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kelly79mass

Discouraged And Worried

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

IF you have succeeded in beginning a gluten free diet, I would not be surprised if her appetite is slack. My appetite slacked for a long while. If this is a mental thing I know the diet is a hard thing for me as an adult. Hang in there one day she may make her own decision to follow the diet. It tends to be motivating when you suffer when you cheat. Also one of my daughters didn't eat for nearly 3 meals. Finally, she came down for a meal and said nothing about it.

I also note that a family can best support her in the diet by setting an example. Eating infront of them can cause stress.

Best wishes to you and your daughter.

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Being diagnosed with Celiac Disease rough and the learning curve is very tough - no matter what the age. Transitioning to gluten-free is not easy -- there will be many days of frustration and even tears.

In time your family will find replacements to all of her favorite foods. For now I'd suggest you figure out how to make some of her favorite meals gluten free - search those foods in this forum and you should find ways to replace them.

Time will bring knowledge along with improved health - for now hang in there, let her be angry while reinforcing the fact that gluten-free will improve her life and know that many others have gone through this transition and are here ready and willing to help your family.

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IF you have succeeded in beginning a gluten free diet, I would not be surprised if her appetite is slack. My appetite slacked for a long while. If this is a mental thing I know the diet is a hard thing for me as an adult. Hang in there one day she may make her own decision to follow the diet. It tends to be motivating when you suffer when you cheat. Also one of my daughters didn't eat for nearly 3 meals. Finally, she came down for a meal and said nothing about it.

I also note that a family can best support her in the diet by setting an example. Eating infront of them can cause stress.

Best wishes to you and your daughter.

Thank you,

She has not been cheating. In fact the thought of something damaging her body terrifies her. She's very health conscious. But at the same time she's angry and doesn't want to eat the new food. "Nobody wants to start 6th grade being a freak!" :(

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Being diagnosed with Celiac Disease rough and the learning curve is very tough - no matter what the age. Transitioning to gluten-free is not easy -- there will be many days of frustration and even tears.

In time your family will find replacements to all of her favorite foods. For now I'd suggest you figure out how to make some of her favorite meals gluten free - search those foods in this forum and you should find ways to replace them.

Time will bring knowledge along with improved health - for now hang in there, let her be angry while reinforcing the fact that gluten-free will improve her life and know that many others have gone through this transition and are here ready and willing to help your family.

Thank you so much. That means a lot. There have already been lots of tears!

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I was moody and angry and I'm 34! I also didn't just go gluten free literally the day I got the news, I got information first. This did two things for me, it gave me time to start to come to terms with things and to pig out on a few of the things I'd never have again and it gave me a chance to get ready and prepared and learn what I could eat. It is okay for her to be mad, it is okay for her to be sad, it is okay for her to feel however she needs to feel right now.

I agree here that family support will be helpful. She is only going to be more angry and resentful if you decide to order pizza for the family and give her some gluten free replacement. There are good gluten free pizzas, but it will take time to find them and there will be many disappointments on the way. Check out some of the meal threads in the cooking or baking or whatever area here and you'll find lots of great ideas for the whole family. I promise that none of you will be feeling deprived. It's a learning curve for everyone, and it's easy to be discouraged but you'll all get the hang of it and before you know it it won't be a big deal any more.

Since she's young and I remember I ate everything in sight at that age, snacks on the go may be a good idea. Fruity and Cocoa Pebbles cereal bars are gluten free, as are the cereals. I also like Kind, larabar and Trio bars which are all significantly more healthy but not quite as fun. If you have a Costco, I pick up lots of these these sorts of things there. I also try to keep fresh fruit and veggies on hand to snack on. I personally happen to be a dipper, Kraft will always list gluten sources but a call to a manufacturer will clear up any question about gluten content. I'm sure the dietitian will help get you on the right path.

