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  1. 1

    GFHardy

    If she is a properly diagnosed celiac, there should be no reason to be re-diagnosed. A diagnosis of celiac disease is a diagnosis for life.

    I’d be very surprised if all sources of gluten are being avoided at this point in time. I don’t mean to sound corrective, but many people with celiac new to the GF lifestyle that I have met over the years are being re-exposed to gluten.

    Perhaps an appointment with Dr Fasano would be in order should the symptoms continue.

    With time it does get easier.

    Reply
  2. 2

    Rob

    Thank you so much for getting back to me so soon. Your insight was very helpful. To clarify….they did blood and stool tests to determine that she had Celiac back in March, but did NOT do a biopsy. That may be one reason that the GI doctor wants to reintroduce gluten prior to doing the biopsy, but it just seems to us that there’s no need to even do it at this point. We know she has it and we just need to get her better….not make her worse first. You may very well be right about her getting exposed at school. She is done with school next week. It will be interesting to see how things change this summer. After reading some of the posts on your site last night, my wife and I decided that we are going to totally do away with anything processed moving forward at home and see if that helps. We ordered new grates for our grill (because I’ve put buns, corn, etc on there in the past), we’re getting new pots & pans, wooden spoons, etc.

    Thank you again and thank you to any readers that offer advice.

    Sincerely,

    Rob

    Reply
    1. 2.1

      Julie

      My daughter was 7 at diagnosis, also plays comp soccer, so I get it! She has gained 16lb in a year and a half since going gf. She still looks anorexic, but she’s getting there! She also suffered continuously for well over a year. After removing lactose, even the yogurt with all that healthy bacteria, she felt better. She takes 100billion probiotics a day, which has helped restore her gut with healthy bacteria. You should also ensure her OTC meds/prescriptions/ vitamins/toothpaste/Chapstick are gf. Keep up the good work dad, she’ll get there. I promise!

      Reply
    2. 2.2

      IrishHeart

      Hi Rob,

      Please don’t hate the messenger, ok? . I truly care about what happens with your daughter.

      But, the reason the PediGI wants to do the biopsy is because he knows stool samples do not diagnose celiac. While it seems cruel to reintroduce gluten, it’s because he wants to determine what may be going on.

      Not sure who told you she has celiac based on stool samples, but no celiac center says those tests are valid, sorry :(

      Who ran those tests? was a GI doctor?? was it a full celiac panel?

      If your daughter is not doing well, it could be that the gluten is not really the problem (or maybe not the only problem) and he is trying to see if it is another GI tract issue or a rheumatological condition perhaps–since you mention pain levels.

      It’s your call, of course, but if she is not doing well and you have diligently removed all gluten from her diet, something else may be going on.

      She should not be getting worse.
      Did you remove dairy as well? that could be a culprit.

      I hope you can figure this out. I send you my best wishes.

      Reply
      1. 2.2.1

        Molly (Based on a Sprue Story)

        I’m so sorry you’re having to go through this! I’m not a parent myself, but I understand it must be awful to consider putting your kid through pain for what seems like a formality…but I’m inclined to agree with Irish: what if it’s NOT just a formality?

        Bloodwork results can be elevated in people who don’t have celiac at all, which is why the endoscopy is needed to confirm the diagnosis. If she’s getting worse again, it could be that she felt better at first because of the placebo effect (assuming she knew the GF diet was supposed to make her feel better). Could be there’s something else wrong and the endoscopy may help turn it up, which in the long term would of course be much better than continuing on not knowing. And if she does turn out to have celiac, at least you’ll know you can keep on doing what you’re doing.

        It’s unlikely the gluten challenge and endoscopy would have long-lasting harmful effects, so it’d just be a matter of getting through it (easier said than done, maybe). Just my two cents. Whatever you decide to do, very best wishes and good luck to you and your daughter. I hope she feels better soon.

        Reply
      2. 2.2.2

        Rhiannon

        I agree and disagree with you. I think it depends on the specifics of each case. There are some new diagnostics being used in regard to CD testing. I went to a conference with Dr. Fasano, along with several others recently, and there are changes being made in actual diagnosis. There are 7 criteria (I believe) that physicians are supposed to look at and if the patient meets, let’s say, 5 out of the 7 criteria, they will be given the CD diagnosis, even without a biopsy or positive biopsy. As you well know, there can be negative results from a biopsy as well if the sample is not taken from damaged tissue, so that’s not 100% accurate either.
        Yes, in general, people are told to have the biopsy to confirm, but depending on the physicians she sees, he/she didn’t feel that was necessary. Also, there’s something with the antibody test coming back so high, some also don’t feel it’s necessary to put someone through the biopsy process. Everyone has their own thoughts on how to handle a diagnosis, so it’s tough to say what the physicians are/were thinking without knowing the complete story.

        Reply
    3. 2.3

      Mary Logomasini

      My experience:
      After being diagnosed Celiac 3 years ago: Besides going gluten free :
      I was lactose intolerant and gave up all dairy
      After two years I was still having issues. I asked my GI Doctor about cross reactivity with other foods. He asked if I was eating oats and I said yes, gluten free oats. He suggested I stop eating those and I had immediate improvement.
      I do eat out and periodically have issues with cross contamination but overall after 3 yrs GF I am finally getting energy back and feeling better than I have in many, many years.

      Good luck!

      Reply
    4. 2.4

      Sarah

      Gluten free is a commitment, so some people benefit from a definitive diagnosis. It is also a commitment in the sense that we don’t all get better right away. I had weak positive antibodies so it helped me continue even though I wasn’t one of those who got better quickly. My brain fog vanished in days… The malaise and feeling flu-ish once a day took a better part of a year.

      A biopsy would let the GI see how here upper tract is doing and test for other things. Also, doctors are beginning to recommend follow-up biopsies a year or so gluten free to confirm healing which also supports the celiac diagnosis.

      Best of luck with your decisions. And I hope she feels better soon!

      Reply
    5. 2.5

      MIke

      She undoubtedly has a lot of GI inflammation which could harbor a secondary infection like a yeast, bacteria or even a parasite. I would recommend seeing a naturopath or chiropractor that deals with GI issues.

      Reply
      1. 2.5.1

        Gluten Dude

        I’m sorry Mike, but why on earth would you recommend a chiropractor???

        Reply
        1. 2.5.1.1

          MIke

          Many chiropractors take a holistic approach. Our chiropractor gives dietary advice, prescribes supplements and because he doesn’t deal with pharmaceuticals he has a much better appreciation and understanding of how dietary changes can affect overall health. My whole family sees him for chiropractic and wellness.

          Reply
          1. 2.5.1.1.1

            IrishHeart

            Oh come now. You are pulling our chains here.

            Not buying your nonsense.

            It’s like saying you trust dental work to a plumber.

            Chiros fix backs. period.

            Reply
            1. Mike

              I’m sorry IrishHeart. I thought we were sharing ideas that have worked for us that might help this little girl. I didn’t realize I also had to satisfy your narrow views. My apologies.

              Reply
              1. IrishHeart

                It’s not my narrow thinking. It’s just common sense, Mike.

                My own chiropractor –a terrific guy who is young and forward-thinking–even says his colleagues should not being playing doctor.

                That’s a lawsuit waiting to happen.

                Sorry, but they are not medical doctors who can write lab scripts, order lab work and tests. If you or your family members had a real emergency (God forbid!) , do you think he also has hospital privileges? He doesn’t. So how exactly are they “whole health” medical professionals?

                If you want to leave your family’s care to someone without a medical degree, that’s your right, of course.

                Reply
                1. April

                  My chiropractor is great at things other than just backs and bones as well. When I was younger I had more than one perplexing issue and while my mother started by taking me to urgent care and to see ‘real doctors’ when they sent us away saying nothing was wrong, she took me to see her chiro, and *he* figured out what was wrong.

                  I had a terrible pain in my foot, and urgent care said it wasn’t broken or strained and to ice it. I already had been doing that for days. My chiro figured out a tiny bone was locked in place in my foot incorrectly, which was pinching a nerve, and fixed it.

                  Another time he was able to tell me why I was always beyond tired. He watched my eyelids flutter and knew that it meant that I was iron deficient. (I have no idea how or why, but yes, that’s what told him.) A later blood test (with a real nurse) proved I was borderline anemic.

                  After starting college I came back to him and told him about the terrible daily migraines I was getting. He figured out I had TMJ and sent me to an orthodontist, who did much fancier tests and came to the same conclusion and started treating me for it. I had it since I was little and my dentist never caught it. (I was walking more at college and that set off the headaches.)

                  Don’t knock the chiropractors. The good ones know *way* more than just bones. They know how your body is all connected and what affects what. I would still be suffering if it weren’t for mine. I like to think of them more as whole body wellness practitioners and they can zone in on what’s wrong and direct you to the correct specialist. They aren’t a substitute for traditional medicine, but they are usually a much better first step.

                  Reply
      2. 2.5.2

        IrishHeart

        really? she “undoubtedly” has one of those?? what are you… clairvoyant?

        and yes, because anyone with a brain would put their sick child in the hands of a naturopath or a chiropractor.

        Troll.

        Reply
        1. 2.5.2.1

          Mary

          OMG…Sorry but I am officially outta here after this one. A chiropractor? Really?? With a child in a situation such as this??? I can’t see one more comment anywhere like this without the top of my head blowing off and going ballistic. Not my style, and I need to keep sane. Though I don’t comment often, I read everything. It’s up to you Dude, and Irish…I know you’ll both handle it and all is well in your hands! In the words of the late Edward R. Murrow, Good Night and Good Luck. ;)

          All my best and apologies to Rob and Elizabeth and their daughter for some of the craziness that’s gone on here.

          Since there are a few Mary’s on this site, I’m officially signing off this time as Mary D.

          Reply
    6. 2.6

      Amy

      Rob,
      Our daughter was diagnosed at 7 (biopsy) and was able to gain weight and increase her stamina over the next 10 months with a strict GF diet. Then her system went haywire again and we chased down every possible source of gluten at home / school. After several terrible months, she was diagnosed with UC too. She’s 9 1/2 now and I can relate to the agony I hear in your posts.

      If your daughter is going to have a biopsy, they can also do initial, visual check for signs of IBD – ulcerative colitis or crohn’s disease. In our daughter’s case, she has celiac and ulcerative colitis, which are both manageable…once diagnosed.

      The daily school challenges for young kids with celiac are still difficult. She’s had skin & GI reactions from friends hugging her during recess (after lunch). It can be as simple as high fives that she then transfers when touching her face/mouth. One way sharing and regular hand-washing seem easy to remember, but it’s hard when your whole world seems changed at age 10.

      Couldn’t agree more that reintroducing gluten for the test prep is awful, but a proper diagnosis is critical for her long-term health.

      Sending good thoughts your way for your daughter and entire family!

      Take care, Amy

      Reply
  3. 3

    Sarah

    OMG!

    Rob, Gluten Dude is right on track. If she has been diagnosed by biopsy there is no reason to ‘double check’. I have had the occasional GI that doesn’t believe in celiac still.

    Also, two months is too short to expect her to be better at this point. I felt better gluten free, but it took me a year and a half to actually stop being sick all of the time. Hopefully since she is young she will bounce back more quickly. But this does take time.

    Do check for any potential cross-contamination. It can be hard to track down.

    I also got a lot of benefit out of a whole foods diet. I found great cookbooks with ideas for the Specific Carbohydrate Diet.

    Best of luck to you and your daughter!

    Reply
  4. 4

    Susan Gallo

    There is no worse feeling than being unable to help your child. I’m so sorry for both of you that she is still suffering. My daughter is 11, diagnosed last August. We had a similar experience until we finally went to see a celiac specialist (Dr. Amy Burkhardt, theceliacmd.com). I had no idea how simple cross contamination was. We got a new toaster, colanders, cutting boards, threw out the wooden spoons, etc. She immediately felt better, but then developed a yeast sensitivity a few months later. I could never have gotten through this on the advice of our pediatrician, and pediatric gastroenterologist alone. I almost feel like they know nothing about celiac disease. I can’t stress how important it is to find the right medical help. I have learned so much about triggers, other foods that might cause the same symptoms, and most importantly how to help our daughter heal so she can continue to grow and enjoy her life. Good luck. It’s a journey!

    Reply
  5. 5

    Miss Dee Meanor

    It took me a couple of years to rebound. I initially didn’t feel better at all. Slowly it was two steps forward and one back. It’s not just a matter of healing the gut. It also was a matter of being malnourished for so long. Unfortunately, until healing occurred I was still not absorbing all the nutrients from my food. The only way I was certain gluten was my problem was when I accidently consumed it. Cross-contamination would send me into a two-week hell.

    I’ve always marveled at those who withdraw gluten and immediately feel wonderful. I suppose that we all have different symptoms and are in different places of gut damage present. I will say that I initially couldn’t tolerate dairy at all. I also had issues with nuts and also many fruits. Now I am able to tolerate all of these. I would suggest keeping a food diary to see if other foods are not being tolerated.

    Personally I would not want to retest. Dr. Fasano states that if you have four of the five factors below, then you may be correctly diagnosed as Celiac. If she has already had a biopsy and diagnosed, then why would anyone put her through it again?

    Having any four of the following five factors indicates Celiac Disease:
    •symptoms of celiac disease
    •positive results on the very celiac-specific tTG-IgA and the EMA-IgA blood tests
    •positive celiac gene test results
    •an endoscopy and biopsy showing villous atrophy
    •resolution of symptoms on the gluten-free diet

    Just my two cents.:)

    Reply
    1. 5.1

      Gloria @ glutenfreepoodlehome

      She hasn’t had a biopsy and she is still sick.

      Reply
  6. 6

    Karen Barteaux

    Hi…I was told by a Gastro Dr , family Dr, and a nutritionist that it is absolutely imperative that you have a BIOPSY..it is called the gold test for celiac disease, and perhaps you should talk to a nutritionist for clarification…I was undiagnosed for years as irritable bowel until I had the biopsy..i am somewhat better, but still suffer from diahrrea every morning…I am probably not as careful as I should be…will take the suggestions of others into account..re..pots, pans, wooden spoons, etc…good luck to you and your daughter as well as your wife and other three children
    Karen

    Reply
  7. 7

    Tiera

    Hi Rob! First off, hugs to you and your family. My youngest was diagnosed last July….so we’ve made it almost a year! Wow, can’t believe it’s been that long already.

