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46 Comments

  1. 1

    Ann

    Lynda you may have to kick your strictness up a level. Check your toothpaste, lipstick, drugs, vitamins and anything else that comes anywhere near your mouth. Don’t kiss your husband if he has been drinking beer or eating bread. If you have kids check their habits – are they wiping gluteny hands on the dish towel you use for gluten free stuff? Finally, sounds to me like someone may have changed the ingredients on one of your “trusted GF” products.

    Reply
  2. 2

    Nicole

    Hi Lynda-

    Hang in there! I realize how absolutely frustrating this may be for you right now.

    Glance over this list where gluten loves to hide:

    -Envelopes & stamps (never lick them!)
    -Wood cutting boards are porous and gluten may become embedded in them
    -Double dipping in jars (jam, peanut butter, mayo, butter) w/contaminated knives
    -Do you use latex or rubber gloves to wash dishes? These are often dusted with wheat or oat flour
    -Medications frequently contain gluten. Pills may be dusted with flour during manufacturing and capsules may have gluten present in the oil inside

    I suggest eliminating “questionable” items from your diet and start over completely to see if this helps.

    Feel better!

    Reply
  3. 3

    Debbie

    Pet food. We have dogs, cats, chickens and horses. My dogs and cats are gluten free, but horse feed and chicken feed has wheat, and barley.

    Just keep searching!

    Feel better soon!

    Reply
  4. 4

    Renee

    First off – good for you for getting follow-up bloodwork. At least you know, and knowledge is power, right?

    Here are my suggestions after 16 years…
    1. Check your regular medications and vitamins. http://www.glutenfreedrugs.com is a good place to start. Reach out to the pharmacist on that webpage if you need additional help. he knows what he is doing.
    2. Double check all the ingredients on your packaged foods. Eliminate the questionable ones.
    3. Eliminate eating out for a month or two. Cross-contamination when eating out is one of the biggest culprits, in my opinion.
    4. Get your thyroid levels checked. Autoimmune thyroid disease (Hashi’s or Graves) are very common in celiac patients and can cause you to be very tired.
    5. Get your B-12, iron, etc checked too. Celiac disease can cause malabsorption of vitamins and nutrients even after our intestine has healed. You may need extra supplementation. Deficiencies can cause tiredness.
    6. Be patient. It takes time. More time than ‘they’ say it does. Esepcially in adults.
    Hope this helps!
    Renee

    Reply
  5. 5

    Luna

    All the advice so far is awesome. I’d like to add another: Get all the regular flour out of your house. Don’t EVER bake with it in your house. It’ll stay in the air for a while and then land on all the surfaces. Best to get rid of anything with crumbs too. At least until you can get your numbers down. Then you’ll know if that’s what’s causing the problem.

    My family was not fastidious enough. It was not until I said, “THAT’S IT! NO MORE GLUTEN IN THE HOUSE!” (at about that volume) that my numbers went down and my body got healthy.

    And no, “get your own cookware” is definitely not extreme. It’s completely necessary. Think about how tiny gluten molecules are. You’re looking for *zero* gluten.

    Good luck!

    Reply
  6. 6

    Melissa

    I love what everyone has shared. I’m only a couple of years in, but my 4 year old son had the worst (apparent) reactions and we couldn’t get it under control until we went completely GF in the house. It’s such a blessing too to know that I don’t have to worry if someone drops a crumb and one of the little ones eat it. (gross, I know, but they do it.) Now, me and my two little ones don’t have to worry about what is safe or unsafe or cross contamination.
    Hang in there!

    Reply
  7. 7

    Michelle @ Spinning Spoons

    All of the advice so far is great. I just want to re-iterate that my apartment/kitchen is 100% gluten free. I don’t feel safe or healthy otherwise. Best of luck!

    Reply
  8. 8

    Sharon

    I totally feel your pain. I was diagnosed 2 1/2 years ago and I just had my second endoscopy to see how I’m healing. The doctor just called me to tell me that it still looks the same as my last test did (back when I was eating gluten). So he thinks I’m getting gluten from somewhere. Im so frustrated because I have been ridiculously careful. I feel like these last 2 1/2 years have been a waste. Why have I been driving myself and everyone around me crazy when I’m not even healing?? But alot of the suggestions people are making here sound good. It’s just so frustrating!!!

