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35 Comments

  1. 1

    Claudette

    I have to comment on the bursitis comment a few questions up… most auto-immune disorders run in packs. Most reasons for bursitis are auto-immune in origin. I have struggled with hip bursitis since I was 9 years old and bursitis was the last of the symptoms to alleviate since I went gluten free. One of the things that I would recommend if you have both celiac and bursitis is being regularly tested for the RA factor – the assay that tells you if you have rheumatoid arthritis. While bursitis and RA are different animals, they are somewhat related. I also find that eating diets higher in heart-healthy oils (omega-3s and omega-6s, which are in foods such as fish and nuts [if tolerated], flaxseed and chia, as well as vegetables such as avocados and minimaly processed olives) coupled with the elimination of grapefruit helps in promoting joint health in people prone to inflammatory conditions. So to whomever asked… you’re not alone in that. I spent five days in traction due to hip bursitis that is still listed as being of “unknown idiopathic origin”. Hang in there!

    Reply
    1. 1.1

      IrishHeart

      I was posting my comment while you wrote this and I concur! Any “itis” is inflammation and it is most certainly related to celiac, IMHO. I have all kinds of “itises” (tendonitis, bursitis) , and was diagnosed with AI osteoarthritis back in 1998,,,,,and I can say that while no steroid injection ever helped me (I tried 5 throughout the years long before I was Dxed) some people do get short-term relief from the shot..

      In addition to eating anti-inflammatory foods and taking supplements, I worked with a good physical therapist and massage therapist and kept moving, no matter what..My crippling shoulder, hip and knee pain is greatly reduced after 2.5 years GF…and at one point, I could barely walk and could no longer ride my bike (for 8 years).

      The past 3 months, I have been able to walk 2 miles or ride my bike for 2 miles on alternate days. I also lift weights now.
      Healing happens!!..

      Reply
      1. 1.1.1

        Jennifer

        Wow! I have never made the connection between the “itis” diagnosis and celiac until now, but it makes perfect sense. I am a bowler. In high school (many years ago) I was diagnosed with tendonitis in my wrist. That made it very painful to continue bowling, but over the years I’ve found that I could do it in moderation with the right wrist brace. About 6 months ago I had a problem with my wrist brace and couldn’t wear it so I bowled without it. I didn’t have any pain much to my surprise. I tested it out many times now and for the most part the pain is gone. THen I read your post and got to thinking about it… I was diagnosed with celiac in March 2012. I have been gluten free since the day I was told. The only time I have pain now when I am bowling without the brace is when I am also dealing with intestinal issues and other consequences of accidental gluten ingestion. I am a complete believer now that I’ve put it all together. Thank you for helping me make that connection!

        Reply
      2. 1.1.2

        Susan

        Thanks for the thoughts and info! I crave avocados and nuts, so clearly my body is trying to tell me something! And I agree, it definitely helps to keep moving, if I go more than 3 or 4 days without exercise I know I will pay the price.

        Reply
  2. 2

    IrishHeart

    Good work, Dude! :) Better than Dear Abby.

    and I love mail.!! Real mail.
    sadly, not much comes anymore…. just tons of catalogs for things like walk- in showers and hearing aids and canes–wth?? I am not that old. geesh.

    RE: The sweet kiddo who suggested writing thank you notes to restaurants who do a good job with GF meals:

    YES! I do this myself every single time and I get lovely replies from chefs and/or managers.They need to hear they are doing a good job and that we appreciate it. One chef told me he takes it seriously because his SIL has celiac. One chef said he has celiac himself and he has worked to create a safe restaurant . I also tell them nicely when they make a mistake. I have received apologies… and one time, I had the unexpected chance to educate a chef who asked me dozens of questions about celiac and CC issues.
    I was even invited into his kitchen to see his GF dedicated section
    and wide variety of GF pastas. :) I’ll let you know what happens
    after I go there.

    Another thing we can all do is review the places on
    Find Me Gluten Free.

    Mention you have celiac in your review and that you did not get sick!
    THAT recommendation means more to me than how lovely the decor is, what appetizers someone had or how many wines are on the wine list.

    Reply
    1. 2.1

      Jennifer

      I agree… I rely heavily on the Find Me Gluten Free app and always review restaurants whenever I have the courage to try a new one. If more people did it as you recommended, it would only make it a better tool for all of us.

      Reply
  3. 3

    BadgerChris

    For the person who is still suffering symptoms after 4 years gluten free:

    Consider investigating additional food intolerances. Dairy is the most common food intolerance that goes along with celiac disease and gluten intolerance.

