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47 Comments

  1. 1

    Kris

    I have to be honest and admit that I’m a recent follower so maybe I’m suggesting something that you have already done/covered but have you seen a Celiac specialist? I have seen Dr. Fasano in Baltimore and met Dr. Green and his team in New York. As much as I love my regular docs, the specialists really were the true experts not just on Celiac disease, but it’s associated diseases and the symptoms that can’t seem to be attributed to anything else. It was so very worth the effort I made to meet both of them. Again, my apologies if you’ve been this route already. Good to hear that the test results were for the most part normal. At our age I think “for the most part” is our “normal” ;)

    Reply
    1. 1.1

      The Gluten Dude

      I have not Kris. My thinking, warped as it may be, is that since the only treatment for celiac is being gluten free, there’s not much else a celiac “expert” can do.

      How did the visit benefit you? Would love to hear. Thanks.

      Reply
  2. 2

    J

    Sending you strength. I would say if you can go and can afford the additional tests, go do them just in case. I like the suggestion from Kris above. Perhaps it’s time to see doctors specializing in Celiac Disease.

    Also, I know not a lot of folks don’t agree or do this but perhaps starting accuputure or visiting a holistic doctor. My mom has done both and her life has changed for the better. I know it’s probably not the same for everyone but it’s another suggestion and route to possible take.

    Chin up!

    Reply
    1. 2.1

      The Gluten Dude

      I am all for alternative methods…except Gluten Relief :)

      Reply
  3. 3

    Sharon

    I second going to see a celiac specialist. I have had all the tests and exhausted all my other options as well. I made an appointment at the Columbia Celiac Center in NYC in July. I’m hoping they can help me since no one else seems to be able to.

    Reply
  4. 4

    Brandi Moore

    I don’t know where you live but the drs at Columbia Celiac Center (if you can’t actually go there) have written a great book on Celiac Disease that talks about the Celiac Iceberg of symptoms that come with the disease. (http://www.amazon.com/Celiac-Disease-Revised-Updated-Edition/dp/0061728160)

    I have been using it extensively in my research on pregnancy and prevention in infants.

    I have a LOT of books on Celiac Disease and this is the only one that really documents all of the other diseases that you should be aware of.

    I would check out this book before going further to get a grasp of the depths of the links. Its not pretty. But, I don’t know if you should blow off the idea of pursuing a thyroid problem as this is one of the many diseases celiacs (who do not get diagnosed until later in life) have.

    Reply
    1. 4.1

      The Gluten Dude

      I read the original version Brandi. Is the updated one much different do you know? I’m game if there is a decent amount of new material.

      Reply
  5. 5

    IrishHeart

    First of all, LOVE LOVE LOVE the Animal House clip. I have seen that movie maybe 20 times and I still laugh. (I am easily amused, however)

    Secondly, you and I talked about this already and I hate to be a nag, but Dude, take the test results and go see an ENDO!

    With your Mom’s Addison’s and your chem panel off and the possible parathyroid issue (the high cal) that’s what I would do. One visit and they can tell you “it’s nothing” or “This is what it is and here is how we solve it.”

    Thirdly, an enlarged prostate (even slightly) can mean many things and with your history of bladder cancer Dude, I would have to say, please, just go to the urologist and have the exam done. Then, for your own sanity and peace of mind, you will feel you have ruled out anything else!

    Hon, I do not necessarily agree that “this is the way it is because we are celiacs” because I have met many celiacs who feel well. Really well; so it is achievable.

    It does not exclude us from having OTHER health problems however, just like everyone else.

    One more thought: Can you try 2 weeks without alcohol, grains, GF packaged foods or dairy and see if it changes your fatigue level?

    STOMACH aches mean trace gluten, or lactose or some other food intolerance.

    It’s not the most fun diet, but it may give you some feedback.

    If the stomach aches continue, you should see the Gastro who DXed the celiac. Again, you could have some OTHER GI ailment.

    One simple thought–TAKE some PROBIOTICS. Your gut bacteria may be unbalanced and it causes fatigue, GI issues, etc.

    That’s all I got, kiddo. I DO know how frustrating it is not to be 100% (I live in constant joint/muscle/bone pain and occasional fatigue myself but I make steady progress. )

    Most of all, do not despair! :) You are not out of options; you may just have to investigate further. General practitioners are good for running tests and referring you to others. That’s it. My own PCP did not see celiac in me for 12 years–and his own children have it.
    (insert rolling eyes here)

    Hang tough.

