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31 Comments

  1. 1

    Cookie's Mom

    To the person that asked this question:

    Q: Severe unsteadiness dizziness and head bobbing for 3 years 24/7. I’ve only been on diet for 1 week. How long should it take for me to see a diminish in the vertigo and how long until its completely gone?!

    While I am also not a doctor, I would suggest this person get tested for Lyme by a Lyme-literate doctor. That will likely mean having a blood test done by a lab called IGeneX in California.

    Reply
  2. 2

    Amanda

    to: the Artist! I had those same symptoms ~ I am a PhD student + a hubby… (so financially we’re about the same). All I can say is stay the gluten free course, you’ll heal inside and out, and your moods will even out, I promise promise promise. Your thinking will become more clear, you’ll be able to concentrate and create, you’ll probably feel less negative (i started joking again!), and your moods will be less ‘jagged/severe’. You can do this!!! :)

    Back when we were just dating, my hubby used to think the ‘gf thing was just being precious’.. Then, I ate a bun-free hamburger (cross-contaminated at least) on a road trip with him, this is how he recounts what happened next: “she yelled, and was super aggressive with me for the next 40 minutes, then passed out for the next 12 hours and appeared to be hungover the next day’. Our wedding was 100% gluten free, and he goes out of his way to make sure everything is gf in the house.

    You can do this, and you’ll be the best you possible because of it. Sending gf love!

    Reply
  3. 3

    Susan

    To the vegan, gluten free person: Have you had your iron levels checked? Since you don’t get much iron in your diet naturally and you have issues with gluten, it seems likely that you could have developed anemia which could be why you aren’t feeling better.

    Reply
  4. 4

    picci

    For the person who asked:
    Q: I have still not been diagnosed but am 99% positive I have Celiac disease. Do you know if any kind of doctor can order the test for the Celiac gene? And what test do I ask for? When I have told other doctors I have had an endoscopy and colonoscopy which came back negative for Celiac, the doctors say “well you definitely don’t have it then” but I have heard from other Celiacs that this is not always the case, especially considering that I was not on gluten when I had both tests done.

    I had a similar situation. I had already been off gluten for a few months which eliminated all of my symptoms and I felt wonderful. However, I wanted to find out if I had CD or a gluten sensitivity. So I went to a CD specialist and they asked me to eat gluten for 6 – 12 weeks. By week 2, I was in so much pain and discomfort that I begged them to see me right away. The good doctor didn’t think I had CD (don’t know why for sure) but she decided to did the extensive blood work anyway which came back negative. She didn’t want to put me through and endo so she had me do the less expensive, less invasive genetic test. I think she secretly thought it would be negative and she would be done with me. Well, lo and behold, I was positive for not 1 but 2 alleles which put me at a higher risk for celiac disease.

    Now, does this mean I definitely have celiac disease? No because I didn’t have a positive endoscopy, BUT, it’s proof enough for me to keep me on a completely GF diet and never cheat and live my life like I have an auto immune disease. If it were negative, I could have assumed I had a sensitivity and if I accidently got gluten it wasn’t as serious as if I had CD.

    I believe you can order the test yourself. It’s a simple cheek swab and you get the results with a clear explanation within a few days and you can even call and speak with one of their counselors. I used Kimball Genetics but I believe there are others you can find online. I hope this helps.

    Reply
    1. 4.1

      Galwayfan

      It takes 2 alleles to make one celiac gene. One alpha and one beta. In order to have 2 celiac genes, you would possess 4 alleles. 2 alpha and 2 beta. It’s all very interesting. Anyhow, I hope you’re feeling better now that you are gf :-)

      Reply
  5. 5

    SB

    If you are asymptomatic or in your first three years of gluten free, get an iG test every quarter to make sure you are on track. They do this for young kids — no idea why a doctor would NOT do this for an adult.