    When I first went gluten-free, I didn’t feel significantly better until I also gave up dairy. Since then I’ve worked with a good dietitian and found additional improvements in digestion by giving up soy and eggs.

    Reply
    1. 3.1

      Claudette

      To follow this comment: there is also a condition known as the “nightshade reaction” that afflicts about 20% of the celiac community. This involves reactions to any food that is a part of that family of plants, which includes eggplant, tomatoes, peppers and chiles, and potatoes. I have selective nightshade reactions, particularly to eggplant. And of course for people with celiac, potato is a potential overexposure. You might try a nightshade elimination and see what happens.

      Reply
  4. 4

    Theresa

    For the person who had to change GI Doctors. I have recently changed GI doctors also. I have had to re-do the blood test, my favorite the stool test – I also had a CAT Scan and Endoscopy. And according to the doctor he’s not finding anything to still cause my pain, extreme fatigue or the fact that I ‘m losing alot of weight since I’m having a hard time keeping food down. After my Endoscopy last week he stated that he wasn’t finding any signs of celiac my question to him was – could the reason be due to the fact that I had been gluten free for over a year and my intestines have healed? His answer to me was (ARE YOU READY FOR THIS ONE)….mmmm that’s a good question. I do believe it’s time to find a new GI and hopefully one that really knows about Celiac.

    And I’m also in the process of going without dairy to see what happens…..

    Good Luck and hang in there you are not alone.

    Reply
    1. 4.1

      Diana G

      vomiting and weight loss might also be indicative of gastroparesis. Whatever GI doc you go to next, ask for a gastric emptying or smart pill test and ask about the FODMAP diet. Has helped me.

      Reply
  5. 5

    Heather U.

    Funny thing is, right after I posted my question to you my doctor and husband had a “tough love” talk with me about being more strict about my gluten-free diet. I am happy to say that (to my knowledge), I haven’t had one bit of gluten since then. Still struggling emotionally/mentally…but doing better.
    It’s very tough being gluten-free in southeast TN, where virtually all foods are breaded, buttered and fried (although I’m sure it’s hard everywhere). People here are generally very unaccepting of celiac disease and the gluten-free diet unfortunately.

    Reply
  6. 6

    NoGlutenEver

    I can think of 4 info resources for the 8 year old who’s not responding to the diet as well as the rest of the family. Gluten Free Watch Dog, the Supersensitive section of the celiac.com forum, the CSA website which has foods certified to 5ppm and GlutenZap forum. All are very much aware that “the vast majority of celiacs” are going to be safe with a GF label of 20 ppm and there’s a non-vast minority that isn’t. Any others out there?

    Reply
    1. 6.1

      IrishHeart

      Actually, just to clarify, the writer says he’s 15 and the Mom knows he has cheated on his diet. Makes sense that a teenager would want to have what everyone else is having when he’s out with his friends (even if we adults know it is unwise) .

      That seems like a pretty plausible reason for why he has such high tTG levels, don’t you think?

      (the writer wrote ptt, but I am guessing she meant tTG)

      Reply
      1. 6.1.1

        Adalaide

        I am going to second this. There is absolutely no reason for that mom to be reaching out for new sources regarding things such as his sensitivity when she knows damn well he’s been eating gluten on purpose. If you reread the question, it is about how to get her son to take his medical condition seriously.

        Gluten Dude’s advice was spot on. A lot of 15 year old kids feel invincible and immortal. While it is possible trying to scare him with stories like many of those told by some people around here (IH for instance) about how sick they were before they were diagnosed would scare the living crap out of him. Then again, maybe not because he could be thinking that wouldn’t happen to him. A more straight up medical approach about exactly what is happening to him every time he eats gluten and how it will effect his future might help. I would suggest the http://www.cureceliacdisease.org/ for this type of information.

        Reply
        1. 6.1.1.1

          NoGlutenEver

          I was talking about the 41 year old mother who wants to attend a conference. She mentioned her 8 year old. I couldn’t agree with you more about the 15 year old!

          “There is a session that addresses celiacs that aren’t responding well despite a strict gluten free diet, and that describes our 8 year old perfectly. ‘

          Reply
          1. 6.1.1.1.1

            Adalaide

            At 8 years old, and with at least one child in the house who does not have celiac my first thought it to wonder if the entire house it gluten free, or only the three who have celiac eat gluten free. If the entire house isn’t gluten free, this would be a good first step since young children can find temptation hard to resist. My next thoughts jump immediately to school and the sitter. Both are very likely places for an 8 year old to be getting unsafe things to eat. It doesn’t matter how well they *say* they are taking care of preventing cross contamination, it is obvious that the child isn’t doing well. Providing all meals from home, and in containers that can be microwaved in would be a good step imo. It seems positively silly to assume a child who may be spending part of the day outside of the home is super sensitive if the home isn’t entirely gluten free or if they eat any meals outside the home or even snacks.