    Reply
    1. 5.1

      The Gluten Dude

      I so appreciate it Irish. It seems I’ve got my mind set that they won’t find anything. But your advice is probably the right path to take.

      You’re awesome!

      Reply
      1. 5.1.1

        IrishHeart

        Takes one to know one…;)

        Reply
  6. 6

    kelly

    I’m sorry she wasn’t able to uncover a more concrete diagnosis but it isn’t a surprise with the testing performed by mainstream medicine. Over the years I have wasted more time and money on doctor’s visits and testing than I care to admit. I don’t know what the specific tests are that she ran but your symptoms definitely ARE DEFINITELY normal and not in your head and you do show some abnormal results which definitely should be followed up. I’m no physician but your symptoms sound similar to mine and after going gluten, dairy and soy free for 2 years, although I felt a bit better I continued to feel pretty crappy. It wasn’t until I had some comprehensive testing through Genova and Metametix labs by a functional medicine doctor that we were able to uncover adrenal fatigue, thyroid disease, insufficient digestive/pancreatic enzymes, leaky gut/increased intestinal permeability and some mineral and amino acid deficiencies. I”m not suggesting that you have these issues but it definitely appears that more is going on, it’s just a matter of finding the right professional to help you.

    It isn’t uncommon for patients with celiac disease to suffer from leaky gut from all the years of gluten damage. Removing gluten doesn’t always heal the damage alone and if you do have increased intestinal permeability there could be inflammation occurring in many different forms within your body. Until the gut heals the inflammation process and symptoms continue. For me, removing all grains, legumes and keeping to whole nutritious foods and removing all the crap/processed foods and sugar has been a huge help but I also needed professional guidance and some nutritional support via supplements, probiotics and digestive enzymes. Podcasts and blogs/websites by Chris Kesser and Robb Wolf were a lifesaver for me and helped me gain the knowledge to keep searching until I found the answers I needed to get me on track, ultimately leading me to a functional MD who treats holistically as well as a nutritionist.

    I really hope you can resolve your health issues and feel better soon. Don’t give up- keep fighting for your health Dude!

    Reply
    1. 6.1

      The Gluten Dude

      I appreciate the advice and support Kelly! Will take it to heart.

      Reply
      1. 6.1.1

        kelly

        Happy Birthday! It’s all so very overwhelming and quite honestly if, two years ago, someone had given me the advice I gave you I probably would have blown it off. We need to be ready to “deal” and process it all in our own time. Just promise yourself that YOU are worth the time, energy and money it will take to get you back to wellness because it is possible and it’s not “old” age or a normal part of having celiac disease.

        Glad you don’t have syphilis by the way- you are a hoot!

        Reply
  7. 7

    Rick

    Welcome GD, to the Celiac Prostate Club, and I am not its President.

    It is one way for men to focus on the multitude of inflammatory conditions that are part of the “Celiac life”, especially as we age. I am just coming off a 3 month uncomfortable bout of Inflammatory prostatitis. I am slowly learning the value of NSAIDS in my life with Celiac Disease.

    If Celiac disease was as simple as can’t eat wheat, barley, rye…. It is an autoimmune disease, with numerous implications.

    All the best.

    Reply
    1. 7.1

      The Gluten Dude

      Thanks Rick…and I totally get the Hair Club joke :)

      Reply
  8. 8

    Dawn

    Good morning Dude,

    Did you ever find out the results of your last t-transglutinase test?

    Also, I know you and your family do not want to take this route but it would not be a bad idea to make you home/kitchen 100% gluten free.

    If nothing else just a trial to find out if it makes a difference. I can not help but feel that you are being accidently glutened in your home. At least you would be able to rule out once and for all that this is not the case. It adds addtional stress and worry, trying to keep everything seperate.

    Reply
    1. 8.1

      The Gluten Dude

      Results came back totally normal. No gluten in my system. No sign of celiac.

      Reply
      1. 8.1.1

        Helen

        Oh I love that. My dumb dumb dumb gp
        Told me it was unlikely I was a Coeliac as the test came back negative and my villi were great. She smiled and said go eat gluten. For whatever reason ( mainly me being too scared to have fibromyalgia and suicidal depression again) I avoided gluten and her. Since that perky diagnoses I have suffered on and off with everything imaginable that you can get as a Coeliac. Stomach ulcers, h pylori, c diff, per cancerous appendix, one still birth due to septicemia and a couple of miscarriages. So not fun. And all that even though I have stayed gf to the very very best of my ability. Go figure. If its not cd I’m screwed. And , like you, lots of things come back ‘normal’. Normal for who??? My body temp is usually 35c and my blood pressure is super low. So when I was in hospital for aforesaid septicemia no one knew how sick I was although I told them time an time again a temp of 37 is really high for me. Anyway, enough about me. Keep searching. Sounds like your dr is a good one x

        Reply
        1. 8.1.1.1

          The Gluten Dude

          So sorry to hear of your struggles Helen. Yes…one person’s normal is another person’s something else.