    It is a struggle. They put gluten in the most ridiculous places. You have to check EVERY single thing, all of the time. I’ve found it in chocolate milk of all places…and not just the added malt but there was wheat listed on the ingredients list along with the malt. That was crazy.

    When we first went gluten free, little guy had to severely limit his milk/lactose consumption as well. He could eat yogurt once in a while but that was pretty much it (and only organic, whole milk yogurt…everything else made him sick).

    It took about 6 months before he really started feeling better. We’ve had some accidents here and there and I have to have yet another chat with my stepmom and my dad about reading labels. They gave him Twizzlers the other day, I know it says right in the ingredients that it has wheat (it was one of the things my husband was saddest about giving up!) *sigh*

    Hang in there! Stay diligent….see if removing other foods helps and definitely find a doctor that specializes in Celiac if you can. We were lucky. He didn’t get nearly as sick as some and we caught it early enough that he bounced back fairly quickly. He’s regularly gaining weight now and he’s grown several inches since being diagnosed.

    I hope your daughter starts feeling better soon!

    Reply
  8. 8

    Miriam

    Hi, when I was diagnosed with celiac (11 years ago), it took me at least a year to heal. After a month, I went back to the dr and he put me on a steroid, which made things worse. I was then referred to a celiac specialist who took me off the steroid and checked for other related conditions (e.g. Pancreatic insufficiency). He explained that my body was healing from 22 years of damage, which would take some time! It’s very hard to be patient, especially when you are making so many difficult changes to your life, but sounds like you are doing everything possible to help your child! One thing that helped me tremendously at the beginning was seeing a good nutritionist (which took a couple of negative attempts to find). Hope she continues to heal!

    Reply
  9. 9

    Maranda

    Healing can definitely take some time and there may be some ups and downs. I would put her on a leaky gut protocol for a while, and focus on nutrient dense foods (lots of vegetables, meat including organ meat, healthy fats, etc. no store bought GF products). A course of a therapeutic grade probiotic is also a good idea.

    As previously mentioned, many with celiac have intolerances to other common allergens like dairy and corn. Rice and oats are problematic for some. An allergy elimination diet can be really useful here; a nutritionist or ND can take you through it or there are resources online to DIY.

    Also double checking places for cross contamination (especially if anyone in the house still eats gluten), getting her her own condiments, etc. and double checking her personal care products would be a good first step. It could be something as small as a lip balm that is triggering it.

    Reply
  10. 10

    Charity

    I was diagnosed 6 months ago and am still struggling to figure out all of the hidden sources of gluten that continue to make me sick. A few problem areas I found: Shampoo (Herbal Essence has hydrolyzed wheat protein and was making my hair fall out – not everyone has this reaction but I did). Face Wash – Equate or Great Value Brand anything almost always contains gluten or is cross contaminated – (including their food). Makeup – A lot of lip gloss and lipstick contains gluten (call numbers on the product to be sure). Cutting Boards & Cookie Sheets (replaced). My husband and children went gluten free so we could remove all gluten from the house b/c with four small children the gluten hands were impossible to keep from cross contaminating me ;) Hope that helps!!

    Reply
  11. 11

    Elizabeth

    Thanks everyone for all of the wonderful advice!! I am the mom of this little girl. Just to clarify a few things… She had an X-ray in December when all of the stomach aches, diarrhea etc started. The only thing slightly off with it was that It showed a lot of gas. In March we went back to the pediatrician because she basically stopped eating because it would cause her so much pain. Her doctor did a full blood work up and stool sample to rule stuff out. We know the celiac had nothing to do with that sample. Her serology results indicated celiac. Her pediatrician said it was probably celiac. He said they could do a biopsy then (boy do we wish we would have!!!!) or we could see how she did off gluten. We took her off and quickly saw a HUGE difference in the first month. This second month has been frustrating because she seems to be getting worse all over again. We have since taken her to a pediatric GI doctor who wants to confirm celiac with a biopsy. Her genetic blood work showed ‘highly likely’ to have celiac, btw. We completely understand the reason for the biopsy. We just wonder how we can do that to her for 6 weeks when she is already having so much trouble. Like Rob said, this week we are doing whole foods and no dairy. But next week is when the reintroduction is to begin…

    Reply
    1. 11.1

      Miss Dee Meanor

      I found a link to an article that may be of interest to you. In part it states:

      “An important corollary of this rule is that the small intestinal biopsy may be avoided in selected cases, in which a typical clinical presentation, high titer IgA class anti-TTG and EMA antibodies, and the presence of HLA-DQ2 and/or –DQ8 predisposing genes are present. The diagnosis is confirmed by the resolution of the symptoms and normalization of the celiac disease serology markers upon implementation of the gluten-free diet. This new approach has been validated by the recent review of celiac disease diagnostic guidelines published by the European Society of Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN)”.

      Link: https://m.gastro.org/journals-publications/aga-perspectives/octobernovember-2013/a-biopsy-should-not-be-required-to-make-the-diagnosis

      It is certainly your call and I admire you for looking at all options.

      Reply
    2. 11.2

      IrishHeart

      Hi Elizabeth,
      Thanks for clarifying. I was concerned that the full celiac panel was not done, but your reply explains things a lot more. I was not trying to be difficult, honest! I am trying to just help you think of things that may be causing the worsening symptoms.

      Perhaps it is CC, maybe other food intolerances, maybe her gut is still healing.

      It’s none of my business, really, but if she were my daughter and she had a positive celiac panel and the presence of HLA- DQ2 or DQ8 genes, I’d keep her off gluten, and never look back.

      But I would find out why she is in pain.

      My choice would be the Pedi GI Dr. Fasano, but everyone knows I think he’s brilliant. :)

      Reply
      1. 11.2.1

        IrishHeart

        Elizabeth & Rob,

        Just to be sure,,,she had the full panel and the genetic test done by a reputable lab correct?

        I am just concerned that it is not some other inflammatory bowel disease at work here. Elevated tTG can occur in OTHER disorders, too.

        That’s why–as much as people hate it–the biopsy is essential
        –and even then, villi can be damaged for about a dozen other reasons. It’s tricky.

        That’s why the doctors rely on the multi-factor approach to diagnosis.

        That’s why some people do not feel well after GF diet is implemented. It wasn’t celiac or NCGS at all. It was something else.

        That’s why I’d take my kiddo to Dr. F. :)

        Reply
        1. 11.2.1.1

          Lisa Mims

          I agree with Irishheart that maybe some kind of endoscopy is in order. I don’t like to think about it, but she could have celiac and something else–ulcerative colitis can act a lot like really bad refractory celiac disease. (Ulcerative colitis, celiac disease, and NCGS run in my family. When I first got really sick, relatives kept asking me if I maybe I had ulcerative colitis.)

          Personally, I would at least ask for an endoscopy. It would be good to know if it is something else, and that will rule out Crohn’s, ulcerative colitis, microscopic colitis, and simpler things like some of the parasitic worm infestations that show up on a scope.

          I know it’s a lot to think about: all of these diseases have scary names. Most of them are treatable. Ulcerative colitis and Crohn’s are treatable with drugs and diet; microscopic colitis, which is a complication of celiac, is curable with several months of, believe it or not, Pepto Bismol. (I had it, and that is the cure–it’s called the Finer Protocol.)

          I would just get more testing of some kind–but I don’t think you need to give her gluten to do it–if she is getting glutened and that is what is making her sick, the atrophied villi will show up on a scope, anyway.

          Reply
    3. 11.3

      Amber Start

      Hi Elizabeth,
      I would ask the doc to go ahead with the biopsy w/o re-entering the gluten, because it has only been a few months, and if she has celiac, she will still show damage to the small intestine, it does take a long time for that to heal, hence people reporting long periods of time before feeling better. Ask for it to be done asap, with children they do it surgically, she will not feel anything.
      I have been down a 12+year path with my husband and then my son. My husband was diagnosed with celiac at age 40, he was very ill and it took a very long time being GF before he started to feel better. My son did not have celiac(damage to sm intestine) but did test positive for the antibodies and did have the gene for celiac. Once he was scoped, the finding was Eosinophilic Esophagitis (EE), which is an auto immune response to something in his body that it did not want in there. We did elimination diet, steriods, allergy tests, you name it, it took years before I decided to get educated and start taking things into my own hands, quite frankly after years of him suffering and the drs not giving us any reasons for it, after 6 surgical endoscopies, them wanting to put him on a feeding tube, another doc wanting to use chemo drugs, I HAD HAD IT!
      I removed the gluten completely, He couldn’t believe how much better he felt(within two weeks), I started to build up his immune system with lots of good healthy foods, nutrition drinks, pro-prebiotics, multivitimin and extra vit c. He also takes an allergy pill everyday for grass & tree pollen, cats & dogs, dust mite, all environmental allergies. when the immune system is low all symptoms are worse, all! It would take two more endoscopies before the biopsies were clean of the EE cells. The doctor would never admit to me that the removal of the gluten was the reason for him getting better, all I can tell you is, he has been fine ever since we removed it. Do your homework, get online, learn as much as you can. The doctors do not have all the answers, trust your gut, pay attention to eveything. I will say that he was not able to eat dairy for a long time, until the body healed, it could not process it, he handles it fine now.
      The health community is still learning, and opinions vary from one extreme to the other, you are her best advocate. If she carries the gene for celiac, that means either you or your husband(possibly both) carry it too, Do either of you have GI problems, skin problems??? Its a blood test, ask your dr. for it, your other children should be tested too.
      I’m here if you have any questions and happy to help. When I was going through all of this, there wasn’t anyone I could talk to. I wish you luck, please post after her endoscopy, I will be curious how it all turns out.
      Amber Start

      Reply
    4. 11.4

      Dee

      Hi Elizabeth,

      I see most of these post are from May 2014 I hope your
      Your daughter is doing well !! I have a little one with celiac and cross contamination
      Is very hard for children in school you would be surprised at the children that will give your child stuff at school to eat also look for the crafts and stuff they are doing in school a lot of it has gluten ingredients and if the children are allowed to have gluten in the classroom she can still be getting cross contamination. Also do not trust food labels that say gluten free this sometimes is false the product under federal guidelines still can contain gluten I believe it is 10 ppm – (10 parts per million ) can still be in the food or even manufactured with gluten containing products . Replacing everything cooking wise will also help things ok to keep after tons of research are cast iron can be cleaned in the oven on your self clean cycle , glass dishes or cook ware and glass containers . You can set up a special program for school to help her as well called a 504 plan . Do not trust the gluten free food if her school has it available .

      Reply
  12. 12

    Musicmidget

    This is a tough one. You want to be sure celiac is the issue – or the only issue – but you don’t want her to suffer anymore. Only you can make that call. Early on it is very easy to slip up and have ongoing issues with cross-contamination. There’s such a learning curve and SO many things gluten is in that it’s almost impossible to avoid it. Avoiding processed foods is a very good start to try to isolate it.

    Charity is spot on about Equate and Great Value brands. Avoid those if at all possible. Couple other things I’ll throw out there just in case you might not know. Shredded cheese – if she has no issues with dairy she should be okay with this for the most part, but I would avoid anything with seasoning added like the taco blend or Mexican. They almost always contain traces of wheat. I learned that the hard way a few weeks back. Also, if you have pets you might want to look at changing their food. Most all dog and cat food contains loads of wheat. If your daughter is handling their food – or if the pets are licking her – then that may be a source if cross contamination. Just something to check in case you didn’t already know.

    My heart goes out to you. I hope your daughter feels better soon!

    Reply
  13. 13

    Sally

    My GI confirmed a celiac diagnosis based on antibody blood tests and symptoms. She wanted a biopsy but did not force it. I think that even without a biopsy, if bloodwork indicates she has celiac tendencies, that’s enough – even if it means there is no “confirmed diagnosis”.
    I’m so glad to see you’re staying away from processed foods – my big mistake was eating foods (like Amy’s) that said Gluten Free but were processed in a shared facility. Nuts, ice cream, beans and lentils…things that should be fine…were sources of contamination. Ice cream maker was a life changer for me – and you can make with coconut milk if avoiding dairy.
    Good luck, and I hope she starts feeling better soon!

    Reply
    1. 13.1

      Gloria @ glutenfreepoodlehome

      I will disagree. While the biopsy is used for diagnostics, the EGD itself is an opportunity for the GI Dr. to check out the health if the GI tract. I have seen several people be diagnosed with various problems that were easily treated with medications and one person diagnosed with a duodenal ulcer that was positive for cancer. Even children can have GERD, yeast, and all kinds of issues found when newly diagnosed with celiac. All quickly treatable if found. I see needless suffering and worry from celiacs treating themselves with eliminating various food groups and not addressing the underlying issues because they haven’t had the proper testing.

      Reply
      1. 13.1.1

        IrishHeart

        I am with you, Gloria.

        Reply
  14. 14

    Lisa

    I haven’t read all the rep lies so I’m not sure if anyone else said this. My son (now 15) and I were diagnosed last year. He had the blood test and the biopsy…I had only the blood test. You are still new on the journey and it is SO overwhelming and can be isolating (especially for a child). Both my son and I felt so much better just after a week of being gluten-free but still not 100%. Even now, neither one of us is 100%. It takes a while. We started by cutting gluten out of our diets but after 6 mos our numbers were still too high. We got new pots/pans, cooking/baking utensils, cutting boards, colanders, toaster. We have separate condiments (we don’t have a GF kitchen). We use GF toothpaste. We make sure our medications are GF, as well. There is so much to consider and it is so, so much. Do you have local celiac support group? There are some really good resources on-line, too.
    My son is older than your child and is better able to advocate for himself but at 10, she can do it with your support. We make sure my son’s teachers and the school nurse and administrators/guidance counselors know he has celiac.
    Celiac is covered under the American’s with Disabilities Act so the school can even work with you for a 504 plan (which will help ensure her safety at all school events). We also met with a registered dietician who specialized in celiac…our doctor ordered it so it was covered by insurance.