            Reply
            1. NoGlutenEver

              I agree, the child’s environment (household, school, sitter) is the place to start. Given that she was thinking of attending a conference, for a particular session on not responding to the diet, I made an assumption that the mother felt confident of the her child’s environment. That was silly of me. But the only other thing I can assume is that she, a celiac herself, is very naive. Perhaps I am missing something. More caffeine needed, I think!

              Reply
              1. Adalaide

                I think we are all naive about a lot of things we shouldn’t be, or at least were until we had them pointed out to us. It isn’t that we’re particularly dense or anything, but that we just seem to do everything right and “by the book” and everything is going to well (and maybe it is for everyone else) that we overlook little things. Sometimes it just takes outside perspective to see things that we can’t see for ourselves from inside our own situation.

                At 8, it really would be hard to say no when faced with an entire classroom of kids eating crackers/cookies/cake and the teacher pushes it on you. What if the teacher is actually completely ignorant? “Well it doesn’t say gluten on the label… here little Timmy eat this. It’s totally safe” I’ve watched people read labels and then say those words right to my face. There are just so many things that can go horribly wrong with school and sitters every single day because children are being placed in the care of people who don’t have to live with this every day. Unless it has truly come down to “you feed my child exactly what I have provided on the place mat I have provided in the container it came to you in and nothing else under any circumstances so help me God…” there is a potential for problems. Paranoid and worried much? Is there such a thing when it comes to our children? Especially when he seems to be getting gluten in his diet from somewhere.

                Reply
              2. Rachael

                Again, I’m just shocked. Your initial instincts are correct. Three of our five family members have Celiac Disease and we are extremely knowledgeable.This is so disturbing to have people who know nothing about us, judge and assume and craft statements that are just ridiculous.

                Reply
          2. 6.1.1.1.2

            IrishHeart

            Sorry, my apologies!!…I read through all of the letters and thought you meant the letter about the 15 year old being non-responsive to the GF diet.

            All I can say is…the same may hold true for the 8 year old.

            Reply
            1. Adalaide

              I had read through them all again to to be sure that there wasn’t one that I missed. I was sure that she meant the same one since it was the only one with a woman specifically asking about her kid. The other woman was asking about getting to Chicago it didn’t occur to me it could be that one.

              As for getting there… yeah, no bright ideas. I’d like to go eventually, but this is certainly not my year.

              Reply
              1. Rachael

                Wow. I just asked about the celiac symposium and received a bonus round of judgments and assumptions not only about myself but my 8 year old child. I love how the celiac community can be so supportive and yet oh so judgmental all at the same time.

                I didn’t ask for opinions or advice regarding why my 8 year old is not responding well, but hey, obviously there are some folks that enjoy a good romping and like to carelessly tell me that I’m naïve and that my child is cheating. To be clear, I asked about a Celiac Symposium. But in defense of my child, and myself as a parent and Celiac, my child is not cheating, and in fact does not accept food from outside our home. Because of my 8 year olds unique blood test results, the entire family was seen and treated at the Celiac Center at Columbia University and we passed the intense scrutiny of both the doctors and nutritionist in terms of our diet and cross contamination measures. Those experts sent us home with the following words, “you are doing everything right, but we just don’t have a lot of cases like Mabel. It may take 3-5 years for her gut to heal given her biopsy results and we have ruled out other autoimmune diseases, lactose intolerance, fructose intolerance and small intestine bacterial overgrowth.” Have you ever heard of refractory Celiac? Adalaide , and the others who decided to jump on the bandwagon, I would suggest that you craft your advice and opinions in a nonjudgmental manner. You know what they say about assuming. This community is vital to some and has served me well on most fronts but I think you need to consider what your words can do to someone else. Gluten Dude….maybe you should ask your inquirers if they are comfortable having their question placed on the blog?

                Reply
                1. IrishHeart

                  Rachael.
                  I would like to clarify my comments about all this before
                  I get blasted for something I did not say or intend.

                  I did not judge or criticize you, Rachael. I am sorry if you feel this way.
                  Please reread what I wrote.

                  I was responding to No Gluten Ever’s first post that the 15 year old’s high tTgs were more likely to be from his admitted cheating than from “unusual sources of cc”.

