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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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    • So far I've had no problems with gluten-free Cherrios and I've been eating them since they started producing the gluten-free line. Generally I will have some reaction to gluten if there is contamination in the product I'm eating. But I'm sure someone has gotten a bad batch or is simply very sensitive to trace amounts of gluten. It's up to each individual to decide whether you want to chance trying them. The article mentioned by squirmingitch sheds light on the problem with anything listed as gluten-free. Contamination can occur at any point in the harvest or processing, and testing may miss it. I also eat Chex, Nature's Path cereals and have tried other brands w/o any problems. I do miss gluten-free Rice Krispies, they made for a nice addition to meat loaf, shame they discontinued the item.
    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
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