    I know what your are feeling. There is nothing worse than watching your child suffer…not knowing what to do. GutenDude is a wonderful resource to help arm you with knowledge. Take a look at the following websites. They helped me in the beginning and still do. Gluten Intolerance Group, Univ. of Chicago Celiac Disease Center, Celiac Disease Foundation, R.O.C.K. (Raising Our Celiac Kids), Center for Celiac Research and Treatment (Mass General Hospital for Children)

    I wish you lots of luck and healing for your daughter.

    Reply
  15. 15

    Stephanie

    So I’m going to start off by saying, Ditto! Everyone else has given you perfect on target advice.
    Please keep us updated once school ends. I hope she starts feeling better soon!

    Reply
  16. 16

    Gail

    Hi Rob,
    I hope your daughter starts to feel better soon. As everyone says, healing can take a long time. I think if we could easily see inside we would realize just how long it does take to heal. When the skin is involved, we know how long it takes because it’s on the outside and we can see it. I know for myself, I wasn’t sure if I would be permanently left with dark pigmentation in spots but it did eventually go away as the skin cells regenerated. It was a slow process, though. Re other food intolerances, I always think it’s a good idea to have food intolerance testing done, if possible. I found out it is actually the whey protein that I am very sensitive to which would have been hard to pinpoint myself. If someone tries to tell you it’s lactose, then you’ll know it won’t make any difference drinking lactose free milk. Dairy is a big problem for a lot of people. I also discovered I am sensitive to amaranth, which is in a lot of gluten free products so I avoid that. On Jennifer E’s website (jennifer’sway.org), in her May15th blog about her book, there are some comments near the end about carrageenan and msg, which some people react to in the same way as if they had ingested gluten. It seems as if there’s something new to learn everyday but it will all come together. You will certainly gain a lot of knowledge and feel the comfort of this community.

    Reply
  17. 17

    Hap

    Rob

    Wonderful advice from Gluten Dude, Irish and everyone else as usual. I also read your comment above and agree with your plan of action.

    I’ve previously stated my health history in comments since February so I won’t repeat all that again here. You can read my previous comments on this “GI requested gluten challenge” issue on March 17 towards the end of comments section on the Dude’s March blog post about Dr Oz and his silly self. I had just returned from my 5th GI visit in 15 months that day.

    I wish you all the best for your family and your daughter. Since my own daughter is about to marry in December, I know you will do everything humanly possible to protect her so I hope my personal experience details below helps you make an informed decision. I know Irish will most likely add additional technical medical info for you to help make your decision.

    The Ped GI is telling the truth that “this is just how it is”; however, I believe that protocol may change somewhat over time. As Irish stated above, it is important to make sure nothing else is going on; however, for my reasons stated below, I’m not sure the “gluten challenge” and the damage it can inflict at this point is worth the risk to your daughter’s health if staying as close to 100% GF fixes her problems. This summer away from school where you can monitor everything she eats may be worth the wait. Certainly involve your Docs in your ongoing decisions.

    In your specific case, I would currently listen to your Pediatrician (not PED GI) since you already have so much proof of CD/gluten sensitivity. I base this opinion on my interaction with my young GI, who I greatly appreciate.

    This whole discussion goes directly to the heart of the current debate over “obtaining a CD diagnosis with small intestine biopsies” as opposed to the existence of “gluten sensitivity and/or gluten intolerance without a confirmed small intestine biopsy” and whether “gluten sensitivity/intolerance” is a real separate condition/disease in addition to CD. IT IS REAL, don’t let anyone tell you differently – medicine just simply has not caught up yet. My client just spent over $20,000 on tests, suffered for over a year from gluten ingestion and then tried to make it eating gluten for 2 more months for the test results, which were all mostly negative for CD and DH, but who even knows if his test results were accurate. My client’s symptoms have improved greatly over the last 1.5 months solely by being as 100% GF as possible. He takes no other medication. For him, he couldn’t now care less what the test results indicated. You won’t ever be able to get him to eat gluten again after missing 2 months of work. His many test results did not indicate any other problems either (idiopathic diagnosis) but even his GI and Dermatologist agreed that it was most advisable for him to remain GF. Both Drs said, if being GF works don’t question it any further at this point. In the Drs’ defense, they are as careful with the CD diagnosis as possible because it is a LIFETIME diagnosis so I appreciate their preciseness for that reason.

    After my DH diagnosis from my dermatologist, a 99.99% CD diagnosis from my GI Dr, CT scans, a colonoscopy, 2 endoscopes and many positive biopsies over a prior 14 month period, my GI still tried to talk me into a “Gluten Challenge” for the second time in March 2014 for 2 reasons (1) because that’s the protocol; and, (2) my intestines (along with everything else inside) were damaged but my small intestine was just not as damaged as much as could have been because I had stopped eating gluten a month before the first endoscope since my first date for the endoscope was almost 2 months from referral, which they later reduced to 1 month. I don’t believe I would have lived to the first endoscope if I had not stopped eating gluten. Even after 18 months, my skin from the DH is much much better but still not well, but I did not want to assume the risk of the complications to my liver, etc. from taking Dapsone.

    My GI answered his own request for me to do a gluten challenge because he knew there was no way possible, even with threats of gun violence, that I would ever willingly eat gluten again as long as I live. He told me that NONE of his other 5 adult patients, who do not have as extensive positive test results, including my positive CD gene test, as I do, would willingly undergo a gluten challenge. My GI said protocol required that he ask me, but he did not disagree with my answer based on my test results and medical history including related cancer. My answer was not only NO, but H#LL NO, and as others on this site will tell you, I don’t use that explanatory term carelessly, but it fit my circumstances because CD and DH have made my last 4 years as close to hell on earth as I ever want to be.

    As GDude stated, you must be very very diligent to make sure your daughter is not getting glutened from any source. I am finally getting well after 18 months GF today, because I listened to GDude and cut out everything that even possibly contains gluten by being produced in a wheat facility. We get enough gluten from cross contamination without knowingly adding to the sources of possible gluten. You cannot fully trust “Gluten Free” on products or in restaurants. You must always stay very diligent for her. I think most here would agree that we watch everything that goes in our mouths. Even after 18 months GF and feeling better many days, I still slept most of this past weekend, which was highly unusual for me before I got so sick. It takes time to get well and it only takes a tiny bit of gluten to make us sick again for a disproportionate amout of time to the amount of gluten ingested

    Considering the extensive positive medical results and attentive medical professionals that you already have for your daughter, I would NOT let my daughter eat any more gluten just to obtain a small intestine biopsy in accordance with protocol. From my practical experience, it’s simply not worth the risk or more damage to her health. Although I would not advise your daughter doing so in consideration of all the medical proof you already possess, when your daughter becomes an adult and is responsible for her own medical decisions, then she could eat gluten and see what happens if any doubt remains but I would not impose that pain on my child when the decision is mine to make and it could prolong her recovery by a substantial amount of time. Although expensive, the CD gene test may be advisible and may help the Drs. finalize their diagnosis, which did help in my personal circumstances.

    Hap

    Reply
    1. 17.1

      Hap

      I also agree with advice that there is nothing wrong with doing the endoscopy without the gluten challenge if the Ped GI will do so with the caution being that the test results may be inconclusive without the gluten challenge; however, the EGD could reveal anything else going on in the meantime. If she gets well after a summer of 100% GF then the endoscopy would be worthless for CD Dx without a gluten challenge. For me personally, as much other conclusive results as I had including villi atrophy even after being GF for a month, getting a perfect CD biopsy was not worth the risk or pain of 6 to 12 more weeks of glutened misery.

      Reply
  18. 18

    Jessi

    Hi Rob and Elizabeth,
    I was also diagnosed at the end of March. I cleansed my house of anything and everything gluten and within a few days I felt some relief. Over time my brain fog and fatigue have gotten better. However certain symptoms, such as the joint pain and DH have remained. Here are a few things I have noticed: If I eat processed gluten-free food, I feel more body aches and just overall worse.In addition, I have been glutened twice and when this happens all of my symptoms peak all over again. In fact, they are way worse than before I went gluten-free. I have decided to cut out all of the processed foods and possibly dairy until I heal. Another thought I had is even if your daughter is eating only gluten-free at school, that doesn’t necessarily mean her food isn’t being contaminated. She could possibly be putting her food down on a contaminated table, or letting her friends try her food and getting contaminated by something that is on her friends hands. Anything is possible. As far as going back on a gluten diet, only you can make that decision. I will tell you that I had to increase my gluten intake while waiting for my biopsy and it made me so sick that the doctor had to reschedule other appointments in order to get me in earlier. You do need that definite diagnosis in order to get her school to make special accommodations, such as a 504, so that the school staff are required to take her diagnosis seriously and help her with special requests or accommodations that she will need to stay healthy and safe at school. Good luck. I hope your daughter feels better soon!

    Reply
    1. 18.1

      Robyn Bray

      Jessi, most GF processed food has xanthan gum. It’s in tons of other processed foods too. Some people are sensitive to it. Both xanthan gum & white rice flour have me aching, flushed & feverish within an hour or 2 after eating it.

      Reply
  19. 19

    Lisa Mims

    A couple of thoughts: I was diagnosed at 29 by a doctor in another city, and, fifteen years later, my current set of doctors don’t put, “celiac,” on my records because it’s somehow inconvenient. (Even though I have a G.I. in this set, who told me to stay away from gluten after my latest biopsy did turn up something.) I’m not willing to do the gluten-challenge to get a perfect biopsy for them. I was sick enough the first time around, thank you very much.

    I don’t think her diagnosis means anything. If she needs to avoid gluten, she needs to avoid gluten.

    Also, I would go with the suggestions to eliminate other foods. Specifically, gluten-free oats make me as sick as real gluten. A small percentage of celiacs get sick from them, even though that’s not a popular view.

    Also, elimination diets help, but they may need to be adhered to for longer than you might think, to find out what else is making your daughter sick. All of us seem to have other food allergies. (Mine are eggs, red meat, pork, onions, and sesame seeds.) Some of the changes from eliminating other allergens will not be immediately apparent. For example: onions give me digestive issues overnight. Eggs have to be absent for my diet for a week, before I get better. Red meat and pork make me queasy, but the real changes in my digestion didn’t happen until I had stopped eating red meat for a month.

    I would do a slow elimination diet. (One item, a week at a time.) Whatever you do, don’t put her back on gluten.

    Reply
  20. 20

    Lima bean

    Sounds like she was never medically diagnosed with Celiac? and hasn’t really gotten better, maybe it is something else? I wonder if the GI is planning an endo and colonoscopy to look for other problems? In my mind, that would be a good idea.

    If all that is clear, it might be another food she can’t tolerate. Have you eliminated dairy for a few weeks and see if that helps? There are tests for lactose intolerance that the GI or Ped can do.

    I hope you can figure this out soon.

    Reply
    1. 20.1

      Lima bean

      Just a note: I didn’t realize the mom was replying above.

      Reply
  21. 21

    Alyssa

    Hello,

    I feel your pain. My 7 year old daughter is non-celiac gluten sensitive. She is sensitive to dairy, and all grains so even when she went gluten free she was still sick. Actually she got worse because the grains were really hard on her system. I agree with you that putting her back on gluten is not the answer. We are grain free and dairy free now. Our doctor also started her on digestive enzymes and probiotics and vitamins. I hope that you find the answers you are looking for. You know what is best for your daughter so make the decision for her and don’t let doctors or anyone else bully you into something. If you can find a functional medicine Dr or someone who specializes in gluten and food sensitivities. Best wishes!

    Reply
    1. 21.1

      Megan

      Agree 100% with Alyssa! She will need probiotics (good ones, don’t go to Wal-Mart; rather, find a reputable health food type of store) on an empty stomach or she will not heal. Try cutting out as much sugar as possible, too. Best of luck to you!

      Reply
  22. 22

    Cathy

    Does she wear a retainer? That very well may have gluten in it. Also, check any creams, shampoos or other products that she is putting on her body.

    Reply
    1. 22.1

      Lisa Mims

      This!!! I had gum disease symptoms for a year from a retainer that had gluten!!!

      Reply
      1. 22.1.1

        Julia

        Do you mean that the retainer is manufactured with gluten or that it was cross contaminated from prior gluten exposures? My son has celiac and is in braces now, so I will need to know for the future.

        Reply
        1. 22.1.1.1

          IrishHeart

          ok, let’s put this myth to rest. No problem with retainers.

          Amy Jones, MS, RD and Tricia Thompson, MS, RD published a post on GlutenFreeDietitian.com on November 26, 2013 regarding this case study. According to the expert dietitians, “There does not seem to be enough information provided in this case to demonstrate a true cause and effect between retainer use and tTg levels.”

          http://www.celiaccentral.org/research-news/case-study-reveals-unsuspected-source-gluten-10510/

          Reply
          1. 22.1.1.1.1

            Sarah

            I had problems with my retainers because I *cough* didn’t clean them properly. I just rinsed them off with water. They would gather build-up as a result, probably from the Listerine mouthwash I was using that’s not gluten-free, and I was having symptoms from that. Once I had them thoroughly cleaned at the orthodontist’s office, my symptoms improved. I also switched to Tom’s of Maine Children’s Anticavity mouthwash. I brush those retainers daily now, and I think that even my teeth are a lot cleaner as a result. Yes, this is an embarassing thing to admit, but if it helps someone else, that’s good. :-)

            Reply
            1. IrishHeart

              Listerine’s policy states that they “do not certify their products to be gluten free as they do not specifically test for gluten, but that there are no gluten-containing grains in the product.”

              This is true for MANY products we all use: meat, fruit, vegetables, nuts……

              Reply
              1. Hap

                Hello Irish

                I don’t know about the gluten or no containing properties of Listerine especially the Artic Mint, which I used all my life until my Celiac/GERD Dx, but I had to stop using it because the alcohol would seep down my esophagus and brutalize my GERD. I miss my Artic Mint!

                Reply
                1. IrishHeart

                  Mint can burn the beejeepers out of our throats for sure, but
                  this idea about “gluten in listerine” came from a discussion about retainers.

                  I gave the info that debunks the “gluten” in a retainer . I hope you will all READ it.

                  and now, it has morphed into maybe it was the listerine…??

                  and I just posted valid info about THAT, too.