                  My follow up comment this could be the case for the 8 year old was general. Not critical of your child..
                  I know nothing about your child and would not comment on it.

                  MY POINT was being made to HER only—-that people need not become as overly- worrisome to the point of paranoid as I have seen some people become about gluten in things as unlikely as fruits and vegetables. THIS what what I was addressing.

                  I hope this clarifies what my comments were directed at.
                  I assure you I was not even talking about what your child specifically or what may be going on. I only saw that you wanted to go to the symposium.
                  Best wishes to you.

                  Reply
  7. 7

    Molly (Sprue Story)

    “I’m just a dude with a disease”—ha, love it. This is a great new feature! :)

    Reply
  8. 8

    Miss Dee Meanor

    To the poster that has a bad pain in the left side under the ribcage:

    That’s where I had pain related to gallbladder disease. From what I understand the pain can be anywhere depending on which nerves are stimulated, but that is the exact spot I hurt when I ate anything with even a small amount of fat (especially meat). I didn’t know I had gallstones until the one lodged in my bile duct became infected, but since my gallbladder removal there has no pain there again. I have been told that faulty gallbladders are very common in Celiacs especially those that suffered from malnutrition before diagnosis. See if you can have a sonogram to take a look at it. If the results say that you have “sludge”, then you may have the reason for your pain even in the absence of actual stones.

    Reply
  9. 9

    Michael

    Love the mailbag idea – and nod to Blue’s Clues. Hilarious. On a serious note, your answers were all thorough. At one time I thought I was gluten intolerant, but I don’t think I am anymore. All hail pizza crust.

    Reply
  10. 10

    Gluten Dude

    To Rachael…I think there might be a mix up here. I don’t think the responses were to your question but that of the mom of the 15 yr old who knows her son is cheating. Am I correct folks??

    Reply
  11. 11

    NoGlutenEver

    I am very interested in unusual sources of cc:; but I try not to be paranoid about it. I am occasionally sarcastic on the internet; this is really wrong and I apologize. I hope the info resources for super sensitives are of use to the Mom of 3 and that she makes it to the conference. Perhaps they will discuss this recent study that focused on a 3-6 month diet of whole, unprocessed foods, called the Gluten Contamination Elimination Diet.

    abstract:
    http://www.biomedcentral.com/1471-230X/13/40/abstract

    Here’s a plain English summary:
    http://celiacdisease.about.com/b/2013/03/04/study-trace-gluten-responsible-for-ongoing-celiac-symptoms.htm

    Reply
    1. 11.1

      IrishHeart

      There are many things wrong with that study. But even the author of the article writes:

      “Of particular interest ….11 of the 14 people whose symptoms and test results improved on this elimination diet were able to return to a more conventional gluten-free diet without a resurgence of symptoms, the authors wrote”

      …meaning their guts healed, they went back to eating certified GF foods and they were fine.! .

      So, it is NOT necessarily the GF foods causing the problem, but perhaps not enough time healing before they were declared “refractory”?

      And why wouldn’t they become “refractory” again… if certified GF foods were the culprit?

      Reply
  12. 12

    Claudette

    I think a lot of people were blurring the two children back and forth all along. Agreed, jumping to the “lying through your teeth” conclusion is not fair with no prior knowledge and information. That said, as a child and family social worker, there have been more times than I can count when a parent has sworn up and down that a child hasn’t done something (cheat on a diet, not gone with certain ‘friends’, etc.) and then find out later that the child was lying blind.

    And also unfortunately we as a community have dealt with a lot of people who say they have celiac but then say they cheat without effect. There is no such thing as “unaffected cheating.” It’s more of a matter of whether the results are immediately experienced or insidiously destructive.

    That said, and refractory celiac aside, Rachael, if your child’s issues don’t resolve, I would ask the Columbia doctors about the “nightshade reaction”. While, agreed, it may take a long time for your child to heal, 20% of all people with celiac react with the same kind of autoimmune response to the nightshades – eggplant, peppers and chiles, tomatoes, and potatoes. These aren’t food allergies – they are a refractory form of celiac itself. So you can be eating strictly gluten free – and keeping the diet religiously – and getting sick as a dog. Especially if your daughter is eating anything that is made with potato starch or potato flour, you might be witnessing the refractory nightshade reaction. I know I have the reaction to eggplant, and am beginning to watch my reactions to potato myself.

    Reply
    1. 12.1

      NoGlutenEver

      The nightshade idea is very interesting. Do you have a link to the 20% statistic, by chance? This is the study, I think, that supports the idea that 50% of celiacs have trouble with dairy (free full text):
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

      Has anyone ever seen a similar statistic for corn or soy?

