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Latest Celiac Disease News & Research:
Everything posted by trents
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Par for the course. Most physicians don't know any better. They are not knowledgeable about celiac disease.
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Usually, the blood work is done first since it is non invasive and cost efficient. As RMJ said, 6-8 weeks of consuming gluten daily in the amount equivalent to two pieces of wheat bread.
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Diagnosed with celiac a little too soon
trents replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Ruu, so I understand you to say that you have a biopsy coming up soon? If it is positive then you have a firm answer. If not, the only other course of diagnostic action would be to commit to going gluten free and see if your symptoms improve over a period of weeks or months. If they don't, gluten is not the problem and you can look elsewhere. Just take one... -
Diagnosed with celiac a little too soon
trents replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Actually, that is not true, strictly speaking. There are two primary manifestations of celiac disease, classically speaking that is. One is small bowel lining inflammation/villi blunting and the GI distress that typically (but no always) accompanies it. The other is dermatitis herpetiformis (DH). Typically, people have one or the other of these classic manifestations... -
Diagnosed with celiac a little too soon
trents replied to Ruu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
You have had that test and hopefully caught the disease at an early stage before you have experienced prolonged inflammation/damage to the small bowel villi and the health problems that ensue from that. If you want confirmation that you have celiac disease or not, you would need to go to the next step of diagnosis which is the endoscopy/biopsy. This... -
Your experience is not uncommon, believe me! Many doctors, especially older ones are not knowledgeable about gluten-related medical problems. They are relying on very old information from their medical school training when it was thought that celiac disease is a very rare condition than affects only about 1 in 5000 people. Today, we know that the number is...
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Hi. Does anyone diagnosed with celiac with negative serology and positive genetic test? My biopsy showed Marsh3a score which is mild villi damage,gene HLAq8 with celiac variants are positive but antibodies were normal. I’m so anxious.
trents replied to Sabaarya's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Some celiacs show atypical serology results and that's why it can be necessary to run the full celiac panel rather than just the tTG-IGA. Your total IGA at 226 is not low. Low total IGA can skew the celiac antibody tests toward the low side. My suggestion would be to either: 1. Go back on gluten daily for 6-8 weeks and be retest for celiac serum antibodies... -
Hi. Does anyone diagnosed with celiac with negative serology and positive genetic test? My biopsy showed Marsh3a score which is mild villi damage,gene HLAq8 with celiac variants are positive but antibodies were normal. I’m so anxious.
trents replied to Sabaarya's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ Read the sections, "The First Step: tTG-IGA" and "Other Tests." If you were not eating normal amounts of gluten for 10 days leading up to the serology tests then the results may not be valid. Again, can you post the specific tests, their numbers and the reference ranges for... -
I doesn't matter which meal during the day you consumed gluten. And missing a day or two of gluten leading up to the serology test probably won't make much difference in the results as long as your were consuming two slices of wheat bread or the gluten equivalent most of the days for at least 6 to 8 weeks prior to the test.
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Hi. Does anyone diagnosed with celiac with negative serology and positive genetic test? My biopsy showed Marsh3a score which is mild villi damage,gene HLAq8 with celiac variants are positive but antibodies were normal. I’m so anxious.
trents replied to Sabaarya's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Yes, we have had a number of forum participants report negative serology testing but positive biopsy. But two questions need to asked at this point. 1. When you had the antibody testing done, were you already on a gluten free diet? 2. Exactly what antibody tests were done? Can you post the results with reference ranges? Many doctors will only do... -
Looking for Insight
trents replied to Djd27's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
They don't tell you these things because either they don't know enough to do that or they are skeptical about celiac disease in general and don't think it will make any difference.- 12 replies
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Follow up required?
trents replied to Abcdefghi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Gastritis and GERD commonly occur in conjunction with celiac disease. Depending on the severity of the villi damage, the resolution of the scope used and the experience of the one doing the scoping, damaged villi may not be visible using an endoscope. The lab will look at the biopsy under a microscope. -
Looking for Insight
trents replied to Djd27's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I would add to that a high potency, gluten free B-complex. But if you are having vitamin levels checked you need to be off of vitamin supplements for at least two weeks. Some deficiencies are masked when you are on supplements.- 12 replies
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Looking for Insight
trents replied to Djd27's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Have you been tested for celiac disease? Either with blood antibody tests that are specific for celiac disease or by biopsy of the small bowel lining? I would also suggest you look into histamine intolerance and SIBO.- 12 replies
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Struggling with whether to have kids
trents replied to Faberferrum's topic in Parents, Friends and Loved Ones of Celiacs
Most celiacs develop intolerances to other, non-gluten, foods over time. It can be almost anything but dairy seems to be the most common culprit. Developing an intolerance to eggs is not uncommon. About 10% of celiacs react to oat protein the same way they do wheat/barely/rye. -
Help! Could this be DH on the scalp?
trents replied to FitnessMom's topic in Dermatitis Herpetiformis
DH is one of the classic manifestations of celiac disease but your blood test does not indicate you have celiac disease. So maybe your rash is something else. On the other hand, we sometimes see negative antibody test results when people actually do have celiac disease. Specifically, what celiac antibody tests did your physician run? Many will only run... -
Is Costco or Kirkland Generic Claritin Gluten-Free?
trents commented on Scott Adams's article in Gluten-Free Foods & Beverages
Wrong! The add is not for Gliadin but GliadinX. "X" as in taking it out. -
Could this be the underlying cause of our allergies
trents replied to Jackie Garrett's topic in Related Issues & Disorders
From: https://www.healthline.com/health/histamine-intolerance#diet "Histamine-rich foods are: alcohol and other fermented beverages, fermented foods and dairy products, such as yogurt and sauerkraut, dried fruits, avocados, eggplant, spinach, processed or smoked meats, shellfish, aged cheese. There are also a number of foods that trigger histamine... -
Help with testing
trents replied to Xvd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Welcome to the forum, Xvd! You may be confusing gluten intolerance with celiac disease. Gluten intolerance is an umbrella term made popular by pop science food industry marketing that covers two medical problems associated with gluten consumption: celiac disease and gluten sensitivity (aka, non celiac gluten sensitivity or NCGS for short). Sounds like... -
Barebones lay version: It's a targeted therapy that blocks the action of certain immune system cells that attack the villi lining of the gut and cause damaging inflammation for those with celiac disease without suppressing other vital immune system responses. How'd I do?
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Most Space Food is Gluten-Free, but No Celiac Astronauts Allowed
trents commented on Jefferson Adams's article in Additional Concerns
Is this food scientist, Vicky Kloeris, a NASA official? Is she offering an opinion here or speaking on behalf of NASA? She seems to be drawing a conclusion based on circumstantial evidence rather than on anything NASA has actually said about celiacs. -
I think we scared Magan off.
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Struggling with whether to have kids
trents replied to Faberferrum's topic in Parents, Friends and Loved Ones of Celiacs
Here's another perspective. Sure, celiac disease is a bummer. It is socially limiting and makes eating more expensive and less pleasurable. And when it goes unchecked and unheeded it can cause lasting damage to other body systems. But unlike many other diseases, we know what the cause is and we know what the remedy is. And the remedy has no side effects,... -
Could this be the underlying cause of our allergies
trents replied to Jackie Garrett's topic in Related Issues & Disorders
This needed to be said as some forum participants are claiming milk is high in histamines. It also needs to be said that the problem may not be high intake of histamines in the diet but low production of DAO by the body such that histamines are not being broken down at normal rates.