    The reason to know your genetic status is obvious – you can pass the gene on, and you’ll know what to look for in your children. The genetic test and elimination with iG test are actually more accurate and far less invasive/expensive than the iG/biopsy method. Also, it may NOT be Celiac’s and something else like I have (RA gene), ulcerative colitis, Crohn’s, etc. 23andme.com is fast, cheap, easy, and covers several genetic factors, not just the Celiac DQ2 and DQ8 markers. If you are positive for any of these genes, the test kits make great holiday gifts for the whole family!

    Many grains besides the ones we avoid contain gluten or gluten like proteins. If you react, don’t eat them. I have RA and IBS, so too many high fiber grains or raw foods will make me bloat up.

    Reply
  6. 6

    Rebecca

    Regarding the question about grains:
    I react the same way to corn, rice, and oats as I do to the “glutinous” grains. I thought I was getting cross a contaminated food but some of it was even certified gluten free!

    I think for anyone who’s not feeling better by just taking out wheat, barley and rye, it is DEFINITELY worth trying to go without grains entirely. Yes, it’s hard, but would you rather try it ten years from now find out you could have been feeling better this whole time??

    Reply
    1. 6.1

      Cookie's Mom

      This is a good point, Rebecca. I always suggest people try a new diet (like the Paleo diet) for a week. Anybody can do anything for one week. Even if they go back to the old way of eating after that week, they’ll be more likely to return to the new diet once they realize the effort was worth feeling like themselves again!

      Reply
  7. 7

    Gloria @ glutenfreepoodlehome

    Celiac Dude I enjoy your blog and your advice. As you obviously do, I feel badly for all of the people asking for medical advice when they should be asking a Dr. I am a registered dietitian and also celiac for 2 decades so would like to add my 2 cents. 1) The person with the high blood test and the negative biopsy should go to a celiac center to be tested. I have had several patients who went through this. Damage can be patchy and can be missed. Trust your gut, no pun intended. I recently had 2 patients that were told they didn’t have it, ate gluten again, got sick and went somewhere else for testing. POSITIVE! 2) To the chef, I have a food service sanitation license in Illinois and cross contamination was most definetly covered in the class. They talked about bacteria and other contaminants, but also food allergies. It is up to the work place to enforce the practices. Some restaurants don’t enforce the sanitation rules either. 3) Celiac can cause many, varied health problems but I see too many people jumping to the celiac conclusion and self treating with a GF diet. I recently had a patient who had self-treated with a GF diet for a year before being checked out by a Dr and found to have advanced cancer . Being treated a year sooner might have improved her odds. 4) If you have been through multiple testing and do not have celiac but feel better on the GF diet and are maybe intolerant…go for it. Wheat can be hard to digest.
    5) To celiacs who are still having problems on a GF diet it could be dairy, it could be other grains, you might need pancreatic enzymes…multiple things are possible. If you can find a celiac-knowledgable Dr or dietitian seek help, or do some elimination. It is rare but I have had several patients that seem to not tolerate grains, even GF ones.

    Reply
    1. 7.1

      IrishHeart

      Look as if Gloria and I were typing/posting at the same time, so some information I added may be repetitive.

      :)

      Reply
  8. 8

    IrishHeart

    RE: the person with the POSITIVE celiac panel (but “negative” biopsy)
    YOUR BODY IS MAKING ANTIBODIES, SO YES, YOU HAVE CELIAC DISEASE. Just because the biopsy results were negative, it does not mean he (1) biopsied the right place to find villous atrophy or (2) that he took enough samples or (3) you do not have Mrash stage 2 or 3..you just may not have it yet.
    You have celiac, hon. Embrace the diagnosis and stop eating gluten or risk health complications.

    RE: grains
    Not all celiacs have problems with grains like corn, rice, quinoa and amaranth, etc. Only some of them do and it is not because the grain is doing the same damage to the intestines as wheat,rye, barley gluten nor is necessarily from cross contamination, but simply because they are difficult to digest. Newly diagnosed people may have issues with them and people whose guts are damaged extensively may find they feel better taking them out of their diets, but alternative grains are safe for celiacs to eat. (just want to make sure any newly diagnosed people reading this understand this distinction)

    RE: petit mal seizures and vertigo
    Yes, these are both listed as a symptom of celiac and hope you find they resolve for you.

