his cousins. I have had other mothers say they thought I wasn't feeding him properly, that I should force him to eat more and I must be doing something wrong otherwise he wouldn't seem so skinny. I must be depriving him of nutritious meals.

I never considered Celiac because my son had a little girl in his preschool class with it and since he had a peanut allergy, the mother and I would talk. She discovered her daughter had it early because of stomach pain and bloating. I assumed those were prominent symptoms. Jake has NEVER complained of any stomach ailments. He has never had vomitting, foul smelling stools, diahrea, pains or any of the stomach symptoms. He HAS had a poor appetite, a craving for junk foods while picking like a mouse at his meals, and the fact that he has stopped gaining weight and looks WAY TOO thin. Recently, he had a bloody nose in school, and then again in the middle of the night. That was last week.

The endocrinologist also ordered an x-ray of my son's hand. His bone density is that of a 4 1/2 year old child, and he will be 8 in two months. I am not furious with the doctors- but hurt. I am hurt that they blew me off time and again when I voiced my concerns, and that stupid me- I allowed myself to be reassured by their casual responses.

You will be seeing me a lot more on here, because this is much different from the peanut allergy my son has. That was a piece of cake in comparison to this. I notice that there are NO LISTS anywhere of name brands that are safe that can ne bought in a grocery store.

The hormone tests seemed to be fine. I don't know if the bump under his nipple is related or unrelated to Celiac. The doctor said 95% of the time they won't ever find out what is causing it. He had liver tests and hormone tests that came back OK.

My son will be seeing a gastroenterologist October 5th. Isn't that a long time to wait? I don't understand why they aren't treating this like an emergency. I know they will want to "put him under" for an endoscopy or a colonoscopy. I am concerned about them doing this while his body is in this compromised state. If he's been malnourished for the last 3 or four years, is it wise to put him under? Isn't him responding to the diet and passing another screening a clear enough indication that he has it? Thanks.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Sharon,

I am so sorry to hear that you have had such a horrible experience. I can totally relate becasue I was given the same run around by my doctor AND my BIL ped. We, too were sent to an endocronologist to determine why he was not growing. It took an intestinal crisis and a 12 day hospital stay for us to figure out his gluten intolerance. I look back and, you know what they say, hindsight is 20/20. It all makes so much sense AFTERWARDS!

You are an excellent mother who turned to all the right people to help you figure out what was wrong with your son. Thankfully, the endocronologist picked up on the Celiac angle.

Yes, to a worried mother October 5th seems so far away. It is a problem many moms face... do I take my child off of gluten and see what happens, or do I knowingly feed him gluten in hopes of acquiring the 'golden' diagnosis of a positive biopsy. If you want to know if it has damaged his intestines... you'll need to keep him on his regular diet until a biopsy has been obtained.

If your son has elevated antibodies to gliadin, positive bloodwork, then he most likely has a gluten intolerance. The fact that he isn't growing could definitely point to a malabsorption issue in the intestines. But depending on your GI and how many samples are taken and from where... the villi damage could be missed. So, an inconclusive or negative biopsy doesn't always indicate a free and clear signal. The response to a gluten free trial will be your best answer.

My son had positive bloodwork, but an inconclusive biopsy and was NOT given a definitive diagnosis. Just a 'let's try a gluten-free diet and see.' Well he thrived on it and grew 4" and gained 7pounds within the first 6 months being gluten-free. The GI wanted to give us a definitive diagnosis by challenging him to a 2 month diet of gluten and rescoping him. Due to the fact that my son has a severe reaction to a small amount of gluten, I couldn't see subjecting him to 2 months of poisoning in order to damage his intestines so the doctor could feel more confident in a gluten free prescription.

Only you and your doctor can determine the necessary course of action for your son. You will have to decide what you are willing to live with... can you, and more importantly he, keep him on a gluten-free diet for life without the 'gold standard' diagnosis? Will you/he question yourself or the diet, especially in light of his non-intestinal response?

It is a most personal decision you will have to make on behalf of your son. I would do as much research on the subject as possible and in light of what you learn and understand, make your decision. Going in to the GI office well informed will be helpful in determining the best path to a diagnosis.

God bless you on your journey and keep asking questions... there are many people who have answers... weigh them wisely for most of us are just giving opinons based on what we know to be true in our own experiences! :)

(Personal disclaimer: I am NOT a doctor, nor do I play one on t.v.! :) I am just a mother of a gluten intolerant child who has read and chatted with others in the same boat. Please feel free to challenge me or point me towards any research and information, I'm always searching!)