          Reply
  9. 9

    Jen

    Dude,

    Glad to see everything was normal, and I totally understand and sympathize, I’m exhausted every day all day and most days my stomach tosses me some side eye from below. I’m following my naturopaths’ prescribed regime so I’m certain that it can only be the celiac and it is what it is.

    Be Well Friend.

    Reply
    1. 9.1

      The Gluten Dude

      “It is what it is.” I say that all the time.

      Reply
      1. 9.1.1

        IrishHeart

        huh!:) that’s funny, THAT’s what I say all the time :)

        only I say:

        “It is what it is…until it isn’t.”

        meaning…it can all change, babe!

        nothing’s cast in stone.

        Reply
  10. 10

    Kris

    I agree with the person who said maybe you are being accidentally glutened. Was your last tTg test normal? One thing I did learn from the docs, who again are true experts in the field, is that if I am not ingesting any gluten than I am as “normal” as anyone who doesn’t have Celiac. They assured me that any symptoms that remained were either unrelated to Celiac or the result of continued gluten exposure. It was reassuring because although it can be frustrating trying to remain completely gluten free, it reminded me that this disease, while not curable, is very treatable. Unfortunately it can sometimes be a long road to get there though.

    Reply
    1. 10.1

      The Gluten Dude

      But there are related issues with celiac that can happen, without ingesting gluten. Is it possible I’m getting some in my system? I guess, but I don’t see how. (unless it was the slice of pizza I had a few weeks back.)

      Reply
  11. 11

    Jo

    Anyone know the best way to track down a Doctor that specializes in Celiac? We are in the Midwest and would love to find someone close to home.

    Reply
    1. 11.1

      IrishHeart

      Call the local celiac support group and ask which GI doc serves on their advisory board. Here is a list of those in the US by state

      http://www.enabling.org/ia/celiac/groups/groupsus.html

      Also, not sure where in the Midwest you are (that’s a pretty big place :)) but there is there the Celiac Disease Center of Chicago

      http://www.cureceliacdisease.org/

      and here is a link to hospitals with Celiac disease centers in the US:

      http://celiacdisease.about.com/od/resourcesforceliacs/a/Centers.htm

      Hope this helps!

      Reply
  12. 12

    KellyA

    Hey Dude,

    Have you considered a xanthan gum sensitivity? After my first few months gluten-free and feeling slightly better, I decided to try GF bread. As nice as it was eating a sandwich at lunch with everyone else, I began experiencing terrible migraine-like symptoms, stomach pain and overall “bleh,” equivalent to my worst days prior to GF life. After some searching, I learned of a xanthan gum sensitivity and its prevalence in GF and non-GF foods. By eliminating GF bread as well as returning to only naturally GF foods (no more processed stuff), I began to feel much better.

    Obviously there are so many possibilities and I’m still new to all this, but it could be an option. Great blog and hope you are able to figure this out!

    Reply
    1. 12.1

      The Gluten Dude

      Interesting Kelly. I wonder if there is a test for it or it’s just process of elimination?

      Reply
  13. 13

    Jamie

    I would recommend seeing a Naturopath or functional medicine doctor. Basically one who does ‘NOT’ take insurance. They run better testing- functional testing. There are things such as saliva testing for hormones, stool testing, parasite testing, and testing to see not the levels of vitamins in your BLOOD but whether or not these vitamins are actually making it into your cells. Or stool testing. A good Naturopath will look at your tongue, your skin, and feel your pulse and can tell whether or not your body is inflamed etc. Blood testing is basically worthless, it will only show things when you are already far gone. I have been through this and STILL continue to go through this. For instance adrenal dysfunction that can be bad enough to make life miserable will most likely not show up in a blood test. That is because blood tests that doctors use are only designed to pick up EXTREME variations of ‘normal.’ What is a normal level for the supposed ‘average’ person may not be normal for you. I have learned to stay away from invasive mainstream testing because not only is most of it unnecessary but won’t give you any useful information. In fact a lot of it is downright harmful.

