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

Pre-diagnosis Anxiety (and A Few Questions)
0

11 posts in this topic

Hello everyone!

I'm a 21- year-old female who has exhibited many of the symptoms of celiac disease for the past five months. I have had an upper GI, countless blood tests (one of which caused me to pass out), a gallbladder untrasound, an X-Ray, and a stool card test (I never got the results on that one!). All of those tests were normal except for the final bloodwork I had done in June showing gluten antibodies. I have an EGD on Aug. 4th, and I'm not looking forward to being sedated while I swallowed a pencil-sized tube. :unsure:

The Gluten-Free diet has helped, though. :) Before I went on the diet, I was constantly vomiting, in an almost reflexive manner, without any warning. I would simply be eating, feel fine, then suddenly become nauseated. Now I can keep food down and am enjoying the new meals.

I have a few questions and appreciate any advice from anyone.

-How long does it take for the fatigue to go away after starting the Gluten-Free diet? Is it a few weeks, months, etc.?

-Have any of you "not felt like yourself" before going on the diet? Did you have depression/anxiety or difficulty sleeping prior to diagnosis?

-Did you exhibit symptoms after a stressful event? (I'm a college student-I became sick before finals week)

-Can a person be healthy their entire lives and suddenly get Celiac's Diseasee as an adult?

I have tons of other questions, but I figured these are the biggest.

Thank you very much.

~Jill

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi and welcome to the forum!

I'm another 21 year-old female and was just diagnosed about 1 year ago, so it is definitely possible to be healthy your entire childhood and only begin experiencing symptoms as an adult. To answer your other questions:

-The amount of time it takes for fatigue to disappear on the gluten-free diet varies a lot from person to person. Some people say they feel like a whole new person in just a couple of days, while other people do not begin feeling better for a few weeks or maybe even a few months. For me it took about three weeks for my GI symptoms (reflux, bloating, constipation) to subside and around 2-3 months for the fatigue to go away. One way to make the fatigue go away sooner is to make sure you are eating a balanced diet. You may even want to look into taking a multivitamin because most gluten-free foods are not fortified, and you want to make sure you don't end up with any vitamin/mineral deficiencies that could lead to sleepiness.

-I was totally not myself prior to diagnosis. I was tired all the time (very unusual for me), irritable, and depressed. As I said before, it was a few months before the tiredness went away. However, the irritability and depression went away as soon as I was diagnosed b/c I was so happy that I finally knew what was causing all of my symptoms (and that my symptoms were NOT just all in my head).

-I had my symptoms about 1 year before I was diagnosed with Celiac disease. The symptoms started while I was doing a study abroad program in Germany, which was a ton of fun and very worthwhile, but also quite stressful b/c I was living in a small town that didn't otherwise see a lot of foreigners, so I always felt like people were making judgements about America based on how I acted. When I came back, I experienced some brief symptom relief, but then my symptoms began to come back and were at their worst during finals week of my Fall and Spring terms. So it definitely seems like stress can be a factor!

Okay, I think I answered all of your questions. Please feel free to e-mail me if you have any more. I'm so glad to hear that the gluten-free diet is helping :D !

~Wish

0

Share this post


Link to post
Share on other sites

If you are on the gluten-free diet now go back to eating gluten before your endoscopy.

0

Share this post


Link to post
Share on other sites
-How long does it take for the fatigue to go away after starting the Gluten-Free diet? Is it a few weeks, months, etc.?

-Have any of you "not felt like yourself" before going on the diet? Did you have depression/anxiety or difficulty sleeping prior to diagnosis?

-Did you exhibit symptoms after a stressful event? (I'm a college student-I became sick before finals week)

-Can a person be healthy their entire lives and suddenly get Celiac's Diseasee as an adult?

Fatigue: It took me a few weeks, but I don't think I'd been gluten-intolerant very long. Turns out, for me, part of the fatigue problem is low testosterone levels, and that is even more important than the gluten-free diet for keeping me from getting tired. (Though they both play a role.) I know some people take MUCH longer to see an improvement in this area, particularly if they had been sick long enough to have vitamin/mineral deficiency problems.

"Not like yourself": Sorta. For me, I discovered it through another condition I had, which makes it pretty hard for me to answer the question - as that condition has much more of a depressive effect than this one for some people.

Stressful event: Do you mean did I first exhibit symptoms after a stressful event? Since my symptoms are relatively mild, and I have other issues, I can't pin down when my symptoms started. It may have been related to a nine-month off and on bout with lung infections (and hence antibiotics and yeast infections) that triggered this problem.

Sudden onset: Yep. That's the idea. You can have the genes for gluten intolerance, but until they're triggered, and expressed, your body doesn't react to gluten. I've heard that stress, infection (particularly yeast), and other things can be the trigger.

0

Share this post


Link to post
Share on other sites

Thanks everyone for answering my questions! Wish, I'm glad to hear from someone whose experience was sismilar to mine--I'll email you anytime! I really appreciate your imput--it's hard to describe the more emotional/mental aspects of the condition to my family--but they do understand the physiology of what's going on.