Priscilla :)

"Cleaning your house while your kids are still growing is like shoveling the walk before it stops snowing." --Phyllis Diller

SAHM to 3 beautiful boys and one adorable girl

Kyle - 6

Matthew - 4 (Gluten Free since 11/03)

Andrew - 2 (Gluten Free since 7/04)

Abigail - 7 months (staying gluten-free until ?)

My hands are full, but my heart is not! ;)

Share this post


Link to post
Share on other sites

Welcome. I'm glad you've found the problem, though sad about all you had to go through to get the answer.

There are some lists out there with mainstream processed products that are supposed to be gluten-free (search around the archives for a while and you'll find them, I don't have a list handy), but many of these are a potential source for cross contamination as well, which (among other things) leads me to sticking to whole foods and doing the cooking. (Don't worry, there are plenty of people here to take advatage of the wide range of common brand and speciality items that are gluten-free and are doing just fine, so I don't mean to say you HAVE to cook everything from scratch. :-) )

Share this post


Link to post
Share on other sites

Sharon,

First, you are in a great place and welcome! You will find many helpful parents here.

My son was just diagnosed in June, but he's only 2 1/2 and we didn't have the experience you are having. Fortunately. That said, I can assure you that "putting him under" for the endoscopy is no big deal. My son came out of it within a half an hour and immediately requested food...and then ran around playing the rest of the day. When he had his hernia surgery a week later, however, he did not bounce back as quickly as it was a totally different anesthesia. So, don't be nervous. It's very mild.

As for mainstream lists, there are a ton out there. You can buy one from CSA-America (their new version should be out in October) and you can also get lists from a variety of other places. One very good one is at the Delphi Forums message board for Celiacs (another message group I frequent) www.delphiforums.com select health/wellness and then the Celiac group.

Bridget Calacci

Mother of Brennan, 2 1/2 years old, dxd in June 2004

Share this post


Link to post
Share on other sites

Hi Sharon,

My daughter was diagnosed at 8-years old, so I understand your need for a "mainstream" product list. I also use the CSA list however, I find this list even more helpful http://homepage.mac.com/sholland/celiac/GFfoodlist903.pdf

Be sure to check the latest ingredient lists because sometimes the product formulations change. My daughter (and my 6 year old son) also have peanut/tree nut allergies.

If your son already has some favorite foods that happen to be gluten free this wil help ease his transition.

Also, some favorite gluten-free "kids meals" in our house are:

Welshire Kids Gluten Free Chicken Nuggets (with Heinz ketchup, and veggies)

Hebrew National Beef Hog Dogs (no bun) and B&M Baked beans,

Baked Potatoes with gluten-free toppings

Kinnickinick gluten-free Pizza Crust with Classico Sauce and Cabot Mozz. Cheese

Hormel Chili

Dinty Moore Beef Stew

Mary Kitchen Corned Beef Hash

Also on this board a lot of parents shared what they pack their gluten-free kids for lunch. This will be helpful to you as well... do a search under "parents of kids" and the "products" sections.

Of course, whole foods cooked from scratch are best for everyone, but one or two meals a week that are "quick and fast" before a soccer game or whatever are needed too!

Good Luck. Don't beat yourself up.... you have followed your instincts and your son is being tested...

If you do find he has celiac he will be better soon... it is amazing how dietary changes can make such a huge impact. Let us know how his appointment with the gastroenterologist goes.

Take Care,

Ruth

Share this post


Link to post
Share on other sites
Ads by Google:


Ruth,

I am so glad you posted that list link. I couldn't find that one to give her, the only one I could remember was the delphi forums one. Between the list you gave, and teh delphi one, I have a great variety of foods to choose from. I think it's funny that all three of these lists have things the others don't. I took all three, and combined them with my own information, and I'm armed and ready!! :-)

Bridget!

Share this post


Link to post
Share on other sites

I heard the Welshire Kids nuggets are not being produced any longer, they are looking for someone else to make these apparently. Sigh.

I also use the Mrs. Leepers pasta meals. They are sort of a like a hamburger helper thing, but they are GREAT. There's a chicken alfredo one...you can add the chicken or not. My two year old loves this. And there are some other flavors too, I know there's a stroganoff one and a lasagna, and there's one more I've seen.

Bridget

Share this post


Link to post
Share on other sites

Hi Bridget,

I was wondering why I couldn't find those Chicken Nuggets! UGH!

I did hear that Ian's is coming out with a gluten-free chicken nugget... I'll let you know if I find them.

I've never used the Delphi forum list. I'll be printing it out today, Thanks!

It is interesting how overtime you find what gluten-free products suit your situation and it becomes like second nature to buy them. I now know what stores to go to, what isles to go to, etc. for specific products. The only issue becomes when products are discontinued, or the ingredients change. This will be an ongoing adventure I guess.

