Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate

Pre-diagnosis Anxiety (and A Few Questions)


Guest ~wAvE WeT sAnD~

Recommended Posts

Guest ~wAvE WeT sAnD~

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

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Wish Newbie

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

Link to comment
Share on other sites
flagbabyds Collaborator

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

Link to comment
Share on other sites
tarnalberry Community Regular
-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.

Link to comment
Share on other sites
Guest ~wAvE WeT sAnD~

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

Link to comment
Share on other sites
gf4life Enthusiast

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

Link to comment
Share on other sites
Guest ~wAvE WeT sAnD~

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?

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

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

Link to comment
Share on other sites
gf4life Enthusiast

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

Link to comment
Share on other sites
Guest ~wAvE WeT sAnD~

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

Link to comment
Share on other sites
Guest ~wAvE WeT sAnD~

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

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,464
    • Most Online (within 30 mins)
      7,748

    Anthony Chirboga
    Newest Member
    Anthony Chirboga
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @LimpToeTheTimeless Bone growth plates close in the late teens to early twenties, so it's doubtful you'll grow much taller, but you may start to bulk up in muscle.  Remember to boost your absorption of vitamins and minerals needed to build muscle by eating a nutritionally dense diet and supplementing with essential vitamins and minerals, especially Thiamine B1, to counteract the malabsorption caused by Celiac Disease. Keep us posted on your progress! References: The effects of endurance training and thiamine supplementation on anti-fatigue during exercise https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/ A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10542023/
    • B1rdL0ver
    • shadycharacter
      Fermentation breaks down some of the gluten in wheat. Nowhere enough for a wheat dough to become gluten free, but the gluten may be significantly reduced. I think some pizzerias make the dough the day before and leave it overnight. The longer the microbes are acting on the flour, the better.
    • LimpToeTheTimeless
      I am M 21 and I diagnosed myself after a week of fasting and slowly reintroducing stuff in my diet except gluten, I had terrible eczema scars ,dandruff and brain fog, now I am free after 6 years of just pain, I am 6'2, will I grow taller? And since I am a gymnast will my muscles grow like quicker, cause before no matter how effort I put in I just couldn't. 
    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
×
×
  • Create New...