Related Articles

50 Comments

  1. 1

    Carol

    Great post! We are human, and it’s so important to keep moving forward no matter what happens. I love this series and I can’t wait to read more!

    Reply
    1. 1.1

      Gluten Dude

      Thanks Carol. 26 more to go.

      Reply
  2. 2

    Sue in Alberta

    Go easy, my friend. You’re still at the place of figuring out “how much is too much”. You’ll get to a place where it’s much more comfortable and you’re used to reading every label. There will still be times, though, when it’s grinding.
    At about the same time after my diagnosis as you are now, I ate some blackberry jam, had a nasty reaction, read the label to find out it was sweetened with wheat syrup. Who knew?! Accidents happen.
    Take care of yourself in the meantime and stop by this spot for visits. Everyone here gets how sick you can get by “just eating chili.”

    Reply
    1. 2.1
  3. 3

    thetxlady

    I think of this as a journey, not a disease. Since “cure” isn’t really possible it becomes a day to day management of symptoms & an adventure of finding new places its safe to go.
    I’ve been GF several years & constantly find myself challenged by “we swear its gluten free” sometimes with disasterous results. Stir fry, rice, protein drink, convention center claiming to “safely make thousands of special meals a year” umm yeah sick as a dog!
    Its a journey to find stuff you can eat, vigilance about changing suppliers & getting used to “the eye roll” when you ask for gluten free menus, products not placed in the bakery or next to wheat thins on regular shelves & days on the sofa feeling like crap.
    Benedryl is my constant companion,home meals are pretty boring, & don’t even get me started on dating.
    Things I do love: my local wendys franchisees now keep baked potatos ready at all times & don’t freak out at double stack no bun anymore (FYI good cheap eatin chopped up on potato). Chipotle has call ahead when I’m running late for a “gluten food meeting” & there are 5 udis restaurants in my town when I can’t live without fries & burger on a bun anymore. My heros 730 south resteraunt owned by a celiac treat my food like its the owners…special GF baguette, moving the crumb muncher with chicken nuggets another table away to prevent cross contamination, & slap yo momma good chicken cordon bleu.
    Take your wins where you can & learn from your mistakes, just like travel where “tires looked fine when we left & swear I changed the oil” stuff happens…its what you do about it that really shows who you are.

    Reply
    1. 3.1

      Gluten Dude

      “Take your wins where you can & learn from your mistakes…”

      I’m going to apply that to every facet of my life.

      Reply
  4. 4

    LighthouseCeliac

    Thank you for expressing what your struggle is. I am almost 11 months into my diagnosis and hang on every word. Your letter put into words so perfectly what my tears are about. I also miss the convince and ease not so much particular foods. I got very sick at a certified pizza restaurant and have been recovering for months. How stupid to think it would be safe, they explained their policies and I so wanted to feel some normal in my life. I don’t blame them but did kindly explain to the manager to warn it might not be safe enough for a sensitive Celiac. I am finally starting to gain again after losing almost 20 pounds. I keep track of my calories to make sure I get enough. Probiotics, VSL#3, have saved me. I need to learn more about enzymes. I made bars in cupcake wrappers, here is the recipe. All gluten free of course.
    1 cup peanut butter
    1/2 cup applesauce
    1 banana
    1/4 cup all purpose flour
    1/4 cup pistachio meal
    mix together well and divide into 12 cupcakes
    bake at 325 for 20-25 min.
    I figure they are 130 or so calories and have helped me to gain some. There is not much advice in gaining weight. I had a nutritionist who actually turned me down to treat because I would require to much of her time. I found her on the gluten summit informational site. I haven’t dared call anyone else, it was devastating at the time.

    Reply
    1. 4.1

      thetxlady

      Ummm all purpose flour is rat poison to all of us!! NEVER EVER product.

      For weight gain there are several gluten free protein powders out there. I’ve had good luck with body fortress whey protein chocolate (fair warning vanilla tastes like sweat socks & peanut butter chocolate like chocolate covered feet). Mix it with coconut milk, liquid yogurt or even ice cream if you need the calories.
      Getting ALL GLUTEN out of your diet…bars, soy sauce, flavorings is a must.

      Reply
      1. 4.1.1

        LighthouseCeliac

        Did you notice I said all gluten free ingredients. I order my flour from a certified gluten free store in Scottsdale, AZ called Gluten Free Creations. They are the only ones I trust and I use it only when I am better and very sparingly, is that bad? It is enriched rice flour, I need to gain and it is helping, maybe I should cut it out and just use more pistachio meal?