Take Care,

Ruth

Share this post


Link to post
Share on other sites

Thanks to everyone who's replied so far. It's important that some things remain the same for my son.

Share this post


Link to post
Share on other sites

I heard the same thing about Ian's...and he's got an allergen free fish stick too!!! My son will be in heaven if I can ever find these things. I haven't been successful yet, but I think they were just introduced recently so fingers crossed....

Bridget

Share this post


Link to post
Share on other sites


Ads by Google:


Hi Ruth-

For some reason, when I click on the mac link, I'm taken to a page where I'm told that the page does not exist. Is there a typo in the link? Thanks- Sharon

Share this post


Link to post
Share on other sites

I'm trying to register on the Mac site, and it's asking me if this is my first Macintosh computer, and what am I going to use the computer for- home or business. Am I at the correct website? I'm getting a funny feeling I'm at the wrong Mac website. :unsure:

Share this post


Link to post
Share on other sites

Hi,

My son is 3 1/2 and was diagnosed a couple of months ago by his allergist. His pediatrician was cluless. I wanted to take him to the allergist at 2 but he wanted to do a basic food allergy test first -all were neg. The delayed rast couple of months ago revealed he is very allergic to a number of things. Since being off gluten and these allergic foods his behavoir is better at home and pre-school as well as his consentration. I had some tests done for deficiencies at spectracell labs and put him on Metagenics ULTRACARE for KIDS which is a nutritional shake and he loves it. (added some pure stevia sweetener)( Would like to tell off his DR. but instead I am going to give him a copy of D. Korns Kids with celiac disease book. Maybe it might help someone else get diagnosed earlier.

Share this post


Link to post
Share on other sites

I also feel resentment at the years that went by while the doctors told me he was fine. I remember he was about three when I first became concerned with how much thinner he was than other children. He will be 8 in November, and has only just recently gotten attention from a doctor. And I have to WAIT now until October 5th to see the gastro. I feel like they said, "We just did a test and discovered your child is starving. Do you think you can let him starve another few weeks until we can get him in to see a gastro?" Just venting.

Share this post


Link to post
Share on other sites

o.k lost my post. trying again... Not offering medical advice. even though my son's blood test were only a little elevated I told my Dr. I was going to try this gluten-free diet and see how he does. He is so much better not just physically but emotionally/behavior too. Doing a lot of reading so I can talk to the Dr. and ask good questions. www.clanthompson.com has good food lists. There are also some really good vitamins (Gluten-free) at healthfood stores. I am working on patience as I want him to be all better now.

I can as a healthcare professional recommend the Metagenics ULTRA CARE FOR KIDS. Its a medical food shake with lots of nutrients. WWW.metagenics.com you can locate a practioner there.

Share this post


Link to post
Share on other sites

JSIB...remember, Celiac is not an allergy, so your child could very well not have any allergies (including wheat) and still have Celiac.

I would suggest to your Pedi. GI that they go to the NASPGHAN.org and look up Celiac Disease. This is the website for Pedi. GI's and they will find all they need to know.

The good news, for both of you, is that children tend to respond extremely quickly to the gluten-free diet. They may not instantly gain weight, or grow, but you will see an amazing change in their personalities...whether you think there's something different in their personality or not trust me, you'll see a difference. I had no idea my son wasn't acting like himself until he went gluten-free....THEN I discovered what having a 2 year old REALLY means!

Best of luck!!

Bridget

Share this post


Link to post
Share on other sites

Thanks for your reply. My son has had all the allergy tests and He is very allergic to quite a few things on the delayed rast tests. wheat was the lowest. My pedi. is clueless but we have a great allergist we found this summer.

Share this post


Link to post
Share on other sites

To the OP-- I totally know how you feel.. My 2 1/2 yr old was having horrible bowel movements and not gaining weight well (she is still small at 23 lbs) and in April, the GI dr appt was scheduled for July!! I was thinking the same thing.. shouldn't this be an emergency? Argh!

Your story rang a bell with me, because my husband AND his brother, as children, were sent to an endocrinologist because of their small size (my husband was measuring 2 years behind what he should have).. back then they didn't test for Celiac. I am still in the figuring-out stage with my family. My 7 year old son does not have GI symptoms but is very small for his age. Then my 2 1/2 yr old had obvious GI symptoms with an elevated IgG and IgA.

Mel

Share this post


Link to post
Share on other sites


Ads by Google:


Hi Sharon

I'm sorry for all you have been through.....I can relate. My family always critisized my daughter for being thin and asked do you feed her..YUCK. My peditrician did more blood tests. I am so thankful that he took the time and had the insight. My daughter is 12 and has made great strides in 5 months. Don't look back ..look forward. Kids are unbelievable. My daughter is cool calm and collected. She is doing awesome and has a clue. Your son will too. Kids are amazing wait and see. Good luck!!!! :D

Share this post


Link to post
Share on other sites
Thanks to everyone who's replied so far. It's important that some things remain the same for my son.

