Four years gluten-free and still struggling…

frustration

So what to make of this thing called celiac? I honestly don’t know anymore. My stomach hurts at this very moment as much as it ever has before. Why now? What did I do? How can I make it stop?

Khaaaaaaaaaaan!

I can retrace my steps today. Nothing out of the ordinary. Kind Bar, coffee, eggs, Udi’s bagel, blah, blah, blah. The only thing “different” I ate today was a homemade fruit smoothie. What…I gotta give up fruit now too?

There is something called “refractory celiac disease”. Rather than me bore you to tears with a definition, I’ll let the Celiac Disease Center do it.

“When all other causes for failure to improve on a gluten-free diet have been excluded, refractory celiac disease (sometimes called refractory sprue) should be considered. Refractory celiac disease is defined as symptoms and small intestinal inflammation that persist after one year on a strict gluten-free diet. Some patients never respond to a gluten-free diet, others initially responded but have a recurrence of symptoms and intestinal inflammation. Refractory sprue appears to be typical of adults, especially middle-aged or elderly people, and is never encountered in the pediatric population.”

So what does this mean if I have it? In a nutshell…I’m screwed. Time to head back to the GI and have him look down my pipes. Fun times indeed.

If anybody has any advice or similar stories to share, I am all ears.

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21 thoughts on “Four years gluten-free and still struggling…”

  1. Wow! I’m not sure if that makes me feel better or worse. I had been clinging to the idea {urban myth?} that I’d feel better after a year off gluten, but one would think if that were true I should be gradually improving, not declining. As for me, if I keep removing offending foods from my diet at my current rate, in 5 years there will be nothing left for me to eat. Maybe then my stomach pain will stop.

    1. The Gluten Dude

      Hi Laura. I would’ve responded sooner, but I just woke up from a 3 hour afternoon nap, one of the many wonderful side effects of celiac disease. Besides gluten, I’ve given up dairy and soy. Now, it is being suggested to me that I give up eggs and nuts. Pretty soon, I’ll be on a strict diet of foods that haven’t been invented yet. Keep the faith though. I will let you know what my GI says when I go back for another endoscopy.

  2. Miss Dee Meanor

    Here’s what I learned on my Celiac/IBS (we call it “It’s BullShit” )journey. I kept waiting to feel better after going gluten-free. Unfortunately, the only difference I would see came if I accidently became glutened in which case I felt so much worse I figured dying was the only way to feel better. Finally I figured that many “safe” foods were just too hard on my battered small intestine. Nuts in LaraBars and Kind bars, apples, raw onions, most dairy were huge offenders. After a qhile it seemed everything I ate became an offender. I was so used to a pain in my upper left rib cage that it just became a reflex to eat/brace for the pain. This past November 7 I had an attack one night with pain radiating through my back and 102 fever. The only thing I had eaten that day was potato chips and a small piece of cube steak prepared by Mr. Meanor.

    To make a long story short, I had a gallstone lodged in a bile duct. The sonogram afterward didn’t show the stone, but showed sludge. I didn’t know whether to remove it or not. In February the decision was made to remove it anyway. That’s when they found out I had passed a gallstone through the main bile duct. In the course of looking at my gallbladder they discovered lesions on my liver (benign, Thank God.).

    Soooo..I find out that Celiac suffers almost always eventually have gallbadder disfunction and liver problems.(Goodbye, wine tastings. I miss you!) When it seems that ALL food has become a problem and you don’t feel better no matter what you eat, look for something else. Anything food with fat stimulated my gallbladder which created the pain. This pain can occur anywhere from your chest to your abdomen because it is a referred pain and depends on which nerves are being offended. I was so used to pain that I ignored the warning signs including a yellowing of the whites of my eyes.