        Reply
      2. 4.1.2

        LighthouseCeliac

        Oh how I wish I could do dairy. It limits my diet so much. I try once in awhile and it goes right through. I don’t dare try it until the end of this forever imodium lifestyle tailspin episode. The probiotics worked great for 3 weeks, but maybe the rice flour is bugging me. I will cut that out.

        Reply
        1. 4.1.2.1

          IrishHeart

          Lighthouse celiac

          I saw that you said “all gluten free”,hon and assumed you meant the AP flour was also GF. ;) Maybe TX Lady did not see that.

          There is nothing wrong with using certified GF AP flours.
          Jules makes a good one.

          Instead of dairy , just sub coconut or almond milk.
          The weight gain will come, trust me.

          If you are having diarrhea (which I assume is why you are using Immodium?) use Culturelle dairy free. This particular probiotic has lactobaccillus GG. Clinically proven to resolve D.

          If a month’s trial of that does not stop the D, you may have any number of things going on. Many conditions cause D, not just gluten.

          Let us know how you make out.

          Reply
          1. 4.1.2.1.1

            LighthouseCeliac

            Thank you so much, I thought I had messed up again!! I have been on VSL#3 for 4 weeks now. It worked great for 3 weeks, now I have some cramps again. I stopped the Imodium for 2 days and shouldn’t have. I thought maybe it was the brown rice flour, these cookies are the first non whole foods I have had in months. I can’t seem to stop the weight loss, although I did see a bit of gain this morning until I had another episode. Two Doctors have mentioned Refractory Srue and think I should do the camera pill procedure. This thought has ignited my panic attacks and ativan is now a part of my day. It all has worn me out and I am afraid to eat. I keep a good diary and count every calorie. I get 1600 or so a day, 5’2″ and 109-111 lately, down from 128 in 11 months. I am 54 and suffered many years. Too many I think. So I am holed up at home and hardly go anywhere. I sound pathetic, but I am reaching out and trying to heal but mostly begging for prayers and courage.

            Reply
            1. GottaSki

              Hi Lighthouse!

              I have been where you are and can tell you it can get better. I was diagnosed with Celiac Disease five years ago and am still recovering from the damage that decades of undiagnosed celiac caused in my body.

              Lack of improvement while gf, increasing amounts of food intolerances, autoimmune flares from hell have all been part of my post celiac dx life.

              It is important to keep going to your doctors — if it has been a year since you removed gluten it is time for a follow up endoscopy — my endoscopic biopsies got worse my first year gf and I do not have Refractive Celiac Disease. If your celiac antibodies are not improving while gf, you may — again you need to work with the best doctors you can find with real celiac knowledge and experience.

              Hang in there and keep looking for answers.

              Hugs from the former ‘Human Amoeba’ : )

              -Lisa

              Reply
              1. LighthouseCeliac

                Thank you so much. In the middle of this storm it is so difficult to see any hope of feeling well ever again. You give me that hope. I have Doctors at the Mayo Clinic in Scottsdale AZ. I have found one locally that was at Mayo earlier in his career. He is the one who suggested the probiotics and they have really helped. They also think my original diagnosis of IBS is correct also and causing this latest battle. My antibodies were checked Dec. 26th one month after the restaurant fiasco. They were gone essentially so I thought no way refractory but I guess the immune system has memory and can still be attacking. The probiotics helped for 3 weeks and is now not as affective but still better most days with the help of imodium. So as awful as IBS can be I hope they say in 2 weeks when I go for a follow up that the refractory idea doesn’t make sense. Whenever I hear that word it sets off the panics and that doesn’t help anything. At first I was so glad to know and glad the cramps and bloating were gone. Then the gluten free pizza incident and I just feel overwhelmed. Thank you for encouragement, I need a boat load of it lately.

                Reply
                1. GottaSki

                  You are welcome.

                  Recovering from the damage caused in Celiac Disease, quite often – simply. takes. time. It’s a dance…some steps move you forward and some move you back.

                  It is smart to investigate continuing or changing symptoms, but try not to jump at the possibility of Refractory CD — I know it’s tough — even my celiac specialist thought I had it for some time — there are a multitude of reasons why some celiacs take a very long time to heal — the trick is finding patience while solving your own unique puzzle.

                  Hang in there :)

                  Reply
                  1. LighthouseCeliac

                    Thanks again, I need success stories to get me out of this hole. I have no appetite and force down everything. I only eat a few different things, that can’t be good. I have meat and sweet potatoes for lunch and dinner, it is so boring but any time I try new things my gut rebels. It requires more patience than I can muster.

