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- trents replied to Judy M's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1New (possible) celiac diagnosis
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... -
- Judy M posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1New (possible) celiac diagnosis
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... -
- Janice Emmendorfer commented on Scott Adams's article in Autumn 2025 Issue46Can You Develop Celiac Disease Later in Life? Adult-Onset Symptoms (+Video)
I was diagnosed in my late 50s. I wasn’t absorbing iron. (For years I had stomach issues eating too much bread etc but didn’t think anything) They were giving me iron transfusions for weeks and my levels kept going down. So they ran more blood work and found it…I had never heard of it or “gluten free” So much easier though to find food now than ...- adult
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- Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Patiently Waiting to See Results
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... -
- Scott Adams replied to slkrav's topic in Gluten-Free Foods, Products, Shopping & Medications4
Gluten free beer ?
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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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. -
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. -
Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis.
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Thank you for that information!! I have learned so much since coming to this site and I really appreciate ALL the tips from everybody!!
I live in New Orleans, and I spend far too much time wondering about the what ifs and the logistics of getting out of town in non moving traffic.
My best bets have been to pack safe peanut butter and rice crisps, trail mix, some fruit leather, and lots of water. From experience, the cooler is the last thing anyone makes space for when family heirlooms are on the line.
My plan of action is to grab the container of paperwork, including my SS card, birth certificate, high school papers, medical papers (including diagnosis and Celiac guidelines, signed by my doctor), emergency/ evacuation contact sheet (my friends, family, and healthcare providers were all willing to give me contact numbers and e-mail so we do not wind up unable to locate each other like in 2005, and insurance card. I have a medium sized bag that I will fill with basic clothing, one photo album, and a small cooler. My fiance keeps his papers with mine, and has a bag of equal size. Food I need for the trip goes in the cooler, everything else goes out to the dumpster before we leave. I will buy food I need for the stay when I get where I am going (which is dictated by whether or not it has a WF in the vicinity, as that is my job and my food source).
Last time I had a hardcore evacutaion, we learned how very little you actually need, as opposed to what you want.
So- important documents, a week's worth of clothing, one heirloom or sentimental object, and enough food to get you to your destination. If you have a baby, plan ahead by bringing about a week's worth of food and diapers for them, plus enough water to make bottles and rinse them out.
Hope that helps!
~Destiny (is so stressed out)
I would also get some extra tissues, toliet paper, and flashlights too to take along. Some immodium.
Oh, wow... now you mention it. I cannot imagine getting stuck in evecuation traffic, getting a hold of something that disagrees with me, and not having immodium!
That would make evacuation even more nightmareish.
It would not be worthwhile to sacrafice your own health to help us. There are enough others doing the heavy lifting, knowing our area is in your prayers is help enough.
In the event you are ever displaced, try to have emergency numbers for your doctors, a signed note (on their letterhead) explaining your condition and diagnosis for another doctor wherever you wind up, and a month's worth of any Rx medication. If at all possible, I try to have my prescriptions moved to where I am going before I leave. Most of the time, the pharmacist has already left, though. Just as well, they need to move, too!
Hope this helps,
~Destiny
i think another important thing when stocking up on food is to make sure it's stuff you like and use on a regular basis, so you know how to prepare it, you're ok eating it, etc.
a great place to check out as far as food storage goes is www.bluechipgroup.net
they are a local supplier that i love, and on the food storage page, they have a 1-year emergency gluten-free plan! i'm trying to build one of my own for my family...it's so much work!
Got an answer about Ensure:
Hello Destiny,
Thank you for contacting Abbott's Ross Products Division.
Ensure
Last night I was remembering right after Katrina when we began receiving bus loads of evacuees and I, along with many other members of our local Celiac group, began making phone calls to our Celiac group leader and to the Red Cross, the local food bank, etc. to try to make donations of gluten-free food for evacuating Celiacs. All the pictures on TV showed the receiving areas handing out pizzas and burgers.
Any Celiac that might evacuate away from their known areas might want to keep a list of Celiac groups in their evacuation supplies. It would help you plug into the needed resources right away.
A List of Local Celiac Disease Support Groups/Chapters
https://www.celiac.com/st_prod.html?p_prodi...-49107235539.b0
And I will say that the Red Cross seemed rather clueless about gluten-free food but the food bank was willing to accept the food and keep it separate from the regular stuff. They put it in their medical area where they keep the diabetic food.