                  Now, it’s maybe carrageenan…etc. etc.

                  So what should we do?
                  Be afraid of everything?

                  I see a ton of speculation going on everywhere lately on many GF sites ……this makes me very sad. This will not help anyone.

                  I am truly ready to bail since there does not seem to be any sense of logic about any of this anymore.

                  Reply
                  1. Hap

                    Dear Irish

                    Yes – NO more mint for me yet!

                    You’ve worked much too hard today. We could never, never do without your wit & wisdom! Please sit back with a nice cool Tito’s in your hand, prop up your feet, and close your tired eyes – it’ll all be better tomorrow.

                    This situation brings several quotes to mind, in no particular order, from my lovely Grandmother, an English lion, a feisty willed Southern woman who probably liked mint in her alcohol to a strong young voice.

                    A scene that has to be seen to be believed:
                    “You crazy people are running around here like a bunch of chickens with your heads cut off.”
                    — Hap’s Grandmother

                    Unlike Rhett, I MOST CERTAINLY CARE where you go & what you do:
                    “Scarlett: Rhett, Rhett… Rhett, if you go, where shall I go? What shall I do?
                    Rhett Butler: Frankly, my dear, I don’t give a damn.”

                    Irish, because as Mr Churchill stated, “When the eagles are silent, the parrots begin to jabber.”, please take the old Lion’s advice:
                    “If you are going through hell, keep going”
                    “Never give in – never, never, never, never, in nothing great or small, large or petty, never give in …”

                    Take a long cool sip of Tito’s and sing with Annie:
                    “The sun’ll come out Tomorrow
                    Bet your bottom dollar that tomorrow there’ll be sun…
                    So ya gotta hang on til tomorrow come what may…
                    I love ya tomorrow you’re always a day away!”

                    Good night sweet Irish – we couldn’t do without ya tomorrow! (And all of that encouragement comes from a one eyed man who can’t eat what he wants or golf when he wants to golf)

                    Reply
  23. 23

    BlushinRose

    I hope you daughter feels better really soon. Watching you child be uncomfortable stinks. Gluten is in the weirdest things. Once school gets out (just in case she is getting something there), you might have better handle on it. I have been gluten free for 5 years and I still get caught now and then. We all do. I was having a harder and harder time in the is past year and my dr suggested a full elimination diet. I just couldn’t face that so I went “Whole 30” in March. Basically I eat meat, poultry, fruit, vegetables, olive oil, some nuts, water, coffee, and tea. And all produce is organic and the meats grass fed, no corn fed, no antibiotics, etc. No grains at all, no sugar, no dairy, no beans, and absolutely no GF processed mixes or baked goods. I feel a lot better. Soon I will start adding in one thing at a time – so it is a modified elimination diet. I would never eat gluten for a biopsy at this point. Monitoring your daughter’s diet over the summer might give you some more insight..

    Reply
  24. 24

    Gloria @ glutenfreepoodlehome

    I really feel for the parents of this little girl. Your problem stems from your peds Dr. misguided diagnosis. She was given screening tests, not a diagnosis. He really should know better than to tell you to start the diet before the biopsy. The fact that she is not better might be gluten somewhere or might be another medical issue.
    Personally, if it were my child (and I do have a celiac child) I would feel better after having testing from a GI Dr. Also, as a dietitian, I had a patient once that was found to have celiac and Crohn’s both.
    People will give you alot of advice about eliminating other things. Dairy is a no brainer because many people are intolerant at first but people are eliminating things to excess.
    Elimination diets are sometimes necessary but in a child with problems it should be done under medical supervision if at all. It is a last ditch effort. Elimination diets are done the opposite way being describe. The patient is placed on a very restricted diet and new foods are added in slowly, one at a time, watching for any reaction. The patient needs to have all possible offending foods eliminated first and have some semblence of GI health before adding things in.

    Reply
    1. 24.1

      IrishHeart

      She was given screening tests, not a diagnosis. He really should know better than to tell you to start the diet before the biopsy. The fact that she is not better might be gluten somewhere or might be another medical issue.”

      THIS is what I have been saying, so thank you, Gloria.

      Reply
  25. 25

    Lima bean

    She might not need to eat gluten for 6 weeks:

    What is a gluten challenge?
    A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.
    Prior to blood testing we recommend 12 weeks of eating gluten.
    Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.
    In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy.

    http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge

    Reply
  26. 26

    GFJen

    Hi there – just want to point out that the dairy issue is with the casein protein and not lactose, so if you decide to go dairy-free and buy lactose-free dairy products she will still get the protein that could be bothersome.

    One resource you might want to look at is Practical Paleo by Diane Sanfilippo. She provides lots of good information on what different foods/nutrients do in the body and explains how our body digests, eliminates, etc. in a readable way. She also gives menu plans and recipes for certain health concerns, Celiac being one of them.

    And for what it’s worth, I would not put my child or myself back on gluten, at least not this early. I would give her body some time to heal and I would remove dairy and give her probiotics.

    One more word for you: Bacon! When I detoxed once and was so sick and weak that I could barely stand – bacon saved me! Good fat and protein source. :-)

    Good luck to all ~ and don’t be afraid to get a second or third (professional) opinion.

    Jen

    Reply
  27. 27

    Gluten Dude

    Going back on gluten to get a confirmed diagnosis is such a personal call. You will make the right decision that’s best for you and your family.

    Reply
    1. 27.1

      Rachel

      As the Dude said, you will make the right decision for your family, whichever one you choose. Hugs to your sweet daughter!

      Reply
  28. 28

    thetxlady

    If you only have a week until school is out, you’re lucky. Friend that’s a teacher has school lunch as part of her compensation plan, the “gluten free” lunch includes a quaker valley granola bar…2nd ingredient is BARLEY MALT! Worse she was being served this while preganant & fully diagnosed with gluten intolerance. Interesting “by the way” considering the GF children in school got the same meal!
    Its entirely possible that cross contamination or lunch trading is going on. Cookies, sweets, granola bars traded at lunch, soccer snacks even pasta used for craft projects are all possible cross contaminants. Replacing grill parts & toaster (even having a GF & non-GF) should help.
    Make a plan for this summer. Cooking ahead, lunch box for camp, even a “turn in” reward program (bring you unsafe she’s served for compensation) may help.
    Personally I would find a new pediatric GI, this may require seeking out a regional childrens hospital. I had biopsy show flat villi before celiac was even a known disease, blood test result years later confirmed what my body said was true.
    Stick with your gut, while biopsy is “the gold standard” there logically isn’t a reason to confirm what you know…kinda like taking a pregnancy pee test after having a sonogram to confirm pregnancy. You know what the issue is, the question is what else is a potential issue?
    Hashimotos, shojrens, pancreatic insufficency, electrolyte imbalance, even diabetes like symptoms related to celiac are very common. Dairy, soy, additional grains like rice & quinoa can be issues as well as nightshade vegetables like eggplant, peppers, tomato. Its frustrating but realizing this is a process where every case is a little different takes some of the pressure off. It is entirely possible to have the gluten thing down yet through ignorance, sabatoge, or it being yet another issue still have problems.

    Reply
  29. 29

    Mary

    Hi Rob and Elizabeth,
    There’s been a lot of good suggestions so I’m not going to add any. I will say this for encouragement for your journey. After many years I thought I totally had it nailed for myself about gluten and other health issues and my symptoms. Though I am 7 months into healing a leaky gut with the help from a nutritionist and still have a long way to go, but I have been able to kick things up a notch in other areas from the information I have gleaned from Gluten Dude’s posts from years back before I found it. There have been many comments by the community with valuable information that not one specialist ever told me, nor any info that I ever found in my own research to help keep me safer. I found new more valuable and reliable resources to go to from many people here. I hope you do too and have found some helpful info in the comments already posted above to help you make a decision. It will be your own, I know it is very difficult to watch your child suffer and get conflicting advice from Drs.
    My best wishes for you and your daughter! Keep us updated.

    Reply
  30. 30

    Ann

    Gluten Dude,

    I have celiac – diagnosed in Oct. 2013. Sick with fibromyalgia and chronic fatigue syndrome for 18 years. Diagnosed Hashimoto’s hypothyroidism a year ago at my first visit with my awesome integrative/functional doctor. The Hashimoto’s diagnosis ultimately led to the Celiac Diagnosis. Shocking. No overt digestive symptoms – just every fibro/autoimmune type symptom in the book. I am eternally grateful to my “angel” doctor who kept digging and testing until we found a root cause for of my health issues. I am 7 months gluten free – feeling better – still healing and have a long way to go.

    So…..here is my question and it pertains to this particular post so, I will ask it here. Many celiacs also have other food intolerances due to our extremely damaged intestinal systems. I see over and over that people should try an elimination diet. Eliminate dairy, eggs, etc…. After a few months of gluten free, I was NOT feeling better, so we skipped the elimination diet step and my doctor ordered a IgG Food Antibody test. This is the BEST tool for a celiac and I just don’t understand WHY doctors are not using this tool. It is outside of the box thinking than modern conventional medicine, but celiacs should be aware of this tool. It is expensive. My insurance covered most of it. I only paid about $200. It tested me for intolerances to over 100 foods and 25 spices. My results were shocking! I am intolerant to about 40 foods and NOT the ones you would think. I am intolerant to many fruits and vegetables. Weird ones – everyday foods that seem like you should not be intolerant too – like bananas, peaches, pears, carrots, lettuce, watermelon, coconut, etc….
    The foods that I am OK with are many of the foods on the elimination diet. I NEVER would have found these intolerances on an elimination diet. NEVER! I would have driven myself crazy trying to figure it out on my own.

    Since eliminating these foods, I feel so much better. And although I am diligent about gluten free, I sometimes will slip with the other intolerant foods and I pay for it dearly. It is awful. Digestive symptoms and relentless fatigue and aches. I know that I will not have to stay away from these foods forever. Just until my “gut” heals which may take years, but I shudder to think that I would NEVER heal if I didn’t have this list. I truly don’t understand why this isn’t protocol for Celiacs with damaged systems.

    Gluten Dude, have you ever had this test done? Have you heard of it? My test came from Genova Dianostics lab. It was a send out. Meaning my doctor gave me this kit and I took it to the lab and used Fed Ex to send it to Genova. I have heard of other labs that have this test too. I don’t have that info though. I am making this comment here on your blog b/c I hope other Celiacs read it and ask their doctors about it. I wish I could get the word out to my fellow suffering Celiacs, but I don’t know how to do it. So, I am sharing this info with you. Most doctors will probably not be interested in running this test, but if you find a natural/holistic/integrative doctor who practices functional medicine they will do it!

    I can’t believe so many of my symptoms and so much of my life has been consumed with a disease that I didn’t even know I had. And most of it all revolved around food. And I am being aggressively diligent in pursuing how to heal my damaged and broken body. Making slow progress. But it is progress.

    Thanks for all you do! Knowledge is power.

    Reply
    1. 30.1

      IrishHeart

      “my doctor ordered a IgG Food Antibody test. This is the BEST tool for a celiac and I just don’t understand WHY doctors are not using this tool. It is outside of the box thinking than modern conventional medicine, but celiacs should be aware of this tool. ”

      With all due respect, I have to say something now.

      This is not a tool for all celiacs. This it not even a valid diagnostic tool at all. No Pub med articles whatsoever to support this type of
      food intolerance” testing.

      Sorry, but I have to speak to this issue because I have read so much research on this and I find this to be a very important topic.

      http://www.sciencebasedmedicine.org/igg-food-intolerance-tests-what-does-the-science-say/

      http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets9_Allergies.pdf

      No correlation found between higher IgG levels and food intolerances

      http://www.realnatural.org/elisa-igg-testing-for-food-intolerances-proves-inaccurate/

      http://articles.chicagotribune.com/2012-04-11/health/ct-met-food-intolerance-tests-20120411_1_food-intolerance-food-sensitivities-food-additives

      From the University of Chicago Celiac Disease Center
      Q :Can the Elisa IgG food panel detect non-celiac gluten sensitivity?
      A: No, it can’t. In fact, it can’t detect any form of food allergy or intolerance.

      Reply
      1. 30.1.1

        Ann

        Sometimes integrative medicine is light years ahead of conventional medicine. And when I eat the foods on my intolerant list, I have hell in my intestines. That is all the proof I need.

        Reply
  31. 31

    Chloe

    That poor little girl! I get that the GI doc may want to re-introduce gluten so the can confirm it in the biopsy, but personally I would have major reservations about putting my body through that!

    I’m not a medical practitioner in any form, but from my own experience it took a long time for my body to heal (2+ years) and I had a lot of nasty aches, pains and lethargy. I also cut cows milk out of my diet as I found I reacted really strongly to it with a skin rash and muscle pains in addition to stomach problems and gastrointestinal distress.

    I noticed the comments about her possibly consuming gluten in school and this could very well be the case. It’s tough but as she’s so young it’s important to micromanage! Replacing your pans, oven grills and such sounds like a good step and I really hope it helps!

    I really wish you the best and sincerely hope she improves!

    Reply
  32. 32

    Kate

    If the little girl does have Celiac, she could very well have other auto immune diseases as well. Has she been tested for lupus or rheumatoid arthritis? These are things that they might want to look into. Hope they can help this sweet girl soon.

    Reply
  33. 33

    Julia

    Since your daughter’s diagnosis was only two months ago, you may need to take a harder look at the food in your house. I say this from experience because it took us at least six months to get all of it out of our house. For example: a bag of Goya dried beans …100% beans! Who would think to check the label to see that it’s made on shared equipment?! Then we discovered that the corn meal that clearly said ‘100% pure corn meal’ right in the front had a tiny printed warning on the side of the package stating that it was made of shared equipment. Then we had to check toothpaste ingredients and most importantly REPLACE the old glutened toothbrush! I found it helpful to think of de-glutefying process in phases: first you get the obvious stuff out, then you get wiser and find the hidden stuff.