                    Reply
          2. 4.1.2.1.2

            Hap

            Since you specially requested prayers and courage and I could not ignore your sincere plea, in my effort to encourage you, I can share with you that our Heavenly Father specifically answered my prayers to heal me 17 months ago tomorrow by helping me to identify that gluten was the culprit killing me and by helping me to understand all the things I need to do to get completely well. Now 17 months later and even though it has been a very difficult but greatly strengthening journey, I am getting healthier and stronger most days. I have little doubt that I would not be alive today if gluten had not been identified as the culprit.

            Your request for prayers and courage can be answered when you faithfully depend on our Great Physician for healing – not necessarily from Celiac Disease itself, though possible, but at least from the symptoms and their effects on your body. I understand all too well that some are healed and some are not because my Father-in-law died from pancreatic cancer within 7 months even though my Mom has thrived through many usually life terminating health issues during the last 20 years. So I have many strong opinions obtained through my personal life experiences. Although there are many applicable verses and many different possible human circumstances that can be endlessly discussed, I believe the following apply to your specific requests:

            1 Peter 3:12
            For the eyes of the Lord are on the righteous,
            And His ears are open to their prayers

            Psalm 31:23-24
            Oh, love the Lord, all you His saints! For the Lord preserves the faithful … Be of good courage and He shall strengthen your heart, all you who hope in the Lord.

            Matthew 21:22
            And whatever things you ask in prayer, believing, you will receive.

            These are powerful promises which our Great Physician has faithfully answered for my family. I can’t and don’t pretend to speak for everyone but I can testify about my own personal experiences during my 53 years, which no one can deny.

            My family will specifically pray for you in your journey with celiac disease and its effects on your life.

            Romans 8:31-39
            What then shall we say to these things? If God is for us, who can be against us? He who did not spare His own Son, but delivered Him up for us all, how shall He not with Him also freely give us all things? Who shall bring a charge against God’s elect? It is God who justifies. Who is he who condemns? It is Christ who died, and furthermore is also risen, who is even at the right hand of God, who also makes intercession for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? … Yet in all these things we are more than conquerors through Him who loved us. For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.

            1 John 4:18-19
            There is no fear in love; but perfect love casts out fear, because fear involves torment. But he who fears has not been made perfect in love. We love Him because He first loved us.

            I hope you can be “more than a conqueror” from this Easter weekend forward!

            Reply
            1. LighthouseCeliac

              Thank you so much. I am sobbing, I asked God to give me a sign. He was so quiet. Thank you for being open to receive this for me. I am humbled and eternally grateful. I will print this out and read it often.
              I will claim your prayers, mine are with you and your family also. You have shown a rare form of love for one of God’s children and I am so blessed. It was a dark day, you gave me hope for a better day.

              Reply
            2. Hap

              We are the children of an awesome God!
              Thank you for your prayers for my family – your prayers are powerful and greatly appreciated.

              There are so many wonderfully encouraging words to lift us up on dark days – I encourage you to read all of Psalm 145:1-21 tonight.

              Just a taste here:

              Psalm 145:18
              The Lord is near to all who call upon Him…

              I trust you will have a brighter day tomorrow!

              Reply
  5. 5

    Paula-momof8

    Oh Honey, we have ALL been there- Crying in frustration over this disease and how we missed an allergy warning on a label that made us sick for weeks It is a harsh reality of CD and it sucks!!! You are certainly not alone. Give yourself a break and do what you need to do to heal. When I get glutened these are some of the things that help me get over it faster. several tricks that I do
    1. first and foremost when I know I have been glutened I fast for the first day or so because food makes it 10x worse for me. I just drink liquids like coffee and carbonated water with lemon and water or iced tea
    2. I take advanced digestive enzyme by Rainbow Light
    3. I drink homemade bone broth with olive oil mixed or eat soups made with the broth for a few days- yeah I know that sounds disgusting but it helps me so much. I take a meat bone usually ham or beef and put it in my crockpot with water and let it simmer on low adding water back to it when I take some broth out. One bone will give me a week’s worth of broth
    4, I take something for the pain ie, ibuprofin or Tylenol
    5. red wine- I prefer white to red honesty but when I’ve been hit I make a point to drink red wine- it really does help your stomach.
    5. when I am out I and I need relief asap I stop at whole food and pick up a bottle of kombucha – the natural probiotics makes me feel better- I brew the stuff at home and don’t normally pay $4 for a bottle of it but when I am desperate I will. .
    5. I take extra probiotics- American Health dairy free
    6. I rest as much as possible doing only the basics
    6. and this one is new for me but it’s doing wonders for me. Drinking 2 tsp of Organic raw unfiltered apple cider vinegar with the mother like Bragg’s brand along with tsp of raw honey stirred into 8 ounces of water – with a bit of lemon juice.. the acid is good for stomach upset..do not use the regular distilled apple cider vinegar- it tastes like battery acid- Bragg’s is much milder and don’t drink it straight – mix it with water or juice. HTH .. Feel better.