    Reply
  9. 9

    Amanda

    Lynda, I was diagnosed in 1974, I have my own GF toaster, also an area of the kitchen which is NO GLUTEN allowed. I have my own butter. I use squeezy bottles where available for condiments. I use different knives for spreading. Yes I will make my husband toast. (I wouldn’t ask him to eat the bread I eat), I wash my hands after. If we have pasta its GF. I make all of my sauces from scratch, I make my own sauces etc.

    My dog eats gluten food and treats, I’m extremely careful to wash my hands afterwards. I did look at all my cosmetics and got rid of those that may contain gluten.

    I don’t eat oats……….EVER!
    Even given up red wine recently……….I miss it.

    I’m feeling good.

    Reply
  10. 10

    The Gluten Dude

    Great advice thus far everyone. I can’t thank you enough for posting.

    Not to toot our own horns, but the celiac community really is a pretty dang special place to be.

    Reply
  11. 11

    Sassy Celiactivist

    I don’t really have anything to offer, other than, I understand the frustration! I have been gluten-free for a year and my TTG is still over 200. The only thing I have found is that TTG shows intestinal damage, not adherence to a gluten-free diet/ingestion of gluten. And with that, I have heard that it can take “a long time to heal”. I completely understand feeling like it was all for nothing….a whole year of being super strict and still the high numbers? I burst into tears. It’s super frustrating not knowing what to do to make it better, when you are doing everything you have been told to do.

    Reply
    1. 11.1

      The Gluten Dude

      Took me 2.5 years to begin to feel better. Frustrating in an understatement. Hang in there.

      Reply
  12. 12

    Sassy Celiactivist

    Thanks, Gluten Dude…it definitely helps knowing that other people weren’t instantaneously “cured”…it’s sometimes the only thing that keeps me sane (well…mostly sane…haha) ;)

    Reply
  13. 13

    Dawn B

    Dear Lynda,

    I do not have Celiac Disease but all the other members of my household do.
    I firmly believe that your house needs to be 100% gluten free. It is far too easy to accidently be glutened. Dude I think this goes for you too.
    Your home should be the one place that you can feel assured you are safe.
    Just my opinion. Surprisingly, I sincerely do not missed gluten. When we go out as a family I choose gf items as well to support the rest of my family.
    Before my daughter was diagnosed she resisted but she did get over it reluctantly.

    Reply
    1. 13.1

      The Gluten Dude

      Do you mind if I forward your comment to my kids :)

      Reply
      1. 13.1.1

        Dawn B

        Please do!!!

        Reply
        1. 13.1.1.1

          Sassy Celiactivist

          I agree…that’s awesome. My house is completely gluten-free, but my family’s is not. So, now I don’t have dinner with them. When I had a bf living with me, he agreed to be gluten-free in the house. He saw how sick I was. Sometimes I feel like it’s too much to ask…but on the other hand…it’s our health. People can ask others to not smoke around them, right? Not quite the same, but still. The entire family of my Celiac friend on the East Coast went gluten-free, even when he’s not around. I am envious! :)

          Reply
          1. 13.1.1.1.1

            Dawn B

            Good morning Sassy,
            I do not think it is too much to ask in your own home. Again, it is the one place you should not have to worry about gluten or cross contamination. As I mentioned I am the only person in my family of four that does not have Celiac Disease but would not even consider trying to have gf items in my house for a couple other reasons as well. I think it is too tempting to cheat if it is right in your face.
            You could bring your own food to eat with your family if you want to spend time with them at a meal. Sucks but better than nothing.
            Your bf sounds like a great person to support you like that by the way.