    Don’t beat yourself up when you find these things, it happens, believe me. We are two years post diagnosis and just glutened our son big time because we got lax with label reading and mistook the gluten free Rudi’s bread with their organic (wheat) bread that was sitting right next to the gluten free stuff. To make matters worse we didn’t realize the mistake until weeks later. He had been suffering for so long and we could not figure out why. Celiac sucks, but if it had been a peanut allergy and we made that big of a mistake, we would have killed him.

    Hope this helps. Good luck with everything :)

    Reply
    1. 33.1

      Gluten Dude

      Wow…that’s the second Rudi’s story I’ve heard in the past 24 hours. They seriously need to change their packaging. Let me see if I can reach out to them.

      Reply
      1. 33.1.1

        Lima bean

        Just highlighting the First Rule of Celiac – read the ingredients carefully before eating!

        I doubt you will get the company to stop making gluten containing bread. But, good luck with that! :)

        Reply
        1. 33.1.1.1

          IrishHeart

          We can’t blame the company for a consumer’s mistake reading a label.!

          We’ve all done that.

          Reply
      2. 33.1.2

        Hap

        GDude

        I think contact from you to Rudi’s may help just to let them know.

        I buy Rudi’s GF cinnamon raisin for breakfast and multigrain for a quick sandwich since I’m not close enough to NYC to buy Jen’s bread.

        Our grocery store separates the packages but I’m still careful to watch which ones I pick up.

        I think the reason why it is easily confused is because the packages are so colorful and GF is a light green so our eyes are not quickly drawn to GF and our brains assume it’s Rudi’s so it’s OK. Rudi’s could avoid most of the education if they make GF a much more noticeable color for quick mindless identification.

        My 2 cents – I do appreciate and enjoy their products for “fast good”.

        Hap

        Reply
    2. 33.2

      Jennifer

      I, too, discovered that tiny print on the back of a “100%” cornmeal package that says “produced in a facility with equipment that is shared with wheat…” I discovered that after the heart palpitations, anxiety attack, fatigue, and major bloating. I had to backtrack to find what I had eaten that triggered my symptoms. I couldn’t believe I had been so careless. I always read packages (well obviously not always in this case). I guess I let my guard down.

      Reply
    3. 33.3

      margaret

      I was diagnosed at the end of 2010. After going gluten free I initially felt much better (less fatigued for one thing). Then I had a two-year period of feeling horrible a lot of the time, with varying gut problems (one day okay, the next day sick and so on). Real healing only started after about two years. But after that I started feeling horrible again, with recurring (almost daily) diarrhea. Glutened? Some other intolerances? (I had worked out corn and citrus as being possible culprits). I had bad, bad reactions a couple of times after eating GF processed foods. Two weeks ago (after reading Dr Fasano’s book “Gluten Freedom”) I decided to make a radical change and cut out ALL processed foods, whether GF or not, and all grains. The result has been amazing: no gut problems, higher energy level. And no more worry about processed food labelled GF but in fact not GF at all. Life has suddenly become a lot simpler (I do like to cook, so that helps). So it might be worth a shot to see whether your daughter heals on the Fasano cross-contamination diet (he recommends 3 months). But I know how hard it is for kids to be compliant (my own daughter was diagnosed with diabetes type 1 at age ten, at a time when the diabetes diet was extremely restricted.)
      Good luck with your daughter!!

      Reply
      1. 33.3.1

        margaret

        Just a quick clarification: I posted this before I had scrolled through all the replies below. Irish Heart gives a beautiful explanation of the Fasano cross-contamination elimination diet (and what you can and can’t eat). I do NOT fall in the Fasano category of non-responsive celiac (my blood work has been good for two years) but I was sick (literally and figuratively) and tired (literally and figuratively) of having to ask myself: why do I feel so shitty all the time? What have I done wrong? What could it be? (In fact, this is how I found this blog – surfing for an answer to the question “is this as good as it gets?”).
        Rob and Elizabeth: Please keep us posted on your daughter!

        Reply
        1. 33.3.1.1

          IrishHeart

          I myself have done a paleo diet and the Fasano protocol for 3 month intervals in the past 3 years. .

          There’s no harm in people trying different dietary eliminations to see how they feel.

          In fact, the paleo diet was how I discovered I had a histamine intolerance and MCAS. It just confirmed what my GI doctor and I had already suspected.

          My point in replying to Heather was not about the use of diets.
          It was about the use of alarming “statistics”.

          :) I hope this explains my response.

          Cheers, Margaret!

          Reply
  34. 34

    Greg Soilder

    Well all today I am reading about how Dr. Peter Gibson has proven Gluten Intolerance is FALSE. http://chicagoist.com/2014/05/19/being_gluten_free_isnt_dumb_but_it.php & http://thefederalist.com/2014/05/19/science-how-does-it-even-work/ and how FODMAPS is the real diet for Gluten Intolerance http://www.dailymail.co.uk/health/article-2632723/Gluten-DOESNT-cause-bloating-actually-little-known-FODMAPs-blame.html

    However every online newspaper fails to point out Dr. Peter Gibson is the one that created the FODMAP diet http://en.wikipedia.org/wiki/FODMAP and that this study that Gluten was all in the mind of people who are Gluten Intolerant was funded by a WHEAT producing company called George Weston Foods http://www.gastrojournal.org/article/S0016-5085%2813%2900702-6/abstract Here is what George Weston Foods produces http://www.georgewestonfoods.com.au/who-we-are/gwf-fast-facts.html

    Well now we begin to see Dr. Peter Gibson’s study is only to promote his diet and has the backing abd funding of the Wheat Industry.

    I am telling the people here who have real problems with Gluten that the wheat industry is trying to attack and destroy the Gluten Free community who has major problems with Gluten. We see it now more and more from Jimmy Fallon to the Huffington Post and Fox News and beyond. These wheat lobbyist are trying to reverse this trend and make people feel uneasy about saying they have real problems with Gluten. We are being attacked and in a very heartless way by the Wheat lobbyist and I am telling people like Actress Jennifer Espisito, Elizabeth Hazzelbeck, Keith Olbermann, Emmy Rossum if they do not start speaking out against Dr Gibson and the fact that a wheat industry was funding the studies to prove gluten Intolerance was bull which as I think I have proved was basically funded by those who want to promote there diets like Dr. Gibson’s FODMAP diet and wheat companies whowere funding this study and want people to get sick by eating there wheat products by forcing them into peer pressure. I know eventually we will be reading that the FODMAP diet will be the diet that people with Gluten Intolerance will be told to eat from there nutritionist because of this phony study by Dr. Gibson. Just like the media it will not be revealed that the FODMAP diet is the work of Dr. Gibson and I will lay a dollar to a Gluten Free donut, the FODMAP diet will do jack for those who have Gluten Intolerance. Well HEY AS LONG AS THE HEARTLESS WHEAT INDUSTRY IS MAKING MONEY THAT IS WHAT IS IMPORTANT. To Dr. Peter Gibson YOU ARE A FRAUD AND WHEN PEOPLE GET SICK BECAUSE OF YOUR FODMAP DIET I hope you can live with that guilt sit. I proved your study was funded by people trying to get rid of the Gluten Free diet which is the WHEAT industry and proved your only trying to promote your BS FODMAP diet that not 1 online newspaper will mention is YOUR CREATED DIET. Shame on you Dr. Peter Gibson. I know your FODMAP diet is BS for Gluten Intolerant people.

    THANK YOU ALL FOR LETTING ME HAVE THE TIME TO TELL YOU THE TRUTH ABOUT DR. GIBSON in Australia.

    Reply
  35. 35

    Greg Soilder

    I also find it very weird that Jessica Biesiekierski who is also doing a study on Non Celiac Gluten Sensitivity or Gluten Intolerance http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html is also mentioned as being funded by George Weston Foods the same Wheat company that funded Dr Peter Gibson’s studies on Non Celiac Gluten Sensitivity http://www.gastrojournal.org/article/S0016-5085%2813%2900702-6/abstract
    Click the link above and go all the way to the bottom where it says FUNDING FOR DR. PETER GIBSON AND HIS FODMAP STUDY
    http://www.gastrojournal.org/article/S0016-5085%2813%2900702-6/abstract
    **Funding This study was supported by George Weston Foods as part of a partnership in an Australian Research Council Linkage Project and the National Health and Medical Research Council (NHMRC) of Australia. Jessica R. Biesiekierski and Simone L. Peters were supported by scholarships from the Faculty of Medicine, Nursing and Health Sciences, Monash University. Evan D. Newnham was supported by a scholarship from the Gastroenterological Society of Australia.**

    It is sad to see the media all saying Gluten Intolerance is a lie but not pointing out who created the FODMAP diet and who is funding this non celiac Gluten Sensitivity study to say it is all in your mind that Gluten is the issue. SHAMEFUL and I really do not know if I can trust Jessica R. Biesiekierski study when it comes out about Non Celiac Gluten Sensitivity. You know if she is being funded by a wheat company called George Weston Foods she is going to support a wheat based FODMAP diet and the media will cheer to the end of Gluten Free and making people sick all over again. CHEERS. Sorry when something something does not sound right, I have to report about it.

    Reply
    1. 35.1

      IrishHeart

      and what does this have to do with the topic exactly??

      Reply
    2. 35.2

      Sarah

      The low FODMAP diet could actually help some of those who think they are NCGS but may actually just have a FODMAP intolerance. I would think we’d all would love to find the root cause of our problems, whether it’s gluten, FODMAPs, or something else. The low FODMAP diet restricts wheat, and the amount of restriction varies based on what the individual can tolerate.

      Reply
      1. 35.2.1

        IrishHeart

        yes, that is true Sarah and I have written about this many times in the last week, but I am seeing a flood of posts on many GD blogs articles about the news articles that were posted on the internet regarding the doctors who did the study about NCGS.

        The dude’s site is being bombarded with posts about it and it is probably not relevant to this particular situation.

        I do not like it when people make posts to push an agenda.

        but I’ll let GD speak to this.

        Reply
  36. 36

    Miss Dee Meanor

    I think we have swamped these poor parents with facts and opinions today. I may be making an incorrect assumption, but I think their concern isn’t about getting an endoscopy. I feel they would have no issue with that to make sure nothing else is going on (I hope they correct me if I am wrong). I feel that their fear is having to require her to eat weeks of gluten prior to the endoscopy. I would have a really hard time doing that to myself. I can’t imagine being faced with doing that to my child. An endoscopy alone would be a prudent thing to do.

    I think if she possesses the Celiac genes, had positive results on the Celiac blood panel, responded well to the gluten-free diet initially, and had symptoms of Celiac prior to removing gluten then her pediatrician was probably feeling safe in diagnosing her without having the endoscopy. (Dr. Fasano himself endorses this as being enough.) Was it the best thing for this pediatrician to recommend? No. Her mother said herself she wished she had gone through the endoscopy before removing gluten. However, when your child is very sick and a pediatrician says it is due to gluten you want to do that immediately rather than waiting weeks to be seen by someone else.

    So we all agree she should have an endoscopy. Is it worth it to put her through weeks of gluten? That is the answer that these parents are seeking. I am torn on this one, but I’m not sure how I would respond if it were my child suffering and I was sure that gluten was the cause.

    Reply
    1. 36.1

      IrishHeart

      I agree, but I also think we have swamped these poor parents with more than just opinions, Dee.

      Speculation serves no purpose.
      I am truly discouraged by the amount of bad info being thrust at them.

      I’m out.

      I wish Rob and Elizabeth all the best as they look to find answers for their daughter.

      Reply
      1. 36.1.1

        Miss Dee Meanor

        I agree totally, IH. I’m not sure how the FODMAP discussion got started. I’ve never researched it, but I thought wheat was one of the biggies that was avoided. *face/palm* Thanks again for always providing opinions weighed with verified facts. I certainly appreciate it.

        Go fix yourself a Titos and relax. I hope these parents haven’t run for the hills thinking we’re all crazy. Then again, that shoe may fit me perfectly. Just call me Glutenella.

        Reply
        1. 36.1.1.1

          IrishHeart

          Seems as if someone has taken to posting tirades about the “NCGS article is not real/FODMAPS guy” and they have an agenda.
          Read the damn articles before getting yourselves worked up.

          Seems as if the focus has gone from helping the parents to
          posting “theories” of all sorts.
          How is this helpful? it’s not.

          I have a Tito’s already. IMHO, it’s been a bad day for “celiac awareness” all around.

          I am truly, truly tired of myth- busting.

          and Thanks so much, Dee! I hope you are feeling well now.

          xx IH

          Reply
  37. 37

    Gluten Dude

    Dang folks…just looking to help a family in need. You know I’m not about spreading unwarranted fear. Regarding the retainer, a friend and fellow celiac was sick for weeks (and was newly wearing a retainer) and actually called the manufacturer and they said there was indeed gluten in their molding. That is where I got that info. Does it mean every retainer is dangerous? Of course not.

    And I just found it ironic that twice in 24 hours I heard about a person misreading the Rudi’s label. The one yesterday got violently ill. Yes, it is 100% up to us to read labels and in no way was I blaming Rudi’s. But I don’t buy their product so I have no idea how clear the labeling is.

    Let’s get back on track here…thanks.

    Reply
    1. 37.1

      Lima Bean

      If your retainer was leeching any substance, it must have fallen apart pretty quickly and was likely not compliant with health laws. Use of gluten in the “mold” doesn’t not mean there is gluten in the retainer. You might need to wash the new retainer well to get any residual “gluten” off the surface.

      Reply
  38. 38

    Rob

    My wife & I just wanted to thank everyone for taking the time to post their thoughts and advice here. It really is helpful to hear from people that have gone through this or that have kids that have gone through this. We have an appt w/ the same GI doc this Thursday to discuss our options. I’d have to say at this point we are leaning towards moving forward w/ a biopsy to make sure there isn’t something else going on with her. We initially thought we’d wait until NEXT summer to do it, but the last thing we want is to be at this same point months from now only to find out that we should have been doing something different (or find out that it’s something more serious that needed immediate attention). Again….thank you all again for the help!!

    Sincerely,

    Rob & Elizabeth

    PS….Our daughter doesn’t wear a retainer, for what it’s worth.

    Reply
    1. 38.1

      Miss Dee Meanor

      Please keep us advised on that choices you make. We can be a rowdy bunch, but all our hearts are in the right place. Many other medical problems present in Celiac’s company. You certainly have a lucky daughter to have parents who press forward for answers. I look forward to hearing the outcome. Blessings to you all!

