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- trents replied to Marie70's topic in Parents, Friends and Loved Ones of Celiacs6My Adult daughter is blaming me for her "possible" Celiac disease.
@Marie70, it is very important that your daughter not begin experimenting with eating gluten free until all testing for celiac disease is complete. Doing so will invalidate the testing. Normally, the testing involves two stages. The first stage is blood antibody testing as per the article linked by Scott above. As you can see from the article, there are a... -
- Klsdurbin replied to Liamclarke's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease5Did I outgrow celiac
No!!! Celiacs disease does not go away. You can’t outgrow it, and if all proper diagnostic procedures (blood test and endoscopy) were followed when you were 8, it’s almost impossible to be mis-diagnosed. stoms and reactions to gluten do change over time, but the fact you have celiacs does not. I think that a lot of people misunderstand tha... -
- Klsdurbin replied to Sandi20's topic in Gluten-Free Foods, Products, Shopping & Medications5
Gluten Free Daily Vitamins for Kids w/ Celiac
Inovera offers a supplement called Forvia that they claim is formulated for better absorption for those with GI issues including Celiacs Disease. I would love to hear if anyone has tried it and thinks it might be good. -
- cristiana replied to Marie70's topic in Parents, Friends and Loved Ones of Celiacs6My Adult daughter is blaming me for her "possible" Celiac disease.
You are most welcome, Marie. Thank you for getting in touch, because this sort of post will be seen by other parents who find themselves in this position, I am sure there are many. And as I say, in the long run, I am sure your daughter will be sorry for what she said. I remember having a go at my dear Mum when I was in my twenties about something... -
- Wheatwacked replied to MomofGF's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms20Not sure if this is Celiac or just a gluten-free intolerance
Are You Confused About Your Celiac Disease Lab Results? Some people test negative but have a positive biopsy, others test positive but negative biopsy. This is why it can take years and misdiagnosis of other diseases that Celiac Disease can mimic. The above link is a good read with real life examples. Something I find interesting is that in 19...
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@Marie70, it is very important that your daughter not begin experimenting with eating gluten free until all testing for celiac disease is complete. Doing so will invalidate the testing. Normally, the testing involves two stages. The first stage is blood antibody testing as per the article linked by Scott above. As you can see from the article, there are a number of tests that can be ordered when diagnosing celiac disease but most physicians will not order a complete panel. At the very minimum, your daughter should request two antibody tests, "total IGA" and "tTG-IGA". The tTG-IGA is considered the centerpiece of celiac disease testing but if total IGA is low (i.e., if she is IGA deficient), this will result in an artificially low tTG-IGA score and possibly a false negative. Many general practitioners are not very knowledgeable about celiac disease testing so we have found we have to be a little assertive in order to get proper testing done. I don't know under the relational circumstances how much input you will have with your daughter about these things but I thought I'd pass the info on to you anyway. The second stage of celiac disease testing involves an endoscopy with biopsy of the small bowel lining which is then sent to a lab for microscopic analysis. This checks for damage to the small bowel lining and is confirmation if any of the blood antibody tests are positive. It is also considered to be the gold standard of celiac disease diagnosis. Again, should her antibody testing be positive, your daughter would still need to be consuming gluten until after the endoscopy/biopsy is complete. -
No!!! Celiacs disease does not go away. You can’t outgrow it, and if all proper diagnostic procedures (blood test and endoscopy) were followed when you were 8, it’s almost impossible to be mis-diagnosed. stoms and reactions to gluten do change over time, but the fact you have celiacs does not. I think that a lot of people misunderstand that the goal to managing your celiacs is to eventually test negative for celiacs. This does not mean it went away, it means that your gluten-free diet is working and you’re no longer producing the anti-bodies that will wreak havoc on your health. if you can access the medical records from when you were 8 and have a GI doctor review them, I would highly recommend you do this.
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Inovera offers a supplement called Forvia that they claim is formulated for better absorption for those with GI issues including Celiacs Disease. I would love to hear if anyone has tried it and thinks it might be good.
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You are most welcome, Marie. Thank you for getting in touch, because this sort of post will be seen by other parents who find themselves in this position, I am sure there are many. And as I say, in the long run, I am sure your daughter will be sorry for what she said. I remember having a go at my dear Mum when I was in my twenties about something and then apologising, saying, "I don't know how you put up with me." I can't remember her exact words but it was something along the lines of, "I used to say things like to my Mum. Now it's my turn [to be on the receiving end]!" 😂 Although it isn't very nice to be on the receiving end, it is good your daughter feels safe to say these things to you. We look forward to hearing from you again in due course.
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By Wheatwacked · Posted
Are You Confused About Your Celiac Disease Lab Results? Some people test negative but have a positive biopsy, others test positive but negative biopsy. This is why it can take years and misdiagnosis of other diseases that Celiac Disease can mimic. The above link is a good read with real life examples. Something I find interesting is that in 1980 or so a new diagnosis was created, Non Celiac Gluten Sensitivity, only 10 years after Norman Borlaug won the Nobel Peace Prize for creating our modern wheat and the Green Revolution.
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