    Reply
    1. 5.1

      thetxlady

      Check your pain killers!!! I’ve had the experience of taking generic (cheap) ibuprophen for celiac pain only to get bone burning pain because the generic was flour based. KNOW YOUR PILLS!! Throwing out kitchen stuff is a usual conversation but checking drugs & bathroom cabinets is too often over looked

      Reply
      1. 5.1.1

        Paula-momof8

        Oh I do!!. I read every label of everything that goes in my mouth or touches my skin. I am super sensitive and have t be on guard always.

        Reply
    2. 5.2

      Nicole

      Wow, your post is the first time I heard someone else describe what I do after getting gluten in me. It’s not exact but if I don’t do a liquid diet for the first week, I will suffer for 2 weeks. One good thing I found is pumpkin in the can. It has a lot of nutrition and easy on digestion. And I also do the kombucha. :).

      Reply
      1. 5.2.1

        Paula-momof8

        I quickly learned that if I have been glutened the best way for me to handle it is give my stomach a break and do liquids and soups only at least for the first few days- it lessens the symptoms dramatically.

        Reply
  6. 6

    Alysa (InspiredRD)

    I have been there too! Crying over popcorn. http://inspiredrd.com/2012/10/what-celiac-disease-is-really-like.html

    Just know you’re not alone. Don’t beat yourself up. It happens to all of us. HUGS HUGS HUGS.

    Reply
    1. 6.1

      Gluten Dude

      If you all have not read Alysa’s post (see the link in her comment), please do so. Such a great read.

      Reply
  7. 7

    Gayle Wagler

    MAKE YOU OWN CHILI… I know it is NOT about the Chili but in a way It is for safety and convenience…..Chili is the easiest meal to make and it freezes very well. My friends and Family love this simple recipe.

    Brown 1 1/2 lbs ground chuck along with onion (suction fat)
    Add:
    1 large can of Tomato sauce
    1 large can of crushed Tomatoes 2 16oz cans of light red kidney beans (drained)
    1/2 – 1 cup water
    Few dashes of crushed red pepper flakes or cayenne pepper to taste
    Cover top of Chili with Mexene Chili Powder (in with seasonings)
    Simmer & Stir. Ready in thirty minutes
    Cool & divide into individual containers & freeze for convenience.

    Reply
  8. 8

    KV

    That’s nothing! At my parents’ house over the Christmas holidays, I spent 3 hours making the most amazing eggplant parmesan only to find that I had for some reason assumed Rudi’s bread was gluten free and neglected to read the label that specifically said “whole wheat” because I was so busy studying the ingredients in every other item I bought. Three hours down the drain, an amazing meal that I could not eat, and to top it all off, I got sick because I was sampling as I cooked.

    There was crying in Celiac that night!

    We all make mistakes. Do the best you can, and learn from your mistakes! :)

    Reply
    1. 8.1

      John

      Yeah, have to be careful with Rudi’s. They brand their goods under mutually exclusive GF & organic categories and I find the respective packagings are rather similar until you take a closer look.

      Several months ago a local grocer was sampling some Rudi’s breads, at which time I knew little of them (esp the GF/org thing, heck I might have even conflated them with Udi’s back then). Turns out only org varieties were sampled and the person at the booth seemed off her game about this. I saw nothing on the package boldly trumpeting GF as pretty much all GF breads do — HUGE red flag — so I checked the ingredients, sure enough, wheat.

      I averted the problem, and I know most GF folks will also police themselves quite rigourously, but as you say we all mistakes from time to time. I couldn’t help but wonder if others before me weren’t as lucky so I made sure she was clear about it for the next person.

