Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Triumphant Set Back..huh?


chasbari

Recommended Posts

chasbari Apprentice

Well, a year ago I was all but ready to lay down and die. I had given up all performance responsibilities and was staying in the game by doing a little stage directing. I have been involved with a local symphony orchestra's yearly performances of "Amahl and the Night Visitors' for the last 14 years and had to relinquish singing the role of Melchior as I became progressively more ill over the last two years. I coach the boys who sing the lead role, am stage director and this year my youngest was singing the role of Amahl along with two other boy sopranos. It had always been my dream that I would share the stage with one of my sons in this production and here I was too ill to do so last year. Not knowing my health situation would improve so greatly we cast another baritone in the role of Melchior. We run the show in two different venues over two weeks. I was wondering and wishing out loud about the possibility of singing the last performance as that was a show my son was going to sing. The gentleman who was singing the role of Melchior this year offered to allow me to sing that show. I took him up on the offer. For those of you in the performing arts, you understand how rare it would be for someone to willingly give up a major gig with an orchestra/opera company. His kindness is unprecedented and I am not so sure I would have been so gracious presented with the same situation. The cast was notified about the change but I forgot to let the maestro know. Management was aware of and approved the change so I had taken care of all but letting the maestro know... His first clue was when I made my first entrance. He was smiling afterward so I guess there are no problems there. the performance went very well and I have now made it through two major works in the last two months having sung the bass solos for a Mozart Requiem last month.

Now for the setback. I didn't check my stage makeup thoroughly enough and there must be some gluten hiding somewhere in there. My gluten symptoms always seem to be the sort of "slow role cascade" type of reaction except when I ingest a significant amount at which point the abdominal pain is immediate and severe. The last few days I have had increasing intestinal pain and discomfort, The RA is flaring and the pain and weakness in my joints is at a level I have not experienced for some time. Vision is fuzzy and emotions and brain fogginess are all present to some degree. Time to get new makeup for the kit as I feel like I have some very good years of performing ahead of me if I take care of myself and don't get glutened by makeup in the future. As the celiac has healed I find myself in better vocal shape than at any time in my life...ever! The happy result of having struggled through the ravages of the disease for so many years is that I had to seek out the perfect vocal technique in order to remain even marginally functional throughout the last several decades. Now that my body is not chronically inflamed that technique is serving me very well. What doesn't kill us truly can make us stronger. I hit the nadir of symptoms early this morning when my back went out so I figure it is nothing but up from here on. When in doubt, I will not guess but will insist on knowing what's in what! I knew that but now I know that!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



YoloGx Rookie

Congratulations! I am so happy for you! Its so wonderful to get back one's gifts one thought one lost!

About the glutening from the cosmetics, there are gluten-free cosmetics out there. You can find some advertising on this site.

Also I recently learned that ta king L-glutamine right away helps avert some of the worst symptoms of the glutening. It helps heal the lining of the gut. Similarly, marshmallow root and slippery elm help soothe the lining of the gut too.

Taking enzymes like bromelain/papain and/or eating some fresh papaya and pineapple also helps. I find taking dandelion root and cleavers helps speed the detox. Taking extra enterically coated acidophilus also seems to help.

I similarly am now able to paint and do sculpture after thinking I could not for years. I still have to do yoga etc. of course and stay off sugars and processed foods and remain gluten-free, but its well worth it.

Perhaps now you will have a whole new singing career!

Bea

jststric Contributor

What a delight to get to perform with your son! I have played violin in many orchestras as well as play piano in many venues. My biggest thrill has been to accompany my son with his trumpet solos in school! This gluten and other intolerances many of us here suffer with certainly doesn't make life easy. But I'm really glad you got to perform!

chasbari Apprentice
Congratulations! I am so happy for you! Its so wonderful to get back one's gifts one thought one lost!

About the glutening from the cosmetics, there are gluten-free cosmetics out there. You can find some advertising on this site.