    RE: restaurant training in GF food prep and CC issues

    GIG (Gluten Intolerance Group) offers the course for restaurants. Look here:

    http://www.gluten.net/programs/awareness-programs/gluten-free-restaurant-awareness-program

    Reply
    1. 8.1

      Sandra

      Thank you for your reply about the unsure diagnoses (positive blood/ negative biopsy).
      The doctor said that we could trust the biopsy (gold standard for diagnoses) more than the blood test, and that the blood must have been a false positive…But
      I haven’t eaten gluten since the day before my scope, that’s now 12 weeks. I now have my energy back for the first time in years, and the dizziness and heart burn which were my most troubling symptoms are going away too! I think it’s worth mentioning that I am not having any GF bread etc or anything processed, and have pretty much cut out alcohol or coffee. I will carry on like this now because I’m feeling better, and that’s all that matters.

      Thanks again

      Sandra

      Reply
      1. 8.1.1

        IrishHeart

        I think that doctor should read a current medical journal and get his archaic head out of the sand, but…as always, that’s just IMHO :)
        And so-called “false positives” are extremely rare, according to the medical literature. They boast a 99% accuracy rate when they try to convince people with negative panels that they could not possibly have celiac too. (can’t have it both ways, medical community!–so, which is it? the blood test is nearly perfect or often wrong? hmmm??.

        Many enlightened doctors will tell you that current thinking on celiac testing is that the biopsy is not necessary, is often done incorrectly and that the criteria for DXing celiac has been revamped. They consider the blood test, the biopsy, the symptoms, the genetic test and symptom- resolution off gluten to be the 5-point approach. Dr. Fasano, et al. are behind this diagnostic approach.

        anyway, as you say…ALL that matters is that you are feeling great!!.
        (but you still have celiac. )
        :)

        Reply
        1. 8.1.1.1

          Sarah

          Hi, I just had to speak up to explain this:

          There are a few different variations to the blood tests, that have slightly different numbers but I’ll deal here with a common one that has 95% sensitivity and 95% specificity.

          95% sensitivity means that it correctly gives a positive result in people who do have celiac disease in 95% of cases. It will give a false negative in the remaining 5% (meaning people who do have celiac disease will be told that they don’t)

          95% specificity means that it correctly gives a negative result in people who are healthy (do NOT have celiac disease) in 95% of cases. It will give a false positive in the remaining 5% (meaning healthy people will be told that they do have celiac disease)

          When you hear 95% it is easy to think “hey, that’s a pretty high number, that must mean this test is really good”, but you have to look at the actual numbers to fully understand:

          Due to underdiagnosis of celiac disease, and self-diagnosis, there’s conflicting estimates for how many people have celiac disease. Smarter people than I have estimated that about 1 in 135 people have celiac disease so I’ll use that number. 1/135 = 0.7%

          If you test a random sample of 10,000 people, this is what you would get:

          10,000 x 0.7% = 70 people who have celiac disease
          10,000 x 99.3% = 9930 people who do not have celiac disease

          Of the 70 people who DO have celiac disease:
          70 x 95% = 67 people who will test positive with the blood test to say that they do have celiac disease
          70 x 5% = 3 people who do have celiac disease but will test negative for the disease

          Of the 9930 people who DO NOT have celiac disease:
          9930 x 95% = 9434 people who will test negative
          9930 x 5% = 496 people who will test positive for the disease even though they don’t have it

          So in total, of the full 10,000 people,
          563 (67+496) people will get back a positive blood test, of those 563, only 67 of them actually have celiac disease, so if you don’t do the endoscopy/biopsies to confirm the diagnosis, 496 people end up going gluten free for life for no reason. That’s a lot of un-needed stress and hassle.