      Reply
  9. 9

    Kimberly Kuehl

    It’s so hard, it is. I too have been moping? around, dropping tears as I ate at restaurant last week. Gluten free but didn’t work out. I cried when one of my friends had gluten free dessert wrapped for me from same restaurant, when I was alone, of course. You are doing so well at 3 months, honestly. You will cry again but now you will mend. Many many good days ahead. I agree with making chili, it’s soooooooo good, and easy. I do not enjoy cooking but have made some good stuff, brag brag. The event, as I call them is over, can’t be undone so cry it out and focus on all good. Keep talking, communicating, sharing your feelings, events, etc…..Gluten dude has helped me in so many ways. Soon you will laugh again! Kim Kuehl

    Reply
  10. 10

    IrishHeart

    Dry those tears. It’s going to be okay! ((hugs))

    Click on my name and it will take you to a newbie 101 thread.

    and for good measure, here’s another chili recipe! (don’t eat stuff out of a can when you can whip this up easily.)

    If you need anything else, you just ask.

    Turkey Chili—fast, easy, delicious and full of protein and fiber. Takes @ 30 minutes start to finish.
    Ingredients:
    1 tbsp olive oil
    1 large onion, finely chopped
    1 red bell pepper, seeded and chopped
    1 stick of celery, chopped
    2 garlic cloves, minced
    3/4 pound fat-free ground turkey
    2 tbsp chili powder
    2 tsp ground cumin
    1/2 tsp oregano
    1/2 tsp ground coriander (if you don’t have this—skip it)
    1 14 1/2-ounce can crushed tomatoes
    1 8-ounce can tomato sauce, no salt added
    1 15-ounce can black beans, rinsed and drained
    4 tbsp fat-free sour cream (optional) for dolloping on top
    4 tbsp fresh chopped cilantro to sprinkle in at the end.
    Corn chips on the side
    It can be served over rice, too!
    Preparation:
    Heat oil in a LARGE pot or Dutch oven. Add onion, celery, chopped pepper and garlic. Cook for 5 minutes or until onions are translucent. Crumble the turkey into the pan, breaking it apart with a wooden spoon. Cook for about 5 minutes or until no longer pink. Stir in chili powder, cumin, coriander and oregano. Add in tomatoes and tomato sauce, and simmer for 10 minutes, stirring occasionally. Add beans, mix well and cook on LOW heat for a further 5-10 minutes. Sprinkle in some chopped fresh cilantro.
    Ladle into bowls. (Add a dollop of fat-free sour cream or yogurt on top if you tolerate dairy)

    Every day is a healing day. Chin up, now! ;)

    Reply
  11. 11

    Rachael

    I think we need a movie or rather a documentary with scenes from all of our lives. Your chili experience and all the stress and fallout that follows, is repeated in households all over the Celiac world. It feels so isolating but PLEASE know that you aren’t alone!

    Today I am burdened with my 14 year old daughters symptoms that have led to 3 days out of school. The aches and pains and migraine and brain fog that all really get in the way of being a productive freshman. Then there is the stress of making up all the work and just getting to a point where she can feel good. It feels unfair and it feels awful and as much as you want to be able to snap your fingers and have it all disappear, you can’t.

    When times are tough I typically lower my maturity level, turn up the radio, have a good cry and then a really good belly laugh. Psychotic? Some would say yes but it works here at the 3/5 Celiac household. Before you know it, you will be cracking jokes about the chili nightmare. You are incredibly normal even if it doesn’t feel like it. Best of luck to you and lots of virtual hugs!

    Reply
    1. 11.1

      LighthouseCeliac

      A documentary is a fabulous idea, what better way to get the word out for suffering people to get tested.

      Reply
  12. 12

    margaret

    You are not alone. I am into the fourth year post-diagnosis and still have crying jags at times – mostly out of frustration with myself (WHY didn’t I read labels more carefully? WHY didn’t I ask about every ingredient in a restaurant meal? Etc. Etc.) This is not a good disease for perfectionists or control freaks but in the end you have to accept the fact that you will (on occasion) make a mistake. As everyone has been saying here: cut yourself some slack.
    (By the way, the post on how to deal with being glutened was really helpful. I am – still – trying to figure out what works best and these were really helpful ideas (two months post-diagnosis I asked a nutritionist about this and she said, “oh just go on eating a normal, healthy diet if you get glutened”. No, no, no (at least not for me).
    Keep courage!

