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

34 & Just Awakening
0

11 posts in this topic

Hi everyone,

I'm new around here & thought I'd share my tale. I'm 34, & have always suffered from chronic pain, to the point of being rendered incapacitated and unable to work at times. I have suffered a host of symptoms, such as insomnia, cognitive disfunction, bowel problems, cankers, migraines, allergies, etc, since I was a child. Doctors never knew or even seemed to care that I was so ill. Finally, in '97, I was diagnosed with Fibromyalgia. I went through the stages of denial/grief/acceptance, then set about coolly researching my newly found illness. But wait, something didn't seem right to me. I had joint pain, & there was no mention of that in the literature. Things weren't adding up. Still, I soldiered on, changing my lifestyle habits in the hopes of improving my condition. In October, I met a wonderful man online, who took it upon himself to listen to me & delve further than I had. He listened to me complain about how I felt I must have an allergy to wheat, & how I had pretty much eliminated it from my diet a year ago. He one day said, "I think you would benefit from a gluten free diet." This set the ball rolling. After much research & adopting the gluten-free diet several months back, it's painfully, clearly obvious that I had Celiac Disease. Why no doctore had ever been able to pinpoint this leaves me feeling more then a little angry and frustrated. What's more, my mom has been severly ill all her life with the same kinds of symptoms as me. Now, at the age of 58, she's doing the gluten free diet & feeling stronger then ever. This man who helped me learn of my condition is now my boyfriend & I credit him with saving my life. I'm feeling stronger all the time, though I have little "brushes with gluten" it seems on a weekly basis.

Here's to better health!!

AngelMy Webpage

0

Share this post


Link to post
Share on other sites


Ads by Google:

Angel, welcome to the site and thanks for sharing your story. It is frustrating that diagnosis is delayed for so many people. That's why I take every opportunity (without, I hope, being obnoxious!) to talk about celiac disease and how it manifests in weird ways. So many people are horrified at the thought of giving up wheat that they are in denial about having it, so I emphasize how there are gluten-free alternatives to wheat-based goodies of every type. I'm glad, too, that you met an understanding gentleman through your reaching out online--how lucky we are to have the internet and sites like this one! I don't think without the Internet I ever would have discovered what was wrong with me. It's very empowering. Here's to good health for us all! :)

0

Share this post


Link to post
Share on other sites

I figured out my celiac diagnoses on my own too. My doctor said I had irratible bowel syndrome and basically gave me no hope. Funny how when I went off gluten, I became much healthier....

0

Share this post


Link to post
Share on other sites

Angel, I also figured out my own diagnosis, with the help of Danna Korn and her son whom I saw on TV and decided to request testing. My doctor didn't believe I had celiac but at least he decided to test me and was totally amazed that I had positive blood tests, and even more amazed at the biopsy. This was after a lifetime of problems and at 67 years I was finally diagnosed. I hope you can really adjust to the gluten free diet without problems. I was thrilled to find out that all of those problems really had an definitive etiology. Most doctors over the years told me I was a real hypochondriac. And I really understand the many Celiac's who have been accused of being a little nutsy. Enjoy your new lifestyle. I certainly do. I hope eventually our descendants can be diagnosed early and without problems. Shirley

0

Share this post


Link to post
Share on other sites

Hi Angel - I was soooo glad to read your story as I too have gone undiagnosed for so long that I'm not even sure how I should feel once I get better! My last doctor, a gastroenterologist, by the way, summed up my symptoms this way - "well, you're not losing weight so I wouldn't worry too much!" Helpful, huh? :D

Anyway, my mother was the one who suggested celiac disease and once I started delving into the subject, I found that most of the problems that I've been experiencing all these years fall into this category.

So on July 1st, I started a gluten free diet and of course, I expected immediate recovery (hey, that's my personality type - what else can I say! B) ) and for two days, I honestly felt free of most of what I call "my attacks".

Then this morning, I drank a cup of coffee and seemed to have triggered something (or could it still be reactions to things I ate prior to going on this diet?) :huh:

In short, I think this is the way I'll have to eat the rest of my life and I know that at my age (59), its going to be very hard to retrain my eating habits. I think I will be needing all of your help a lot.

At this point, I am very scared to eat anything as I'm not sure what I can eat without accidentally ingesting gluten - so I'm sticking with fruits and vegetables until I can absorb all this new information.

Thanks for listening and although I'm sure you're not the one responsible for this website, I'm so grateful for finding (all of) you!

0

Share this post


Link to post
Share on other sites




Thankfully we have our answers - now it's our jobs to take this info out to those who don't know about celiac disease.

Just this week the National Institutue of Health ended a 3 day conference regarding the under diagnosing of celiac disease (for info go to CNN.com - the article will be available until 7/30/04 at least). The conference confirmed what we know: that celiac is under and mis diagnosed in the USA and that doctors should be more aware of the disease because the population of those who have it is greater than originally thought.

One of my ministers used to say "The shepherd doesn't make more sheep, only sheep can make more sheep." Meaning that if the church wanted new members it was up to the membership to reach out for more. Well we are at this junction. We need to reach out to the other "celiac sheep" and bring them into the fold. We live it, so we can talk intelligently about it and like the Christians say, "Be a witness." For my part I purchase the Celiac brochures from the CSA and leave them in the doctor's waiting rooms, at the beauty parlor, in the waiting area of the drug store and the local X-Ray/diagnostic office, at my chiropractor's office, at work in the lunch room, I've mailed them to distant friends, relatives, associates/even my minister.