          On the other hand, the test works quite well the other way, because of 10,000 people, only 3 people get told they are fine when they do in fact have the disease. Yes, that sucks for the 3 people it happens to, but this is a much smaller number than the false positives.

          BOTTOM LINE:
          The blood test is a good way to narrow down the people who should get a endoscope/biopsy done. You don’t want to go sticking scopes down everyone’s throat, so narrow it down through the blood test. But having a positive result on the blood test alone doesn’t confirm that you have celiac disease, so the biopsies are a necessary second step. This is why it is referred to as the “gold standard”.

          Note: These numbers are the results if 10,000 random people are tested. In reality, people only generally get tested for celiac disease if they have some reason to suspect it, symptoms etc, so the percentage of people who are tested that do have celiac disease is probably higher than the 1/135, but the point remains the same.

          I hope the above makes sense to you. I’m not writing you this long reply to criticize you, only to inform. You seem to have a lot of clout in the comment sections on this site so my aim to is to help the spread of correct information.

          Reply
    2. 8.2

      Anna

      Since you seem really knowledgable, I’d like to ask a little more about the celiac panel. I had one done and came back 0 for everything except deamidated anti-gliadin IgA antibodies which came back 38. My doctor told me to go off gluten immediately and by the time I had my endoscopy I’d been off for two months. I wasn’t willing to do the challenge, because I improved quite a bit off gluten, and my endoscopy came back negative.

      My doctors said the blood alone wasnt enough to diagnose me and wasnt enough to indicate celiac. I’ve read though that that test in particular is a really good indicator. I’m not willing to eat gluten again, but I’m wondering if I should be looking into other things besides celiac as the cause of my illness. What are your thoughts?

      Reply
      1. 8.2.1

        IrishHeart

        Well, you had one doctor tell you to “go off gluten immediately after that test” and then your scope/biopsy was 2 months later. So, that is very unfortunate because you got VERY bad advice from that doctor. You should have remained on gluten until the biopsy!! That is probably why it was negative, hon..

        Please read this explanation about the DGP test

        “Elevated DGP antibodies are often seen in patients with celiac disease on a gluten-containing diet. They appear to have exactly the same value of the more established tTG-IgA antibody test, and offer no advantage over tTG. However, it appears that in very young children (i.e., in the first two years of life) DGP do provide a better test for celiac disease…”

        http://www.cureceliacdisease.org/?s=dgp+test&submit=Search

        Given this information, what do you think?

        Reply
      2. 8.2.2

        Sandra

        Hi Anna
        I can understand why you feel puzzled, and it’s unsettling not to have an official diagnoses of celiac, when you feel better gluten free.
        I’m not very knowledgeable at all, but it’s possible that your small intestine healed in the 2 months you stopped having gluten, giving an unreliable result. Doctors would normally insist you carry on eating gluten till the biopsy for this reason.. unfortunately you cannot rely on your biopsy result.

        Did you feel better before biopsy?

        I hope you’re feeling better on the diet. it seems the time it takes for symptoms to improve varies a lot as do the type of symptoms. If you still feel unwell look into things further, maybe see a dietician and go back to doctor incase there is something else going on. If you now feel well then that’s the answer you need.
        Wishing you all the best, Sandra

        Reply
  9. 9

    barb217

    To the lady inquiring about vacations…

    I just returned from the Riviera Maya, we stayed at the Now Jade and it was terrific. I was diagnosed only 3 weeks before leaving and was going to cancel, but I emailed them and asked about gluten free meals, they sent me the menus and said they would work with me on anything I wanted. They were fantastic, all my meals were specially made. Never got sick once, been back 2 weeks and already have been sick three times. I printed the dining cards that are on line in Spanish and showed them to all the waiters or managers and they really go out of their way. It was great…if you have any questions I would be glad to answer ……..barb217yahoo.com

    Reply
  10. 10

    TCT

    Hey! Thanks for the great info, as always, Gluten Dude.

