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Recent Activity
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- terrymouse posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Probably celiac but also confused
I have an endoscopy booked for mid-September to test for Celiac. My gp seems convinced it is celiac and I should eliminate gluten right away, but the gastroenterologist I was referred to says if I'm totally gluten-free then they won't be able to detect celiac from the endoscopy, and I should load up on gluten 2 weeks before the test. So I guess I shouldn... -
- knitty kitty replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease32Refractory Celiac disease - what to do
Being low in B12, Folate B9, ferritin, zinc and copper sounds consistent with anemia which can often occur with Celiac. What did your doctor recommend? What about your Vitamin D? It helps regulate the immune system. -
- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease32Refractory Celiac disease - what to do
@knitty kitty thank you I am exploring these options, I really appreciate all the suggestions and info. I am only slightly below the normal range for folate, zinc and copper. And in the low end of the normal range for B12, ferritin, and vitamin A. I’m good for carotene magnesium and iron, but I’ve been taking 400 mg magnesium daily -
- Alibu replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Waiting on biopsy after positive bloodwork, but also not really believing this is real
I just had my endoscopy the other day and the doctor took 12 samples because he said if we're going to find something we're going to find it today LOL. But when he got down there, he said everything looked good. So I have it in my head again that it's going to be negative because everyone I've heard of who had a positive biopsy had their endoscopies where... -
- trents replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Virus, celiac disease or both?
That's just it. When they are doing an EGD, even with biopsy, if they aren't thinking about celiac disease they may miss it. They should take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and easily missed if sampling isn't through. And patch damage may explain lack of dramatic symptoms. Let me assure you that we...- 1
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By terrymouse · Posted
I have an endoscopy booked for mid-September to test for Celiac. My gp seems convinced it is celiac and I should eliminate gluten right away, but the gastroenterologist I was referred to says if I'm totally gluten-free then they won't be able to detect celiac from the endoscopy, and I should load up on gluten 2 weeks before the test. So I guess I shouldn't eliminate gluten then? Or stop and start again closer to the appointment date. But I'm also on the wait list in case they can get me in sooner, because I'm losing weight. I don't want to have to go back and do it over again if I can help it. They also were unsure if there isn't something else wrong with my stomach, so that's a possibility. I don't have the details but from what I understood my blood tests results were positive but on the low end. So I'm getting mixed up here, do I go gluten-free or not? Would 2.5 months of being gluten-free make any noticable difference? -
By knitty kitty · Posted
Being low in B12, Folate B9, ferritin, zinc and copper sounds consistent with anemia which can often occur with Celiac. What did your doctor recommend? What about your Vitamin D? It helps regulate the immune system. -
@knitty kitty thank you I am exploring these options, I really appreciate all the suggestions and info. I am only slightly below the normal range for folate, zinc and copper. And in the low end of the normal range for B12, ferritin, and vitamin A. I’m good for carotene magnesium and iron, but I’ve been taking 400 mg magnesium daily
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I just had my endoscopy the other day and the doctor took 12 samples because he said if we're going to find something we're going to find it today LOL. But when he got down there, he said everything looked good. So I have it in my head again that it's going to be negative because everyone I've heard of who had a positive biopsy had their endoscopies where the doctor was like yep, I can see the damage. My tissues all look great apparently. So if they come back negative, I'm not sure where to go from here. Could it still be a non-celiac gluten sensitivity even with my blood work? I thought NCGS didn't show up on blood tests. Is it possible that the biopsy still comes back positive even if everything looked healthy on endoscope? I had it done at a big hospital in the state, so I would think they'd have the kind of equipment where they'd be able to see it well. I even have pictures in my report and they don't seem to have the damage that others have seen.
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That's just it. When they are doing an EGD, even with biopsy, if they aren't thinking about celiac disease they may miss it. They should take several samples from both the duodenum and the duodenum bulb. Damage can be patchy and easily missed if sampling isn't through. And patch damage may explain lack of dramatic symptoms. Let me assure you that we frequently have posters on this forum who were silent celiacs for years and were diagnosed incidentally with celiac disease when their docs were checking for other things. They developed other medical problems such as anemia or vitamin and mineral deficiencies, neurological deficits, Hashimodo's thyroid, osteoporois, etc. - non GI symptoms - but their docs recognized those problems as often connected to celiac disease and had them checked for celiac disease, both blood antibody testing and biopsy, and found damage. A couple of years ago the Mayo Clinic did a large study involving over 300 people. They started with those officially diagnosed with celiac disease and also tested their first degree relatives. They found that almost 50% of the first degree relatives tested positive for celiac disease and many or most were totally caught by surprise because they were largely asymptomatic. Their diagnosis was confirmed by biopsy. I really don't have anything more to say. You have some decisions to make.
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