    My first meal after having the gallbladder removed I unconsciously braced for the pain. It didn’t come. That said, gluten, dairy, raw onions, and raw apples still kick my butt, but I am healing. I rarely have any alcohol anymore to make my liver happy. I’m back to concentrating on primarily gluten instead of hating all food. Now that I’ve healed I can tolerate nuts again, but they were just too hard to digest when I was in a mess. Hang in there and listen to your body. If it becomes where ALL foods seem to hurt, then maybe it’s another organ that has suffered due to years of undiagnosed Celiac.

    Sorry for the novel. I really should get to work.;) Sheesh..math again.

    1. The Gluten Dude

      First of all, I love your name!

      I appreciate your story. Last night, after dinner, I asked Mrs. Dude if her stomach hurt after every meal like mine does. Of course it did not. No matter what I eat, I seem to be in discomfort most of the time. A pretty crappy way to thru life (better than fat, drunk and stupid though – Animal House reference.).

      I hope to head back to my GI in the coming weeks and see what is going on.

      1. This may sound hippy-dippy, but have you tried dealing with a naturopath and/or acupuncture?

        For less than a year, my roommate and I are both gluten free–I am a latent celiac (blood tests are positive with none of the GI tract damage) and my roomie is only very, very gluten sensitive–and while my major symptoms are joint pain, headaches, and heartburn, she has had major issues for nearly 20 years with spending at least 2-4 hours in the bathroom daily.

        In the last couple years, her health has declined and her weight shot up and her test results for various things — including fat deposits on her liver when she is a non-drinking, 15+ year vegetarian — were increasingly out of whack. As a shot in the dark, she decided to go see an acupuncturist to try and holistically help with her issues.

        Putting the pieces all together in November 2011, the acupuncturist recommended that she try going gluten free and BOOM! She was far from better, but hugely improved within a month. As a result, she started seeing a naturopath in the same practice and the two are able to coordinate her treatments more effectively. Since then my roomie has been taken also off of rice, corn, dairy, and having to watch her blood sugars (i.e. limiting potato).

        The gluten was her only step down; it was gluten free and then everything else free. It was hard in the beginning but she honestly does not miss it and once she got the hang of it, recipes have been pretty easy.

        Within six months, her liver results and all of her other tests have come back well within the normal range and she has lost 60 lbs.

        It’s not an instant fix, but it may help your refractory symptoms. Or at least it may be worth a shot if you can do it.

        1. That’s amazing. I’m currently on day 9 of the Whole30 plan which eliminates all of those things you mentioned…so we’ll see.

          And believe me, I have as much faith (if not more) in a Naturopath than I do the medical community.

    2. Thank you for posting that. I am to that point! They keep removing foods from my diet first gluten, then dairy now eggs. But I feel nauseous after eating anything. I get better for about 2 weeks when I remove a food then feel worse again and they remove something else. My gallbladder tested fine a year ago and I have been to GI doctors too. However my regular doc just said it’s time to see a surgeon about my gallbladder. I have pain in my upper back and under my right ribs. I have read so much and wasn’t sure if I should just keep toughing it out. Your post helped me know I am not alone! This has been over a year long battle for me!

      1. Miss Dee Meanor

        LP, I never suspected my gallbladder and initially tried to tie it to accidental glutening or on a certain food group. Then I realized almost all food hurt. I was eating so little food it’s a wonder I was alive. I had a HIDA scan done which showed my gall bladder functioned fine (in spite of the sludge), but the pain after eating persisted. I got opinions from three different physicians including a close physician friend on whether or not to have it removed. They all said they felt it should go because of the sludge. (This was before the surgery showed scar tissue in the duct that I proved I had actually passed a stone.) My physician friend said he never had a patient come back and say, “I wish I had my gallbladder back.” Best decision I ever made! Now that I am a couple of years out I can pretty much eat anything I want as long as it is gluten-free. Bacon is back!

