Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • 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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

1 Neutral

About scrcdawn

  • Rank
    New Community Member
  1. Hi, I went through Quest labs, my doctor ordered the test ( although she did not know there was such a test and I had to tell her what to order, you have to do a lot of research on your own). You could always contact the lab and ask about the rest of the genetic portion. I had my first regular cycle right after I went gluten free and it has been every 28 days since. My other symptoms went away in order of appearance I like to say.  Most of the joint and muscle pain was gone in a week, my finger joints which started first took about 2 months.  My severe constipation took almost 3 months and the reflux took about 2 months, and it is now completely gone. The insomnia still comes and goes but the night sweats are gone. Make sure you are eating 100% gluten free, and read every label.  I tend to avoid most packaged food, it is easier.  I only eat pasta on occasion and rice crackers as a treat. Do not eat anything that says was processed in a facility that also processes wheat, the food is contaminated. Good luck and stick with it, you need to go 100% to really feel the effects.  
  2. You could be me I had horrible PMS my entire life with no cycle at all, and the pain with it was crippling.  I then started with joint pain and stiffness in my hands ( thought was RA but no), pain started spreading, hands would go numb, muscle pain, insomnia, severe constipation ( I once needed 5 doses of Miralax, 2 dulcolax and a suppository to go after 5 days), night sweats and more.  The worst was face pain so bad I felt like someone used me as a punching bag.  Now doc says I have Fibromyalgia.  Now I am on pain meds, sleep meds and meds for PMS.  I work in a hospital, and could not exist like this. I researched Fibro treatments and some had good luck going gluten-free. In a week most of my symptoms went away. I started eating wheat again, it all came back. I had been gluten free 2 months when I followed up with my doc and felt like a new person, so no Fibro, but gluten problem. I cannot get tested, I will NOT put my body through that again to get a definitive diagnosis.  I was genetically tested, I have a  rare potential celiac gene, ( DQ2.2) and cannot eat gluten that is enough for me. My cycles are now a perfect 28 days ( never had that in 30 some years), the PMS is gone, the pain is gone and I feel wonderful. I am off all the meds. You can still have your kids tested and take it from there.   It is why we say we "practice medicine"  it is not perfect, and I have seen some crazy stuff in my 20 years in the field, so I just trust in myself and what makes me feel healthy.
  3. I have read that you should avoid oats, even gluten-free for a few months after starting a gluten free diet, then try to eat them once you are healed.  I had joint and muscle pain after I ate them, just like I had gluten.  Some research says the protein structure is very similar and can cause a reaction similar to being exposed to gluten.  I just go by how I feel.  Some folks have tried Quinoa flakes instead of oats.  I have not been able to find them locally, I need to try Whole Foods. 
  4. I just had my genetic testing done, and it seems you are missing the DQA1 portion of your results.  The DQB1 0202 can be a problem if it is linked to the right DQA1 allele.  Basically you have these alleles on Chromosome 6 and the B and A combine to form various combinations.  These combinations will determine if you have the potential to develop Celiac, it is not set in stone and many people have the genetics and never develop the disease.  I have DQB1 0202 and DQA1 0201 which form DQ2.2.  The most common genetic combination is HLA-DQ2 ( a combination of DQA1*05 and DQB1*02) or HLA-DQ8 ( a combination of DQA1*03 and DQB1*0302).  I was considered not to have celiac based on the genetics, however when I dug deeper, 5% of Celiacs have my genetic combination.   I am not sure about the rest of your results, but I had severe reflux and constipation, I had to live on laxatives to go to the bathroom.  All that went away when I went gluten free.  I also have extremely low vitamin D, and am taking a supplement for that.  I would definitely talk to your doctor, and if he/she still does not think it is Celiac, you can always try an elimination diet and see how you feel.  I have not been diagnosed officially because I went gluten free before it could be confirmed.  I could not do a gluten challenge, I was practically disabled from pain and I need to work.  I was a runner before all this, and it is frustrating, but I am finally feeling like the younger me after 4 months of being gluten free.  Good luck!
  5. I understand the vitamin D issue, I work in the medical field, but since I walk daily without sunblock, am not overweight, am light skinned, and already take a supplement, it came as a surprise.  My symptoms of joint and muscle pain, severe reflux, insomnia, night sweats, severe PMS, muscle weakness, fatigue and bloating all disappeared after going gluten free.  I went from a runner to being barely able to function.  I was just curious what other genetic variants were possible, as I also have a rare clotting disorder, so I tend to be the odd medical mystery.
  6. I have been online all day and beside my head hurting, I am more confused.   I had been gluten free for 3 months ( because I needed a life and to be able to work and I was practically disabled from pain ) when I figured it could not hurt to get some more info even though I am like a brand new person gluten free .  I asked for the genetic panel since I was already gluten free and no way in hell was I going back on gluten for any other testing.     HLA-DQ2 ( DQA1*05/DQB1* 02) Negative HLA-DQ8 ( DQA1*03/DQB1*0302) Negative   I understand those primarily would be positive in celiac , but then these are listed, and since my doc did not even know genetic testing existed, I am not relying on her info. It turns out she also tested for vitamin D which was off the chart low, which seemed odd if the celiac is indeed negative.   HLA-DQA1*01 HLA-DQA1*02 HLA-DQB1*0202 HLA-DQB1*0609   Any simple info would be helpful, I am just not grasping all the sites I have been to today.  Thanks so much!!!
  7. I had joint pain, dx with fibromyalgia, then went gluten free and poof, all aches,joint  pain, muscle pain disappeared. Now dx gluten intolerant. Came back this weekend, opps seems I cannot eat oats either.  Back to feeling like I did in high school, but better!!!!
  8. Constipation