Also I recently learned that ta king L-glutamine right away helps avert some of the worst symptoms of the glutening. It helps heal the lining of the gut. Similarly, marshmallow root and slippery elm help soothe the lining of the gut too.

Taking enzymes like bromelain/papain and/or eating some fresh papaya and pineapple also helps. I find taking dandelion root and cleavers helps speed the detox. Taking extra enterically coated acidophilus also seems to help.

I similarly am now able to paint and do sculpture after thinking I could not for years. I still have to do yoga etc. of course and stay off sugars and processed foods and remain gluten-free, but its well worth it.

Perhaps now you will have a whole new singing career!

Bea

I love pineapple but just don't understand papaya... for some reason it doesn't taste as good as its name sounds to me. I think I would be happiest living in Hawai'i in the middle of a field of pineapples. I have fresh pineapple pretty much every day as it really helps me feel better. I am eating goat's milk yogurt but haven't tried any other probiotics or other supplements as you have mentioned.

Glad to hear you are back to sculpture. I had a hard time with even wanting to sing as I was healing even though I finally could with much less technical trouble than in the past.

I am still having a few rough days here and it doesn't help that my wife is a mad cookie baker around the holidays. I woke up in a fog having a hard time breathing and my ears were ringing and the house was filled with the smell of a bakery. I can't get her to understand that I need to remove myself to the studio which is separate enough from the house that the baking doesn't bother me out there when she is baking. It's my gluten free refuge. She still won't double check her makeup and shampoos or detergents... It's all up to me and then I am met with skepticism. Tough being in a non gluten free household. Especially when I am not feeling too good as in the last few days.Wah, wah and all that. I have been craving oranges all day, they just taste especially good and leave me felling a bit better. Clementines are almost too sweet but the oranges aren't.

Done rambling.

YoloGx Rookie
I love pineapple but just don't understand papaya... for some reason it doesn't taste as good as its name sounds to me. I think I would be happiest living in Hawai'i in the middle of a field of pineapples. I have fresh pineapple pretty much every day as it really helps me feel better. I am eating goat's milk yogurt but haven't tried any other probiotics or other supplements as you have mentioned.

Glad to hear you are back to sculpture. I had a hard time with even wanting to sing as I was healing even though I finally could with much less technical trouble than in the past.

I am still having a few rough days here and it doesn't help that my wife is a mad cookie baker around the holidays. I woke up in a fog having a hard time breathing and my ears were ringing and the house was filled with the smell of a bakery. I can't get her to understand that I need to remove myself to the studio which is separate enough from the house that the baking doesn't bother me out there when she is baking. It's my gluten free refuge. She still won't double check her makeup and shampoos or detergents... It's all up to me and then I am met with skepticism. Tough being in a non gluten free household. Especially when I am not feeling too good as in the last few days.Wah, wah and all that. I have been craving oranges all day, they just taste especially good and leave me felling a bit better. Clementines are almost too sweet but the oranges aren't.

Done rambling.

Hi Chasbari,

Too bad you can't get your wife to bake gluten-free for you instead--there are lots of excellent recipes out there. I would try to bend her on that one--maybe even investigate baking a few of the gluten-free goodies myself. Having gluten in the air (as in wheat flour etc.) where you live is awful. Afterward there is the whole tedious clean up too!!

I now live in an entirely gluten-free household; the difference in my health has been astounding. Now there are so many things I don't have to even think about unless/until I go out to eat elsewhere and/or am dating some new guy.

Previously I actually had my own separate kitchen and living quarters--living in a daylight apartment under my my mom's house. However it was still too close to the mad holiday gluten fests and I would get ill. Ain't family grand??

Bea

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,982
    • Most Online (within 30 mins)
      7,748

    Amy Pasquantonio
    Newest Member
    Amy Pasquantonio
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • cristiana
      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
×
×
  • Create New...