I'll talk to the nutritionalist I'm seeing next week about hormonal levels, namely testosterone. (hahaha he's male---he'll understand. Just kidding!)

Thanks again everyone!!!!

~Jill

0

Share this post


Link to post
Share on other sites




Hi Jill,

If you are already gluten free, then your biopsy will most likely show negative. The lining of the intestines heals pretty quickly for most people. Only people with very severe damage take longer than a few weeks for the lining to heal to the point of not being considered Celiac during a biopsy.

I felt so much better being gluten-free, but went back on gluten for two months and my biopsy still showed negative. You might want to talk to the doctor about it before going through the procedure for nothing.

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

Mariann,

You've made a good point--I read somewhere on this forum that someone's doctor asked them to ingest gluten before the test so the reading was more accurate. Would that help me?

What other condition would I have if antibodies showed up but my test was negative?

0

Share this post


Link to post
Share on other sites

after having bloodwork done, doctors will want you to stay on gluten so that your biopsy results are accurate. Therefore, I knew I had celiac disease after bloodwork, but stayed on gluten until after the biopsy....if I had gone off gluten, the biopsy may not have shown celiac disease or may have been more borderline....

-celiac3270

0

Share this post


Link to post
Share on other sites

A positive biopsy will just confirm that the blood tests were correct. Some doctors don't even have you do a biopsy, but most will recommend it. Your doctor should have told you to stay on gluten until the biopsy was done. It can take up to 3-6 months after being gluten free for enough damage to be done in the intestines to show on a biopsy. (according to Dr. Peter Green, one of the top Celiac specialists in the US) Unless you are willing to go back on gluten for a while and postpone the biopsy, it might not even be worth doing. There is always the chance that you had severe damage and have not healed completely, but if you have healed and the biopsy comes back negative, then your doctor is going to say that the blood tests were wrong and you don't have Celiac Disease. Which of course would not be accurate, given that you were gluten free before the biopsy. But most doctors don't seem to realise how much it affects the results.

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

I see. I've only been on the diet for a week, will any damage show up in the next two before my endoscopy?

0

Share this post


Link to post
Share on other sites

Will any returning symptoms be worse? I was vomiting constantly before I became gluten-free.

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
      103,910
    • Total Posts
      919,605
  • Topics

  • Posts

    • Are M&Ms Gluten Free?
      Olivia....what country are you located in?  I just bought a bag of regular M&M's from the vending machine at work. They are the milk chocolate ones and it is a 1.69 oz. bag.  The allergy warning states: Contains milk and soy. May contain peanuts.  The "best before" date on it is for April of 2017 so this is a recent bag.  
    • New to this gluten-free life
      Getting a diagnosis like celiac an be overwhelming because it's so complex and there's a lot to learn. If you're unhappy with your doctor, switching to a new one and/or getting a second opinion are options. It's really important to find someone you feel comfortable with who listens to your concerns. That being said, as you're preparing for your next appointment, take time to write down any questions that come up as you go about your day beginning to manage your condition and track any symptoms you're experiencing. Did your doctor discuss lifestyle changes and treatment options with you? Here are some examples of things to ask: What tests do I need? What treatment options are available? Should I take nutritional supplements? Are there any dietary restrictions that I need to follow? How will I learn which foods contain gluten? Should I see a dietitian? Can you recommend nutritionists who work with celiac patients? The Celiac Foundation is another resource. Their website has lots of information and resources. There's also the Celiac Support Association – they have local chapters, or the National Foundation for Celiac Awarenes. And check out magazines like Gluten-Free Living, Delight Gluten-Free and Living Without.  
    • Kidney disease question
      Icelandgirl and I often remark, "There's always something [to be worried about]"! Whilst  is obviously important to have all these tests and there is good reason to check them (one reads that very occasionally doctors miss something) it has done my health anxiety absolutely no favours having blood test after blood test!    
    • Celiac Night Vision
      On 4th June I posted on the ehealth vision forum under the title seasonal night vision scotomas, but there were no replies. I have just had my eyes tested by an optometrist. Acuity is 20/25. She did field testing and Topcon tomography and did not find anything alarming for my age. However in dim lighting against a light background I can sometimes see a round slightly greenish area about 20 degrees across with lateral extensions to the blind spots. Shutting the eyes suddenly makes it a light area. The scotomas occur within this area. I can also see those intriguing blue arcs of the retina with both eyes (though they always look violet to me). Trying to identify what causes migraine, scotomas and possible celiac symptoms is notoriously difficult which is why there are no good papers on how to do it. I continue to keep a daily record of foods, symptoms and anything else which seems relevant listing what is being avoided and highlighting possible clues. notme! - we are eating tomatoes and potatoes this year! Good luck to other celiac detectives!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • 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
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,956
    • Most Online
      1,763

    Newest Member
    Sass
    Joined