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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Another Newbie - Completely Lost
0

3 posts in this topic

Hello there. I have been reading here for a couple of days, and have finally gathered the courage to post. I know there are a lot of posts just like mine, so thank you to anyone who reads my rambling.

Obviously I am here because of Celiacs, but I have not been diagnosed. Just like many stories I've read, I suspect based on all my symptoms. I don't know how many times I have seen my doctor with the complaint that I am just sick of always feeling like crap. My story is pretty typical to many I have read here. As a teenager I just always felt sick to my stomach, nauseated and moderate, tolerable pains. My mom shrugged it off, thought I was just complaining all the time, nothing really wrong. I started having depression, anxiety issues and panic attacks around 16. I blame some of that on hormones and being a teen, but I still struggle and never really understand why, I don't feel like I should be depressed, but often am.

I went through life just always having a lot of stomach aches and pains, it was just normal for me. I have never been 'regular' in the bathroom area as long as I can remember. Every few days was very normal for me. I have terrible gas and gas pains often, and it doesn't seem to matter what I eat. I get a lot of muscle aches and joint pain for no reason. I've been tested for RA twice. I have never been able to sleep well. I can stay asleep, but falling asleep is hard. I have no sex drive at all. Like I enjoy it, but have no desire to initiate it. I am completely exhausted all the time, everyone just says it's because I have 4 kids. I get headaches all the time and I feel like I can't remember anything most days. I have trouble keeping up with things if I don't write it down. When I was pregnant with my now 2 year old I had a glass of chocolate milk and then felt really bad afterward. I said to my husband, why does milk always make me feel so bad. He laughed and said maybe you are lactose intolerant. It was like a lightbulb went off over my head. THAT would explain all the stomach pain. I did some research and it seemed plausible so I cut out lactose. Not completely, but pretty much everything except the little bits in processed things and I still ate cheese. I love cheese :) I noticed a difference mildly in my aches, and in my gas, but everything else is still there.

Fast forward to now, for the last 5ish weeks I have switched from "going" every few days to every time I eat a meal. At first I thought I had a virus (probably did), I had super diarrhea for about 5 days and actually went to get IV fluids because I am pregnant and wasn't keeping anything in. It slowed to anytime I ate a large portion of something, but after 3 weeks I was beginning to wonder what was going on. I would get terrible cramps and have to go to the bathroom immediately. It occured to me that this has happened many times before, with the sharp pains, but it has never been this consistant. It's so embarrassing. Last week I had a period of about 3 days with nothing, and now I am back to everytime I eat I have diarrhea. Twice this week I haven't made it to the bathroom, and I was only downstairs at home. I am beginning to be afraid to go anywhere. It's humiliating and I have never talked to the doctor about the GI stuff because I am embarrassed and she can't seem to find anything wrong with me anyway. I have been tested for thyroid issuesand RA twice, and have had routine blood work even recently, but nothing special like vitamins or anything. I have been slightly anemic several times. Twice I couldn't donate blood because my hgb was too low.

Everyone brushes all my symptoms into stress of having 4 kids and going to school, but I believe I handle it all quite well and feel like crap all the time. It's not stress. I don't care what anyone says. I know my body and I just don't feel good ever.

While trying to figure out what would cause my current GI problems I stumbled across Celiac Disease and have been reading like a maniac ever since. It all sounds just like me. I can

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome! Others may have more answers since I am still going through the testing process myself. If you know your primary care doctor will do a complete celiac panel for a blood test then you can just go with your primary. But if you aren't sure then ask for a Gastro referral. My primary was taking blood to test for the H pylori and I asked them to take it to test for celiac. She said yes but then the person taking the blood said that they were only testing for H pylori. I asked if she could just take an extra vial of blood and ask the doctor again to check for celiac and they did. It did come back negative, and I was referred to gastro who did an endoscopy that shows signs of celiac. So I am not waiting on gene testing and a possible repeat endoscopy. I am going to go gluten free either way after to see if it helps me feel better. I am considering going lactose free for a couple weeks even if I am negative too. It seems like everything I eat makes me feel sick so may as well try it. I am also doing food allergy testing, that may be a helpful test for you as well.

About the symptoms, I am not a doctor (surprise!) but those definitely could be symptoms. They could be symptoms of other things too I suppose but they are celiac symptoms. I have a lot of those too with with some extra ones, but I don't have the diarrhea, still mostly constipation.

Good luck researching and finding answers. I feel like even if I don't have celiac, I sure know a whole lot more than most doctors seem to now!

0

Share this post


Link to post
Share on other sites

Welcome, PurlQueen,

Your story sounds like so many others here. Asking your doctor about celiac disease is a good first step. It's good that you're getting tested before you go gluten free. Hope you feel better real soon! :)

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
      103,418
    • Total Posts
      917,668
  • Topics

  • Posts

    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
    • Gluten and panic attacks
      Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life.  After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck.  Imagine!  Glad you feel better and yes, it was the wheat!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,550
    • Most Online
      1,763

    Newest Member
    Tam Tam
    Joined