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

But I Didn't Feel Anything...........


zukru

Recommended Posts

zukru Newbie

Hello my name is Anne-Elise and I am diagnosed on three levels with Celiac Disease. Briefly my background was an ER visit for chest pain ............. Stress Test and Echo proved a healthy heart. Second guess was Gallbladder.....my symptoms were certainly consistent with stones. So we arranged for Ultrasound and endoscopy ........ nothing on the ultrasound and the endoscopy say nothing until the Dr. decided to go down a little further...................

I don't remember a whole lot, and just remember hearing gluten. My Mother was diagnosed with that issue as well in 1971.......when they did not have the blood test. I took the required blood tests and a biopsy along with some third thing I don't remember confirmed it. More worried that I was dying from some other ailment as I had a repeat trip to the ER for the same symptoms.......I didn't really take it seriously. I convinced myself that it must have just started because I had none of the symptoms my Mother had --- and I could gradually reduce gluten.

Homemade Bread was my best friend!!!! Living without that and Pasta ...... a fate worse than death for me (not really). When I went back for the follow up examination I was bombarded with statistics and worse case scenarios........which required a colonoscopy immediately because lymphoma and intestinal damage were part of the complications that came with non-treated celiac disease. I was terrified .... I spent the weekend scared of the worse case scenario's; terrified of what they would find.

Long story shortened.......I have no growths, major intestinal damage or lymphoma present at this time. I am going to live ............. well depending on whether they can find out what else is wrong. So here I am, faced with a huge life style change --- and the fear has been instilled in me to take it seriously. The denial is gone now and I am left with the challenge of replacing my beloved bread and pasta with gluten free products.

I am open to any and all suggestions regarding recipe's, advice, suggestions, vitamin supplements (apparently slightly overweight I am still malnourished). Anything and everything other than the scary stuff - my Doc did a swell job on that!!!!

Thank you for your time.

Anne-Elise


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



Celiac.com Sponsor (A8-M):



ranger Enthusiast

Welcome, Anne. There will seem to be some major changes in your life but, after awhile, you will see they are not unsurmountable. They are more changes in style, not changes in substance. First, read everything you can on this forum - filled with good advice. Start simple with fruit, veges, meat and rice as your mainstays. Do you cook and bake? I can make everything I ate before. Almost!

You can buy good pasta. Breads a bigger problem, but if you bake it works out. Will you be sharing your kitchen with gluten eaters?

Most importantly, ask away. No question is too small or stupid. You will learn the definition of learning curve.

Susan

Green Eyes Rookie

Hi Anne-Elise,

My story is similar to yours, but I didn't even have the GI symptoms. I was having problems but nothing related to the GI track (later found out it was back related not celiac). After a biospy I was diagnosed with celiac. It turned my world upside down. It took me a few months to feel comfortable with my gluten free diet, now I can't imagine life any other way. I to loved my breads and pastas. I loved them so much I choose not to replace them but rather do without them. The only breads I use is the "Bob Mills cornbread" (to die for) and "Pamela's Baking Mix" for pancakes. I have been on the gluten free diet for a year now and I don't even give it too much though - comes naturally.

Since I do not have GI symptoms on small amounts of gluten I chose to be re-tested every 6 months to see if my numbers were decreasing. My last results a few weeks ago show that my celiac is "normal." Basically that means I have adhered to the diet and there is no longer damage. All my vitamin levels are normal range and no bone loss (had bone scan). My focus now is to stay healthy. Not just avoid a little cancer but to feel great each and every day.

So don't focus on what you can't have, but look forward to this new challenge. Sounds like you have a knowledgable doctor and you need to stay the doctor for continued guidance!!!

Best Wishes!!!

Jennifer

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,062
    • Most Online (within 30 mins)
      7,748

    Lexxi Hartless
    Newest Member
    Lexxi Hartless
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...