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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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Hi everyone,

After 22 years of living with my gluten allergy symptoms, I was finally diagnosed at 27 with a gluten allergy/intolerance. Unfortunately I have to wait a year until I can be tested for Celiac disease because I am in the process of immigrating from Canada to the UK to Ireland. Nevertheless, for now I am on a strict gluten-free diet and it has made such a difference in my every day life.

For this post, I want to share some of the major symptoms of my gluten allergy as the doctor's have not been able to make a connection until now.

Major Symptoms:

- Constant, debilitating, stomach aches: my grandad, dad, and brother all get stomach aches, so when I used to complain of them when I was little (started when I was 5) they just wrote it off as a "sensitive" stomach and never took me to the doctors. Over time the stomaches became worse and worse and finally at 18 I went to the doctor. He told me I had an ulcer (never actually checked for anything; just guessed). After months of pills without any results, I went to a new doctor for a second opinion. Without testing (again!) this new doctor guessed I had lactose intolerance. I went off dairy, but I would still get stomach aches after eating. I went back to this doctor who basically said, "I don't know." I gave up and just dealt with it for the next 8 years.

- No energy: A constant feeling of being tired. I would wake up in the morning feeling tired. After eating, I would have to take a nap because I just felt so exhausted.

- Infrequent BMs: It was not unusual for me to go every 2-3 days. After going gluten-free, I have gone once and sometimes twice per day.

- Allodynia (skin pain): Since around the age of 20 I developed a new symptom. I began getting what I called "skin pain" on my legs and arms. It started with small patches that would hurt for no reason for a couple minutes, into massive patches over my legs or arms that would last for days. The pain felt like someone was randomly jabbing needles into my skin. It hurt to touch - even a slight breeze would be excruciating. There was no rash or obvious physical sign. I went to the doctor for this and they said I had "Allodynia" (which means skin pain) and I had to get an MRI. They couldn't find a cause and told me it was just something I was going to have to live with.

- Migraines: Since being a teenager, I would get migraines all the time. My mom would just give me a tylenol and make me go to sleep. As I've gotten older though, they have gotten worse and more frequent. Finally when I was getting them once every couple of days, I thought I should go see my doctor. This is the doctor that eventually diagnosed me with a gluten allergy. She ordered an MRI (same doctor who was treating the allodynia) and they found a cyst on the pineal gland - which is apparently quite common and according to the neurologist, has nothing to do with my migraines. I was given migraine medication.

- Joint Pain: Arthritis runs in my family with almost all of my aunts and uncles and grandparents (on one side) having it. I was told by the same doctor who ordered the MRI that it was probably the beginning stages of rheumatoid arthritis. I was given an x-ray which showed no problems with my bones yet. She also did blood work which found that I had a non-specific "autoimmune disorder."

- Weight Gain: Since around the age of 19 I have put on almost 50 pounds. All the doctors told me that it was my own fault and that I needed to eat less and exercise more. Totally reasonable. I began eating very healthily, having a lot of veggies, fruit, lean meats, nuts and seeds, as well as dairy and things like pasta and bread. I kept track of calories and started going to the gym. While I would see some results at first, I always plateaued and then gained it back. This has been the most frustrating symptom because of the pressures for girls to be "thin"; and with thin = being pretty. I felt like no matter what I did nothing worked.

All of these symptoms were dealt with by doctors separately. Whenever I went in to talk about a specific one, I would try to tell them all my issues, but they just wanted to deal with "one at a time" not realizing they were all symptoms of one problem.

Finally after 22 years, I was diagnosed with a gluten allergy after going on self-prescribed gluten-free diet, charting my symptoms, reintroducing gluten and tracking symptoms, and then giving all the information to my doctor. It sucks that the doctors didn't think of it, but I'm guessing it was because they are not used to diagnosing gluten allergies in overweight patients - usually the major symptom for doctors is being underweight.

After reading numerous articles on gluten intolerance/allergies/celiac, I also put myself on vitamin supplements: vitamin d, vitamin b, and a multivitamin. As well as digestive enzymes with food, and probiotics every night before bed.

So what has changed after being gluten-free for the past 13 days?

Side effects:

- no stomach aches since the second day

- no skin pain

- one migraine on June 5th (possibly a sinus infection)

- very little joint pain

- more energy

- more frequent BM's

Crappy (but probably good) side effects:

- spots all over back and arms, and one on hand: I've read this is a result of gluten leaving the body.

- slight weight gain of 4 pounds: this one really sucks because I'm eating only whole foods, such as chicken, veggies, tuna, almonds, and fruit; as well as some dairy and coffee. I'm hoping this is a temporary weight gain because my body is healing and starting to get better at absorbing nutrients. But I am using myfitnesspal to track calories, so I don't go overeat.

Hopefully my experiences can help those of you who are suffering from a variety of seemingly unconnected problems. And while doctors are great, I've found that a lot of trying to figure out what is wrong with me has been through trial-and-error on my own. Doctors are trained to treat symptoms and sometimes it's hard for them to make the connection between a variety of "vague" symptoms.

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hi, wallflower, welcome to gluten-free land - it sounds like you are having success.  pretty amazing, huh?!  pretty much the same thing happened to alot of us before anybody figured to 'connect the dots' :blink: all the seemingly unrelated symptoms that i had were resolved just by removing gluten.   get tested - i know you said you have to wait - i was sure that i was improving on gluten-free diet but wanted to make sure so as not to miss something else (my doc tested me for a bunch of other things to rule them out)  if you haven't already, you might want to read the newbie 101 thread.  many find it helpful :)  

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hi, wallflower, welcome to gluten-free land - it sounds like you are having success.  pretty amazing, huh?!  pretty much the same thing happened to alot of us before anybody figured to 'connect the dots' :blink: all the seemingly unrelated symptoms that i had were resolved just by removing gluten.   get tested - i know you said you have to wait - i was sure that i was improving on gluten-free diet but wanted to make sure so as not to miss something else (my doc tested me for a bunch of other things to rule them out)  if you haven't already, you might want to read the newbie 101 thread.  many find it helpful :)

Hi, thanks! I will get tested for sure. I don't like things being unresolved, but I'm moving in two weeks, then I'll be in the UK for a couple weeks, then ending up in Ireland. So I have to wait until then unfortunately. But yeah, it is amazing that all of my issues were a result of one thing that can be fixed by diet! And as much as it sucks having this, I'm so happy because I'm finally feeling better after 22 years.

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