Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My Story
0

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

1

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,096
    • Total Posts
      920,334
  • Topics

  • Posts

    • Awok, Welcome to the forum.  Have you considered trace gluten?  Here is a study on the topic: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/pdf/1471-230X-13-40.pdf It could explain why you felt good for a while.  I personally was glutened badly last summer.  I have no idea what got me.  I suspect either a prescription medication or one gluten free product (not certified).  I ended up on a whole foods diet and avoided even certified processed gluten-free foods including grains until I was healed (three to six months).  
    • I've had a range of symptoms in the last 2 months and in the past few weeks I have discovered that my TTG abs (igA) levels were 41 (my igA tests were fine). The doctor said that he is pretty much certain that it is celiac disease and I am awaiting an endoscopy to confirm it.  Before I found out that my TTG abs (igA) levels were high, I noticed that my body was reacting really badly to dairy products. I went on an elimination diet and stopped all gluten and dairy products and felt much better. I carried this on after my results and thought that I must have developed a dairy intolerance due to my celiac. 2 days ago I accidentally consumed a glass of wine which I thought was dairy free but it contained Milk. I have not had any gluten.  I am currently in the middle of a flare up. All of a sudden rashes have started to appear on my hands and my anxiety has returned (usually not a anxious person). No diarhhoea, vomiting or digestive issues. I am currently suffering from muscle twitching, rashes predominantly on hands and feet, brain fog, pins and needles/numbness on hands, feet and arms. However, I have been tested for milk allergy and this came back negative. Is it possible that it is dairy that is causing my symptoms/autoimmune reaction and could this be a reason for elevetated TTG abs (igA) levels. Or has the doctor only picked up my celiac and missing something else. If it was dairy intolerance then I would have digestive issues but I don't seem to have any. Could it be the casein protein?  Anyone been in a similar situation or can anyone provide some insight? 
    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
    • So, I know I'm obsessing but...... University of Chicago Celiac Disease Center website says any total IgA result over 20 won't affect the celiac test.   If this is so,  I'm still confused as to what a weak positive ttg iga means even though her result was barely in this category.  Why bother having a weak positive anyway?   I just don't get it and our doc is on vacation so I won't know what he'll recommend for another week.  I'll be finding out this week if we can see a GI without a referral. Our lyme doc (she's had lyme, may still have it, like I said it's a long story) is having her do an IgG wheat test but I don't think that has any bearing on celiac does it?    
    • Hi!  I've had good luck at the Minnesota state fair because most food booths are only doing one thing so there is no cross-contamination. For example: french fries or chocolate covered bacon or Indian kebabs.   But I live in California and I am heading to the state fair today! Does anybody have any great food suggestions that are definitely gluten-free there? Thanks, Celiac C.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,132
    • Most Online
      1,763

    Newest Member
    Feralgurl
    Joined