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Just read adalaide's post and thought I'd add a very easy treat:

Cocoa Pebbles Treats -- Rice Crispies have gluten (there is a new gluten free rice crispie, but my kids like the pebbles treats much better)

Cocoa Pebbles (recipe on the box)

Kraft Marshmallows

Butter

Optional: Cinnamon

Tons of sugar in these, but they are one of my teens along with their gluten eating friends favorites -- easy to take to parties to share with friends too :)

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Kids at 11 are SO self-conscious! The comment about looking like a freak if telling. I think she is more concerned with how her classmates will see her than she is about giving up gluten. Somehow you have to get her to see herself as a normal kid who just happens to eat differently. Point out to her that she doesn't LOOK any different, that she doesn't TALK any differently, and that NO ONE is going to think of her as a freak.

Are there any of her friends who live nearby? Maybe you could encourage her to have a sleepover with a bunch of friends before school starts. You could serve a menu of nothing BUT gluten-free foods so her friends could see that she is eating some fine and tasty things. They might even find that her gluten-free foods taste BETTER than what they normally eat. And getting THEM used to her new diet might go a long way toward easing her fears about the upcoming school year.

I wish you and her the best. This isn't easy for any of us, but for a sensitive 11 year old, it must be worse. ((((HUGS)))) to you both.

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My first few weeks gluten-free were terrible. I was incredibly moody and so tired. I didn't want to move. My poor kids had a grumpy mom... the withdrawl took about 3 weeks to pass. Give her time to shake it, and maybe tell her about the withdrawl... how it's almost like giving up a drug. It could help her cope.

Plus I ate more junk for a while too. gluten-free cookies and chocolate covered gluten-free pretzels. Having treats, for only me, was petty but it made me feel better.

Best wishes.

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My youngest son was angry as well. He didn't like being the different kid and did not think it was fair when others were eating something he couldn't have even if he had a alternative. He was 5 when he was diagnosed. Luckily his kindergarden teacher was a blessing. Because of him and others in the classroom with allergies, the whole classroom was gluten and nut free. It really helped him in the beginning. He is very accepting of it now and will speak up for himself when necessary. He's come a long way from the beginning.

My oldest son will be going into 6th grade next month also. He has been gluten free now almost a year. He is NOT diagnosed celiac. All his blood work has been negative for the past four years and he had a negative scope last year. I decided to trial him due to his life long constipation, belly aches, gas pain/bloating, nausea, and his stalled growth and falling on his growth curve. The results were amazing. He responded very well to the diet. After three months we let him challenge with gluten since we wanted to see what happened. He did have some symptoms after a few days. I had a long talk with him and laid out the reasons why to stay gluten free and the reasons not to. I let him decide what he wanted to do. He decided to stay gluten free(prior to this he was only eating gluten free family meals at home) because he said he felt better and he liked that he was starting to grow. He does not care if he eats differently than the other kids. It has never bothered him.

I think it really depends on the child's personality on how they deal with the changes. They all deal with it in their own way. My youngest needed that reassurance and support from his father and I. Now that his older brother is gluten free he doesn't feel like the odd kid out when he and his brother are at functions together. It did help that Mom was eating the same, but it helped more when brother went gluten free. Maybe it's a kid thing. :P

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Thank you everyone for the replies , hugs and support! She was thrilled with dinner Monday night. We had 1 of her faves bbq chicken. Last night I messed up a gluten free pasta so she had leftover chicken. But she woke me up last night saying she didn't feel well and vomited once. She fell asleep soon after and has been ok since. Why did that happen??

This is really heartbreaking to me. And overwhelming. It is tough trying to stay positive when my husband gets more upset than she does as we find more and more things she can't have. "the kids gonna starve to death!" I have two older daughters who will be tested too but other than my 13 year olds asthma they are both perfectly healthy. Kinda hate to rock the boat. 17 yo has been tryin to cheer her up. Even my 13 yo trouble has too until yesterday " I'm not eating that pasta!" this is what I deal with. I feel lost and alone. Sorry to sound so dire.

Those coco pebble treats sound amazing. I think she will enjoy that, thanks! And the sleepover idea? I love it! I'll bring that up with her today... maybe in a few weeks when we have a few more meals under our belt.