    Reply
  13. 13

    Catherine N

    Oh I hear you. I’ve gotten glutened from TEA. Herbal tea. There is so much stuff to check, always, everything. I was at Costco yesterday, and they had hemp hearts, but no mention of g-f. I called the company, and a very nice lady answered the phone, and said “well, they are naturally gluten free, and we don’t process any gluten ingredients in our facility, BUT there is a chance that gluten could be in them because of harvesting, and adjoining fields having wheat or barley or rye”. I thanked her, suggested that then they might want to invest in testing their product, since it was so close to being really potentially safe.
    And I hear the above commenter on gluten in painkiller. Target seems to have changed up their painkiller, but I found one that was marked gluten-free (fyi, Bayer is not). I think that is the most frustrating thing for me, is reading every single label, every single time, even with things you don’t think should matter.

    Anyway, we’ve all been there. I’ve gotten glutened and not been able to figure out the culprit at all. Another step forward, another brand bites the dust. (I just hate trying to cook gluten-free for one) It is a lifelong adjustment. We’re here with you!

    Reply
  14. 14

    Michelle

    I was there just last night as a matter of fact! All I wanted was to buy some darned mouthwash… 20 minutes later I left the mouth was aisle looking like a raving lunatic, cursing…mostly under my breath, with tears brimming. Pretty much they were tears of anger and frustration, but tears none-the-less!

    Seriously….mouthwash!

    And I’m almost 5 years post diagnosis! My mood has improved today…but I still have tartar build up and, what I am convinced is gingivitis that I feel growing in my gums! LOL…ok, not really but the sarcasm font has yet to be invented!

    We’ve all been to temper tantrum-ville at one point or another and I’m sure we’ll all be there again!Next time you visit, stio by and pull up a seat! I’ll be sure to save you some (insert favorite alcohol here…tequila for me)!!!

    Thanks!!

    Reply
    1. 14.1

      Gail

      Michelle, something you might do is just use salt water for mouthwash. I make a sole (pronounced solay) solution which is water that is fully saturated with a natural salt. Just google salt sole and you will find websites with lots of info. It’s beneficial to drink some everyday but I also keep a bottle to use as mouthwash – it’s all natural, no alcohol, no chemicals, no colour. The crucial point point is NATURAL salt not processed white table salt. It should be made with Himalayan sea salt. Another thing is “oil pulling”. Sounds weird but I swear it works. It is an ancient Ayurvadic ritual that reduces bacteria, plaque and infection in the mouth. Basically you swish oil in your mouth for about 20 mins. first thing in the morning and then spit it out, along with all the toxins and bacteria. Just google oil pulling and you should find lots of info.

      Reply
  15. 15

    IrishHeart

    Lighthouse Celiac

    Many of us are success stories, hon. Gotta Ski, Gemini (who may still post if she sees this) and I were all
    extremely ill, dying a slow death at diagnosis. Yet, here we are.
    Living proof that every day is a healing day.

    Refractory sprue is rare. It is more likely you have some other food intolerances or perhaps the cc hit really threw you. If you can eat a few bites every few hours, you can keep your strength up.

    Please use the probiotics if you can. “IBS” is a catch-all phrase and not really a diagnosis, but a collection of symptoms. The question is “why is that bowel irritable?” If you are not feeling well after 11 months of a strict GF diet, something is causing it. Cross contamination is always the first suspect.

    One question: Do you share a house with gluten eaters?

    Reply
    1. 15.1

      LighthouseCeliac

      Thanks, if you all can go through this maybe my body will start absorbing again. This just got me down so far mentally dealing with it.
      It is just my husband and me in the house, he is so supportive. We get zero gluten foods for me and he gets gluten free products. I often wonder how much more careful we should be. We cook meals separately and have replaced nearly everything in the kitchen. I kept my pans and silverware because stainless is supposed to be okay. My baking dishes are glass, I use those to bake my meats in, I don’t know maybe I should try replacing all that. Everything else is new.
      No one gets in with food of any kind, no one can touch my food in case they have gluten containing lotion on their hands.
      Do you have any other suggestions?
      I am going to ask about enzymes at my appt. in 2 weeks. I want and need to eat more things. Lettuce never works, and I miss cheese and beans and rice!

      Reply
      1. 15.1.1

        IrishHeart

        Doesn’t sound as if your cooking utensils and glass bakeware are the problem then.

        If you are only eating whole foods: meats,poultry, rice, vegs, fruits, nuts, eggs, then I can’t see how you can be CCed.

        If I were you, I’d go back to see the GI doctor and ask what’s going on. IMHO You should be checked for other inflammatory bowel diseases like Crohn’s or possible microscopic colitis, or c.diff.

