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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Before You Knew It Was Gluten...?
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35 posts in this topic

1) Yes. Eczema as a child and neuro symptoms.

2) No. I love baked goods. Never had stomach problems.

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1: Yes

2: Yes. After college (and being the sickest I have ever been) I moved to a small mountain town. I started dieting and lost 80 pounds and was only eating meat, veggies, and fruits. I realized that I felt amazing and continuted to eat that way. When I moved to Houston everyone always wanted to go out and I slowly got sicker and sicker until diagnosis about a year and a half after I moved. For the most part I've always preferred meats to carbs.

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I guess this is a two-part question:

1. Once you figured out gluten was the problem and you'd had some time to look back, did you find yourself remembering symptoms and reactions from long, long ago, and suspect you'd had a gluten issue for far longer than you'd originally thought?

And,

2. Did you notice that perhaps you unconsciously preferred a lower-gluten diet (just weren't that "into" wheat-based carbs), as if your body was trying to protect you with a natural disinterest or aversion?

Just curious. I'm looking back and realizing there were subtle clues...

1. OMG YES!! Actually, I have had gluten intolerance and/or celiac disease for over 30 years BEFORE being diagnosed at all. (by endoscopy and colonoscopy). My symptoms seemed widely varied and unrelated to each other. If I complained of fatigue I was told "everyone is tired", my gastro-intestinal symptoms were "irritable bowel syndrome" --I was to take Mylanta daily, and worst of all the itching that did not include a rash, breakout, or any visible signs was 'all in my head'. (and many many other symptoms, which apparently are attributed to celiac disease according to the helpful folks here at the celiac.com forum).

Going gluten free relieved the itching! That was the first and biggest, most noticable relief of any symptom and my main motivation for staying gluten free --no more horrible, burning itchy skin!

2. Yes again. I had lost interest in pasta almost entirely. I was no longer interested in pizza at all. It should be noted that I had not purchased bread in about 18 years, which does track back to a time of bad intestinal symptoms that led to some dietary changes. The real problem I had, pre-diagnosis, was that when I did have bread served to me at a restaurant or at someone else's house, I could not get enough bread and ate far too much, then felt ill later. But I did not make that connection at that time.

I would say that being diagnosed with celiac AND coming to this forum were huge revelations to me.

At the same time, when I was told of my diagnosis with celiac disease I was not really that surprised.

About 2 years before diagnosis I had experimented with cutting 'wheat' from my diet to relieve that itching skin.

As for subtle clues, I am really annoyed that no doctor in over 30 years even tried to figure out if any of my symptoms were connected in any way, or what they might mean. I was left to wander the Internet, reading medical websites, searching, always searching for some kind of answer. (I was not too far off, shortly before my diagnosis I had started researching Sjogrens Syndrome, which is not that different, just has some different symptoms.)

Also, I would tell you that I decided, on my own, to have a colonoscopy, as it is recommended for folks near my age. Also, I have had too many folks I know and love in treatment for various types of cancer --and at least colon cancer can be detected and cured if you are tested early enough. So, really my diagnosis was more or less accidental and would not have come about if I had not made this decision myself.

I would only add that I was never gravely ill, never hospitalized for any of my celiac symptoms. For that I am very thankful and I feel extremely sympathetic to those who have suffered severe illness and/or been hospitalized due to the celiac disease.

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1. Yes.

2. Yes. Very soon after what I think of as 'symptoms' start, I ended up unconsciously changing my diet's focus. I started avoiding the sandwiches and pasta that made up most of my diet when I was young and tended to eat a lot of Asian rice based or coconut based dishes. I never noticed feeling better or worse; these just tasted better to me.

And then my hubby would complain that we didn't eat 'normal' American foods anymore, I'd start adding in more pasta and sandwiches, start catching flus and colds again, and start gravitating toward rice dishes as I recovered.

It wasn't 100%, just a general trend. For example, brownies were not avoided at all, LOL.

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1) Yes. Even as a kid I remember my stomach hurting after eating donuts and other baked goods.

2) No. My diet before was tons of bread and pasta. Comfort was a big bowl of garlicky, buttery pasta or a piece of toast with butter. Snacks at work were crackers and pretzels.

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1. Yes. I was always very healthy throughout childhood and into adulthood until just a few years ago. My miscarriages were a mystery to my doctor as well as my husband and I but I would never have linked that to gluten. My stomach was always fine - no GI issues, either.

2. No. After eating gluten I never ever got sick that I can think of. Even on my gluten challenge for three months. I've loved baking my own breads, buns, etc. and making fresh pasta. Though bread was not a necessary accompaniment to meals, I enjoyed it as meals such as lots of kinds of grilled breads with toppings. It did not dawn on me that I had any gluten problems at all. The only reason I know it now is that my sister is gluten intolerant and I got tested. I was SHOCKED.

I meant a resounding NO for #1 question. Not yes!

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Yes on number one. I've had a wide range of health problems for about 10 years, and all the specialists I went to weren't able to offer a solution, and I didn't get any relief until I stopped eating gluten. But looking back now I can see symptoms stretching all the way back to childhood.

Definitely no on number two. I had stomach issues for years, so what did the doctor suggest? That I eat bread and crackers to help settle my stomach. Sigh...

Like others have said, I absolutely craved bread and pasta. It's the only stuff that satisfied me.

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Loved reading all these responses!

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1. Definitely yes. This (still not diagnosed but strongly feel that this is it) will explain so much. Like getting pregnant while on birth control pills. Like the fibromyalgia symptoms, the arthritis symptoms,and so much more. I had menstrual problems, a miscarriage, migraines, anemia, blah, blah, blah.

2. Also yes. I would bring home the bread from my school lunch sandwiches. I grew up in Bangladesh and ate rice most week nights. As an adult I've experimented with many alternative diets and always felt better and lost weight while on them. Related to the ability to process dairy, I gravitate to choices low in lactose. My preferred breakfast was cold rice cereals or oatmeal.

Like many, I was also addicted to wheat products and coffee. It would be pizza and coffee or caffinated drink. Bagel and coffee. I would cycle between a gluten rich diet and greatly gluten reduced. I tried dozens of times to kick my coffee but would always return and I can see a link to the amounts of gluten. I have been a rice 3x's a week girl. Pasta only once or not at all, but pizza (homemade) every Friday, thin crust.

I've often made myself take vitamins because I have always felt so much better with them even though I frequently had a nutritionist tell me that my diet provided adequate vitamins and nutrients and that in her opinion I was harming myself.

My only thought, based on my natural diet choices is that I have avoided potatoes but not tomatoes, so I wonder about nightshade.

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1. Yes. I remember the most depressed time of my life was on a student exchange trip to Italy, where I ate nothing but pasta and dairy. I was so miserable. I was also miserable traveling to Ireland where we ate lots of soda bread. I thought that I just didn't do well without a lot of veggies in my diet (so I went vegetarian for a time, but was unhappy without meat). I knew I wanted to eat mostly meat and veggies, but I could never figure out how to make that happen; my family ate out at restaurants a lot when I was a kid. I also remember as a teen I had what I called "the mystery disease" where I would sometimes have bouts of diarrhea, which would then clear up when I had my period. I could never figure out what triggered it. Looking back, it's embarrassing that I didn't ever think to get tested for celiac disease, and so didn't get diagnosed until age 29.

2. Yes. I was definitely never into breads and such. I liked cookies, but never cakes, breads, muffins, etc. Even as a kid I preferred veggies and meat, not crackers, pastries, breads, etc. I read a magazine article about the paleo diet when I was 16 and thought it looked great (but back then it was too extreme, eat elk, kind of stuff).

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