Again, I really appreciate your support. I want my bubbly happy go lucky daughter back. I just want her to be healthy and happy.

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My entire family likes the SamMills corn pasta. I can get a 16 oz package for about $2.50. We have tried many different brands of gluten free pasta and come back to that one. My gluten eating husband even likes it. We used to fix regular pasta for him and gluten free for the rest of us, but he says the Sam Mills tastes fine and it's not worth it to make both anymore. I have served it to my parents and inlaws without complaint also.

It would be better for the other kids and dad to not say anything about the food in front of her. She's feeling upset as it is and that won't help. Of course I know how siblings can be. :P Tell dad that there is plenty for her to eat. I used to get comments from coworkers like "what can you eat? I would starve." I smile a little devilish grin at them. I tell them "do I look like I'm starving?" The answer is no since I'm about 20-30 pounds overweight. ;) Anyway, I like to make things and take it to work to share. One girl I work with loves anything I make. She said I could make poop taste good. :lol::o

Once you get it down pat, you and she will realize she won't be deprived.

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

I was diagnosed finally at the age of 21 (almost 2 years ago) and it was very difficult dealing with college. My best advice is to help her focus on the foods she can eat, not just the ones she can't. It is very difficult to have health restrictions at any age, but let her know that it is ultimately her choice to tell people of her condition. I have lost jobs due to celiac disease because I went undiagnosed for so long. And I need (according to my GI) 1/3 of my intestine removed because of the damage the gluten has caused. So encourage, encourage, encourage. You are obviously a great parent for trying so hard to help your child. Also, no one will be able to tell she is living gluten-free. I have also noticed that being gluten-free is becoming a fad, very strange I know. So she may find that people think it is cool that she is gluten-free. Also a tip for you, save all receipts for her food. You can fill out a form at tax time and actually get money back on your taxes for the gluten free food you have to buy because it is more expensive than food with gluten. celiac disease is a very costly illness. Check out http://www.celiaccentral.org/shopping/tax-deduction-guide-for-gluten-free-products/ for all the info you need for the tax deduction. All meat is gluten free and a lot of chips (frito lays, utz, etc.) are gluten-free without having to be special. Bi-Lo has a lot of products called Amy's that I love. As far as bread goes, I would stay away from the frozen bread at the supermarket and purchase rice flower and help your child bake her own bread. Cooking is a great skill and very enjoyable (ok, I'm biased because I am a chef) but fresh baked bread is hard to beat and tastes a million times better than the $6 a loaf frozen stuff. Hope this helps and good luck!

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Something I saw in one of the books I've been reading that was really interesting was this: try to think about your food as special, as in, everyone else wants YOUR special food. It was a tip for raising kids, that if you can get them to think that, you've succeeded; I think it's useful all the time. When I am eating strawberries with whipped cream and everyone else is eating cake, and people keep sneaking some of the extra strawberries... it's because they are jealous of me. :) At 11 she will probably be cynical if you tell her that directly, but maybe you can try to make her notice that whenever it does happen. And it'll happen more and more often as you get experienced making great gluten-free meals and treats. :)

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Kelly, does your daughter show any interest in cooking and baking? When I was first diagnosed, my gluten-eating granddaughter loved to help bake. She was 11 at the time (13 now). She recently spent a few days with me and we made gluten-free cinnamon-raisin bread, pizza and lemon-blueberry pound cake. We were also going to make cupcakes but ran out of time.

While these were made from scratch, there are also some good mixes available. Betty Crocker gluten-free mixes are readily available in lots of grocery stores and Wal-Mart. King Arthur Flour has some good ones, too. Gluten-Free Bisquick makes good pancakes and waffles and I also like Pamela's Baking & Pancake Mix. There are lots more but these came to mind quickly.

Maybe if she could help you, she might enjoy eating, too. Just a thought.

