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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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beachbirdie

Mom Never Told Me I Was A Sick Baby...

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My mom just passed away a couple of weeks ago and I've been at her house going through some of her things. Among them was a little journal in which she was writing about me as a toddler, and a kindergarten report card that were very interesting...

Mom wrote that I used to throw up when I ate, and that I had a lot of intestinal problems that no one could figure out. I had unexplained fevers.

My kindergarten teacher wrote that she was concerned I was missing so much school because of a mysterious "bug" I kept catching.

I put that together with my current blood tests and genetic test, wondering now if gluten has ALWAYS been a problem for me.

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maybe so. do you also have dental defects?

i was a vomit-y baby as well, although i don't think i was sickly other than that. but i was the child who always had cavities and when i got braces at 15, i had to have something like 13 fillings because i had "pits" in my teeth. now i've seen professional articles about enamel defects that are related to celiac disease. that makes me think i've had this all my life as well.

my condolences on the loss of your mom - that's hard.

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((Hugs)) I'm sorry to hear about your mom. Best wishes to you.

I think you may be right. It's a shame celiac disease wasn't well known a few decades ago... I guess there are benefits to having the latest "trendy" disease; it's easier to identify it.

Take care.

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I keep trying to think back before I had symptoms. I keep remembering concerns way back. Fatigue was my greatest symptom. I remember laying my head on my desk in elementary school. I also remember extremely high white blood counts( without illness) that red flagged possible allergies. I remember anemia and urine tracing blood. I remember the enamel being absent from my teeth. Anyway, I don't know if I had colic or anything. Maybe I better ask Mom if it isn't to late. I do remember I was bloated3 month picture time atleast it looked like it in my pictures. Baby fat, or something else?

I guess we might never know. Sorry, for you loss and I hope you are as well as can be.

Diana

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maybe so. do you also have dental defects?

i was a vomit-y baby as well, although i don't think i was sickly other than that. but i was the child who always had cavities and when i got braces at 15, i had to have something like 13 fillings because i had "pits" in my teeth. now i've seen professional articles about enamel defects that are related to celiac disease. that makes me think i've had this all my life as well.

my condolences on the loss of your mom - that's hard.

Yes, funny you should mention the dental defects. I had a lot of decay as a child! ALL my molars got drilled and filled, and also I have some fillings on the sides where little pits formed and brushing should have protected. Thank you for your good thoughts.

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I keep trying to think back before I had symptoms. I keep remembering concerns way back. Fatigue was my greatest symptom. I remember laying my head on my desk in elementary school. I also remember extremely high white blood counts( without illness) that red flagged possible allergies. I remember anemia and urine tracing blood. I remember the enamel being absent from my teeth. Anyway, I don't know if I had colic or anything. Maybe I better ask Mom if it isn't to late. I do remember I was bloated3 month picture time atleast it looked like it in my pictures. Baby fat, or something else?

I guess we might never know. Sorry, for you loss and I hope you are as well as can be.

Diana

Thank you for your kind thoughts.Do ask your mom everything you can think of, before it's too late! I have had so many times over the last few weeks when I wanted desperately to ask mom about something, and now I can not. Some things I guess we have to wait until we are on the other side, where all will be revealed and pain and disease will not exist.

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((Hugs)) I'm sorry to hear about your mom. Best wishes to you.

I think you may be right. It's a shame celiac disease wasn't well known a few decades ago... I guess there are benefits to having the latest "trendy" disease; it's easier to identify it.

Take care.

Thank you for your thoughts. I also wish the disease had been better known back in the 1950's. Perhaps if we had figured out I had celiac, my whole family could have been looked at...I am waiting for results from a pathologist who just did a limited autopsy on my mom, he thinks she had lymphoma and perhaps an intestinal lymphoma. If that turns out to be the case, we will have a really solid answer to some family health mysteries, and enough information to protect my kids and grandchildren going forward through time.

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My mother told me that I was a terrible baby. It kind of hurt my feelings. Maybe that's why your mother didn't say anything. It isn't really a nice thing to tell your child. She told me that all I did was cry and it drove her crazy. She had my two brothers to care for too. It must have been very hard. I also have dental defects and missed a lot of school. I think I got progressively worse until I finally got diagnosed. I lost my mother in 1981 and I still dream about her sometimes. I am sorry for your loss.

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    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
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