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. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    Yvonne Thomas
    Newest Member
    Yvonne Thomas
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • 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.