  3. Melissa Doughty

    I am so glad I found these comments. My daughter is only 17 and has been suffering for several years now and has been gluten and lactose free for several months. It seemed we had found the answer but for the last few weeks the daily constant pain is back no matter what she eats. She is Non-Celiac gluten intolerant and is very good about her diet. I will probably have to take her back to her GI but so far that hasn’t done any good. All tests come back negative. I will probably have to take her to Boston to get an answer. So far here in Maine we aren’t having any luck with the help she needs.

    1. The Gluten Dude

      A good GI is vital Melissa, but so is patience. It took me two years to really begin to feel better. I expected immediate results and was frustrated beyond belief. Hang in there. It gets better.

  4. Hi

    My name is Andrea and I was diagnosed with Celiac 3 weeks ago. I went on a G free diet the moment I found out, converted my kitchen and eliminated all my old baking sheets and toaster.

    I have noticed a huge change in my digestion and I am feeling great in that regard. I have however began to feel worse in other ways. My costcocondritis is worse then before, I have a strange tingling feeling in my left hand, my heart burn is worse then ever, my concentration is terrible and I am achy boned.

    Is it normal to feel worse before you feel better?

    Please any words of wisdom would be appreciated.

    Andrea

    1. The Gluten Dude

      Everyone is different Andrea. Some people feel great right away. It took me a few years to feel any relief.

      I would say be patient and see how you feel in a few months. Your body has been thru hell and it will take time to get everything balanced out again.

      Keep me posted.

      GD

  5. Hi! I came across this site, and must say I am at my wits end in frustration. I have been through every test (endoscopy, ultrasound, colonoscopy, etc) attempting to solve why I suffer from chronic abdominal pain. My celiac tests were negative, and the only result was an irritated small bowel. Some blood tests revealed I was vitamin deficient in A and D, so my GI suggested I try a gluten and lactose free diet. After two weeks, I am still waking up every morning with pain. I am trying to be patient, but I am scared and worried that I am continuing to harm my body. Is there any advice out there to keep me motivated and positive about this experience…. 🙁

  6. Hey to anyone who wants advice, I was diagnosed 2 yrs. ago, am 47 yr. old woman, DO Not trust standard Doctor testing for Celiac or sensitivity, these tests are never fail proof, and you must order the true Celiac test online from Dr. Peter Osborne. Look him up, he is an expert and his wisdom can help you more than anyone I have seen. There are MANY foods and terms you must be familiar with that hide gluten. It is so hard and I still suffer alot! But I have seen Dr. Peter Osborne and listened to him as careful as possible. Alot of times it is my fault when I am in pain, because I cheat on the diet.I need to be more disciplined about my food choices. I wish everyone healing, Please remember you are your best advocate and you have to stay on top of latest Celiac news and true information. Try Dr. Osborne also on YouTube. God bless. Melissa C.

  7. Hi. I I am not nearly as far down the road as you but can definitely relate to your experiences. I was only diagnosed 6 months ago and even being a Dietitian, I am struggling big time with trying to figure out what is causing my abdominal pain and weight loss that have seemed to pop up here in the last 1-2months. Before diagnosis, I was 125. It stayed at 125 for the first 4 months and now within the last 2 months, down to 120,5’7. So not too good.

    Anyway, I wanted to mention that sometimes fructose digestion can be a problem that is linked with celiac. Just noticed that you had a fruit smoothie that you mentioned was ‘different’ which probably had a high concentration of fructose in it. Just thought I would throw it out there!

  8. Hi! I’m day 7 gluten free. I have suffered with severe joint pain all over my body. Every test has been negative so my doc did some genetic testing and found the celiac gene.
    Hope it works, nothing else has. Just wondering how long it will take!!

  9. Have you ever heard of the virgin diet. It’s supposed to eliminate 7 trouble foods that people most often have intolerances too and those include gluten, dairy, eggs, soy, peanuts, corn, and sugar. It’s a tough diet but when adding back foods, my friend found she was sensitive to 3 of the 7 and not just 1 that was causing stomach trouble. Hope that helps.

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I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

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