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Celiac Disease Pre-Diagnosis, Testing & Symptoms
If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.
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- trents commented on Scott Adams's article in Autumn 2025 Issue51Can You Develop Celiac Disease Later in Life? Adult-Onset Symptoms (+Video)
About 15% of those with celiac disease suffer with the rash (dermatitis herpetiformis).- adult
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- Xravith replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9Taking Probiotics but Still Getting Sick After Gluten – Advice?
Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating ...- advice
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- Patty6133 commented on Scott Adams's article in Autumn 2025 Issue51Can You Develop Celiac Disease Later in Life? Adult-Onset Symptoms (+Video)
How many people developed a rash due to gluten intolerance?- adult
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Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
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Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer. Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
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My husband has had lactose intolerance for his entire life (he's 68 yo). So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours. He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect. He is scheduled for an endoscopy and colonoscopy in 2 weeks. He was told to eat "gluten free" until the tests!!! I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning. So I guess I have 2 questions. First, I read on this website that prior to testing, eat gluten so as not to compromise the testing! Is that true? His primary care doctor told him to eat gluten free prior to testing! I'm so confused. Second, I read that celiac disease is genetic or caused by other ways such as surgery. No family history but Gall bladder removal 7 years ago, maybe? But how in God's name does something like this crop up and now is so awful he can't go a day without worrying. He still works in Manhattan and considers himself lucky if he gets there without incident! Advice from those who know would be appreciated!!!!!!!!!!!!
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By Scott Adams · Posted
You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis. -
By Scott Adams · Posted
In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
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