      Reply
    2. 38.2

      Claudette

      I want to echo a few things that have been said above. She’s been “gluten free” for what… two months? My gues is that her small intestine has healed yet. Further, my guess is that, despite your best efforts, she’s still getting minute amounts. (Nothing personal here. I still find ways that I cross-contaminate myself from time to time and I’m 4 years post-diagnosis. By the way… is she still eating oats? Oats are very tricky.) I betcha dollars to gluten-free donuts, if it’s celiac, her intestines are still a mess. Sure, the staging for the villous atrophy may not be accurate, But to my knowledge, nothing else but celiac causes that kind of intestinal damage. And if the villi are back, I can guarantee they are exceptionally fragile. And that can be seen on biopsy.

      To be honest, my bigger concern is the *large* intestine. I’m fully aware that Occam’s Razor says that we should consider the simplest and most parsimonious solution to be the answer until proved otherwise. But my (leaky celiac) gut says you should rule out UC and Crohn’s too. So if you do decide to biopsy without going back on gluten, do both ends.

      If I were you, I’d biopsy without a gluten reintroduction – or else introduce such a teeny tiny amount that you can document clearly to the doctor what happens to your daughter. I agree. Handing her a bagel tomorrow is a BAD IDEA. But if you reintroduce a teeny-tiny amount and it sends her back to a pain level of 10, as far as I’m concerned, you have your answer. It doesn’t need to be much – just enough to convince your GI that this is a serious problem.

      My record says celiac – but I’ve never had the biopsy. I tried to go back on gluten to have the scope done (I went gluten free unintentionally – long story). I lasted 3 hours with reintroducing gluten. What did I eat? One silver dollar-sized pancake.

      My diagnosis was made on the basis of antibodies being sky high and my family history. There’s a multigenerational history of acute abdominal problems, especially diverticulosis; tinea versicolor (the tinea skin disorders are far more common in people with celiac); and the “rice disease” as it used to be called when my grandmama was a child. She and two of her siblings survived the Depression by eating rice cooked in goats’ milk because it was the only thing they could keep down.

      So, Rob and Elizabeth, I wish you and your little girl well. You’ve been given a lot of information here, some of which is more useful than others. Ultimately you have to do what is right and best for her. But if I were you… I’d have the biopsy done ASAP – and without reintroducing gluten.

      And with that, I’m back to my dissertation.

      Reply
      1. 38.2.1

        Claudette

        I meant, “my guess is that her intestine has *NOT* healed yet…”

        Reply
        1. 38.2.1.1

          Robyn Bray

          My GI said my test results were so definitive (high numbers, which he did not explain & I was too uninformed to ask) that he would diagnose Celiac without a biopsy. However, he said with such a strong reaction, it was best to biopsy to see how damaged my villi were & to look at inflammation. After the endoscopy/biopsy, he had me swallow a camera capsule, so he could get a more thorough look. Those were both informative and helped us better understand my prognosis.

          He didn’t mention that I should continue to eat gluten until after the biopsy, so I had been as GF as I knew how to be for 3 weeks. I read something about needing to have gluten for two weeks beforw the biopsy, and asked hom about it. He said even if I had been GF for up to a month it was ok. I guess he knew not much was going to change after 3 weeks of a novice’s gluten free endeavors. As I said, the biopsy & camera capsule were very revealing.

          As for other food issues: xanthan gum can mimic gluten. It is sometimes actually produced from a wheat product. It’s in almost every packaged GF product, like baking mixes. It’s also on about 50% of every processed food in grocery stores & in fast food oce cream…. even Wendy’s chili! Rice flour also acts just like gluten in my body.

          Rob & Elizabeth, this is overwhelming to you now. It DOES get easier. A year from now, you may only cry pver this pnce a quarter onstead of 3x a week. Two years from now, maybe you’ll cry over this once every 6 months. There are measurable milestones. Celebrate them when you recognize them.

          Prayers && best wishes!

          Reply
          1. 38.2.1.1.1

            IrishHeart

            “As for other food issues: xanthan gum can mimic gluten. It is sometimes actually produced from a wheat product.”

            It may not agree with you, it does have a laxative effect, but it is not because of gluten or wheat.

            It is produced synthetically usually. Every single celiac resources (dietary or research center) says it is safe for celiacs.

            It is made by fermentation of glucose by xanthomonas campestris bacterium, from which it gets its name.

            It could be the CC from those restaurant foods, too that is bothering you.

            Just a suggestion! best wishes.

            Reply
  39. 39

    Jacklyn

    Sounds like your daughter needs The GAPS diet (or SCD).
    Our Celiac daughter did not feel better after going off gluten and dairy. Our GI doctors didn’t know why and just wanted to prescribe meds. Instead, we started the diet, she felt great right away, did it for almost a year and it healed her gut that had been harmed from the gluten.

    Reply
  40. 40

    Bethany

    Be sure you have your daughter’s vitamin levels tested because Celiac and it’s damage causes malabsorption it does take time to heal. Two years post-diagnosis I found that remaining pain in my side, joint pain and nerve pain were in part from low vitamin b12 levels… while still ‘within the normal range’ when I began b12 supplements my pain decreased radically.

    I would also recommend a 3rd opinion, and taking the time/resources to travel to a children’s hospital for a specialist consult to look over all the data and help you set a plan for moving forward. Especially checking for any secondary conditions or deficiencies. I know this is an investment of time and money but my hope is that investing now and finding the path to health for your daughter will allow her to health saving you time, money and additional pain in the future.

    Reply
  41. 41

    Georgie

    You should also check the ingredients for shampoo, conditioner, soaps, washing powder etc

    Reply
  42. 42

    Chris

    Just looking over the comments above and I totally understand how you are feeling as a parent. Just wanted to chime in a few thoughts …will try to be concise!

    1) I think the pediatrician made a mistake by not referring you to see a peds GI in the first place to confirm the suspected diagnosis. Sorry to say this. Not sure what stool test they ran. Stool tests may be helpful to find fat in the stool, but not for diagnosing celiac as pointed out above by Irish Heart. As far as blood tests, review and make sure it is a positive +TTG. Nothing in medicine is perfect and there are also false positives (as mentioned above,Crohn’s disease is one). Also see if they did an EMA test. It is unique in that it has almost 100% specificity, meaning a positive is almost always a true positive. The older generation gliadin tests are not useful for celiac disease diagnosis. There is a newer generation of tests, deamidated gliadin antibodies (DGP), but these also have false positives and the TTG test is the best for screening.

    2) For celiac disease, it is a lifelong disease and it is important to make the diagnosis as firm as possible. It is good that this is only a few months in!
    The guidelines in Europe mentioned above apply to children with symptoms suggestive of celiac disease, TTG >10x upper limit of normal, +EMA, and + genes- HLA DQ2/8. (http://espghan.med.up.pt/position_papers/Guidelines_on_coeliac_disease.pdf)
    You may find it helpful to look at the specific numbers of your daughter’s labs, and but know that these guidelines have not been adapted by any of the US societies, so a biopsy is still the standard.

    3) The gluten challenge is always a tough question. There is some evidence that it takes most people years to heal and some never do. A minority of patients heal quickly. There is a chance that the endoscopy may show the findings of celiac disease now. Sounds like the peds GI wants to most definitive diagnosis. Again, you can look at the European guidelines above and make a decision. Docs in US would suggest endoscopy and peds GI docs often will look to exclude things like EoE as well. If she is not able to tolerate gluten, I would think the peds GI would/should agree to a biopsy right away

    4) if you are going to put your kid through an endoscopy, would also discuss with the peds GI the number and location of biopsies. If it was my kid, I would not assume anything. Should have at least 6 ( if not more) from both the bulb and 2nd portion of the duodenum. Also it may make sense to go to a place where the doctors (and pathologists see a lot of patients with celiac disease). As mentioned above, there are great places/docs in Boston, Chicago, NY, Rochester, UCSD, etc. If you do go for a second opinion someday, the slides can be reviewed and it is important to have the right number of samples.

    5) Lastly-once you figure out this diagnosis …would see a registered dietitian with expertise in the gluten-free diet. Hard to find in some places though. There are some great suggestions above…starting with the dude’s of course. If she is already skin and bones, would caution against limiting too may other foods with a restrictive diet and get the gluten thing worked out first

    Reply
    1. 42.1

      IrishHeart

      ” If she is already skin and bones, would caution against limiting too may other foods with a restrictive diet and get the gluten thing worked out first”

      Exactly my point above….. Thanks, Chris.

      Reply
  43. 43

    Denise

    I feel for your daughter and what you and your wife are going through. It took almost 20 years to diagnose my daughter. The best help we received was from the Naturopath. We found that refined sugar continued to make my daughter sick after the removal of gluten. So just be sure she is completely off of sugar as many celiacs also have small intestinal bacterial overgrowth that rages in their system. Look sibo up there is lots of information on the internet. Blessings to your family and your baby… :)

    Reply
  44. 44

    Anne Marie Malfi

    I agree with all 5 points you mentioned but would also consider that some foods, beyond the cross contamination issue, can mimic gluten, for me that was nightshades and ALL grains. Products and environmental factors should also be considered – I was having severe reactions that were also coming from shampoo and hair products. Another thing to consider is a parasite and candida and of course having celiac you have leaky gut so it does time LOTS of time and patience to heal – I’m 3 years into my journey. I would however absolutely NOT go back on gluten to take a test that already confirmed her condition. Best of luck to the family and great advice!

    Reply
  45. 45

    Heather Jacobsen

    The sad statistic is: 74 – 92% of celiacs on the traditional GFD (gluten-free diet) do not heal. If you want more information on those studies you can find them at stuffed-pepper.com.

    BUT people do heal on a grain-free diet. You might want to try her on a completely grain-free diet for a month. (I can also give you the reference to this study).

    Additionally, 50% of celiacs also react to dairy. So I always advocate for a Paleo diet, at least while undergoing the healing process. You can always, slowly start to add foods back in, once you see progress being made.

    I hope this helps! I really feel the pain and confusion that you’re going through.

    Heather

    P.S. We have lots of paleo recipes at Stuffed Pepper to help. :)

    Reply
    1. 45.1

      IrishHeart

      Where are you get those statistics???

      Reply
      1. 45.1.1

        IrishHeart

        Excuse my error. That should read

        Where are you getting those statistics?

        I was so stunned by those random percentages I hit post too fast.

        Reply
        1. 45.1.1.1

          Heather Jacobsen

          I know! Those statistics ARE stunning! I’ve always wondered why more people in the GF community aren’t talking about this!

          Here’s the link to the page that mentions the two studies, with references at the bottom of the page:

          http://www.stuffed-pepper.com/seven-things-you-should-know-about-going-gluten-free-and-why-going-gluten-free-really-should-be-going-paleo/

          Reply
          1. 45.1.1.1.1

            IrishHeart

            They aren’t talking about it because it is a limited study from 2009
            and because it’s not relevant! yes, I see this one study trotted out by some factions in the “G F community” as an agenda to promote a grain free, dairy free diet and sometimes, the SCD diet.

            OK, let’s look at the group studied

            “465 consecutive coeliac patients studied before and during GFD.

            the reason for this “not healing”?? Non dietary compliance!
            NOT because they need to be ‘grain free”.

            Plus, the study is about “adult coeliac patients”

            You are using one study and twisting the data to make a point.
            but it is a non-sequitor.

            Let’s look at the conclusion of that ONE study of 465 ADULT celiacs.

            “Control biopsies are mandatory to identify lack of response to gluten-free diet.

            AHA!

            “Duodenal biopsies at diagnosis were classified as Marsh I in 11, II in 25 and III in 429 cases. After a median 16 months GFD, 38 (8%) patients had histological ‘normalization’, 300 (65%) had ‘remission’ with persistent intraepithelial lymphocytosis, 121(26%) had ‘no change’ and 6 (1%) had ‘deterioration’

            SO?? it is not refractory sprue. And the 1% had deterioration, So? I have that! I was undiagnosed for most of my life. That does not mean someone is not healing.

            but this young girl has hardly had the chance to heal…it’s less than 2 months!

            I can cite numerous Pub Med abstracts/ studies to offset this one.

            “Only the younger patients (5 – 30 years) showed significant improvement of histology within 12 months ”

            “The major cause of failure to respond to a gluten-free diet is continuing ingestion of gluten, but other underlying diseases must be considered.”

            Take your agenda and your fear mongering elsewhere.

            Reply
            1. Heather Jacobsen

              Actually, it was 2 studies, the most recent being 2011. Patients not adhering to the gluten-free diet were taken out of the study. If the study is irrelevant, why did Dr. Fasano et. al quote it in a 2013 study, which proved that a grain-free diet does actually help to heal?

              I don’t understand why you’re accusing me of fear mongering. If you don’t believe the science, and you’re feeling 100% on your diet, great. But this information might be helpful to others.

              I’m just trying to help. If it were my 4 year old that wasn’t getting better, I wouldn’t be afraid to try grain-free. In fact, my 4 year old is 90% paleo herself.

              Reply
              1. IrishHeart

                Dr. Fasano et al. published a study that showed that some people would benefit from what is now known as the “Fasano diet”
                and since dairy and RICE is on the diet, he is not suggesting
                a paleo diet, sorry.

                ” Dr. Fasano and colleagues published a research paper on the effects of 3-6 months of a diet of exclusively whole, unprocessed foods on the symptoms of celiac patients who had no improvement while eating strictly gluten free. In this study patients were considered to have non-responsive celiac disease (NRCD) if they failed to respond to the gluten free diet or had a recurrence/relapse of symptoms despite being gluten free.
                The researchers coined their diet the “Gluten Contamination Elimination Diet.”

                Allowed: brown and white rice; all fresh fruits and vegetables; fresh meats; fish; eggs; dried beans; unseasoned nuts in the shell; butter; plain yogurt; plain milk, and aged cheeses; oils; vinegar (except flavored or malt); honey; salt. Beverages allowed include 100% juices, water, and Gatorade.

