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My Story
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-----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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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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