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Recent Activity
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- Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease21Pain in the right side of abdomen
Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weeke... -
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- Scott Adams replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1how long does it take for the genetic blood test for celiac to come back?
Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, ... -
- knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease21
Pain in the right side of abdomen
@Heatherisle, You're not a bother at all. What "Vitamin B medication" is she taking? Is it just B12 and folate? All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients. All the B vitamins work together. Just supplementing one or two... -
- Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease21
Pain in the right side of abdomen
Hi Thank you, will tell her to do that- 1
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By Heatherisle · Posted
Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!! -
By Scott Adams · Posted
Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture. -
By knitty kitty · Posted
@Heatherisle, You're not a bother at all. What "Vitamin B medication" is she taking? Is it just B12 and folate? All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients. All the B vitamins work together. Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins. Doctors are undereducated about nutrition. Heavy sigh. This is worrisome. These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency. An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level. But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation). Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it. (Riboflavin gives it the yellow color.). I've experienced vitamin deficiencies which my doctors didn't recognize. When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac. I had Gastrointestinal Beriberi myself. I took over the counter thiamine hydrochloride at home and had health improvement within an hour. High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning. Apologies if I was curt. I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly. All I can do is tell people about what I learned on my Celiac journey. Have you visited my blog? Tap on my name, look for pull down menu Activities and go to blog. I do hope your daughter can get the nutritional support she needs. I'm very worried. Please keep us updated! -
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By Scott Adams · Posted
I think a key thing here would be to ensure that the prescription(s) she started taking are actually gluten-free, as some contain wheat starch. In the USA we have a site you can check, not sure about the UK, but possibly. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/
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