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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About JerryK

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      Hey you get to type in here after 500 posts!
    • Birthday 06/11/1960

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    • Gender Male
    • Location Oregon

    JerryK's Activity

    1. JerryK added a post in a topic Elevated Liver Enzymes   

      So are the levels that I stated consistent with what you folks have seen...I don't know if these levels
      are very high...relatively speaking....
      • 0
    2. JerryK added a topic in Celiac Disease - Coping With   

      Elevated Liver Enzymes
      Hi, possibly some of you here remember me;0

      I was never officially diagnosed as Celiac, but pretty much confirmed Gluten Intolerance, thru
      self testing and Enterolab.

      I've been "mostly" gluten free for a couple years now (I cheat, yeah I know I shouldn't).

      I just had a complete set of bloodwork done. I'm telling ya they took 29 vials of blood.

      Everything looked good, except my Cholesterol was borderline and two liver enzymes were elevated.

      AST was 48 (5-43)
      ALT was 83 (10-58)

      While exercise can affect the AST/ALT tests (and I went for an 8 mile run the day before this test), I've also read that Celiac or Gluten Intolerance can affect liver enzymes.

      How worried should I be about this? My doc says it's not urgent...I suspect it's either an affect of too much exercise or Gluten Intolerance...Anyone else?
      • 6 replies
    3. JerryK added a post in a topic Vitamin D   

      They said at his level, they had never seen anyone walking around...(less than 4)
      • 0
    4. JerryK added a topic in Celiac Disease - Coping With   

      Vitamin D
      See his email below: How can this be so? How can Dr's miss this. How many people out there with Fibro have low vitamin D and no one bothered to check? Anyone out there feel like crap...hurt all over and no one bothered to check your vitamin D levels??


      I hurt ALL over and it took until noon or longer to feel a little better. I was taking 6 tylenol a day and advil too. I don
      • 12 replies
    5. JerryK added a post in a topic Hello Again...   

      My brother just sent me this email re his Vitamin D regimen...

      I would say it's helping...

      Man I am serious
      • 0
    6. JerryK added a post in a topic Hello Again...   

      Never had it tested. Never even considered that it was a possibility. Now given all the different ADs they tried on me with dubious success. The only thing that ever made me feel better was the sunshine
      I suspect my levels were low, but probably not as low as his were. It's amazing he was still walking around.
      • 0
    7. JerryK added a post in a topic False Negatives For Bloodwork?   

      This is really all the diagnosis you need. I spent months doing gluten trials and learning for myself exactly how my body reacts.
      Sounds like you won't be eating it in the long run...regardless of a diagnosis. The only thing a positive biopsy or blood test buys you
      is perhaps some motivation to stick to the diet. Your body tells you what you shouldn't eat.
      • 0
    8. JerryK added a post in a topic Vitamin D Leve - 4.5 -!   

      I just noticed this thread. My identical twin brother (who refuses to go Gluten Free) has been diagnosed with Fibromyalgia. He claims he hurts so bad he can't work some days (office job!). The Dr. has put him on Lyrica....Amtriptaline (sp)...and various other stuff trying to
      help him. I keep telling him it's the Gluten in his diet....

      Dr. finally decides to test his Vitamin D levels and it is less than 4. We've both had to have all our teeth crowned.......
      I think now he is starting to believe me. He's taken 50,000 IUs of D per week, for a couple weeks now and says his
      pain is 95% resolved.

      I'd made a connection between what happened to my teeth and Gluten, but it never ocurred to me that it was vitamin D that could be
      the culprit. We live in the Pac NW....where we maybe get enough sunshine 5 months out of a year, to make D, if it's sunny.

      I keep on learning....
      • 0
    9. JerryK added a topic in Celiac Disease - Coping With   

      Hello Again...
      Hello everyone,

      Perhaps some of you remember me. It's been perhaps a year or so since I last posted. Something interesting has happened that I wanted to share and get some opinions on.

      Just a recap on me. I was tested by Enterolab a couple years ago....Gluten Intolerance was confirmed...a gene test did not indicate I have the main Celiac genes. Blood testing at my HMO was not conclusive for Celiac. I have been on a gluten-free diet for a couple years now. It comes pretty naturally...I just avoid anything that seems questionable. I can eat things with trace amounts of wheat, with little impact, but any gluten of substantial amount and I get all the symptoms (you know what they are).

