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- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease31Refractory 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... -
- knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease36Supplements for those Diagnosed with Celiac Disease
Blood tests are affected by what you've had to eat in the previous day or two and any vitamin supplements you've taken in the past month or two. If you have been taking vitamins before the time of the blood test, the vitamins supplements could mask a deficiency. So get the tests before supplementing, or allow eight to twelve weeks for the supplements to... -
- Shining My Light replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Virus, celiac disease or both?
Thank you @trents! This is all sound advice. In 2022 I did have a biopsy done with the EGD: SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY This would have been when the candida was found. If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned a...
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@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 -
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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By knitty kitty · Posted
Blood tests are affected by what you've had to eat in the previous day or two and any vitamin supplements you've taken in the past month or two. If you have been taking vitamins before the time of the blood test, the vitamins supplements could mask a deficiency. So get the tests before supplementing, or allow eight to twelve weeks for the supplements to wear off. The thing with blood tests is that they measure what is in the blood, not what is stored inside organs and tissues where vitamins are actually utilized, and may miss subclinical deficiencies. In times of shortages, the brain can order cells to release their stored vitamins into the blood stream in order to keep important organs like the brain and heart functioning. Overall, getting blood tests for deficiencies is a good idea if it's available to you. If you're deficient in any of the B vitamins, take a B Complex with all the B's in it. The eight B vitamins work with one another like an orchestra. Supplementing just one can throw the others off. -
By Shining My Light · Posted
Thank you @trents! This is all sound advice. In 2022 I did have a biopsy done with the EGD: SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY This would have been when the candida was found. If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned about Villous atrophy however they were not looking for that particularly. Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist. Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone. I see why it would be a “gluten challenge” since eating 4-6 slices of bread daily is a challenge to do. 😳 I would replace that with cake 🍰😉
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