            Reply
  14. 14

    Sassy Celiactivist

    Dawn B, it took him a long time to figure it out, but when he finally did, he was very supportive and even took care of me after my intestinal surgery. Unfortunately, other issues couldn’t be resolved, so he is now my ex. Gluten-free dating is a lot harder, but not impossible ;)

    Reply
  15. 15

    Jen

    Just because someone isn’t symptomatic, doesn’t mean damage isn’t happening to the gut, or that inflammation levels (also VERY unhealthy) aren’t very, very high. Being asymptomatic can actually be really dangerous. That’s why it’s important to understand the hidden sources of gluten–even if they don’t seem to be causing any immediate issues. The ill effects from exposure can accumulate over time.

    Foods

    – Processed foods–even those labeled gluten free by trustworthy brands–are a big question mark due to contamination during processing. The only way I could tell which ones were contaminated/bothering me was by quasi-fasting for a period of time and then reintroducing some things as occasional treats. I discovered I could tolerate a few items produced by one brand. Other than that, I make it myself with trustworthy gluten-free flours.

    – Any foods that are powdered or processed in any way could have shared a machine with gluten-containing grains during processing. Apparently, they must use the same machine for every darn thing that gets powdered or refined in some way!! This includes safe grains (e.g., quinoa, rice), nuts, beans, legumes, pulses, coffee, tea, powdered spices and others. This lesson was hard-learned for me. I have only recently found a few options through trial and error, but have still had to give up coffee, tea and soda.

    – Corn and rice bother a surprising number of celiacs. I base that only on my experience and anecdotal information from lots and lots of forum reading to help troubleshoot my issues. I can tolerate organic brown rice occasionally as long as I don’t overdo it. There are a lot of theories as to why this is the case. Some say contamination (brown rice is processed to become white rice), some say it’s the carbs feeding the bad microbes. I say it’s both, based on my own experiences. Also, corn has a form of gluten. It’s not supposed to cause any problems for celiacs, but this is also controversial. Corn definitely causes problems for me.

    – Sounds crazy, but those little stickers on produce? Yeah, I’ve read that the adhesive is sometimes formulated using gluten. I now cut off that piece of the fruit or vegetable to be safe.

    Systemic Issues

    – I have been on antibiotics my whole life (strep, sinus infections, etc.) so my intestinal flora is completely out of whack, as the wrong microbes are thriving, and it’s complicated, but this can make celiac disease a lot worse. The Specific Carbohydrate Diet is really tough, but it’s the first thing to really help me start feeling better because it’s starving the bad microbes and feeding the good ones, as well as helping to address my “leaky gut.” And it’s pretty darn nutritious, too. This also addresses the corn/rice issues.

    – Certain medications can weaken or inflame the gut, worsening the celiac reaction–you might want to ask your doctor about this. NSAIDS are the most common example. Other medications actually may use *wheat starch* as the binder to shape it into the pill form. Yep. :-|

    Lifestyle

    – Gluten from health and beauty really is a big deal. I resisted giving up my favorite products at first, but it really did help. And after calling some companies, I was able to keep using some products, surprisingly. Cutting this gluten source removed around 25% of my glutenings!

    – I know it can seem unrealistic to make your house 100% gluten free, but gluten to a celiac is as bad as peanuts to someone with a severe allergy. Yes, it really is that serious! Mental illness, non-Hodgkins lymphoma, additional auto-immune diseases–among many others. There are yummy gluten-free products that you can substitute for your family’s favorites–even if you’re abstaining from processed “gluten free” foods for one reason or another. Maybe you could talk them into a trial run?

    Reply
    1. 15.1

      The Gluten Dude

      All I can say is Wow! Jen. Not just for your phenomenal advice, but that you took the time to share your knowledge. Very, very cool.

      I can only hope Lynda is indeed following this page.

      Lynda…if you’re there, give us a shout out.

      Reply
    2. 15.2

      Dawn B

      Good morning Jen,

      Thank you for all this information.

      There were a couple of things I had not considered, Some we have already learned the hard way.

      I think my daughter may have some dairy issues as well. That is common for those newly diagnosed with Celiac Disease. We are testing that theory.

      I am not sure how my family would handle not being able to eat rice and corn. Ouch!