I also made my own one-sheet page describing celiac using that booklet as a guide and leave them at the supermarket. I even gave it to the girl scout leader when I had to tell her I couldn't buy the kids' cookies.

I go on the message board which my internet provider has and I go into the Irritable Bowel section and post messages that pretty much ask other posters if they've ever been tested for celiac and how celiac mimicks IBS/colitis. So far a few people have asked me for more info and said that they want to be tested as soon as they return to their doctor. I hope I am able to make a difference in someone's life.

Debmidge

0

Share this post


Link to post
Share on other sites
I go on the message board which my internet provider has and I go into the Irritable Bowel section and post messages that pretty much ask other posters if they've ever been tested for celiac and how celiac mimicks IBS/colitis. So far a few people have asked me for more info and said that they want to be tested as soon as they return to their doctor. I hope I am able to make a difference in someone's life.

Debmidge

Debmidge,

That's terriffic! Whenever I hear of people with IBS or something like that, I always think celiac disease.....though I've explained celiac disease and the gluten-free diet a zillion times, I don't think that there are too many who listen to me.... :lol: anyway, there are one or two people who identified relatives with problems that sound like celiac disease and found it interesting...especially the 1 in 150 statistic....I don't think any of them followed up on it, though. Then again, unless I was having serious issues, I don't think I'd pay too much attention, either....that's good that you are spreading the word, though....after all, you could be adding 10-20 years to the lives of multiple people who would have died of cancers...you could have saved someone from having to endure severe osteoporosis and arthritis....congratulations! Good work :D

-celiac3270

0

Share this post


Link to post
Share on other sites

Hello i am pretty new to this site, I have been told that I might have celiac disease, I have had problems with my health for 7 years now from iron deficiency anemia to elevated platelett count, to thyroid problems constant fitigue, severe bruising, paleness i look like a ghost sometimes and I used to have great color until 7 years ago. I am scheduled to have endoscope the end of this month I have researched celiac disease and couldn't believe what i was reading there were so symptoms that i havew had and i have been to numerous doctors and have been through so many different tests up to cancer biopsys , I reciently went to see a GI for reflux problems and heart burn. And as he was going over my medical records I told him about all the problems I have had over the last 7 years and he wants to do a biopsy to check for celiac. He didn't tell me to start on a gluten free diet but I want to know If I do decide to go ahead without his suggestion will that throw off the biopsy, I am not scheduled to have biopsy until july 26.

Any help I would gladly appreciate.

Thanks.

0

Share this post


Link to post
Share on other sites

chasefamily,

Do NOT go gluten-free until you have completed your tests. Going gluten-free will alter the results.

0

Share this post


Link to post
Share on other sites

Hello again....yes, I get the bruising too. At any given time, I have about a 1/2 dozen mysterious bruises on my body. After some research, I believe that that's due to iron deficiency. Iron helps to circulate oxygen, which may quell the bruising. So I'll let you know if that helps.

I attended the NIH conference on celiacs, & the most important thing I got out of it was the understanding that being on a gluten free diet alone is not enough. The gluten-free diet is not a nutritionally perfect diet, & has deficiencies of its own. You have to supplement your diet with vitamins & minerals & make sure you get enough fiber. I have been gluten-free for a few months & have still been having some symptoms & couldn't figure out why. So now I'm attempting to be gluten-free & be more careful about eating nutritious foods, not just chocolate! (which is, by the way, the most perfect food...)

I've had a very painful day today & have been feeling depressed, moody & grumpy. Sometimes I feel waves of self-pity, but boards like this help soooo much to know that I am not alone. Thanks all for sharing...

Angel

0

Share this post


Link to post
Share on other sites

Hey Angel,

Welcome to the boards. I read your first post with a great sense of 'ditto.' I ws diagnosed at age 34, also. I had a lifetime of illness prior to my diagnosis. That included reflux, duodenal ulcer, weight issues (overweight/unable to lose), acne, itching, cankers, bruising, fungal infections, chronic strep throat and ear infections, anemia, stomach trouble, irritablility, exhaustion, hormone imbalances, several bone fractures, multiple allergies, etc. I lived on antibiotics from age 9 til age 34, often having 12-15 prescriptions per year. I had reactions to many of the antibioitics, but now we know they were the ones that contained gluten !!! We also know from blood tests that my immune system was severely compromised, but the pneumovax last fall boosted that back to normal levels.

Since going on a gluten-free diet last August, all of my allergy issues have subsided. I have lost about 35 pounds (back to normal size 8/10 now). My stomach feels great except for (RARE) accidental cases of gluten ingestion.

The one thing that was the most helpful for me was strictly following a PALEO diet for 4-6 weeks to calm down my system -- meat, fruits, root veggies (no beans, no dairy, no potato, no grains) I still eat mostly paleo, but eat occasional plant foods (such as rice). I generally eat NO junk food of any kind (no chips, no chocolate, no sugars). Even if those things don't contain gluten, I never feel great after eating them.

I, too, get really angry about all the doctors (even gastroenterologists) who mis-diagnosed me for so many years. I am planning to write a letter to each and every one of them. I will include celiac disease brochures and information so that they don't let another patient suffer as I had.

Kathleen

gluten-free since Aug. 2003 & dairy-free, corn-free

positive blood tests, negative genetic test (but doc says I am one of the 5% without the gene who is indeed positive for Celiac)

0

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
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined