Jump to content
  • 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:
    Support Our Content
    eNewsletter
    Donate

Another N00B


cO-ol

Recommended Posts

cO-ol Explorer

Hi everyone. I'm 21 (My mom was still woozy from the anesthetic, ok? xD). I guess I'll start off by saying I like terrible jokes.

It started with seeing a doc about the slight dizziness, fatigue, and numbness in my feet about 3 years ago. After blood tests, the only thing wrong was "Your b12 is a little low." It was about 305. I give her props for seeing that 305 is not ok, because apparently too many docs don't.

My fatigue got MUCH worse, and I felt lousy. I was often moody. I've read that can happen if you have nerve damage from deficiency. I saw a doc and she wanted to push an antidepressant on me.

I've gone through cycles of feeling better, worse, better, worse. One thing that's consistently gotten worse? Depression and anxiety. I also have developed a slight stomach pain whenever I eat (and it really doesn't matter what I eat; every food makes me feel this way). At one point it got bad enough that I was vomitting and thought I had appendicitis! That was last June, and it never got that bad since, but never completely went away, either.

The depression and anxiety have gotten bad enough to interfere with my job. My boss demanded I see a doctor, who took blood tests. The only thing wrong was my vitamin D levels. She figured it was depression.

I just don't think Major Depressive Disorder (or Generalized Anxiety Disorder) is my problem. The more I read about Celiac, the more sense it makes. Bad things I've felt that I just ignored/shrugged off (like heartburn) I've seen on symptom lists.

Other symptoms I've dealt with: Screwed up hunger cues (sometimes I'm nauseous and hungry at the same time; sometimes I can't eat enough; other times I have no appetite), itchy scalp, the PMS from hell, and occasional poo problems. I also think I might be lactose intolerant (other foods make me gassy too though, I think...).

However, I've considered trying to go gluten-free, and it's HARD. I can't do it on my own. There is NO WAY. I'd need a *LOT* of help, and I don't have a single clue on how to get started (I can't just live on fruits and veggies [i'd go hungry... I know from experience] and I hate cooking :( ). I'm one of those people who'd need a diagnosis to stay motivated. How do I find a doc who'll take this seriously (none have so far)? What do I do if I can't? Could I just go straight to a dietitian? What if that doesn't work (only two are covered by my insurance)? Is there anything non-Celiac that could be causing this? How do I talk to a doctor (maybe that's my problem)? I also am making barely over minimum wage here, though I live with my parents, so I don't have a lot of money to spend on going doctor to doctor(and I live in the U.S. with the BEST HEALTHCARE SYSTEM IN THE WORLD my butt.)


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

You may want to go back to the doctor and ask for a celiac panel. Do it before you go gluten free as you need to be eating gluten for the tests. Celiac disease can cause depression and anxiety due to the antibodies action on the brain. There are quite a few of us who have gotten relief from that type of issue once gluten free. You low B12 and D are often part of the celiac picture so that and your symptoms should be enough for your doctor to agree to test.

After testing a trial of the diet is needed even if the tests come back negative. That is best done with whole unprocessed foods. There are folks here on the board that don't really like to cook all that much and you can get lots of tips and ideas to make stuff that is safe and tasty.

Read as much as you can and feel free to ask any questions you need to.

cO-ol Explorer

I went to this doc on recommendation, but she's so far away and really not worth the drive. But I guess I can call a bunch of offices nearby and see what their knowledge of celiac is.

ravenwoodglass Mentor

I went to this doc on recommendation, but she's so far away and really not worth the drive. But I guess I can call a bunch of offices nearby and see what their knowledge of celiac is.

You might be able to have her send you a script for the test if she is familiar with your history. If not a General Practioner or Internist as well as an OB/GYN if your female can order the celiac panel for you.

If you can't get to a doctor and need to just go gluten free on your own there are lots of folks here willing to help. In some instances the changes we see in a couple months in the way we feel both physically and mentally can be motivation enough along with the reactions to a few accidental glutenings a long the way. It is hard but when you feel better it is very much worth the trouble.

Skylark Collaborator

Your symptoms sound very much like mine. GI trouble, deficiencies (I had anemia), major depression with a lot of fatigue, and carpal tunnel syndrome. The depression eventually turned into bipolar illness in my case. Depression can absolutely be celiac disorder. In Finland folks with depression and GI symptoms are generally screened for it.

You could try ordering a Biocard kit. Open Original Shared Link They have a phone number for U.S. residents to call and order. It's only one of the many celiac blood tests, but if you come up positive you have a pretty good indication.

It does make sense to try the diet for real. You cannot be tested off gluten, but the tests have about a 20% false negative rate and do not catch gluten intolerance. Gluten intolerance can make you every bit as celiac and some doctors think it's an early stage of celiac that just doesn't show up on the blood tests. The only way to know for sure if gluten is your problem is to do the diet strictly.

Sorry, but if you're gluten sensitive you're going to have to learn to cook. There is really no way around it, as a diet of processed foods has too much gluten cross-contamination. You can get all the help and support you would like from this board - that's why we're here.

SGWhiskers Collaborator

If you decide you want the celiac panel and the doctor says no, please ask them to make a note in your chart that you requested the celiac panel and they said no. I've never had to do this when I'm direct about what I want, but I like this idea for cutting through the run around you might get while diagnosing this disease with confusing symptoms. Yes, you could absolutely have depression or some other problem. Yes you could also have celiac. Yes, the celiac could be causing the depression or other problems. The doc may not be wrong, but not entirely right either.

I went on antidepressants years ago and they were the right move for me. 2 years into my celiac diagnosis, I'm functioning in the summer without antidepressants. We'll see how the winter goes. My medical bills were cut drastically by going gluten free which helps defray the cost of the more expensive fruits and meats.

Ask for the celiac panel at your next office visit. Don't get talked into a wait and see approach. It will cost more in the end. It is OK to get the panel and to try another of your doctor's ideas on the same visit. It's also possible you don't have celiac and it will save money to try it your doctor's way while you wait for the test results. I would agree that a serious gluten free trial for 3 months would be of value even if the results of your celiac panel are negative.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - sc'Que? commented on Scott Adams's article in Product Labeling Regulations
      1

      Global Experts Recommend Gluten Reference Dose: What It Means for Celiac Safety (+Video)

    2. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      What's your daily meals? Protein bars?

    3. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    4. - Seabeemee replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Labs ? Awaiting in person follow up with my GI

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,172
    • Most Online (within 30 mins)
      7,748

    L B
    Newest Member
    L B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      What are your daily meals? Guilty pleasure snacks? Protein bars? I feel when looking for gluten free foods they are filled with sugar cholesterol. Looking for healthy gluten-free protein bars. Something to fill since sometimes I feel like not to eat anything. Especially if on vacation and unsure of cross contamination I figure go with a salad and protein bar to fill and play it safe.
    • trents
      Unfortunately, there is presently no test for NCGS. Celiac disease must first be ruled out. NCGS is thought to be much more common than celiac disease. We know that celiac disease is an autoimmune disorder but the mechanism of NCGS is less clear. Both call for an elimination of gluten from the diet.
    • Seabeemee
      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.