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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.

My Story
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5 posts in this topic

-----s. Back from nowhere!

In my second year of college (at 19 That would be 1982)., I fell ill with mono-nucleosis. I slept for up to 20 hours a day and was still tired. Months later, my blood tested normal and I tried to return to college. Sleep still did not refresh me.

Then, I came down with pleurosy ("The old lady's diesease) and spent more time on the couch. My lungs were so painful and I so weak that I could not

open the door of the medical clinic. My sister told me that I was not good for much right then, but that God loved me anyway. I returned to college foggy and fatigued for the second quarter of the year and finished out the year with my usual grades.

I tried a physical conditioning class hoping

that intense excercise could pull me out of my slump, but I remained tired and foggy. Excercise just further exhausted me and there was no improvement. I noticed I had sensitivities to smoke and perfume smells. My

lungs would feel painful if I took them in. I also noticed my abdomen swelling up and down. I just thought maybe I was putting on some weight. I would sometimes eat my lunch from home and eat another lunch. I would just select a new group of friends withwhich to share the second lunch.

The next year I began to school at a the U of M. The walks between classes were longer and I had a hard time to make it to classes on time. My inner fog continued. But yet I managed to pull out a 3.8 grade average.

A couple of years after mono, I heard comments that Diana is just not the same after her illness. I left college unfinished and pursued a job as a nursing assistant. I hoped the active labor would help clear up the fog and fatigue. I spent much of the weekends in bed with my feet up.

Meanwhile, my husband and I married and began to long for children. My pregnancies caused extreme nausea, so I felt like a martyr, but five of them

ended very well with the birth of a healthy child. After my third child was born my mother said that she could run circles around me. Everything I did,

I did with a feeling of lethargy.

After my forth child was born. I remember home schooling, while lying on the couch. I usually could stay awake, but felt too weak to sit or stand to

do school work. I continued getting meals and doing work, but it was difficult to sit and stay awake. The fogginess was continuously upon me. I worked more and more stringent with my diet and tried some supplements, butI could not get my energy up.

I prayed to meet a certain chiropractor (That is a whole story in itself)as I passed by her office. I wondered if they might have any help for me there. I would not go in. However, after she and I met at homeschool gym and became friends, I discovered that she may be able to help me.

The first time I was tested she discovered my metabolism more out of whack than those she had tested after chemotherapy. Many people would be unbalanced on 3/5 scales, but my inbalances totaled 5. On my new program I

went from a size extra large to small dress in one week. I felt like a bird free from its cage. I began

accomplishing things I had been wanting to do for years. I soon had my fifth child after 3 years longing for her to come. I did not always abound in energy, but sometimes I did and I grew steadily more clear headed. I had always even in elementary school felt shaky, but liquid magnesium took that away. Once, I even heard a woman exclaiming that Diana was such an energetic

young woman!

My friend the chiropractor had her own family and I wanted her to have her time for them especially since she had a new baby. She had her husband chiropractor take over my work, but I really wanted a woman doctor. The cost of the needed supplements was high and insurance will not cover it. There seemed no hope for me to ever get off them. I quit going hoping that what we had done in two years could carry me and I could handle the rest. We continued eating an organic, natural food diet from scratch. We even started raising our own chickens and dairy goats.

I can't say when fatigue really overtook me again. I even remember sometime in the past `10 years when I felt mysteriously energetic for a while. I got more and more into organic foods, growing my own food, and natural remedies. However, I went through life trying to conserve energy, dragging my feet, and we never had the 6th child we so desired. Three years ago I really began to despair. I would fall asleep between words when I was

giving a spelling test. "There is nothing left" became my constant refrain.

Inspite of this, I and my 5 children managed a large garden in the summer and homeschooled in the winter. That summer two years ago (2007) I mostly despaired while the children worked. My dentist told me that people with as many dental problems as I , usually had a chronic diesease. Any natural remedies which had worked in the past, would not work anymore. After this

very unhappy summer my husband finally said that I better get help from a chiropractor again.

So ten years older I returned to my friend. My imbalances totaled three. My body had difficulties handling sugar. The cells within were not absorbing oxygen freely from the blood stream. The potassium and sodium levels were not in good proportions. I changed my diet slightly, I ate a little more protein spread evenly over my three meals, less carbohydrates,

and a bit more fat a little per meal. I also began to take the chiropractor's supplements. I had hope, and my family had hope, and my life was returning to me.