                Read the conclusion of the study please:

                “The GCED may be an effective therapeutic option for GFD-adherent NRCD patients. Response to this diet identifies a subgroup of patients, previously classified as RCD1, that is not truly refractory to dietary treatment. Preventing an inaccurate diagnosis of RCD1 avoids immunotherapy. Most patients are able to return to a traditional GFD without return of symptoms.”

                In other words, removing what could be trace CC or non-dietary compliance was the key.

                This child is hardly a “refractory case”. Let it go.

                I am glad you and your family benefit from the paleo diet, but it is not necessary for every celiac.

                Reply
                1. Heather Jacobsen

                  Wow. You seem so angry.

                  I didn’t say Fasano suggested a paleo diet. I said I did – based on these studies, plus the fact that 50% of celiacs react to milk, as well as further research I’ve done into the definition of gluten. I didn’t say it was right for all celiacs. And I didn’t say it was forever. But it might help someone who hasn’t found all the answers yet.

                  I will definitely let it go. You seem quite hostile, and I was just trying to offer advice that HAS helped others. Not sure how you’re comments are helping anyone…

                  Good luck.

                  Reply
                2. Hap

                  Irish

                  If you have time could you please explain in short synopsis or links to me the paleo diet as opposed to GFD. I don’t know enough about paleo to understand this discussion.

                  Irish, I read, understood and agreed with what you were saying, especially as relates to the subject 10 yr old daughter in Dude’s original blog post here. I thought you were direct, informative & matter of fact, but NOT angry or hostile.

                  The personal reason I’m asking is that when I was at my sickest point in 12/2012 through 3/2013, what kept me alive was baked sweet potatoes, white rice and vanilla ice cream – which does not sound paleo, but in compliance with Dr F. As I eliminated the remaining cross contamination from wheat facility products later in 2013 it seems I am healing completely. What’s wrong with brown and/or white rice? I understand the lactose problem.

                  Thanks

                  Hap

                  Reply
                  1. Lisa Mims

                    This is the wikipedia link to the paleo diet, if you’d like to do some reading before Irish gets back.

                    http://en.wikipedia.org/wiki/Paleolithic_diet

                    IMHO–There is nothing wrong with rice if you can eat it. It does make some people sick: in some people it aggravates SIBO (small bowel bacterial overgrowth). There are also people who have a separate disorder from celiac that makes it difficult to digest any carbohydrates; some percentage of the population in Asian countries is actually allergic to rice because of long-term exposure. And, obviously, it can make you fat.

                    (I’ll get cites if you want–that’s more difficult for me, because a lot of what I know is just from talking to people over the fifteen years I’ve been gluten-free. It makes for interesting dinner debates.)

                    Reply
                    1. Hap

                      Thanks Lisa! I read your link.

                      My diet now consists of grilled salmon 1/wk, chicken breast regularly, 3 or 4 eggs/wk, maybe a small beef filet 4 times /yr, venison tenderloin 5 or 6 times /yr, fresh vegetables and “power greens” daily, peanuts in shell often, apples, strawberries, blue berries, sweet potatoes often, some beans but not too often, rice not as much anymore cause I ate so much last year, and my over 50 vitamin daily. I don’t use salt, sugar and very seldom processed foods. I’m down to very little gf bread and a little olive oil as my dressing on my salads. I don’t use processed salad dressings anymore. I’m really getting use to and enjoying this eating style but always looking to adjust and improve now.

                      My GERD/esophogeal problems were so brutal my vanilla ice cream vice helped calm the fire but caused some bloating. Now that GERD is almost healed, I eat less ice cream & a few tomatoes with my salads again.

                      Sounds like I’m not paleo and I don’t understand why I should be. What’s wrong with my sweet potatoes, rice (you explained) some beans and ice cream. I don’t have to worry about gaining weight at this time.

                      I lost 36 lbs in 45 days at my sickest and have now gained back 19 of those lbs. I feel like I can really start exercising and elliptical again as soon as my eye heals but never rope jumping again. Don’t lift heavy weights anymore anyway.

                      I am truly interested if I need to consider any food changes + or – so I can keep going in right direction. Cutting out the wheat facility products seems to be getting me closer to complete healing and I don’t want to get stuck in a food rut so changes are good.

                      Thanks.

            2. Lisa Mims

              Just my humble opinion, but grain free = really gluten free for a lot of folks.

              In fact, personally, I do really well when I eat M&M’s daily. (I’m not lactose intolerant, or diabetic, or caffeine sensitive, and the original M&M’s are less than 10 ppm.)

              Would I recommend that, for health reasons otherwise? “Well, no.”

              It is grain-free, though. =0)

              Reply
          2. 45.1.1.1.2

            Dick L.

            I looked at the reference you cited, and the 74-92% figures seem to me to be directly contradicted by one of the two references cited for it. “After 5 years on a gluten-free diet, Murray noted, one in three adults with celiac disease still showed intestinal damage.” That would make the low end of the range 33 or 34%, not 74%.

            I’ve been following many discussions relating to CD and NCGS since I had biopsies 9/11/2013 that confirmed by family practice physicians preliminary diagnosis of CD. The statement that “The sad statistic is: 74 – 92% of celiacs on the traditional GFD (gluten-free diet) do not heal” is very different from the impression I’ve gotten over the months, which is in line with the view of the Mayo Clinic College of Medicine’s Dr. Murray, cited above.

            I’m sorry if the responses to your statement seem hostile, but it’s hard not to be irritated by things like this.

            (I tried to find the older paper by Lanzini, et al., but all I could come up with was the abstract. This would seem to support the 92% figure, but one would have to see the paper itself to sort out the details. A direct reference to the paper would be useful.)

            Reply
            1. IrishHeart

              Thank you, Dick for citing the Murray study. I was going to post that one next.

              I am not hostile. I am not angry.

              I am disgusted.

              Some people in the GF community use one or 2 studies of a limited number of celiacs that distorts the statistics to suit their purposes.

              The problem with citations culled from ONE study is it creates
              fear. Most people do no read full texts in Pub Med articles (I do not blame them. I have read dozens and they can be pretty dry) :)

              They read headlines or twitter feeds or FB or they read a quote from someone’s articles….and then panic.

              Here’s an example:

              “plus the fact that 50% of celiacs react to milk”

              That’s just not true.

              50% of ALL CELIACS DO NOT react to milk.,

              Here is the study for this inflated percentage

              “Rectal challenges with wheat gluten and dried CM powder were performed in 20 patients with CD and 15 healthy controls. Fifteen hours after challenge the mucosal reaction was recorded by the mucosal patch technique with measurements of local release of neutrophil and eosinophil granule constituents; myeloperoxidase (MPO) and eosinophil cationic protein (ECP).”

              Let’s look at the facts:

              20 patients (does that sound like all the celiacs in the world?)
              wheat gluten and ground cow milk protein
              rectal challenge

              Their findings?
              “A mucosal inflammatory response similar to that elicited by gluten was produced by CM protein in about 50% of the patients with coeliac disease.”

              http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

              10 people had an inflammatory response to ground cow’s milk.

              I’ll let the rest of you decide if that means definitively
              that ” 50% of celiacs react to milk”

              Reply
              1. IrishHeart

                While I am at it, full disclosure.

                I have concerns with information coming out of the “stuffed pepper” site.

                They posted an article saying diet coke has gluten in it.(nope)
                Time to take that one down, people.

                They have a video that has someone suggesting Cyrex lab tests for “gluten sensitivity”.

                But, there are no valid tests for gluten sensitivity at this time.

                That’s not my opinion, That’s the opinion of every celiac researcher.

                So, yes, maybe I am a wee bit angry.
                I do not like seeing people jerked around with misleading information.

                Reply
                1. Hap

                  Irish

                  You know how much I respect your opinion and I don’t know sweet pepper from Adam’s housecat; however, I am certain there are problems with Diet Coke.

                  I had not drank any soda from Nov 2012 through Sept 2013 and I drank 2 diet cokes the first week of Oct 2013 before my 2nd endoscopy 2 wks later. I suffered a severe gluten reaction from the 2 diet cokes and have the GI discussion & color endoscopy pictures to prove it. The acid for me was a stupid mistake also.

                  I checked the Coke website and there are some Diet Coke flavors that contain gluten and Coke won’t guarantee no CC. I don’t drink sodas of any type anymore but for sure no Diet Coke.

                  I think Diet Coke falls into the product category that not supposed to contain gluten but don’t be surprised if you get glutened or have a reaction from CC. Just not worth it for me.

                  Reply
                  1. IrishHeart

                    Acid from the coke would certainly give you inflammation in the gut. That stuff is horrible IMHO

                    I am not going to argue this point with you or anyone else, but I politely point out to you that there are any number of reasons why your endoscopy results could show inflammation. It’s not always about gluten.

                    At our age, our guts would be still be a mess for a number of years.

                    I’ve got scar tissue in mine, despite dietary compliance.
                    Inadvertent CC when I was new at this and various other food intolerances can contribute to that inflammation, too.

                    I am exhausted debating the finer points of gluten and cross contamination with people. but for the record:

                    “According to the Coca-Cola Co., the following Coke-branded products are considered gluten-free to 20ppm in the U.S.: Coca-Cola, caffeine-free Coca-Cola Classic, Coca-Cola Zero, Cherry, Coke, Diet Cherry Coke, Cherry Coke Zero, Vanilla Coke, Vanilla Coke Zero, Diet Coke, Diet Coke Plus, caffeine-free Diet Coke, Diet Coke with Splenda, and Diet Coke with Lime. ”

                    This does not apply to Canada, so if you are in Canada, drink water.

                    http://celiacdisease.about.com/od/Gluten-Free-Beverages/a/Gluten-Free-Soda.htmsomething else.

                    .

                    Reply
                    1. Hap

                      Agreed, but here is the language from Coke’s website back in 2013. Don’t know if they later changed or not:

                      “We can assure you that the exact amount of gluten in these products is very low
                      – perhaps even zero. Some minor ingredients in these products are manufactured
                      from plants that gluten-sensitive people could react to, so we are unable to
                      state categorically that they are totally gluten-free even though they may have
                      undetectable levels of gluten in them. The Codex guideline provides a very low
                      threshold for gluten content. However, extremely gluten-sensitive individuals
                      should discuss consumption of these products with their health care provider.

                      We hope that this information is helpful. Should you have additional questions
                      or comments, please visit our website again.”

                      Unfortunately, I’m one of those “extremely gluten-sensitive individuals” and anyone else in my category should be careful of Diet Coke and other soda products if you have a reaction.

  46. 46

    Jennifer

    I agree with the others, about having other intolerances, but one that is way out there (even for our community) might be artificial sweeteners. I know I react to ANY artificial sweeteners as badly as gluten. While I’m sure your daughter isn’t having a daily diet soda (like I was), she might be chewing sugar-free gum, or eating sugar-free breath mints. Both of those, tiny as they are, were enough to make me sick for days.

    Reply
  47. 47

    Jennifer

    This is probably NOT what your daughter’s problem is but I’ll share anyway. A co-worker of mine had a young daughter who was always in pain and had digestive problems. Fast-forward through lots of tests and she was diagnosed as a Celiac. They removed gluten from her diet but she was still in a lot of pain. Finally after a few more tests they decided to remove her appendix. It wasn’t infected; it was curled up like a pig’s tail. They also had to untwist part of her intestines. They were not fully blocked, but twisted enough to cause problems. This is an extreme situation and most likely not what you are dealing with, but I thought I would share to arm you with info.

    I think many people above have shared some great info too. She might need to try an elimination diet to find other intolerances or like Gluten Dude said, school is a hard place to navigate for a gluten free child. Many of the people/kids there do not understand what gluten is or where it can be lurking. Temptation is everywhere.

    I hope you find an answer (and her some relief) soon.

    Reply
  48. 48

    Carl Wastyu

    In regard to that guys post about Dr. Peter Gibson and saying “Non Celiac Gluten Sensitivity is false.”

    It seems the study itself is flawed that Dr. Peter Gibson and his FODMAP diet claimed to cure.

    http://www.iflmadscientist.com/2014/05/18/non-celiac-gluten-sensitivity-and-bad-studies-promoted-by-ifls/

    Reply
  49. 49

    Robyn Bray

    Rob & Elizabeth,

    There may come a time when a definite, certifiable, diagnosis is needed to insure your daughters rights & needs are respected. In the future, she might need it to demand her right to have gluten free food options in the college cafeteria, to get financial assistance if needed, maybe even qualify for a scholarship (none yet exist, but she is young.) That definitive diagnosis may require this biopsy.

    If you do go with the gluten reintroduction, I’d wait til school is out! I think the equivalent of a cracker a day is the recommended amount. Regular oatmeal would probably do the trick! She’s probably already getting some traces of gluten somewhere, so, the biopsy will probably be as informative as needed, regardless of what you do. But, I’m not a doctor, so ….. that’s my disclaimer!

    15+13? Dude, I might have bern valedictorian, but REALLY! 52 years of undiagnosed Celiac? Lol

    Reply
  50. 50

    Lima Bean

    Congrats, Dude! I think people have mentioned almost every un-proven food related test, some promoting of personal/questionable websites, Celiac agendas, Myths, etc! Not sure how that happened in 1 thread! Way too much nonsense to even try to help Irish debunk! Maybe this is one for the Guinness book of world records? lol

    To the parents – look for real scientific info on reputable medical sites like Mayo Clinic and Univ of Chicago Celiac Center. Websites with names like “hot Peppers” “housewife” (or whatever they are called) and by pseudo doctors claiming to be experts in
    food issues are not valid medical sites.

    If people just used a little common sense……. sigh

    Reply
    1. 50.1

      IrishHeart

      thanks, Lima.

      Can’t say I didn’t try.

      In the 3 years I have been working online to help people negotiate a GF diet and get properly diagnosed, I have never seen so much speculation, fabrication and fear mongering in one blog post’s responses.

      I sincerely hope Rob and Elizabeth have not been scared silly.

      I am just shaking my head at how much misinformation is “out there”.

      I suggest people read Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler

      and Gluten Freedom by Alessio Fasano, MD.

      and use valid sites like the U of C as Lima has mentioned.

      Have a good day everyone~~ :) . I’m out.

