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.

Oh Ugg....
0

4 posts in this topic

I have been off most of the supplements I had been taking. I figured out I might be celiac about a week ago and my first doctor appt is Oct 4th. I had been able to stay ahead of most of my symptoms with the supplements, but if I ever went off them, they'd start up again after just a couple days. Which is why I was always researching to try and figure out what was causing it, because I know just chasing symptoms isn't solving anything.

Anyway, I've been off most of it for a week, which is the longest time in the last like 7-8 years. And I am so miserable. I'm having a hard time thinking. I've got a low-level headache. I'm kind of just achy all over. My appetite is almost non-existant. Even the thought of food is just gross. I eat a couple times a day just because I know I have to. Try to get in some protein for energy, plus keeping up the gluten for the tests I need to have. And today was the worst. I'm starting to notice my hair coming out. Not a whole bunch, but way more than normal.

My hair coming out was one of the symptoms I had when I had a quick 25 pound weight loss 7 or 8 years ago. At the time I had a huge amount of stress (ended up escaping an abusive relationship and was working 16 hour days) and so the weight loss and the hair loss totally made sense as a stress reaction. So I never even thought about it being anything I needed to see the doctor for. I ended up just going the alternative medicine route and had a lot of symptom-treating success.

But anyway, I'm kind of freaked out. Even though I realized a week ago that this was probably what I had, the appetite going away along with the hair loss is just making it more real. And the fact that it happened so quickly is scary.

:blink::o:(

Nancy

0

Share this post


Link to post
Share on other sites


Ads by Google:

You may have malabsorbtion issues.

You're body is not getting the nutirents and proteins it needs. I've been having the same problem. Hair falls out, or grows outward in crooked,wild strands. Also, my nails were real brittle and had white flakes.

I went to my Gastro doctor for the first time. He pulled up my test results on my blood work and told me that I don't have celiac disease, I have IBS. Whatever. I told him back that from what I've read and heard I have to be eating gluten foods for at least 3 months before a test. He then tells me to go ahead and eat whatever I want to get my weight back up and not to worry so much about what I'm eating.

He asked me quite a few phycological questions too, so I guess that's where this is all heading next. Great.

I can understand that your body does need some fat on it to defend itself. I've been having really bad chills in my hands and feet at times.

0

Share this post


Link to post
Share on other sites

If you did have Celiac and malabsorption the supplements could've been helping you with some of the symptoms. Why did you stop taking them...is it for testing purposes? I'm not taking any supplements right now except for enzymes....if I get alot of gluten in me my hair really starts to fall out and my skin gets dry....along with alot of other bad stuff. :(

0

Share this post


Link to post
Share on other sites

Yea, I've got cold hands and feet too. And I'm always either too hot or too cold.

I was a medical transcriptionist for a few years (that was what I was doing working 16 hour days) and there was one doctor in one of the groups who, every time a patient came in with a written list of symptoms or problems, rather than just telling the doctor, he recommended that they be evaluated by a psychologist for Obsessive Compulsive Disorder. <_< He was really trying to be helpful and meant well, but not everyone who comes in with a post-it note is OCD ya know?

That's one of the bad things about working as office staff in a medical office, AND now I'm seeing it's also one of the bad things about having a disease that isn't well-understood yet. You realize that doctors don't know everything and they're just people trying to do the best they know how to do. That realization is kind of like when you find out that Santa isn't real, or that you're parents don't have all the answers. It just kind of bursts your bubble.

I've typed up my entire medical history for my doctor's appt in Oct. It's like 5 pages. If she's anything like that doctor I worked with, she'll lock me up and throw away the key. But if I don't, I'll totally go "brain fog" and not remember to tell her about something. Even when I was typing it up, it wasn't until I had it almost finished that I realized that I had completely forgotten to mention that I had to have an appendectomy. You'd think a person would remember that about their own life... Plus, they never give you enough time or enough room on those forms they have you fill out.

Yep, I did stop taking the supplements for testing purposes. I knew that I was supressing a lot of the symptoms by taking the supplements, and I wanted to give her an accurate picture of my health without them. And if it ends up I don't have celiac specifically, but have some other kind of problem causing malabsorption, I want to make sure I'm not messing up any other test results that might show something. Right now, all I'm taking is digestive enzymes and St. John's Wort (for depression). I was thinking about even stopping the digestive enzymes a week or two before the appointment. But I'm not sure I'm brave enough to go into the doctor's office with all of those other people and have gas problems. I think I'd die of embarassment.... :o

I'm just so glad I found this board. It's nice to be able to talk about all the awful stuff with people who understand.

:)

Nancy

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
      103,404
    • Total Posts
      917,640
  • Topics

  • Posts

    • celiac disease is psychosomatic
      ...and CoQ10 deficiencies can occur in those taking statin drugs.  Really important to monitor that if you are on statins.
    • Starting out
      I guess you must have to be a member then. I don't know because I am a member. It doesn't cost anything & I've never gotten any junk mail from them or anything unpleasant.  Gee, I didn't even think about that when I posted the link. OOPS! Let me know if you need me to copy & paste it because I will if you want.  
    • Starting out
      Hey, do you have to be a member of Medscape to see the article?  I could not get in pass the sign-in page.  
    • Starting out
      Ugh!  Run from that doctor.  Are you located on Mars?  Kidding aside, here's the deal.  If you go gluten free just to test it out and you feel good, then you might think you have a gluten issue.   A few months or a year go by and you realize that this is HARD.  REALLY HARD.  So, you start to cheat.  You get sloppy.  You start sharing a toaster.  Your symptoms come back, but you don't worry about it or maybe you start to get violently ill.  Symptoms so different from your old symptoms that you think you must have something else.  (You could be the type of person who makes a decision and sticks with it.  But those are rare folks.)   I could go on with more stories, but type in lymphoma in our forum's search box.  Look at member's who were misdirected by their physicians and who have had celiac disease all along.  Now they are dealing with cancer.   It is not my intent to scare you into thinking you have cancer.  The odds of you having it are slim and none.  I am trying to scare you into finding another doctor who really CARES about you and follows a normal standard level of care (like reading currant medical journals or checking Dr. Google, like my ER neighbor doctor does because he can not know everything!) It's just a simple blood test.  So easy.  If negative, then give the diet a try!
    • "Celiac disease prevents absorption of iron"
      Well, you are no longer anemic, so that's great!  As long as you are healed, you should be able to absorb iron easily.   Of course, there could be other issues that would prevent you from absorbing iron as villi damage can occur from many things other than celiac disease.   Want to know for sure where you stand?  Ask your doctor to check your iron and iron store levels the next time you have a physical.
  • 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
      60,535
    • Most Online
      1,763

    Newest Member
    Sullyn
    Joined