        Any number of things can occur in conjunction with CD and
        you should have a complete CBC, CMP and tests for folate, B-12 and D deficiencies.

        Reply
        1. 15.1.1.1

          LighthouseCeliac

          I have had all those tests several times in 11 months. Not the folate, B and D though I don’t think anyways. The only thing was campylobacter once was indecisive so they did it again and it was okay. If celiac includes chronic diarrhea for me I can control it some with meds but it is a restricted way to live and constant imodium makes me nervous. I went off statins too in case it was causing the weight loss. Maybe I will taper off soon but I am too thin and weak and gaining seems impossible. I have hashimotos too but it has never caused any problems?

          Reply
          1. 15.1.1.1.1

            IrishHeart

            But that’s just it, hon. Treated Celiac –celiac that is not active because it is controlled by diet–does not include chronic diarrhea. That should have stopped by now. Chronic D means
            something is not right: another food intolerance, some GI tract issue, a side effect from medications, perhaps. Usually, Hashi’s involves chronic constipation. HYPERthyroidism may cause D and weight loss. Anxiety, insomnia, the “jitters”.Have you had the TSH checked lately? Are you sure it’s hashi’s?
            Sometimes, people are DXed with that and later find out, it was just the celiac causing a sluggish thyroid and then, after being GF, the thyroid functions normally, and guess what? now, you’re on thyroid meds that you do not need them and you’ve gone hyper. (this happened to me as well as several others I know from celiac.com) I was on 12 meds for various “diagnoses and syndromes”…and now, I take absolutely nothing. All those years of symptom-treating when the underlying cause was the celiac.
            I was your age as DX, so I can relate to your plight.

            Just offering some thoughts to help you sort it out.

            Reply
            1. GottaSki

              I agree with Irish. After someone has been completely gluten free for at least six months it is time to make sure there are not other issues.

              Were you positive for Thyroid Antibodies when you were diagnosed with Hasimoto’s Thyroiditis? If they haven’t been checked since removing gluten, I would test them along with your Free T3 and Free T4 and TSH. The TSH is really the worst indicator of what is going on with your thyroid, yet most docs use this singular pituitary (not thyroid) test to monitor folks with thyroid disorders.

              You should have a complete workup for inflammation, thyroid, all nutrients, CMP and CBC. They may all come back normal, but that is important information too — even though frustrating to hear.

              Hang in there : )

              Reply
            2. LighthouseCeliac

              My TSH in January was 3.71, T4 was .09. Thyroperoxidase (TPO) was 95.2 over 4 years ago. I have not been on any thyroid meds. I went off my statin cold turkey almost 2 weeks ago for fear it was not agreeing with me. In December my IGA was less than 1.2. My B12 last August was 781, Folate was 14.2.
              I have had all colon and stomach and duodenal biopsys and all showed nothing. So the camera test has been suggested next, or cat scans. Both make me very nervous. With the imodium and probiotics the diarrhea is controlled. I don’t know what else to eat besides meat to gain, I was not much of a meat eater at all before diagnosis.
              My husband is an RN and thinks that this new way of eating has caused my weight loss and that my body will settle to a certain weight. Keeping track of my calories has helped stabilizing the weight loss. It makes me extremely scared when my guts are active and very soft and narrow. If I could get the panics under control I could maybe see that I am getting better. Can you both eat gluten free products? Beans and rice and corn and anything processed is just not working. It is 11 months on Monday and many things are better. I just need so many questions answered. Like why has the probiotics helped so much and will I always need them. Should I be on supplements. Also would enzymes help and would I always have to take them.
              Thank you IrishHeart and Gottaski

              Reply
              1. GottaSki

                My list of safe foods is extremely short…takes too long to type out…so if you are interested…check out my profile info on another site:

                http://www.celiac.com/gluten-free/user/28013-gottaski/

                Reply
                1. LighthouseCeliac

                  Oh my you have been through so much. I am going to have to look up some of the acronyms that you had on that site. I have so much to learn, if only we each came with an owners manual. This figuring it out for yourself stuff is a huge hit and miss. I feel like I need a doctor every minute to get answers, these many tests and no answers and short visits and Doctors that are booked out forever, it is all too much.
                  Thanks again.

                  Reply
                  1. GottaSki

                    Anytime…most of us that went undiagnosed or misdiagnosed for many years don’t get off with simply removing gluten.

                    Hang in there and keep looking for answers…doctors are an important tool, but you need a few more in your toolbox if you have complications from undiagnosed celiac disease.

