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Beverage last won the day on April 20 2019

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  1. Oh and you mention RESTLESS LEGS ... I had that, weird feeling of movement or muscles firing when not moving them, and irresistible urge to move my leg, usually in left leg but sometimes in right leg.  It would set in usually in the evening and could keep me from falling asleep for awhile.  It's completely gone now after I was off gluten for maybe only 2 weeks.  :o)

    Doc says from either some nutritional depletion / neurological damage, root cause ... Celiac's.

  2. I have an official diagnosis on paper and it was NOT done with endoscopy.  My doc  says they are no longer considered reliable for celiac diagnosis because the damage can be missed...a negative is not conclusive...if damage is found, that would of course be conclusive, but if damage is not found, it is not.  My diagnosis was based on blood tests that showed high antibodies against gluten and gliadin along with malabsorbtion indications.

    At first I was having a difficult time accepting the diagnosis without the endoscopy, so got the DNA test to see if it was even potential for me to have it, and it did come back positive (yes, I know, everyone, only a small percentage of those that are positive with the celiac genes actually develop it).  But it was what I needed mentally to accept and commit.

    That was all in Summer 2015, I've been gluten free since July, dropped 30 lbs of inflammation, starting to feel more energy, able to smell again after years without, no intestional distress after eating, which is all more confirmation to me.  I'm totally accepting of having celiac disease and looking forward to more improvements in overall health.  I haven't had a single cold or flu since...and I used to get one after the other constantly.

    I would recommend my doc if you are in the Seattle area.

  3. Hello, AnxietyQueen.  Do not despair.  It takes awhile to heal, and it's an ongoing process of finding possible gluten contamination. 

    I was diagnosed in June 2015, felt horrible for at least 2 months after stopping gluten, like I had the flu or a little constant hangover, then after that cleared up, still very very tired.  Doc discovered I also had B1/thiamin deficiency (vitamin deficiencies common in celiac's until the gut heals), and I am now on a short course of super high B1 supplements and feeling better.  Also, via  a blood test, he discovered Candida Albicans, which is a yeast/fungal overgrowth, which can set in in the intestines because of the havoc and stress of the celiac's.  To treat that I am on a protocol of low low sugar (sugar feeds the nasty bugger) various natural supplements over a long course of time to eliminate that.  As soon as I started on the first thing, the Oregano Oil, I saw a huge improvement in the "poop" situation.  This doc would usually prescribe an anti-fungal drug for the Candida, but my body does not tolerate a lot of drugs, overreacts with high blood pressure, etc., so having to go the longer more gentle route to eliminate the Candida.

    I have just gone through an additional round of clearing out things in the house that might cross contaminate me...cutting boards, plastic food storage containers (old gluten can get in any scratches and contaminate you, tossed all and got pyrex ones), crock pots (any of those fine crazing lines or cracks can hold onto old gluten), waffle maker, toaster, cleaned the oven.  Also, hand and lotion (just found Andalou brand certified gluten free), lip balm, lip stick, etc.  Also consider if you are drinking tea and using tea bags...some brands use glue which contains gluten on the bags!!!  I switched to a brand (The Republic of Tea) that is certified gluten free.

    I went for years with complaints from very severe allergies, could not smell anything, and overall declining health to my regular doc, but all I ended up with was high blood pressure, on diuretics that resulted in kidney damage, and the Celiac's was never diagnosed.  After getting laid off, I finally had time to try another doc, and am so grateful to find a fantastic naturopath doc who diagnosed the celiac's in one visit and one blood test.  I've been working with him on these other things since June and am finally seeing improvements overall.  I actually have a little more energy now, overall inflammation is going down down down, so things are looking up.  And the kidneys bounced back to just in the ok range, which the regular doc said would never happen (pish).

    If you do not have a doc that is very knowledgeable in Celiac's, I'd try to find another.  A lot has changed in only a few years and not all docs are up to date.  And it's not all about just the Celiac's and going gluten free and voila, you're fantastic.  Because of the damage it has done, a lot of other things can set in, but you need someone who will work with you on that as your gut heals, and so that you heal and feel better as fast as possible.

    Good luck!



  4. H, all!  I'm newly diagnosed since June of this year and I am so happy to see this discussion, always learning something new. 

    Since I'm a newby to going gluten free, I also looked for "gluten free" on labels, but now I am learning that that is the company's claim, meeting FDA standards, which means testing less than 20 parts per million.  I've read conflicting articles that 20ppm is ok for celiacs, but mostly that it is not good enough.  So now I look for the gluten-free in the circle (http://www.gfco.org/), which means it meets their stricter standards, and they are an outside validation of the product, not just the company's.

    I've been so paranoid and careful about everything I put in or on my body, but TOTALLY did not even consider the Costco / Kirkland nuts.  Maybe because they are a whole food, I didn't think about possible contamination during the processing to shell those nuts.  Anyway, lesson learned.  I do plan to make a major purchase today from nuts.com.

