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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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    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
    • So ok, I get the pain/bloating thing, but it still feels so crazy. But my god, I look 6 months preggers after dinner and 4 months the rest of the time. How long will this last?! I have not gained any weight but have to hide me belly now. I can hardly breath! Omg, that does take me back to pregnancy.  I had "acute marked focal duodenditis" a few weeks ago and an elevated DGP. the pain sometimes makes me seriously think I must be bleeding somewhere. It is actually worse then 3 weeks ago. Although many of the other glutening symptoms are finally vanishing. Even my mid and lower back is tender to touch. Sometimes it burns, aches or like someone is stabbing me in my side. My ribs hurt and everything is tender.  I am on protonix and fish oil. I have a prn for xanax which helps the pain (off market use for muscle relaxant).    I am fair skinned and notice a red under-the-skin discolored rash that comes and goes on my upper stomach. Sometimes it travels down one side. Not itchy. Almost like I can actually see the inflammation under my skin.  1) when will I stop looking knocked up?  2) Any other fair-skinned folks notice a purpleish-red rash on your bellies? It mostly goes away and comes back, which I tske to be a good sign. 
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