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Does your family have any favorite meals which are naturally gluten free? Lamb with vegetables on rice with a side salad? Chicken with mashed potatoes and carrots? There are many options. How about breakfast of scrambled eggs with cheese and a glass of milk? Prepare meals like that for the whole family and sit down together. She will have fewer problems with the transition if it is a normal part of your family life. It is a hard adjustment at first, but she will accept it with time.

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For the record, when my daughter was diagnosed when she was 16-17 months old, she was really mad. It is a process. Talk it out. These are her true feelings, and who can say she is not justified?

list of gluten intolerant or Celiac ;)

Vollmer, American female swimmer ~Gold medal london 2012

Jack Black

Emily Rossum

miley Cyrus

keith olberman

and... (maybe some others can add to the list and correct spelling) She is not the only person in the world who has to deal with this. (sometimes it's true ~ misery loves company, then you aren't so miserable.) :D

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

My 13 year old middle school daughter was diagnosed 4 months ago after missing 4 months of school for debilitating stomach problems (which turned out to be celiac). Her friends eat her gluten-free (gluten free) food when they come here and when she goes to their house and takes food with her, and they love it. Best cure for feeling like an oddball. :)

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My 11 year old daughter was diagnosed a few weeks ago. It's a grieving of sorts. Fast food. Birthday parties. All of that. I keep telling her to think of perspective - there are far worse things to have. She is an avid baker and is just starting to show an interest in gluten free baking. I've gone gluten free with her - I'm finding I actually feel better - although I tested negative. Adjustment takes time.

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For the record, when my daughter was diagnosed when she was 16-17 months old, she was really mad. It is a process. Talk it out. These are her true feelings, and who can say she is not justified?

list of gluten intolerant or Celiac ;)

Vollmer, American female swimmer ~Gold medal london 2012

Jack Black

Emily Rossum

miley Cyrus

keith olberman

and... (maybe some others can add to the list and correct spelling) She is not the only person in the world who has to deal with this. (sometimes it's true ~ misery loves company, then you aren't so miserable.) :D

Ex pres Bill Clinton and his daughter Chelsea. They seem to be embarassed about it though. Chelsea's wedding cake was gluten free when she got married.

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My dd was 11 when she was diagnosed. My nutritionist told me to buy Gluten Free Grocery Shopping Guide by Matison&Matison. It's been great. It tells regular food that is gluten free (hormel chili, denty Moore beef stew, Doritos , certain Smart Ones, etc. I thought we'd have to go to a specialty store for things but I can find most everything at Kroger or publix. Corn pasta in the health food section of Kroger is great. My family can't tell the difference when I pour Ragu over it! Ragu-another one from the book! I also subscribe to the gluten free option of emeals.com. LIfesaver! 9 months ago I was you and I cried in the parking lot after my first shopping trip. It does get better. I promise. Please pm me if you need more ideas. I can give you tons!!!!!

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

My 11 year old daughter was recently diagnosed too. It's getting easier. Such a huge adjustment. I'm finding that for the most part it's easier to just cook - meat, rice/potatoes, veggies. My girl loves to bake - we bought a flour mix, and so far it's worked in every "flour" recipe she's tried. We haven't ventured to a restaurant yet - still researching that. The processed foods are very expensive, which is another reason I'm cooking more. It's very hard - kids keep thinking about everything that they're missing out on. My daughter's weight went dangerously low - she was hospitalized. Putting it back on is proving to be a challenge. Let me know if you'd like to talk.

Gwen

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    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

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    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
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    • Becca4130, Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten. NCGS is a real thing even though most doctors don't recognize it today. See this care2 article that explains what might be  happening in your case. https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease. see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public. quoting Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals." Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy. and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work. See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long. quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." ****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet. You might also see this thread that talks about some of these same issues. I hope this is helpful and good luck on your continued journey. I also meant to add this link http://www.mdmag.com/medical-news/not-everyone-predisposed-to-celiac-disease-develops-it Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it. quoting "The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

      "So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)" Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
    • Fun fact, google your doctors name, 2-4 review sites will have them and their info. You can submit a public review of your doctor.......inform people of this story on the review sites and this doctors "incompetence" in relation to your disease.
    • After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.
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