My son was dx almost a year ago, and only after several months of illness followed by 3 months in the hospital. It can be so scary at first, and I can't believe that we've arrived at a place where we do gluten-free as naturally as can be. You will get there too.

The "some things remain the same" can be a big issue for kids. Two things we did that helped us --- I had P make a list of 4 things he didn't want to see us eat yet -- (he was on a Gluten-free Casein-free, soy free, egg free, diet for about 6 weeks). It gave him some control, and showed our empathy for his grieving.

Next he made a list of his favorite foods that were not gluten-free. Over the months that followed, as he was allowed to expand his diet, we worked on finding acceptable gluten-free substitutes for them. It was a great learning experience, we had fun with the liberty of "cook and throw it out" for dud recipes, and we could see there were, in fact, lots of choices out there.

If your son would like, he can email us and talk to my son. Good luck, and when you are done with the grief stage, try to think of it as an adventure~

Joanna

Share this post


Link to post
Share on other sites

Wow, Joanna, thank you. That's what I'm going through right now- the grief stage. I am imaging my son and how his life will be from now on, and missing the simplicity of the old life and how he was able to partake in the foods that other children do on trips and for parties. I've been feeling down and out, finding myself teary-eyed as I drive, just "in a slump". How the holiday parties at school are goint to be painful for him instead of fun. I will try to make things that he will be able to have. He already puts up with a peanut allergy.

October 5th he goes for his appointment with the gastro. I've been depressed. Thanks for your message. I'm sure he may want to email your son. Thanks.

Sharon

Share this post


Link to post
Share on other sites

I went with my son on his preschool fieldtrip to go apple picking. Lots of fun. The afterwards they helped make a scarecrow. I asked what they were using.Got a funny look. and was told "just grass" then afer my son was covered his teacher said it might be wild rye or others. It was o.k. The teachers did not know about the scarecrow making until we got there-We left early as they brought out apple donuts... My son had fun and the donuts missed were only a small part of the expierience. My son's teachers have been very supportive and before my son got to school a few days after his dx had made the class room gluten-free,. Ordered gluten -free playdoh and put a sign on the door that all must wash their hands when entering the classroom.

Sometimes I forget to breathe and forget it is more stress on my son because even with a smile on my face he picks up my worry.

But you know WITHOUT all that processed food our kids will end up healthier kids and as adults.

For yummy cookies gluten-free,sf,nutf,df try www.enjoylifefoods.com The chocolate cookies are really good. As a project we are going to expieriment with making cookies and cakes we have three months before his birthday to come up with something good.

Share this post


Link to post
Share on other sites

That's the only thing I feel good about, that they will be healthier without that stuff. It's hard for him because he's already 8, already has his "favorite" foods, and I feel if this had happened in preschool it would have been easier to transition him. Even things like ordering a pizza will be something he can't share when company is over and someone says, "Hey, lets order a pizza."

He has been able to eat these foods for years, and now he suddenly can't. He is so much more "aware" than if he were 2 or 3. As your child gets older, this intolerence will become more of an issue, especially in a mainstream classroom where children are bringing in stuff for holiday parties and birthdays. My son's school gave me a hard enough time with the peanut allergy, and there's no way they are going to make the lunchroom gluten free, or the holiday parties gluten free, on account of my child. I found with the peanut allergy, it was so much easier to deal with in the younger years, and you lose control the older and older they get. I go to all the holiday parties so I can read ingredients and place things on my son's plate that he otherwise couldn't have because the school won't be responsible for giving him ANYTHING. They expect him to sit there with nothing on his plate while the rest of the kids without issues eat in front of him. They don't want to be sued if a teacher puts something on his plate and he's allergic. So I go to every party. That was easy with peanut- not so with gluten.

It was easy to transition my son with the peanut, because he was 2 when we found out. He was just raised avoiding peanut. But he's 8 now, and this will be much harder on him. I can try to be positive about it, which I've been, but this news was bad news for him, not good news. How would you feel if your house burned down and people had no empathy? Just happy smiles and saying, "Gee, now you can get all new stuff." Wouldn't you want your old stuff? Wouldn't you be annoyed that people were acting like nothing bad has happened to you and offering no compassion? I think Rye-baby hit the nail on the head when she mentioned the grief stage. There definitely is one, especially when dealing with an older child. I cried just reading her post- finally someone put words to what I was going through. I didn't even realize it was a grief stage until someone pointed it out.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Who's Online   18 Members, 1 Anonymous, 401 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com

    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center