    This response is both for the 44 yr. old mom and the vegan who doesn’t feel better:
    For both of you, even if you’re totally avoiding gluten (which is great!), there are often so many other conditions that can go hand in hand with gluten intolerance and/or celiac (i.e., anemia, thyroid issues, intestinal hyperpermeability aka “leaky gut,” candida overgrowth, adrenal fatigue, Vitamin D deficiency, digestive enzyme deficiency, other food intolerances, and more!). And so often auto-immune conditions do like to travel in pairs or groups, so you may have a number of things going on. And if you’re only avoiding the gluten (again, that’s great!), but not addressing the other issues, then you’ll never feel really, totally well. I had to find an educated, experienced naturopath who did the most thorough workup I’ve ever had: tons of blood tests, fecal (ew, yucky, but results were so informative), saliva, and more. And it revealed so many related, intertwined conditions. So I had to address all of the issues to finally get well. I am worlds better than I was a year ago. I’m not saying to get rid of your MD, if you like them, but it can’t hurt to have all of the information. The knowledge will give you the power to get well.

    And as for the person who was asking about creams, shampoos, etc., I do make sure that everything I use is gluten free. Things like toothpaste, chapstick, lipstick, are of course a no-brainer. But even if you don’t have skin reactions, you’d be surprised how easy it is to get glutened from the other stuff! Hand lotion can be very gluteny, and all you have to do is touch your lips or go to get that green thing out of your teeth, and you’ve just put gluten in your mouth. And I always get shampoo and conditioner residue on my lips when I rinse in the shower. So after too many incidents like this, I decided that it just made more sense to get the gluten out of my life completely. It took an initial investment to get all new lotion, makeup, house cleaners, etc. But I feel like it’s really been worth it.

    Thanks everyone for the great questions & informative answers!

    Reply
  11. 11

    Molly (Sprue Story)

    To the college student: PLEASE talk to your housemates about it. Whether they’re your friends or other kids you were matched with, you have a right to be safe and happy in your home. I was living with two roommates I’d met on Craigslist when I got diagnosed, and I told them right away and we worked out some adjustments to the kitchen so I could have my own cupboard with my separate things, and my own section of counter space. Because I’m a bit neurotic, I still felt happy to move out of there into a totally gluten-free zone, but I am pretty sure it was actually working out well, and there’s no reason it shouldn’t for you. Gluten-free rice, corn tortillas, meat/fish/eggs/dairy, canned beans, veggies and fruit, etc., are not too expensive and don’t have to take tons of time to cook, either. Maybe spring for a slow cooker or a rice cooker of your own to make simple meals that won’t break the bank or take up all your “studying” time. If you are in fact friends with your housemates, maybe you guys can share a gluten-free meal or treat now and then. Having people to eat with (especially if they’re eating the same thing as you and enjoying it) is a good quality-of-life booster for anyone. Good luck with school and gluten-freedom.

    Reply
  12. 12

    SB

    You have rights under the ADA, and there are precedents at many colleges now thanks to the courageous work of your peers. You’re not alone!

    Reply
  13. 13

    CM

    I have been sick since I was a child (current age 52).Seasonal rash, pneumonia, hepatitis A, pleurisy, hyperthyroid (took radioactive Iodine) now hypothyroid (partial thyroidectomy),Dx with IBS at 27, infertility, bloating for as long as I can remember, constipation/diarrhea, burning scalp. I was told I had MS in 2001 and Lupus in 2012, no symptoms of either. I am anemic and low vitamin D levels. Migraines since the age of 17 and were getting worse. Bronchitis/sinus infections every winter. Absolutely no energy. Wow, I’m making myself depressed!!! Oh yea, depression/anxiety too. Yet through all of the above and all the years I’ve been sick I still SMILE. Anyway, finally had endoscopy and celiac panel done, was 100% sure it would come back positive. No it did not. According to my Dr. it was negative and he wanted to see me again in 6 months. Oh hell no..I went gluten free and since then: No bloating, no constipation, no pain ( chronic shoulder pain/back pain), its gone, but the most amazing part is this, I went from having 9-12 migraines a month to NONE!! Being Dx with celiac disease or not, I will NEVER eat gluten again. I am glad I listened to my ‘gut’ instinct (sorry, couldn’t resist) and not the doctor. Best thing I ever did for me! Thanks for your blog, been very helpful to me.