      Soooo, I have an identical twin brother. He has, for the last couple years, ignored my attempts to get him to go gluten-free. In that time he has been diagnosed with "Fibromyalgia". (ok, no offense to anyone with fibro, but I believe this is a medical code word for --we don't know why you don't feel good, so here's a diagnosis).

      About three weeks ago, he calls me...he's in so much pain that he cannot work. He's on his way to the Dr. Of course I ask him what he's eating....(Doy, he had three pieces of toast the night before).... Now here's where it gets interesting: He gets an email from his Dr. a couple days later: "Your vitamin D level is severely low, we've prescribed 50,000 IUs of D to be taken 1/per week for the next 8 weeks". His level
      was "less than 4"...when 25 is considered the low end of normal.

      A week after he starts taking his vitamin D, he tells me his pain is 95% gone. He feels the best he has in 10 years. His fibro appears to be cured or in remission.

      Since vitamin D is the hormone that helps the body to regulate calcium absorbtion...does anyone here doubt that this is related to Gluten Intolerance/Celiac? Did I mention that we both had to have all of our teeth crowned in our early 40s, due to massive wear and decay.

      I'm of the opinion that I didn't get the Fibro symptoms because I spend loads of time outside running, especially in the summer and perhaps my levels stayed up due to this. Also, I've been gluten-free for two years and all of my gastro symptoms have resolved.

      • 9 replies
    10. JerryK added a post in a topic Hla-dq 3,1 (subtype 7,5)   

    11. JerryK added a topic in Celiac Disease - Coping With   

      Hla-dq 3,1 (subtype 7,5)
      According to Dr Ken Fine my Gene Test indicates:

      "you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe."

      This is year old news to me now, but I need the "smoking gun". I need to see some links or research papers that link my results with gluten sensitivity, especially of the neurological kind. I know there's a bit out there, but it's difficult to find. Anyone that can help me will be my hero(at least for a few minutes).

      HLA-DQB1 Molecular analysis, Allele 1 0301

      HLA-DQB1 Molecular analysis, Allele 2 0501

      Serologic equivalent: HLA-DQ 3,1 (Subtype 7,5)
      • 2 replies
    12. JerryK added a post in a topic My Brother   

      My mental health professional, who knows my story well, now agrees that my condition does indeed
      appear to be exacerbated by gluten ingestion.

      I related to him the fact that my brother has been diagnosed with Fibromyalgia and the first thing out of
      my docs mouth was "well you know Fibromyalgia has been linked to gluten..right?"

      Regardless, when you eat gluten and feel like curling up into a ball for two days, this is an indication that "perhaps I shouldn't eat that". Slowly getting thru to my brother I hope...

      I dared him to go off of wheat for two weeks and then eat a big gob. He will be a believer after that.
      • 0
    13. JerryK added a post in a topic My Brother   

      Funny, because today I've been pounding on him, trying to wear him down. He was telling me today he was feeling kinda crappy...coincidentally he had a large subway sandwich for dinner last night.

      I was able to list his symptoms for him. Which he found quite shocking.
      • 0
    14. JerryK added a post in a topic Can I Have Celiac With A Negative Biopsy And A Positive Elisa Panel   

      I think the answer to your question is: Celiac is a term used for just one of the manifestations of a rather large spectrum of gluten sensitivity. Celiac being specific intestinal damage. It
      • 0
    15. JerryK added a topic in Celiac Disease - Coping With   

      My Brother
      So my IDENTICAL twin brother, has for a year and a half now, refused to hear me when I tell him about gluten sensitivity. I've given him the whole speil...told him about the big D, the aches, the pains, the depression, the blurred vision all going away when I went gluten-free.

      Recently brother was diagnosed with fibromyalgia! He's on Lyrica for pain and has had a couple cortisone shots in his neck.

      Now, I've pretty much made gluten-free my lifestyle, and I do it pretty much without even really thinking much about it. I will admit that I fall off the wagon now and then and have been known to eat half a cookie and get away with it. Recently I had a severe backslide and ate a whole carton of glutenated orange chicken.
      Man did it taste good! But the next day I was anxious, depressed and I too suddenly had FIBROMYALGIA!!

      The problem. I cannot convince my brother that the link between fibro and gluten is real. I cannot convince him that his psychic symptoms are exacerbated by gluten intake. He thinks it's all a "load" no pun intended.

      So...does anyone have any links to any hard research showing the gluten/fibro link in all it's glory. I need some real hard data to push in his face, because I'm tired of hearing him whine.
      • 17 replies

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