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Parents, Friends and Loved Ones of Celiacs
Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.
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Recent Activity
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- Alibu replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms10Waiting on biopsy after positive bloodwork, but also not really believing this is real
MY BIOPSY WAS NEGATIVE!!! HOW?? Obviously I'm thrilled it was negative, but I'm so confused now. -
- trents replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms16Virus, celiac disease or both?
First, I hope you know that celiac disease is not an allergy to gluten. It is an autoimmune disease reaction that is triggered by gluten consumption. Allergies don't trigger immunes responses whereby the body attacks it's own tissues but this is what is actually happening with celiac disease and what distinguishes celiac disease from NCGS (Non Celiac Gluten... -
- Shining My Light replied to Shining My Light's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms16Virus, celiac disease or both?
@trents This info is so helpful and I’m absorbing it all. My blood tests were almost a month ago and I feel like it came out of left field. I never even heard of term “silent celiac.” I thought celiac gave you violent diarrhea when you consumed a tiny bit of gluten. That’s it. Not that it damages your small intestine, not that it made the absorption of vita... -
- trents replied to terrymouse's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5
Probably celiac but also confused
Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some... -
- terrymouse replied to terrymouse's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Probably celiac but also confused
I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
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MY BIOPSY WAS NEGATIVE!!! HOW?? Obviously I'm thrilled it was negative, but I'm so confused now.
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First, I hope you know that celiac disease is not an allergy to gluten. It is an autoimmune disease reaction that is triggered by gluten consumption. Allergies don't trigger immunes responses whereby the body attacks it's own tissues but this is what is actually happening with celiac disease and what distinguishes celiac disease from NCGS (Non Celiac Gluten Sensitivity). Second, though I think your question other question has already been answered. Since the tTG-IGA antibody test is only 90 to 98% specific, elevated values for this test will be have non-celiac disease causes in 2 to 8 out of 100 cases. I realize that is addressing your question in a general way but the non-celiac causes have also be covered in this thread, though not to the granularity of giving percentages to each non-celiac cause. Not sure why that is important to you at this point. First, you need to separate whether it is due to celiac disease or not. If not, then start sorting out what the other cause is. But as I stated above, by far the most likely cause is celiac disease so that is the place to start. Sure, we get it. Having to eliminate gluten from your life spells huge culinary and social changes and challenges. But it's still better than facing cancer or host of other diseases that less definitive antidotes and outcomes. With celiac disease you don't even have to worry about taking medications because, as of now at least, there are none. The treatment is very straightforward. Avoid gluten.
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By Shining My Light · Posted
@trents This info is so helpful and I’m absorbing it all. My blood tests were almost a month ago and I feel like it came out of left field. I never even heard of term “silent celiac.” I thought celiac gave you violent diarrhea when you consumed a tiny bit of gluten. That’s it. Not that it damages your small intestine, not that it made the absorption of vitamins and minerals compromised. None of it. To me it was just an allergy to gluten. My close family and friends think I’m crazy for even giving it a second thought because “no symptoms, no worries.” It’s unfortunately hard for me to let something go that I don’t know enough about. Therefore all the research came into play. I’m glad I’ve joined this forum. It’s more helpful to talk things through with people than looking through cases studies without being able to ask questions. I’m on the fence right now on what my odds are. I don’t know enough about the other variables and probability of why a TTG level would be raised. The questions I still have lingering are: -what are the odds that these levels are raised in something other than celiac? For instance of all positive TTG tests that have been done how many of those are from celiac? I know it’s a big ask but to me that’s something that is super unclear to me. - what are the TTG levels in something other than celiac? (I.e. in things like type 1 diabetes, rheumatoid arthritis, hepatitis, viruses, NCGS, etc, are the TTG levels the same as those that have celiac, higher or lower?) - even if it’s not celiac and it’s NCGS, if my body is “responding” to gluten, and creating antibodies to it, wouldn’t that be something to avoid anyway? Maybe not doing the damage but still my body doesn’t like it? -could I really possibly follow a gluten free life as close as I follow Jesus? Definitely understand now that key piece of needing an EGD. It’s looking at things from another angle. Also with all the other associated blood work, more angles. I would like to say please forgive me if any of my questions seem as though I’m trying to be difficult. Making lifelong decisions is hard. I do have decisions to make as you have said. I clearly will need convinced in order for this to be something to be committed to. I would hope that there will be something in the future that comes out that will offset gluten in bodies the same was it does for sugar in diabetics. My compassion is far greater for anyone carrying the burden of celiac than it was a month ago knowing what I know now. I appreciate you helping me work this out, in real time. It’s been lonely up to this point. Only me talking about what I’ve read to people who don’t think I should be bothering with it any further. 😆 So thank you! 🙏 -
Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
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By terrymouse · Posted
I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
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