    Reply
    1. 13.1

      IrishHeart

      Saying “blood testing is basically worthless” is not only incorrect, but absurd and reckless.

      Does lab work ever have any errors? yes. But it is unusual and generally, labs have protocols in place to ensure accuracy.

      Even a subtle change in WBC or RBC, for example, is detectable.

      And I am betting that people who are DXed with leukemia, prostatitis, diabetes, thyroid disease, anemia or any number of diseases through blood tests are grateful for such testing.

      Also, a 2008 review article in Clinical Chemistry concluded that saliva testing has only been proven reliable for some purposes—for example, the diagnosis of Cushing Syndrome, a disorder caused by overly high cortisol levels.

      But, study author Michael Gröschl, a biologist at the University of Erlangen-Nürnberg in Germany, says “more work is needed before hormone profiles will be reliable.”

      “We need standardization the same way as for blood samples,” says Dr. Gröschl.

      Meaning, there is no CONTROL (in these at-home, over -the- counter test kits) , and there is no peer-reviewed research and no validity to it..

      http://www.sciencebasedmedicine.org/index.php/fatigued-by-a-fake-disease/

      Please, can you show me ONE Pub med article that explains the scientific validity of saliva testing for hormone levels, because I cannot find any and I have researched this topic for years.. (after I paid for thousands of dollars worth of “alternative and functional med testing” that rendered bogus results and kept me seriously ill with celiac or 3 years)

      Reply
    2. 13.2

      kelly

      EXACTLY, Jamie. I’m dealing with the same thing and it is well worth the money spent even if the money isn’t readily available. The testing and answers are out there but you won’t find them by seeing a mainstream MD. I found my physician by using Metametrix physician finder. Physician and the lab are both a big part of my road to wellness and healing adrenal fatigue and a nasty case of leaky gut with no digestive enzymes or stomach acid…finally some answers.

      Reply
  14. 14

    Jamie

    Another thing- try Betaine HCL with Pepsin as a digestive supplement. You may have low stomach acid. You can do some research on line for the proper way to dose yourself/ or see if it would benefit you. It is a very cheap supplement with some amazing benefits.

    Reply
    1. 14.1

      The Gluten Dude

      Never heard of the HCL before. Will check it out for sure.

      Reply
      1. 14.1.1

        IrishHeart

        Betaine HCL is only helpful for people with LOW stomach acid. Do some celiacs have that? yes. But not all of us.

        If you have excessive stomach acid and take that supplement?

        ouch…Your gut is going to BURN.

        If so, stop it. Drink a lot of water and it will subside.
        That burn means : You do not need it.

        Supplements have their uses, but taking them without knowing if you need them may cause problems.

        Been there/done that.

        Reply
  15. 15

    IrishHeart

    BTW, You will notice how I tried to slip in “trace gluten” in my post? It’s because the last thing anyone wants to hear from me is that I think your home needs to be totally GF. But, I was thinking all day after I wrote to you that you’re the kind of person who seems to appreciate those who shoot from the hip :) and you will not take offense. So, truth be told, GD, I think you may be getting hit subtly on a regular basis at home (or when you eat out.)

    I know people can co-exist with GEs in the house, but 9 times out of 10, the person with continuing GI problems and ill health is being accidentally cross-contaminated right in their own homes (or by medications.)

    It’s worth a shot for your whole family to go GF and see if you feel better and maybe that inflammatory response in you will subside.

    It does not matter if your antibodies are down and your villi seem healed.
    You can still be reactivating the inflammatory response over and over again from trace amounts. The stomach aches, fatigue and prostate inflammation could resolve on its own.

    And still see the endo and the urologist and have a PSA exam!
    ;).

    Reply
  16. 16

    The Gluten Dude

    I expect nothing less than shooting from the hip from you Irish ;-)

    I’m not getting glutened at home. That I can confidently say. I only go to one restaurant. Naturally there is an inherent risk so who knows.

    Reply
  17. 17

    Diana

    I went through a similar episode about 6 years ago. I have been free for 15 year. I started having symptoms and was going crazy and could not figure out what I was doing wrong. My endo did a endo and a colonoscopy. The endo showed that i was very gluten free but the colonoscopy showed an inflamation similar to Crohns. He prescribed medication, sorry I don’t remember the name, and after about 4 months the symptoms were gone. I don’t know if this helps you or not, but I believe that since celiac is an autoimmune disease, we are susceptible to other weird things. Good luck and don’t let this get you down. After 15 years I still have an occasional issue. I do the best I can and just go forward. Looking back is a waste of time.