      I do agree items that are processed on equipment that also processes glutened items is a major issue for those with Celiac Disease.

      We are in the process of looking at colleges for my son and food is my biggest concern. We went on a tour last weekend to a school that boasted their gluten free options for students and it was extremely disappointing to say the least. So far the only school that truly had the gluten free dining down to a science is John Hopkins but that is a very expensive school bur impressive in so many ways!!

      Dude maybe you should start a blog entry on that subject. I need to add that my son wants to major in Electrical Engineering with a focus on Audio Technology Production. As we are learning not many schools offer this focus and the ones that do are expensive. Need to get those schloarship applications going and work on getting those grades maxed out. Yes grades matter as do SAT and ACT scores to not only get into the school of your choice to begin with, but also to qualify for some amazing scholarships. Ahh, I digress….

      Goodness, I do hope Lynda is following this blog entry. So much great information.

      Reply
  16. 16

    Jen

    I know some of these things seem a bit crazy, but every change I make seems to help. And it’s worth noting that rice and corn don’t seem to bother every celiac, but for anyone who is feeling sick and is interested in further troubleshooting their diet for answers, it might prove to be a helpful elimination. The same applies to fructose, soy and dairy–problems for some, but not for others. I’m personally fine with soy, but I know another celiac who can’t tolerate it at all.

    This whole experience has been a lesson in patience for me. Before celiac disease, I was pretty adventurous when it came to food–I loved trying all kinds of cuisines, and was a bit of a foodie. I also happen to be kind of shy so this has been a huge adjustment, as I feel like I’m being “high maintenance” about the dietary restrictions and tend to get a little embarrassed. I had also “toughed out” other celiac flare-ups (in hein sight) and two other major health issues before this debilitating flare-up so I thought that I just needed to toughen up–like the other times. But my “ah ha” moment was when I realized that I HAD to get better for my husband, family and friends–that I wasn’t doing them any favors by eating risky food and then getting sick for weeks…that not speaking up about my needs would hurt them more in the long run.

    I think what bothers me the most about this disease is that so many people who don’t have it think it’s a lifestyle CHOICE. So I’m trying my best to be a patient, friendly (but firm) advocate for the cause with each and every conversation about celiac disease that I have–whether it’s at the grocery store, a friend’s wedding or family events. And Gluten Dude’s blog gives me ideas for talking points!

    Reply
    1. 16.1

      The Gluten Dude

      Glad I can be of some help Jen :)

      I definitely felt a whole lot better when I gave up dairy and soy. But I’m at a point now where no matter what I eat, I feel like crap.

      Yep…I hate celiac disease.

      Reply
  17. 17

    Jen

    Dawn B, maybe you’ve already seen this, but wanted to share just in case. It’s a forum on celiaccentral.org about being GF in college:

    http://www.celiaccentral.org/college/

    And sorry you’re going through a bad celiac stretch, Gluten Dude.

    Reply
  18. 18

    Gluten-Free@Three

    I suggest looking at cross reactive foods, that is foods with similiar molecular structure that the antigliadin antibody binds tightly to. We know that antibody doesn’t have your best interest in mind and when you eliminate gluten, it will sometimes bind to other food that are similiar in nature and most likely stuff you’d least expect and really enjoy. Coffee, chocolate, eggs, milk, oats, rice, soy, cheese, flax, etc…

    Reply
  19. 19

    Julie

    I can’t have gluten free flour, spent a fortune for all this gluten free flour for my bread machine, and after eating a slice for 3 days, I was in full gluten mode. what’s up with that? is there a gluten test kit? Maybe the flour is not gluten free. I am so frustrated, was diagnosed 4 weeks ago, and have suffered for 30 years. A separate kitchen? really? utensils, thank God for gluten free wine. (I stopped all gluten on Dec. 9, 2011, b/c I did some research, and thought I had to do my own experiment, screw the dr.s that always told me I had IBS.

    So no grain at all? I’m 56 years of age, had symptoms in my 20’s, plus dermatitis herpetaformis in my 30’s was told I had shingles. Was positive for DH a few weeks ago, and being totally gluten free for 4 months? The symptoms do not stop at the GF level. No, I’m not eating any processed food. NONE.

