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- Marky0320 replied to Marky0320's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2CVS (Cyclic vomiting syndrome)
I'm investigating the possibility of having celiac disease. My kid has Coffins Lowery syndrome, a rare form of Austism, and constantly has these CVS episodes. We suspect it could be related to Gluten sensitivity or celiac. We just started the diet last week, and we'll keep an eye on any improvements. -
- Alibu replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Waiting on biopsy after positive bloodwork, but also not really believing this is real
@Scott Adams thank you again! You definitely 100% get it!! It's so helpful to know that what I'm going through is normal and part of the process. My endoscopy just got scheduled for June 10 (I'm going to be traveling or else they could have gotten me in earlier) so I have 2 more weeks of eating gluten. I'm assuming I should just go to the endoscopy... -
- trents replied to NightRaven92's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms1I am wondering if my symptoms are Celiac Disease related..
Welcome to the forum, @NightRaven92! The symptoms you describe definitely align with celiac disease or at least NCGS (Non Celiac Gluten Sensitivity). That, and the family history of celiac disease, certainly warrant being tested for it. The first stage of diagnosis involves blood tests looking for antibodies that are more or less specific to celiac disease... -
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- Scott Adams commented on Scott Adams's article in Gluten-Free Foods & Beverages5
Top Brands of Gluten-Free Coconut Water
I understand your concern—gluten sensitivity and cross-contamination can be really tricky to navigate. Since coconut water is naturally gluten-free, the lack of a label might just mean Costco hasn’t gone through the certification process, not necessarily that it’s unsafe. However, if their facility also handles gluten-containing products, cross-contamination could...- brands
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I'm investigating the possibility of having celiac disease. My kid has Coffins Lowery syndrome, a rare form of Austism, and constantly has these CVS episodes. We suspect it could be related to Gluten sensitivity or celiac. We just started the diet last week, and we'll keep an eye on any improvements.
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@Scott Adams thank you again! You definitely 100% get it!! It's so helpful to know that what I'm going through is normal and part of the process. My endoscopy just got scheduled for June 10 (I'm going to be traveling or else they could have gotten me in earlier) so I have 2 more weeks of eating gluten. I'm assuming I should just go to the endoscopy and start going gluten free as soon as it's done? Or should I wait for the biopsy to come back just in case they have to repeat something?
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Welcome to the forum, @NightRaven92! The symptoms you describe definitely align with celiac disease or at least NCGS (Non Celiac Gluten Sensitivity). That, and the family history of celiac disease, certainly warrant being tested for it. The first stage of diagnosis involves blood tests looking for antibodies that are more or less specific to celiac disease. If the blood antibody testing is positive, there is usually a second level diagnostic procedure for confirmation involving an endoscopy/biopsy of the small bowel lining, looking for the damage caused by celiac disease. So, when you go to your appointment, I would suggest approaching your doctor this way to simplify the experience: 1. For six weeks I have been experiencing stomach cramps, diarrhea, feverishness, headaches and joint pain when I consume wheat products. 2. I have relatives with celiac disease and other autoimmune disorders such as Hashimoto's thyroid disease. 3. I would like to be tested for celiac disease. Would you be willing to order the TTG-IGA antibody test and a total IGA test? TTG-IGA stands for "Tissue Transglutaminase Immunoglobulin A". Total IGA is also known as "Immunoglobulin A (IgA) test" (Note: the TTG-IGA is the "centerpiece" of celiac antibody testing. There are others but this one is the most important and the most popular one with physicians. But is also very important to have total IGA checked since if you are IGA deficient, it will produce artificially lower TTG-IGA scores and possible false negatives for this one and other IGA antibody tests as well.) It's very important that you not begin cutting back on gluten consumption before the antibody test blood draw.
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By NightRaven92 · Posted
Hey so on June 18th next month,I made an appointment next month with my doctor,because I think what could be causing my symptoms,is related to Celiac Disease. Here is my symptoms & stuff..so anyway autoimmune disease runs on my mom's side of the family. My grandma has an autoimmune disease related to her thyroid,& my aunt has Celiac Disease. I have been having my symptoms for almost 6 weeks now,from what I have noticed anyway. My symptoms are:Stomach pain/cramping,chronic diarrhea,I will feel feverish out of nowhere,I get alot of headaches & pain in my joints,& I noticed that literally after I consume anything with gluten in it,I will get nausea,sick to my stomach,pain in my abdomen & around my stomach,& not to mention the diarrhea that can often come out as very painful afterwards,if I consume gluten foods. I have not felt well in what feels like forever & that's of course why I made a dr appointment. Anyway I could really use some advice on this & how I could maybe bring my symptoms up with my dr without confusing her too much..thanks in advance.. -
Welcome to the forum, @Marky0320! Simple nausea and emesis is common with celiac disease when gluten is ingested but I have not heard of a connection between CVS and celiac disease per se. Are you asking this question as one who has already been officially diagnosed with celiac disease or as someone who is investigating the possibility of having celiac disease?
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