      Reply
    2. 50.2

      Gluten Dude

      Seriously. I have no idea what happened here. I actually feel bad for Rob, who emailed me originally. I contacted him privately and apologized for all of the craziness on this blog post.

      And for the record, DIET COKE IS GLUTEN FREE. But it’s crap.

      Reply
      1. 50.2.1

        Mary

        I am so glad you contacted Rob. I don’t know what happened here either. It’s sad and unfortunate. Thank you GD.

        Reply
  51. 51

    IrishHeart

    Hap

    That’s what’s known as a CYA statement from a company that is not going to pay extra money to get a certified GF circle stamped on a product.

    The truth is, if any of you have ever eaten anything with the GF circle on it, you are consuming products that test for under 20 ppms…the level designated as safe for celiacs

    The statement says” the level could be zero” and it implies, but we are not going to say anything else because we have lawyers who tell us to say this general statement instead to avoid lawsuits.

    If anything you drink bothers you, don’t drink it.

    If anything you eat bothers you, don’t eat it.

    Basic rules of living your life (not just people with celiac)

    This does not mean that diet coke is a hazard to celliacs.

    (but it is really bad for you for other reasons, IMHO)

    Reply
    1. 51.1

      Hap

      Irish and Lima

      I understand your frustration after reading all of the above comments, which really highlight the depth of the “gluten” and “gluten misinformation” issue.

      I know each of you are genuinely doing your absolute best every day to wisely and accurately without a hint of hysteria inform our GF community and everyone else about Celiac Disease.

      However, sometimes you must wade through the BS and all of this discussion. Even though it wears you out sometimes, this discussion is very educational for people like us who were dying from eating gluten and no one, including our doctors, can tell us why. As you each know, no one answer works for everyone with this disease. I agree we need to stomp out myths but it is important to let people know about the nuances. GDude informing me about Amy’s and wheat facilities has helped me tremendously. Omission, Daura, Diet Coke, etc all fall in the Amy’s “be careful if you need to category” and this information is important to some people, maybe not all people.

      I am so very thankful for Jennifer Esposito telling her story, which is why I’ve repeated my thanks often during the last few months, because she informed me at 12:30 in the morning with knowledge that saved my Mom’s and my life after my doctors could not help me after 2 years of looking and my Mom after 16 years of Lymphoma.

      I agree with Irish’s practical advice above; however, all of this discussion may help one person find the key for their good health and all of this discussion is then worth the aggravation.

      You know how much I respect each of you and hope you continue your educational mission without ceasing.

      Respectfully

      Hap

      Reply
      1. 51.1.1

        Hap

        PS If people only wanted dry medical sites like U of C and “real scientific info on reputable medical sites like Mayo Clinic and Univ of Chicago Celiac Center”, which are readily available, then we wouldn’t need The Gluten Dude and his Merry Band of Followers. I hope The Dude and his followers keep up the valiant battle, even if the battle requires getting a little, maybe a lot, of BS on your combat boots from a blog post from time to time.

        Do I need to repeat my Winston Churchill quote from above again?

        Reply
        1. 51.1.1.1

          Lima Bean

          Not sure why I am bothering with this…. You can get your medical info from people you don’t know making things up on the web if you would like. I will continue to recommend that people get the medical info from reliable sites. I don’t really see why a list of tests or an explanation of how Celiac disease manifests needs to be “merry”.

          Reply
          1. 51.1.1.1.1

            Hap

            Since you asked, probably to keep most of us from falling asleep while trying to read all of the technical details that Lima and Irish do such a lovely job of deciphering and posting for us!

            I need the Dude’s perspective to get through the day.

            Reply
            1. Lima Bean

              I give up. I have seen your posts.

              Reply
              1. Hap

                Lima

                Did you notice I left out “Merry” the second time above just for you:

                “I hope The Dude and his followers keep up the valiant battle, even if the battle requires getting a little, maybe a lot, of BS on your combat boots from a blog post from time to time.”

                We need serious people like you (and Irish sometimes) who “shoot from the hip” to keep the rest of us from hurting ourselves along this path of life. I’m sure you’re “Merry” sometimes, just not usually about Celiac Disease, which deserves all of the seriousness we can muster.

                I mean that solely as a compliment. I always read your (and Irish’s) post because I know I’ll learn something valuable and worth my time!

                Hap

                Reply
                1. Gail

                  Hap,
                  I don’t want to belabour (Canadian here) this issue and wasn’t going to respond but have to say I agree with you. I learned as much from “anecdotal” evidence as anything else. I had some “aha” moments. Everybody is different but I think most people will know to take things with a grain of salt and determine what’s working and what’s not working. Must be much harder, though, for parents of young children. Hope everyone keeps up the good work!

                  Reply
    2. 51.2

      Hap

      As one of those lawyers, I’ve written many CYA letters in 30 yrs; and, the possible even minute amounts of gluten in Diet Coke, which affects highly gluten sensitive people like me, is precisely why companies with products need lawyers like me.

      Diet Coke may be Gluten Free under federal 20ppm guidelines but that doesn’t mean it is any more gluten free than Omission, Daura, Amy’s or any other products manufactured in wheat facilities or with products possibly naturally containing gluten as identified by Coke’s own website. I never implied Diet Coke was hazardous for most or even some Celiacs, but now that you mention it, it and other sodas may be for some.

      Just trying to be consistent but I’m always glad to stand corrected.

      Respectfully

      Hap

      Reply
  52. 52

    T & T's Mom

    I’m not sure if this was covered in the comments above, but I would like to share what we have found helpful. My daughter has continually had issues with various foods and digestion even after going entirely gluten free 5 years ago. Initially, she felt much better, but then seemed to regress. It took some time, but we finally found a holistic doctor that was willing to step in and do much more in depth testing than what we had done previously. She did an IgG Elisa Comprehensive Food Panel that tested for about 200 food sensitivities. Once this came back, we were able to pinpoint the other offending foods that were in addition to gluten. Some of the big ones were dairy, casein, whey, and corn (although there were others). She put my daughter on an elimination diet as well as l-glutamine and probiotics to begin the healing of the gut. Even though we were gluten free, the other offending foods were continually causing aggravation. Hope that helps someone :)

    Reply
  53. 53

    Greg

    I have not read every post so someone may have mentioned this already, but I would add one more point to GD’s list. Are you giving her a “replacement food” like gluten free bread? If so it may be keeping her sick. One month after going gf, I started eating a particular brand of “gluten free” bread. After two weeks of eating it I was as bad as before I changed my diet. I had lost all my gains. So I would say don’t trust that everything which claims to be gf really is.

    Reply
  54. 54

    Gluten Dude

    Folks…let’s just end it here. While many of you have good intentions, some of the suggestions here are just too outlandish and some even border on irresponsible.

    This is not helping Rob and Elizabeth and that was the whole idea of the damn post.

    Reply
  55. 55

    GF MOM

    WOW! I have read most of the posts. Thank goodness for the advice of Irish Heart, Lima Bean and Chris! Let’s remember, we are talking about a young girl who has been gluten free for only two months! I think it is important for the parents to ask the doctor if it would be possible to do a shortened challenge because our young friend has been GF for such a short time and is still having issues which could indicate that despite efforts she might still be getting gluten. It is probably wise to rule out other issues. From attending conferences and speaking with the top scientists and physicians from around the world, it is clear that they are all working on solutions for cross-contamination and maybe even a cure for Celiac. It will be important to have an actual diagnosis to have access to these solutions. An actual diagnosis will also be absolutely necessary for a 504 accommodation plan for school as well. Many who shared their thoughts are at a point in their lives where they see a GF diet as the only solution. This girl is only 10! Who knows what the options will be for her in the future!

    I think it is WAY too early to be suggesting so many of these elimination ideas! I would suggest that if she and her parents take that route it should be under the advice of a knowledgeable physician or dietitian.

    Other thoughts: Has her doctor ordered bloodwork indicating any vitamin or mineral deficiencies that might need to be addressed? Is there a pet in the household that eats food with gluten in it? This includes dog cookies and fish food. How about a pet in the classroom at school? I think the posts above have addressed the risks in a shared kitchen, at school, personal care products, medications, rigorous label reading, etc. A knowledgeable dietitian and/or a support group can certainly make a difference here as well. Does she play with/babysit babies or toddlers? They are covered in gluten and like to put their hands in your mouth. (At least you don’t have to have the kissing talk yet!) Has anyone checked the art supplies at school? People have mentioned utensils in a shared kitchen, but how about sponges and the fact that ONLY soap and water get rid of gluten (not clorox or disinfectant…) She should always make her food on her own plate and not on a counter. I think someone already mentioned that she should have her own condiments and peanut butter so there is no risk of contamination there either. As others have said, be wary of products made in a shared facility.

    Maybe this summer can be one of eating whole foods in a safe kitchen. I strongly suggest a calm and methodical approach to making sure she is safe. I wish you all the best in negotiating these deep waters. It is a journey. Be patient.

    Reply
  56. 56

    Miriam

    I put my kid on a gluten free diet on august and he inmediately got better. After a couple months his symptoms were coming back: his elbows were really bad (full of chicken skin), the bloating, pain night terrors and nightmares came back so I took him to an allergist doctor and did the “skin prick test”. He was making reactions to lots of others foods, as soon as he stopped eating all those foods we were back on track. The allergist said he was not supossed to have any problem with gluten, because he was not allergic to wheat. It was not in my plans to reintroduce gluten anyway, but his grandma made the “experiment” (without my permition -_-) and next day I was calling her asking: “what did you feed my child with?” so she confess she wanted to try if wheat was really the problem. I haven’t been diagnose as celiacs since doctors are not really helpful in my country, but since gluten makes me feel terrible and it runs in my family I just new I didn’t have time to loose and after talk to his GI went staright to gluten free diet. My kid feels good, I am happy now =)

    Reply
  57. 57

    Miriam

    I put my kid on a gluten free diet on august and he inmediately got better. After a couple months his symptoms were coming back: his elbows were really bad (full of chicken skin), the bloating, pain, night terrors and nightmares came back so I took him to an allergist doctor and did the “skin prick test”. He was making reactions to lots of others foods, as soon as he stopped eating them we were back on track. The allergist said he was not suposed to have any problem with gluten, because he was not allergic to wheat (mmm ok…). It was not in my plans to reintroduce gluten anyway, but his grandma made the “experiment” (without my permition -_-) and next day I was calling her asking: “what did you feed my child with?” so she confess she wanted to try if wheat was really the problem. I haven’t been diagnose as celiacs since doctors are not really helpful in my country, but since gluten makes me feel terrible and it runs in my family I just knew I didn’t have time to loose and after talk to his GI went straight to gluten free diet. My kid feels good, I am happy now =)
    Something else to check, are they catholics? Most people I know are no aware of the fact that communion bread has gluten.
    I hope this could help them, I know what it’s like to be a desperate parent.

    Reply
  58. 58

    Shannon

    Dear rob and elizabeth – my family is in the exact same boat as yours. Our daughter went into a metabolic crisis at 2 years old. She hadnt gained weight in a year – essentially since adding table fare to her diet. And for an infant/toddler to not gain weight is essentially the same as losing weight. She was in the PICU for a week and we almost lost her. For the next year there were so many tests. None of which showed anything with the exception of the serology reports and genetic reports indicating an increased risk for celiac disease. Our ped (who is also an allergist) told us to remove all gluten from her diet and referred us to a ped GI. The earliest appt was 3 months away. I called and spoke to his PA – never do that, btw. I specifically asked if we should keep her on a gluten containing diet until our appt. Obviously, we didnt want to keep feeding her gluten if that was in fact what almost killed her but we also wanted a definitive diagnosis. The PA misinformed us that it was ok to start the gfree diet before our appt. Once we got there, the GI did repeat the serology which showed her antibodies were greatly reduced but he would not do a biopsy or endoscopy without reintroducing gluten to her diet. We had seen enough improvements during our 3 months of gfree that we didnt want to cause her more misery. So we stuck with the gfree diet and went with the tentative diagnosis of CD. fast forward 2 years and things were better but still not great. Very much like your daughter things had gone from 9-10 to a 3-4. So we took a good hard look at things we were eating. We decided that processed items that “should be” gluten free according to the label but weren’t labeled specifically gluten free had to go. We call it “gluten free 2.0” We are much more strict in what she can and can’t have and the rule is: even if we think its gluten free, when in doubt throw it out. Yes, it stinks. Yes, it is actually impossible to keep her 100% gfree despite our best efforts. But… Yes, we have seen significant improvements in her health on gfree version 2.0. Instead of being a 3-4 pain/ fatigue scale she’s now at 1, sometimes 0. That type of improvement took another year. We still dont have anything more than a tentative diagnosis and that makes things harder around others who dont know, understand, or believe in CD. It muddies the waters that much further when they ask how do we know she has it. I don’t want to lie and make it appear we have a hard and fast diagnosis but there is also a line as to how much strangers or even extended family needs to know. We have decided that as she gets older and we start to transition her into managing her own health (hopefully as a teenager) that she will have the option to do a gluten challenge. It will be her decision and we will support her 100% in whatever that decision is. I’m hopeful that in the decade in between that testing and diagnosis will continue to improve and perhaps even spare her the possible discomfort or damage that deliberately eating gluten may cause. As gluten dude has said, it is a very personal decision and one that we have and honestly still wrestle with from time to time. I just wanted to share with you our experience and decision from one CD parent to another. I hope you can come to a decision that brings you peace as a parent and health for your child.

    Reply
  59. 59

    Deb

    Hi, I have only been diagnosed with a gluten sensitivity for a month now, but my Dr. also did a Casein IGG and it came out high, meaning I needed to cut out dairy and casein as well…..I did some research and found that gliadin, found in gluten and casomorph, found in casein are similar in structure and also difficult to digest…… I started my GF adventure just cutting out gluten and then tried also cutting out the casein….I have found that in less than a month I am pain free….which is huge in my case because the pain was so bad I have been on 60 mg of morphine a day to try to hold it at bay but was still not pain free….I am now working on weaning myself form the drugsd…….if anything, ask the Dr. to test for a casein/dairy sensitivity as I am reading they often go hand in hand…..best wishes to you and hugs to your daughter……

    Reply

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