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. - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

    2. - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    3. - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    4. - FannyRD posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

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

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748

    Eldret419
    Newest Member
    Eldret419
    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

    • FannyRD
      Thanks for the resource! I will check it out!
    • Scott Adams
      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
    • FannyRD
      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac.  Ferric citrate (Auryxia)  Sucroferric oxyhydroxide (Velphoro)  lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela)   Thank you!
×
×
  • 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.