      I thought of one more possible resource, because they test down to 5 ppm. The Food Allergy Research and Resource Program (Univ. of Nebraska) will do some testing for consumers if certain conditions are met. Such as – the food must have a GF label, you must have a small sample of it and ship to to them, the consumer must have a documented reaction to the product and you need to contact them before you send the sample. http://farrp.unl.edu

      Reply
  13. 13

    IrishHeart

    Please, let’s just address this right now before it spirals any more out of control.

    “A lot of people” were not “blurring the two children all along”.

    I clarified for Rachael what happened.

    No Gluten Ever made the initial assumption the 8- year- old’s problems were connected to gluten being in things that needed investigating and suggested sites for info to hunt them down.

    I tried to suggest the more obvious problem for the 15- year- old was the cheating he has admitted to –BECAUSE there was no reason to start speculating about him (or the 8 year old for that matter) and ppms and foods that some people claim have gluten that do not.

    I hope this is clear. Because now, No Gluten Ever is posting more articles to support the theory that the under 20 ppms is still unsafe
    for super sensitives and we should test everything and this will devolve into a fight about that, I am sure.

    I see it often. :)

    And how dairy and corn and soy and ….whatever else….is bad for celiacs, too…. because everything under the sun is “cross contaminated”…(NO, people….it’s NOT or none of us would be healing) .and myth-busting on every site gets tiring.

    I’m out. Good luck everyone.

    Reply
    1. 13.1

      Rachael

      I appreciate your message IrishHeart. I was just completely thrown when I checked back into the comments to see if someone had a great idea on getting to the symposium. It’s been a rough week and I have a very low tolerance for judgment when I have worked my Celiac ass off to get to the diagnosis for all three of us ( just 46 years combined) and gone to extremes for my youngest daughter who still tests high despite our actions. Of course people instantly assume that she’s cheating or that we are still feeding her products with gluten, and I’m so over it. It only took a year to convince our GI that we knew what we were doing and cheating and hidden gluten were not the explanation. The comments just brought it all back and I was fired up. Most of the time I can blow off stuff but y’all caught me way off guard. I was so pleased to find this blog because the support system felt good and then all of the sudden we have a cheating, nightshade, “paranoid much” sh*t storm. I’m over it and I convinced our pediatrician to pay my way to the International Symposium. I can’t wait to learn more and see if the dream team that is assembled can offer some guidance outside of the “your kid is cheating and you don’t know what you’re doing” philosophy. Believe it or not, we have worked our tails off and I would be thrilled if that was the explanation. The alternatives are far scarier and if the International Celiac community is having a session with that title, we aren’t alone. I’ve exhaled and I’m smiling again.

      Reply
      1. 13.1.1

        Adalaide

        I’m glad you’re getting there!

        I hope you know that I wasn’t accusing you of not doing things right. I just remember when my girls were small and how difficult things can be without celiac at that age. I know how difficult things can be now. Without a little background on timelines, a year seemed like a short time and I was merely trying to offer what I always do, ideas on how to help when I had no ideas on how to help you get to Chicago. I wasn’t inferring you are incompetent, or that your daughter would cheat on purpose or without pressure from a trusted adult. (I’ve seen many reports of this happening, so it seemed entirely plausible.) I only try to help.

        As a mother I know that it is especially heartbreaking to see your child sick, and more so when there is nothing you can do or everything you do seems to be ineffective. Like I said, I only meant to offer what seemed like plausible helpful suggestions from the small snippet of info we had. I didn’t mean to upset you at all, and I’m sorry if my words did. I hope you find all of the help you need in Chicago. And don’t forget… have a good time while you’re there!

        Reply
  14. 14

    IrishHeart

    Rachael,
    I am sorry if you felt like everyone was accusing you of something.
    I think the regular members of GD’s community are always genuine
    and compassionate and just trying to help. :) IMHO.

    So glad you will be attending the symposium!!
    I have 2 friends going to that symposium (and if we were not in the middle of selling/building/moving right now, I’d be there too!)
    I think you will learn so much and it will be amazing to be in the midst
    of all those celiac specialists (and tons of other celiacs! :) )

    Reasons why someone’s test levels are still high vary (other AI diseases can spike the tTg, for example) but sometimes, it just takes time for them to normalize. As long as your daughter is thriving, I would think that is all her pediatrician cares about right now.
    .
    Maybe when you come back from the symposium, you’ll tell us what you learned? Love to hear all about it!.

    Reply

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