    Reply
    1. 19.1

      The Gluten Dude

      So frustrating Julie…I know. Try your best to be patient.

      I too expected immediate results when I went gluten free. I read stories of how people felt better immediately. How long did it take me to notice a difference? Two years. And I still struggle. Almost every day.

      Hang in there and give yourself some time.

      Reply
    2. 19.2

      Dawn

      Julie,
      What brand is the GF Flour and what other ingredients are in the recipe for the bread you are making?
      Is your kitchen completely gluten free? If not it will be hard to tell where you are getting glutened.
      My daughter seems to be having issues with dairy. It is common for newly diagnosed Celiac patents to have issues with dairy. Try stopping that for a week as well and see if you feel any different. In fact you may want to stop corn, oats(even gf), and soy products as well then slowly add them back in to see if you can identify what is making you feel bad,
      There is nothing easy about keeping everything gluten free in your kitchen and way too easy to accidently gluten yourself when your kitchen is being used for both.
      Yes it is tough eating gluten free but seriously it is worth it.
      It is obvious that you are frustrated and mad that you have celiac disease, but Julie you can do this.
      My teenage son, daughter and husband were all diagnosed in the last 9 months. My husband who is your age, seems to be taking it the hardest and feeling damn sorry for himself. He often will eat things just because he does not want to make a big deal at a restaurant and especially if he is at a social event. Instead of not eating, he usually will eat anyway(he will probably see this post, he does subscribe to gluten dude). My teenagers seem to be taking it better because they know in the long run it is worth it, they feel better!
      I am gluten free too just to support them. If I can do it and do not need to surely you can when it will make you feel better and in the long run save your life.

      Reply
      1. 19.2.1

        The Gluten Dude

        Great feedback Dawn!

        And yes, I too felt better when I gave up dairy and soy. It can be absolutely overwhelming, especially at this stage of your diagnosis. Give yourself time, emotionally, to accept it.

        I promise you it gets easier.

        Reply
        1. 19.2.1.1

          Julie

          Thanks, I’ll just take the one day at a time approach. I had edamame yesterday, and it did not bother me. I know I can’t have soy sauce, but can I eat the soy beans? Plus 100% corn tortillas, that I make from masa flour does not bother me. trial and error, the error is a bugger.

          Reply
      2. 19.2.2

        Julie

        Thanks Dawn. I was actually doing really well until I made the gluten free bread and got sick. The brand name is Authentic Foods. The package says, “Manufactured in a gluten-free environment.” The recipe called for brown rice flour, garfava flour, cornstarch, potato starch, sorghum flour, quinoa flour. all from Authentic Foods. There is butter and low fat milk as well. Apple cider vinegar, light brown sugar, xanthan gum, gelatin, caraway seeds, yeast, salt. orange zest. eggs.

        Ok, I’ll go dairy free. My husband has been gone for 3 weeks and I had full rein in the kitchen. I have my own toaster. We put mostly all dishes in the dishwasher.

        I will not eat any gluten ever again, even if I go to a rest. I have a salad sometimes with no dressing.

        My husband was upset that we have to eat different meals, but I think he gets it now. That helps.

        Thanks again.

        Reply
        1. 19.2.2.1

          Dawn

          Hi Julie,
          I am not familiar with Authenic Foods, but that does not mean anything there are so many brands out there. If all the grains are ground in a GF environment they should be fine. It sounds like all the ingredients are good too. Try a dairy substitute for the milk and oil for the butter and see if you still feel bad.
          Also, there we found a GF soy sauce made by San-J. It comes in regular and low-sodium. Not sure what stores you have near you but both Publix and Kroger carry it.
          For salad dressing most restaurants have a oil and vinegar dressing of some kind. You just need to be sure there are no hidden sources of gluten or just ask for plain oil and vinegar on the side. I make Good Seasons Italian Dressing(the original) at home. It is GF. You can use what ever kind oil and vinegar you choose it is always good.
          I am slowly trying to cut out the junk GF stuff. Lunches are a challenge my daughter well not eat the GF bread even when it is fresh and from scratch. She is starving by the times she gets home from school.
          Good luck in your journey.