    While you are waiting for results have you tried prunes?  I work in pediatrics and it seems to work wonders for some kids, at least as a temporary measure for you. I never had a problem until a few months ago until all the other nasty issues arose then I just could not go.  I started living on Miralax.  I drink tons of water, exercise, eat loads of fruits and veggies (  I don't eat most meat) and still issues.  I have been gluten-free about 3 weeks, and I am just able to go a little more, it is very slowly getting better.  I also supplement with dried prunes, probiotics and digestive enzymes. Good luck, it is so hard to see little people suffer.
  9. Thanks for all the info.   My doctor did test me for Lymes, all thyroid levels, and complete CBC etc.  I had 5 tubes of blood work done, including the entire RA profile and xrays which just revealed osteoarthritis in my middle left finger ( no I do not give the finger a lot..) It just amazes me how much better I feel in just 3 weeks, and going back to eating gluten just for testing would probably knock me out my behind, I could barely walk some days, a far cry from running a 10k.   I am going back in a month, so I may push for a genetic test, I am an only child and have no children, so I am not sure if that would be worth doing.
  10. I will try and make this the cliff note version.   I was a runner, active, healthy eater, then last December I started waking up with very stiff fingers in the morning.  Within a few months I had pain everywhere, joints, muscle, my skin was tender to the touch, and I had days I could barely drive because of pain and tenderness in my hands ( ever drive with your wrists?) I also work in a hospital and work 12 hour shifts, and I needed to find some kind of answer.  Oh and I had horrible PMS and insomnia to just add to the fun.  For a month I lived on rolaids for reflux.  I got to the point I could barely roll out of bed. After eating sprouted wheat bread I looked like I was going to give birth.   I thought RA , was tested and everything negative.  Lead to diagnosis of Fibromyalgia.  After wallowing in misery for another month I knew I had to do something, I had a few days where I would just lay on the couch and just have no interest in anything.   So, being type A, I researched my butt off and decided to try gluten free, I needed my life back.  Within a week, symptoms started going away.  After 2 weeks, I reintroduced gluten to see if it was a coincidence.  Within 48 hours it all came back.  I have now been gluten free for 3 weeks, and feel amazing.  ALL symptoms gone, except a mild twinge here and there.   My doc now believes it was it may have been celiac all along.  She says blood tests are not completely reliable and even if they came back negative, I would not ever go back eating gluten again.  I am on blood thinners for life, and I would not have an endoscopy because I am always the one in a million person who has an adverse outcome with things.   So, long story short, I am comfortable eating this way ( I felt poisoned before) but for some reason still have this need to have something concrete ( it is a health care worker thing).  Has anyone been diagnosed just on symptoms without testing further?