    Reply
  18. 18

    Miss Dee Meanor

    Only those with “mystery” ailments can comprehend how welcome it is to hear you actually HAVE something..even if it’s not good.I remember being jealous of people who knew what to Google.

    I can’t add much more than has been said, but I will say that I’ve found that many gluten-free foods make me feel ill. It seems like all the processed foods including chips, bread, cake, cookies, pizza crusts, etc. affect me. A handful of Glutino’s Pretzels at work this past Monday has put me in a week of distress. The stomach churning started immediately after I ate them. The rest of the week has been awful. I’m not sure if it is xanthan gum, celluose gum, yeast, or something else altogether that gets me. The xanthan gum even sends the mister into a reaction and he could eat a tin can with no effects. I also have a “gluten” reaction to GF oats. Big reaction!

    In addition to following up on the medical side, you may want to consider eating whole unprocessed foods for a while to see if it makes a difference. This pretty much means eating at home for a while so you have control over the ingredients, but it would be worth knowing if that is why you’re still feeling “glutened”. If your grandmother wouldn’t recognize an ingredient as food, don’t eat it. See how you feel in a couple of weeks. It’s a great time to do this with so many fresh fruits and veggies in season. Organic would be even better.

    As a side-note, alcohol puts me in a little corner of hell. Yes, sometimes I go to hell anyway. I found a brand of gluten-free beer that I actually like at a Gluten Expo a few weeks ago and brought it home. It didn’t like me back. I’ll spare the details. Sorry, Dude…just sayin’!

    Reply
    1. 18.1

      grace

      Like you, there are other foods i cannot eat which i have learned the hard way through the process of elimination like corn, soy and refined sugar. You may want to examine your reaction to those things as well.

      Reply
  19. 19

    J

    I have been taking Turmeric pills (for inflammation) and Enteric Coated Peppermint Oil capsules (for general GI health). They helped calm down my system. I have no idea if these will help you, but they surely cant hurt… : )

    Reply
  20. 20

    E.J.

    I’m with those who are strongly urging follow-up at least on the electrolyte results! I have trouble with some electrolyte levels due to endocrine problems, but thankfully at least now I’m getting the right prescriptions and am doing something about it. Screwed up electrolyte levels can make a huge difference in how you feel, and can even be potentially dangerous if left untreated. You need to find out what’s going on with that.

    Reply
  21. 21

    Katertot

    Hey dude…
    Have you considered going vegan?
    It’s scary, I know, but honestly, I cannot function consuming animal products because THEY EAT GLUTEN. You are what you eat. That means a cow is gluten, and you’re a gluten-eating…cow?
    Yep. That was my missing link.

    Reply
  22. 22

    IrishHeart

    If you choose to be a vegan, that’s fine, and some people are quite healthy on this diet. (my friend with MS is very healthy as a vegan)

    But your reasoning is totally baseless and makes no sense, sorry.

    It is absolutely IMPOSSIBLE for an animal to “pass gluten” through their systems into their flesh.

    Otherwise, all the meat-eating celiacs in the world would be dead by now.

    Reply
    1. 22.1

      Miss Dee Meanor

      Can gluten pass through cow’s milk? I’ve read where breastfeeding human mothers should not consume gluten if their child tests positive for Celiac (or could possibly carry the genes for Celiac), but never explored it further to see if it is fact or fiction because a) I can’t tolerate dairy..never have. b) my baby is now 29 years old so I have no dog in that fight. Interesting topic though…

      Reply
  23. 23

    Cassandra

    HI. I just found this blog and hopefully you’ve found a solution, but I wanted to suggest a thyroid screening – I can’t eat gluten not because of celiac but because of autoimmune thyroid disease and there’s a known link between it (hashimoto’s) and celiac.

    It was gut symptoms and exhaustion and vitamin deficiency that sent me to a naturopath and eventually got me diagnosed – but standard labs do not necessarily show Hashimoto’s – you can be ‘normal’ and STILL feel like shit. Perhaps go back and ask for them to test not just TSH but antibodies to the thyroid?

    Hope this is totally unnecessary because you feel great now.

    Reply
  24. 24

    jesskazen

    Do you have mercury amalgam fillings?

    Reply
    1. 24.1

      grace

      Why do you ask about mercury amalgam fillings? I am having the similiar problems and I do have the old silver fillings.

      Reply

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