          Reply
          1. 19.2.2.1.1

            Julie

            Dawn, yes, when eating out, I have asked for vinegar and oil dressing, on occasion. There is a brand where I live called Boathouse, their dressings are gluten free and so is Annie’s. I am doing everything I can to avoid gluten. I live in an area where gluten free flour is a challenge, and I order it on amazon. I bought tamari sauce, it is gluten free but very salty. Don’t use it too often. There is a small health food store about 30 min away, but they are so expensive. That is one reason why I wanted to make my own bread, 8 bucks for a loaf of Udi’s. AND, I had a reaction to Udi’s! Go figure. I read a blog recently were this gal has grain once a week. Someone else said they could not eat any grain, (gluten-free). I did go shopping yesterday, and bought my own knives, cutting board, already have my own toaster. Thanks for your suggestions and support. I have had support from restaurants that I frequent, b/c I know the staff, they will go and talk to the chef, and I usually order the same thing every time, esp. when I did not have a reaction. Thanks again.

            Reply
    3. 19.3

      Luna

      Bread machine! Is it new? Or did you use it with gluten bread? If it’s not new, it’s glutening you. Those just cannot be cleaned well enough.

      And DEFINITELY get a gluten-free kitchen. Then you’ll know in short order whether or not it’s a cross-contamination issue.

      How does your blood work look?

      Reply
      1. 19.3.1

        Julie

        Luna, no it was not new. Realized this yesterday, duh! This is all new for me, found out only a month ago that I have celiac. However, if I put the pan and paddle in the dish washer, won’t that de-gluten it. I priced this same machine at Macy’s, it’s almost 200 bucks. This particular one has a gluten-free setting. My blood work was neg. My endoscopy was neg. Was off gluten for 10 weeks before I was tested, dr. said this might be the reason I was neg. I had the gene blood test done, I have both DQ2 and DQ8, and had a skin biopsy done; tested positive for dermatitis herpetiformis. Have had no other blood work done. I wish I had known that the endoscopy could be neg. after being off of gluten, b/c that was just horrible, I woke up when they were inserting the tube and the gag reflex was just awful. Plus, where I live, there are no doctors familiar with celiac, even my gastroenterologist, did not ask if I was gluten free. Plus, he only did 2 biopsy’s, and I’ve read at least 6 need to be done, I’m learning every day. You have to be in charge of your own health. My husband does not believe that you can’t wash off the gluten, ….he thinks if you put everything in the dishwasher it should wash it off. Ok, so what is the deal, how much gluten can one ingest. The FDA allows 20ppm for a company to say their food is gluten-free.

        Reply
        1. 19.3.1.1

          The Gluten Dude

          Julie…somehow you’ve got to find a doctor that knows what he/she is doing. Even if you need to travel outside of your area. Your health is too important.

          A few of your questions:

          – You need to be ON gluten for six weeks for an accurate test result.

          – If things go thru the dishwasher, that usually suffices. But please don’t share a bread machine or toaster or anything of the like. Way too much risk involved.

          – The FDA rule stinks. I think it’s because that amount is all they can test for, though don’t quote me on that.

          Take no risks. When in doubt, do without.

          Continued good luck.

          Reply
      2. 19.3.2

        Dawn

        Good catch Luna!
        Julie, as long as you are kitchen is not 100% gluten free there will be accidents. Dude this goes for you as well. You can not be watching what your family members are doing in your kitchen 100% of the time.
        Again, I am not the one who needs to worry about it, but the health of the rest of my family is more important than having a little gluten in my life. I am so confused as to why your family is not supporting you. Your home should be the one place you feel 100% safe that you will not be glutened. I do not think it is at all selfish to ask this of your family. It is not a choice you are making.
        Also, even though your doctor messed up on the testing it seems apparent that you do indeed have Celiac Disease. I do agree with Gluten Dude that you need to find a GI that is familiar with it. Unfortunately, that means going back on gluten for a while and getting retested the correct way. That will not be any fun for you but a necessary evil if you want to know for sure.

