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

Cautiously Thrilled


AliceW

Recommended Posts

AliceW Apprentice

:blink:

I"ve posted before,but it's been a while, so here's my background again (sorry this is so long!):

Perfect digestive health until contracting a severe case of mono at age 19; daily reflux/heartburn require high doses of medication for the entire 15 years since. Intermittent diarrhea during my 20s; given a diagnosis of irritable bowel syndrome. Constipation and gradually worsening severe bloating and gas in my 30s.

A few months ago I decided I was going to try to get myself off reflux drugs. I made various lifestyle changes (gave up coffee, cut way back on wine, didn't eat within 3 hours of bedtime, etc) which did help, but only up to a point...I imporved somewhat and then reached a plateau. I then somehow (I don't remember how at this point) got hold of the idea that a gluten intolerance might be responsible for my GI symptoms.

So, I got tested by enterolab, and my results were strongly positive for anti-gliadin antibodies and TTG. However, I then got conventional blood tests for celiac, which were firmly negative.

So I started a gluten-free diet a month ago despite the negative blood tests, figuring I had nothing to lose. For the first two weeks I felt the same; during the third week I felt briefly terrible, and then for the 4th week I have felt...amazing!!!

I have had almost no reflux or gas for the last 3 or 4 days. It is astonishing. I can hardly believe it. Rather than taking medications and still feeling bad, I've taken only one or two rolaids all day, and I feel fine. I am almost afraid to hope that it might continue. My stomach is flat, I don't have embarassing gas, and most amazingly, I do not have heartburn!! :blink:

But the difficult part is that I don't know what to attribute the change to. It might be the gluten-free diet, or on the other hand maybe it's just that I am finally healing as a result of the anti-reflux lifestyle changes I've made?? It would be different if I'd been formally diagnosed with celiac disease, but as it is I still feel like I'm feeling around in the dark.

I think I should stick with this for a few more months, and then do a gluten challenge and see what happens. That way I'll know for sure. If it will make me feel this good I'll happily stick with the gluten-free diet forever, but on the other hand I wouldn't want to if I don't have to. Does that seem reasonable?

Just had to share!

Alice :)


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



Celiac.com Sponsor (A8-M):



ArtGirl Enthusiast

Welcome back - I'm glad you're feeling better.

Just wanted to relate that my heartburn issues left after about 5 weeks on the gluten-free diet and have never returned. I know there are others here who have reported having GERD that cleared up after going gluten-free.

Ursa Major Collaborator

Personally, I would take the Enterolab diagnosis as a firm diagnosis. The blood tests are only about 50% accurate.

It is extremely likely that you feel so great now due to eliminating gluten. I hope you'll continue to improve, and that none of your symptoms return.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,897
    • Most Online (within 30 mins)
      7,748

    Guy driech
    Newest Member
    Guy driech
    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

    • knitty kitty
      @Alibu, There may not be textbook intestinal damage in the early stage of Celiac Disease!!! Keep in mind that the endoscope used can only reach about a foot past the stomach, while the small intestines are twenty-two feet long!  Damage can be patchy or out of reach of the scope.  Early celiac disease may not show damage at all. Don't compare your tTg IgA numbers with others.  Every lab uses their own range values.  Tests from different labs are not using the same scale and shouldn't be compared with other people's numbers from a different lab.   You've got the Celiac genes and the positive antibody test and the EMA test.  Next step is a Gluten Free diet trial and look for improvement.  Celiac Disease can be diagnosed using genetic testing and response to a gluten free diet!  I'm seronegative, but DQ 2.5.  My doctors were clueless.  They didn't see any classic textbook damage, so didn't bother to biopsy.  Ack!    This study followed people who showed no or little damage at first....they accrued more damage. Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/ There's a move to be less reliant on endoscopy for diagnosis. Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/ Welcome to the tribe!
    • JulieB11
      I was introduced to a new-to-me alcoholic beverage yesterday, a grapefruit radler. The bartender said it was sugar- and gluten-free and I trusted him. After I ordered a second drink, I had the good sense to look it up: it’s half beer! Usually wheat beer. BUT it gave me no symptoms—no bloating, fatigue, stool issues. Anyone else have this experience?
    • Capt Jules
      are these gluten free, I know that they don't devote space and there could be cross contamination but can they be eaten by celiac person?  
    • trents
      knitty kitty brought up something that also occurred to me. Namely, the reason you don't like bread and pasta may be that your body has been instinctively telling you, "this is harming me" and so you avoid it. Cake, on the other hand, has less gluten and lots of other goodies like sugar and butter and chocolate that mask what gluten there is.
    • knitty kitty
      @Shining My Light, While you're trying to decide on your next steps on your journey, I suggest you have a DNA test to look for Celiac genes.  Your genes don't change, so you do not have to be eating gluten for it.  If you have even one Celiac gene, it's more likely to be celiac disease, than NCGS.  TTg antibodies do not occur in NCGS.   There are different amounts of gluten in different breeds of wheat.  Wheat used for cookies and cakes and tortillas do not contain as much gluten as wheat used for bread and pizza crust.  Look at the crumb in cakes and tortillas.  There's only small bubbles. Gluten is in the matrix forming those bubbles.  Compare those to the big bubbly holes in artisan bread and chewy pizza crust.  To get those big holes, more stretchy elastic gluten is used.   You are subconsciously avoiding those types of foods with large amounts of serious gluten in them.  Consider including these types of high gluten foods in your gluten challenge before your antibody retest and endoscopy.  Keep a food mood poo'd journal to record how symptoms change.   Anxiety, headaches and joint pain are symptoms of Celiac that occur outside the digestive tract, these are extraintestinal symptoms of celiac disease. "Could I really possibly follow a gluten free life as close as I follow Jesus?"    Yes, He's been my constant companion and guide on this journey which has brought us to the forum so we can help others on their journeys.   References: Celiac Disease: Extraintestinal Manifestations and Associated Conditions https://pmc.ncbi.nlm.nih.gov/articles/PMC6895422/ Psychiatric and Neurological Manifestations of Celiac Disease in Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC9984242/#:~:text=celiac disease%2C a multiorgan disorder with,life [21%2C22].
×
×
  • Create New...