    But I have many big bags of shelled nuts from Costco.  Does anyone know...can you perhaps dunk the shelled nuts in a big bowl of water, RINSE them off  and let them dry out perhaps in a very low oven???  Would those then be safe?  It's what I dreamed last night when considering my dilemma of all those bags of Costco nuts in my freezer.  =:oO

  5. Oh gosh, I am so sorry to hear that, how horrible!

    No, I was just trying to clarify how I was diagnosed, since it was not with the biopsy.  So much to learn since I was diagnosed just this past June, and it can be so confusing.

    I don't I have food allergies that have been discovered (so far), but I have had anaphalactic reactions to things I have inhaled (fresh wood chips in the garden, candles...), so I always have an epi pen handy, but you have reminded me to check those expiration dates!  ;o)

  6. Celiac's is an auto-immune disease that does cause the damage to the villi in the upper intestines, right, not just a food sensitivity.  The results of this test panel were used as an indicator, according to the doc.  It was the malnutrition/malabsorbtion signs in addition that he came up with the diagnosis.  Anyway, just trying to help atheresa figure out what to do next without having to get sick again by eating gluten, and the DNA test is what I suggest. 

    Atheresa...keep us posted...I want to hear what you decide and how it all goes!  Good luck!

  7. It was part of a 95 most common food allergens panel, which looks for antibodies to different foods.  It showed me high in all dairy (which is common for Ceiac's because of the damaged intestines), and also in Barley, Gliaden, Gluten, Malt, and Wheat.  Most everything else was fine.  I got this through the Naturopathic doc...a traditional doc never in 20 years of gradually increasing jcomplaints and problems ever ever ever suggested this kind of testing and the ND figured it out after 1 office visit and the results of this one test.  Sigh.

  8. You could do the DNA test without ingesting gluten and making yourself sick.

    The DNA test will show if you have the Celiac gene, the POSSIBILITY to develop this disease.  If it comes back NEGATIVE, you could NOT possibly have Celiac's, so  NCGS would probably be the cause of your symptoms when you were eating gluten.  If it comes back POSITIVE, you may or may not have developed Celiac's, but you have the potential to, and so staying gluten-free, especially with your symptoms when you were eating gluten, is a fantastic thing to do.  Also, this is a genetic disease, and blood relatives could also have the gene and should know, and if you test positive, you would be able to guide the ones you love to this possibility for them.  If someone has the gene, going gluten free before developing Celiac's will prevent this disease and all its malnutrition/malabsorbtion and other auto immune diseases that are more common with people that have Celiac's.

    Not all Celiac DNA tests are the same, the prices vary widely, and don't always test the same bits of the DNA.  I found that the cheaper tests usually only test the most common, and the more expensive ones test more.  You have to make sure that the company tests the full thing.  There are a lot of good articles about it.  

    I was diagnosed by a naturopath doctor based on gluten senstivity that showed up in my blood tests (which does not prove Celiac's, but shows at least gluten sensitivity), plus signs of malnutrition/malabsorbtion.  The blood tests do require that you are eating guten, so not an option for you unless you want to do that, and given your own results, isn't necessary in my opinion.  I did not want to go through an invasive biopsy of the upper colon to prove Celiac's (this requires eating gluten also and since the places where the damage in the intestines are can be spotty, does not necessarily prove you do not have it, could be that it was missed, but if the damage is found it is a conclusive positive of Celiac's). 

    So I went with getting the DNA test, which I tested positive for on one of the lesser common bits of the DNA, and that was enough for me to mentally set in my mind that the Naturopath is right and I have Celiac's, and that staying gluten free for the rest of my life was my path to better health.  This reality is helping me stick with the program so to speak.

    I got my Celiac test done by http://www.celiacdiseasedna.com/.  It cost me $249 (test name is "Celiac Disease DNA Test, HLA-DQ Alpha and HLA-DQ-Beta").  They are in Canada.  I paid extra to have the swab kit sent to me Priority, and it arrived within a few days.  There were instructions in the swab kit about sending the swabs back by Priority, which I didn't do (it took almost 2 weeks to get back to them, and the waiting was excruciating), but given how long USPS took, I would do it that way.




  9. Did you get tested for yeast overgrowth?  I was diagnosed first with celiac's, saw a slight improvement with the gluten-free diet.  However, with eliminating the gluten, I had added in a lot more fruits, which actually aggrevated some of my symptoms.  Then the candida albacans results came in as high.  Not until I cut out all sugars, including fruits and hidden sugars, then I started seeing improvement in the urinary and bowel symptoms.  I've only been following the the candida diet for a little over a week, and seeing much more improvement than just with a gluten-free diet, and the urgency to urinate and all that is starting to subside.  The candida albacans can be tested various ways, and the stricter candida diet is not a forever thing, just until it all clears up.  Good luck, keep us posted!