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is my celiac disease gone?


numike

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numike Newbie

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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trents Grand Master

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 Newbie

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 Grand Master

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.

Wheatwacked Veteran

Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease.

6 hours ago, numike said:

lifelong gluten-free diet allows the small intestine to heal and symptoms to go away.

There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging".

You may be tolerating gluten, the damage will happen.

Of curiosity though, your age, sex, are you outside a lot without sunscreen?

 

numike Newbie

69yo M I have had skin cancer basal 

I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE

  • Scott Adams changed the title to is my celiac disease gone?
Wheatwacked Veteran

I get my supplements f from Pipingrock.com close to 10 years now. Good quality, prices, ship  worldwide.  My 25(OH)D is at 93 ng/ml after 10 years taking. In 2019 it had still only gotten to 47 ng/ml.  Celiac Disease causes low D from malabsorption.

  • High Potency Vitamin D3, 10,000 IU, 250 Quick Release Softgels
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Basil Carcinoma.  Basil cell carcinoma is the result of failure of the immune system to recognize fauty DNA in cells. It is iodine that causes apoptosis, killing old and defective cells.  Not enough vitamin D to control the immune system and not enough iodine to do the job.  I had a sebaceous cyst, my seventh facial cyst, in 2014.  It started looking like a blackhead, but grew (Third eye blind).  All my 7 previous cysts had drained and healed normally.  When I drained this, there was a hairball the size of a BB and it would not heal.  This was one of many reasons I started Gluten Free.  I chose to not have it surgically removed, because I realized I had nutrient deficiencies that were causing slow healing.  By 2015 I realized it was Iodine deficiency and started eating seaweed, which helped my muscle tone, but not the healing.  The warnings on iodine from the gov't were so scary, I was afraid to use them.  Turns out it is all based on one study on rats in 1948. "The Wolff-Chaikoff Effect:   Crying Wolf?"  

Last year I started taking 600 mcg a day and it is reversing my glaucoma and fixing muscle tone, hair nails and skin all returning to healthy,  Brain fog, which had improved dramatically on Gluten Free diet, my thinking got even clearer with the iodine. Finally the cyst my bellwether since 2014, began to heal.  So I had it biopsied  in July 2025, came back basal cell carcinoma.  With the Iodine (Piping Rock Liquid Iodine 12 drops a day 😃 = 600 mcg) is healing normally and I have a follow up in December.  By then it will have healed.  It is scabbing over like a normal wound.  In 1970 the US stopped using Iodine as a dough modifier.  The daily intake of Iodine dropped in the US 50% between 1970 and 1984.  Also, prescriptions for thyroxine have doubled.  150 mcg the RDA is not enough for anything more than preventing goiter.  Growing up in the sixties just 2 slices of bread had 200 micrograms of iodine, add a glass of milk and iodized salt and you're at 300 mcg a day.  The safe upper tolerable limit in the US is 1000 mcg.  In Japan it is 3000 mcg and the average Japanese, traditional diet, averages above 1000 mcg.  Remember when in the 80's our schools were loosing competitions to Japanese schools?  Iodine.  And Japan has 50% less breast cancer.  Nicer hair nails and skin.  It the US our kids are getting dumber, more flabby.  Fertility is dependant on enough iodine, also. 600 mcg.

Quote

The W-C effect is supposedly the inhibitory effect of peripheral inorganic iodide (PII) levels equal to or greater than 0.2 mg/L (10-6M) on the organification of iodide by the thyroid gland of rats, resulting supposedly in hypothyroidism and goiter. These rats never became hypothyroid and thyroid hormones were not measured in their plasma. Nevertheless, the W-C effect, which did not even occur in the rats, was extrapolated to humans.


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Wheatwacked Veteran

I should point out that iodine is known to exasperate dermatitis herpetiformis blistering.

It can take several months or even years of a strict gluten-free diet for the IgA-TG3 deposits to clear from the skin. After the skin completely heals, iodine may no longer trigger symptoms.

"The circulating antibodies disappear and skin symptoms resolve as a result of gluten-free diet but the cutaneous anti-TG3 IgA deposits may persist for several years. " Missing Insight Into T and B Cell Responses in Dermatitis Herpetiformis

Rogol72 Community Regular
9 hours ago, Wheatwacked said:

I should point out that iodine is known to exasperate dermatitis herpetiformis blistering.

It can take several months or even years of a strict gluten-free diet for the IgA-TG3 deposits to clear from the skin. After the skin completely heals, iodine may no longer trigger symptoms.

"The circulating antibodies disappear and skin symptoms resolve as a result of gluten-free diet but the cutaneous anti-TG3 IgA deposits may persist for several years. " Missing Insight Into T and B Cell Responses in Dermatitis Herpetiformis

I can confirm this. I no longer have any issues with Iodine since being strictly gluten and dairy free.

Jmartes71 Contributor

This is my current exhausting battle with the medical field. As Ive mentioned in past I was diagnosed in 1994 by colonoscopy and endoscopy and was told i was celiac and to stay away from wheat and Ill be just fine.NOPE not at all in fact im worse thanks to being disregarded and my new word that was given that fits perfectly medically gaslight for over 30 years.I was not informed by anyone about the condition other than its a food allergy. Long story short if it wasn't for this website.I would be so much worse. I have been glutenfree since 1994 and was diagnosed with many other foods in 2007. I have stayed away from those items, except dairy sometimes I'll cheat when I know I'll be home a few days.My work history is horrible thanks to my digestive issues. I had my past primary for 25 years and everything im going through, he danced around celiac disease. My last day of employment was March 08, 2023 I was a bus driver and took pride in that.I get sick easily and when covid hit me and I stopped taking tramadel to push to give my bloated body a break, I haven't " bounced " back.Though not that well before but worse now.I applied for disability because yet again I was fired solely on health, which by the way seems to be legal because no lawyer wants to help.I was denied and my primary stated let me fluff it up a bit.FLUFF IT UP A BIT?He has been my doctor for 25 years! All that Im going through was basically ignored and not put together. I switched primary doctor and seeing new gi and its EXTREMELY EXHAUSTING because they are staying all my test came back clean, good, its normal. Except THANKYOU LORD JESUS HLA DQ2 is positive that Itty bitty tiny little test of positive FINALLY VALIDATION RIGHT.No, Im still struggling and fighting its not fair

Scott Adams Grand Master

@Jmartes71, your story is a powerful and heartbreaking testament to the profound failure of the medical system to understand and properly manage celiac disease and its long-term consequences. Being dismissed and medically gaslit for three decades after an initial diagnosis is an unimaginable burden that has cost you your health, your career, and your sense of justice. The fact that a primary care physician of 25 years would offer to "fluff up" a disability claim rather than properly advocate for you based on a well-documented history is a devastating betrayal. While the positive HLA-DQ2 test offers a sliver of validation, it is infuriating that it isn't enough to end the fight, and it is completely understandable that you find this ongoing battle for basic belief and care to be utterly exhausting and deeply unfair.

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    • Jmartes71
      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
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