Sometimes I have so much energy that I do not know what to do with it. My overall energy improved and the fog cleared out of my head. No, It isn't all perfect and I am extra sensitive and prone to set backs, but compared to "there is nothing left" this is exciting. Yet, I grieve for lost years, which aren't exactly lost. The children are growing up nice and having their own ambitions and accomplishments. I know the Lord has a plan to restore those years and use it for the good of all of us.

These lines were all written before we discovered by genetic testing that I have Celiac and intolerance genes. I am much better with the supplements, but still some piece seemed to be missing. Well, now we think we found it. I am so glad to be able to make a big difference in my own health by avoiding gluten. I only wish my family would help me with it.

I recently learned that my blood pressure had been in 2007 as high as 180/115, My pulse was almost undetectable at times. I remember a nurse having trouble with that in my tiny second grade arm. Other symptoms included heavy periods, fluctuating weight gain and loss, water retention, intestinal irritablility, frequent urination, extreme thirst, skin numbness and temperature flushes. My blood pressure would plummet when I went from laying down to standing. In other words I was in serious trouble physically.

Now, I think we are really to the root of all of that. I expect that I will have some ineviditable consequences of living with 30 years of gluten intolerance or more. I expect to be amazed at the design of the body going forward and heal as best I can.

I hope you will all experience hope and healing. But mostly that you will turn to the Creator in your troubles and find eternal lfe.

Diana

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Congratulations Diana, I think you have found your answer! The path to finding out out about celiac is kind of slow for many of us. It seems like doctors often don't think to test for it although the symptoms seem obvious in hindsight. Maybe that will change in the future. Awareness is slowly growing. It seems often enough we are "diagnosed' by someone other than a doctor. My sister figured out my celiac, not my doctor.

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My tests were negative but there is no doubting that I look and feel better than I did two months ago. Most doctors will not take the time to look at your records and see how it all adds up. I agree, GFinDC. It took talking to my Grandma and aunt who are probably sufferers themselves, while visiting my cousin who has Crohn's at the hospital, for me to even consider gluten intolerance being my problem. That was at the height of my sickness.

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My tests were negative but there is no doubting that I look and feel better than I did two months ago. Most doctors will not take the time to look at your records and see how it all adds up. I agree, GFinDC. It took talking to my Grandma and aunt who are probably sufferers themselves, while visiting my cousin who has Crohn's at the hospital, for me to even consider gluten intolerance being my problem. That was at the height of my sickness.

Yep, family history should be looked at for sure. One of my younger brothers died of Crohn's complications, and had celiac as well. Two uncles with colon cancer also. Two sisters probably have celiac or NCGI. Darn genes sure do have an effect! Some of the celiac genes are associated with other autoimmune diseases too.

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Your story really affected me because the start of it is eerily similar to mine. I got mono my senior year of high school and going into college was always tired and had GI issues. Luckily I was diagnosed last summer, only about a year into my symptoms.

You will see your energy improve so much on a gluten-free diet. You'll be amazed.

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      I'm afraid to say I don't really think it is normal Richie, but I do recognise the shakiness and nausea you speak of, as I've been there. (Pre-diagnosis), my shakiness was so bad, my muscles were very weak and couldn't walk without the aid of a walking stick, my ferritin levels were so very, very low and had to take iron tablet every day for months. My hair was falling out, I had really bad digestional issues, amongst other things. I think you should lay off the coffee and the barley drink and all gluten/wheat, because until you do, your body is not going to repair itself properly. Damage is done to the gut even if you don't have gastrointestinal issues, as not all coeliacs have symptoms, but the damage is still being done to the gut, which in turn can cause osteoporosis, other auto-immune diseases and also cancer.  If you ever get a test for coeliac disease, you need to be eating gluten/wheat for at least 6 weeks on a daily basis in order for it to set of the immune response in your body, which will cause a positive result. (Blood tests are less reliable than endoscopy with biopsies - bare this in mind).  You may decide of course not to have a test for coeliacs because of how ill it could make you feel by eating gluten etc. In which case, you need to avoid all gluten and wheat forever! (By the way another symptom of coeliac disease is dairy/lactose intolerance- which could be causing your nausea). Sorry to be blunt, but you need to know the dangers and there's no point in sugar coating it. What is your fasting blood test for? 
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