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Found A Relative With Celiac


imsohungry

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imsohungry Collaborator

Hey everyone :)

I know I haven't posted much in awhile. I've been spending time with my baby boy. A total joy in my life but a lot of challenges given his health problems and mine.

Anyway, (to get back to topic) I'm writing because I'm excited. I was visiting my grandmother the other day, and she was explaining that she was cooking all of these "special meals" because my great aunt was recently diagnosed with "some illness." As I explained my Celiac diet, she commented that I was just about as "confusing" to cook for as my aunt (grandma meant nothing bad by that, she is simply in her 70's and gets confused). ;)

I helped my Grandmother cook an entire gluten-free meal (without telling her it was gluten-free). When the food was placed on the table, I said, "Wow look, you just made an entire meal gluten-free"! B) My aunt joined us for dinner and explained that she too has Celiac...She said it comes from my grandfather's side of the family! How about that! I now have the family history to back up my "probable" diagnosis.

Well, I just wanted to share my news! Thanks for reading! :)

-Julie


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Lisa Mentor

Jules:

Good to hear from you again. I think that most of us have celiac skeletons somewhere. My deceased father had stomach problems for as long as I can remember. He had terrible gas, which he always blamed on the dog.

I don't know of anyone else in my family, but I suspect a few. It's nice to have some validations.

Lisa.

BTW, congrats on your masters degree.

imsohungry Collaborator

Hi Lisa :)

Thanks for the welcome-back! I know what you mean about suspecting your father had celiac. I honestly believe my mother has it or at the very least is gluten intolerant. A few years ago, she was dx with colon cancer, and she was not yet fifty. She and I have so many of the same symptoms, but she says that she is "too old to change her ways now." I can't make decisions for her, but I do provide her with info. and hope she'll make the right choice. ;)

yep, I FINALLY graduated a year ago with my M.A. in professional counseling. After graduation, I had been tutoring local students from my home, and I am currently volunteering locally. However, I am technically "without recognized employment." :P A stay at home mom does not get enough credit; It is a lot of work!

Well, enough about me. Thanks for writing back. I hope you are doing well!

Blessings. -Julie

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    • trents
      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
    • numike
      Check out this celiac story  I was diagnosed early 2000s with the blood test  since then I have for the most part maintained a gluten-free diet  Recently (August 2025) I drove from Southern Illinois to Lake Erie Ohio On the drive back I was extremely hungry and I had a coupon at a hamburger chain and I stopped and forgot to request gluten-free bun etc and quickly consumed two hamburgers. I promptly ate both of them and had absolutely no problem since then I've been eating plenty of gluten  Is my celiac gone?  Insert: No, celiac disease cannot just end because there is no cure for it; however, a strict, lifelong gluten-free diet allows the small intestine to heal and symptoms to go away. To manage the condition effectively, you must strictly avoid all sources of gluten, including wheat, barley, and rye, which are common in the American diet. Sticking to the diet can lead to significant symptom improvement and intestinal healing, but it requires ongoing commitment and monitoring with a healthcare professional  Regarding medical test I had My stools analyzed Giardia Ag Cryptosporidium Ag and they came back negative  I had the lactulose test and it came back high so I'm on two weeks of heavy antibiotics That still has not stopped me from eating gluten. Here's what I think is going on and I hope to have your opinion regarding it  Since I've been gluten-free for so long my intestinal tract has repaired itself consequently anything I eat with gluten now just bounces right off with no damage to my gut  however  when I asked AI what was going on the reply was celiac has not gone away and  if I continue to eat gluten I'm going to have problems   I look forward to your sage advice as to what the heck is going on with me Thank you for reading Mike 09112025
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