                    -Lisa

                    Reply
  16. 16

    Hap

    Hello again Lighthouse!

    You found some good caring friends and great advice with Irish Heart and GottaSki!

    I noticed your comment regarding being nervous about CAT scans and I just wanted to add that I received my “kneck to knees” CAT scans results a few weeks ago. I would encourage you not to be nervous about CAT scans if your Dr feels it is necessary for a proper diagnosis. Considering all of the other tests you’ve already had, the CAT Scans will probably be a piece of gluten free cake.

    My CAT results were very comforting and enlightening for me. I no longer have cancer but it was interesting to note that I still have some reactive lymph nodes, getting better – not worse, in my “small bowel mesentery”, which attaches the small bowel to the abdominal wall and is a location for lymphoma sometimes found in undiagnosed celiacs. These results were 16 months after me first being “gluten free” and helped explain some of my residual pains and some minor blood work issues, but my doctor and radiologist were not concerned and now neither am I as long as I keep feeling better.

    Since you said you like hearing success stories for encouragement, my Mom’s story is about as encouraging as sucess stories come. Mom is now 77 and she is also 5’2″. At Mom’s sickest point in 1997, she only weighed 82 lbs. She was happily back up to 131 gluten free pounds earlier this week!

    As I’ve said in earlier comments since February, in April 1994 Mom endured 3 brain anuerisms, 2 brain surgeries and since 1997 Mom has endured Stage 4, B Cell, Mantle Cell, NHLymphoma three different times including lung tumors this last time in 2013. In April 2013, Mom’s bone biopsy was 89% cancer cells and she is not only still kicking, she has actually gained 13 pounds since “going gluten free” in Nov 2013.

    Mom’s had many CAT scans and PET scans since 1997 and another one coming up on May 12. These CAT scans were very helpful for us and one of the easiest out of all procedures experienced. We’re hoping this next CAT scan will reveal all of her cancer is gone again as a direct result of “no more gluten” since November after the chemo stopped working last year! It has been a long arduous 20 yr journey but with many wonderful memories. We only wish we knew about not eating gluten long ago. Mom is expecting to attend my daughter’s wedding on my Mom and Dad’s 55th wedding anniversary on 12/13/14 @ 1500 hours, which did not look likely last year but currently looks pretty probable.

    I trust you and your husband will keep on searching and conquering your circumstances along the way. Always good to lean on Irish Heart and Gottaski during your journey!

    Reply
    1. 16.1

      LighthouseCeliac

      Thanks again Hap. You always seem to have the perfect words for me. I don’t feel so alone now with all three of you.

      Reply
      1. 16.1.1

        Hap

        Lighthouse

        I just reread your first comment about the bars you made in cupcake wrappers and thought I might should say something about the “1/4 cup pistachio meal” since you are in search mode.

        Pistachios come from the same plant family as poison ivy plants and if the nuts are not properly harvested and cleaned some of the “poisonous oil” can remain on the nut (and maybe in the meal), which could cause a completely different problem than certified gluten free flour.

        As a child, poison ivy was the only thing to which I ever had an allergic reaction. My first bad reactions as an adult came after my wife and I were married and every year for Christmas my motherinlaw would send fresh pistachios to us. I had never eaten them before we married. Every year for 3 years, I would get terrible hives on my hands and feet until the 3rd year it was so bad I had to go to ER when my mouth and lungs were affected. Finally realized it was the pistachios and stopped eating them. No more problems for 4 yrs until the undiagnosed gluten issues started 4 yrs later and went on for 20 more yrs until I got so sick & we realized it was also gluten in 2012. As much as I liked them, I haven’t had a pistachio in 25 yrs and never will again.

        Just a thought in case your continuing problems are related to the pistachio meal. Like most everyone else, I analyze everything I put in my mouth now. The current status of your insides could make you much more sensitive now even if you never had a problem before. Nothing like eating poison ivy for me.

        Also like you, I lived on only fresh vegetables and sweet potatoes for many months while my insides healed and my diet now is very healthy with some variety.

        As Mrs Gluten Dude has said, my wife and I still mourn the convenience of eating whatever and wherever we wanted until my cancer and celiac Dx. Happier Days are ahead now though!!!

        P.S. We just celebrated my motherinlaw’s 81st birthday yesterday and even though I still love her, I can hardly wait to remind her in the morning about trying to kill me 28 yrs ago!

        Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2019 Gluten Dude: The Naked Truth About Living Gluten Free | Legal Stuff | Need an Affordable Website?