        Reply
        1. 19.3.2.1

          Julie

          Hey Dawn, thanks for the info, but no need to retest. The gene test showed I have both genes for celiac, and I had skin biopsy’s done on this rash on my leg, and it was positive for dermatitis herpetiformis which is linked to celiac disease. With the blood test, endoscopy, biopsy results, it cost me over $1500 with my insurance. Ok, now, can’t I de-gluten utensils and other kitchen items if they are put in the dishwasher? Unfortunately, there is a shortage of doctor’s where I live, and I’m going to try and get mine up to date about celiac. I am on an island out in the pacific. It is also very difficult to get across to most of my friends what having celiac means. Can drive me crazy. Friends will ask, can you have carrots? Can you eat fried chicken? I’m making spaghetti, can you have that? OMG. I do have to have a sense of humor, thank God for that!

          Reply
          1. 19.3.2.1.1

            Luna

            Utensils, except wood, soft plastic, cast iron, and non-stick pans, can be de-glutened in the dishwasher. They’re not really the worry in a shared kitchen. The worry is crumbs, airborne flour, someone forgetting and re-dipping a knife in the margarine or peanut butter after spreading it on bread. And washing dishes in the sink is also a problem if you have a shared sponge. Or there’s gluten in the water and it sticks to the plates. Or or or. It’s a crap-shoot, and it’s dangerous.

            Being what I thought was careful, I developed seizures related to magnesium malabsorption (damage in the area where it’s absorbed). I had Fibromyalgia, chronic pain from hell. I had chemical sensivities. I couldn’t sleep. But I didn’t have gastro symptoms, so I didn’t realize it was gluten causing my problems. When my husband was also diagnosed with Celiac and our house became completely gf, I got better. And by better, I mean “completely cured” unless I accidentally get glutened.

            Though I still have occasional seizures, even without gluten. Those will never go away. Think about that. I have lifelong seizures because my husband didn’t want to give up gluten in the house.

            Reply
          2. 19.3.2.1.2

            Dawn

            Julie,

            Agreed a sense of humor helps. I know for my teenagers it can be frustrating. especially when people get upset that they do not eat something they make for them. They just do not understand that no gluten is ok. Both have learned to eat before going to a social function and to bring some emergency snacks. Kind bars are life savers. I am happy it is not discouraging them to do things with friends or going places.
            It sounds like you are in a beautiful part of the world! Enjoy. Once you get the gluten free thing down it is not that bad. I really do not miss it. Believe it or not.

            Reply
        2. 19.3.2.2

          Luna

          Actually no. A positive DH biopsy is just as good. The only cause of DH is Celiac Disease. So at least there’s that!

          Reply
        3. 19.3.2.3

          Luna

          And thanks. :)

          The thing about breadmakers is that there are too many nooks and crannies. There’s just no way to completely clean them. Can’t be done.

          Reply
  20. 20

    Julie

    Thanks Gluten Dude for this post!

    Reply
  21. 21

    kate

    When you have a prescription filled, tell the pharmacist to use a clean, sanitized pill counting tray. The pharmacist that created and maintains glutenfreedrugs.com showed a photo of a typical pill counting tray at a recent Celiac Conference. It was coated in a fine powder from all the pills.

    Then when you pick up the prescription, ask again. I’ve had them double check with the pharmacist, find out it wasn’t done and had the script refilled on a clean tray right then and there.

    Good luck!

    Reply
  22. 22

    Krista Wendle

    You may want to check for other intolerances. I am also rice & egg intolerant. Even if you’re not intolerant, rice is good bet that may be causing some issues. As you may know, rice has “acceptable levels”, according to the FDA, of arsenic. I personally do not believe there are any acceptable levels of poison in our food. Give losing the rice a try & also watch for contamination via pots, pans, plates, silverware, make-up, lotions, especially supplements, etc.

    Reply

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