    Reply
    1. 13.1

      IrishHeart

      GOOD FOR YOU!!

      FWIW, all your symptoms are gluten/celiac-related, so you did the right thing.

      KUDOS!! :) and a long, healthy and happy life to you!

      Reply
  14. 14

    Debbie

    To the person who has 11 year old twins and her gall bladder removed, etc….you sound very similar to me. I have suffered with IBS-D/Lactose Intolerance/anxiety related to all of that — since I was 13 — over 40 years. No doctor has ever been able to help me or even suggest gluten intolerance or celiac. I tested negative for celiac with the blood test (at my insistence that I have the test), but took myself off of gluten anyway. I also have twins (27 now) and ever since my gall bladder was removed, I have had mystery right side rib pain. I have also had anemia over the years, among many many other symptoms. So, I’ve been off gluten for 3 months — seen some improvements with my stomach and my right side pain. I believe that might be due to fatty liver (although this is a guess). I’ve also lost 15 lbs since I went gluten free, which I assumed helped. If the gall bladder removal has accelerated diarrhea, this is sadly common and my doctor put me on colestipol (again after my own research and my insistence) which has significantly helped me. You might want to talk to your doctor about that if that is an issue for you. Sadly, you have to do your own research and be your own advocate when it comes to gluten intolerance or celiac since it’s a rare doctor who will suggest it. Oh, I forgot to say that I’ve been under a Gastro’s care for at least 20 years and it’s my internist that put me on colestipol and gave me the celiac test. He has been much more helpful about these things. My gastro doesn’t even know I’m gluten free as I’ve pretty much given up on him helping me with much of anything. He never suggested gluten as a possible issue and I even diagnosed my own gallbladder disease. So try giving up gluten. The worst thing that happens is that you feel better. Good luck!

    Reply
  15. 15

    Judy Zimmer

    In response to the question regarding traveling; I just returned from a week in Ireland and found gluten free options in all the restaurants we visited in Cork and Dublin.

    Reply
    1. 15.1

      IrishHeart

      :)

      because the Irish “get it” ..more celiacs per square inch and all…

      Reply
    2. 15.2

      Rebecca

      So glad to hear that! I plan on moving back to Ireland soon and have been wondering what it will be like. Any “best cities for Celiac’s in Ireland” suggestions?

      Reply
  16. 16

    AF

    Some of you may be affected by adrenal fatigue too. Allergies can be a common symptom of this. Here’s a more comprehensive video on sleep and the importance of it and it’s role in helping people with diseases like celiac: http://www.youtube.com/watch?v=SP2xXHgZaS0

    Reply
  17. 17

    Jess

    To the 44 year old mom of twins, I have Celiac Disease along with mast cell activation syndrome and your symptoms sound eerily like mine did prior to going gluten free. If I had to wager I would guess that your small bowel biopsies were not done properly (either in the wrong location and/or not enough taken). There has been some great research published the past year showing that the changes from celiac disease can be patchy and in one study, it was only found in the jejunum in a patient (which is the second part of the small intestine which usually not biopsied at all when looking for Celiac).

    As for topical gluten, it seems like our reactions vary from person to person. I got horribly cross contaminated from using Bath and Body Works hand sanitizer early in my Celiac life…I was traveling, and hence, using it a lot, not realizing that it contained hydrolysis wheat protein as an ingredient!

    Reply
  18. 18

    Ampmshoe

    Have been totally gfree for over a month. I feel worse than ever across the board. There must be an avg time of detoxing…. Input?

    Reply
    1. 18.1

      Gluten Dude

      Everyone is different. Took me two years. Stay the course. Eat whole foods until you heal. Good luck.

      Reply

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