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:
    Support Our Content
    eNewsletter
    Donate

What Do You Think...celiac?

lisaemtp

Recommended Posts

lisaemtp Newbie
lisaemtp
Posted

I'm 25 years old, living near Clearwater/Tampa Florida. The more I read here, the more I wonder if celiac could be the explanation for my symptoms.

For several years, I've had a lot (a LOT) of gas/bloating, and pretty much constant diarrhea (or at least very loose stools). I also get severe tension headaches. A friend of mine was diagnosed with celiac/lactose intolerance two years ago and referred me to his doctor as I had almost the exact same symptoms - the doctor told me that celiac is very rare and he didn't think that was my problem, but he did test me for lactose intolerance which he said came back negative. I tried just eliminating dairy from my diet, but didn't get consistent results. He told me that it was probably IBS and that I should just treat the symptoms. I've tried various over the counter remedies (rolaids, tums, anti-diarrheals, anti-gas meds, etc) with no change. After seeing that doctor I gave up and just learned to live with the symptoms.

Over the last six months, it's gotten worse. The gas is pretty much a constant, I rarely have formed stools, and I'm almost always bloated and have abdominal discomfort. When i have to go to the bathroom, I have to go NOW. Over the last two months I've been exhausted all the time, to the point where I have difficulty staying awake at work. I'm sleeping more than usual and waking up tired. I've also had aching in many of my joints and my headaches have gone from weekly or every other week to pretty much every day. I've had enough, and a story on the news tonight mentioned Celiac and caught my attention. I've been online all night reading and trying to find a specialist in my area.

I'm so glad to have found this forum and to find that many other people have had the same problems with doctors taking them seriously. I know that I have many of the symptoms on the "checklist" for celiac, but has anyone here experienced anything similar? Regardless of how the tests come out I'll probably try a gluten-free diet (hey, it can't hurt).

Has anyone had problems getting these tests covered by insurance? I have BCBS which is usually fine, but I want to know what I'm getting into. Also, when going to see a GI specialist did you have a long wait to get in and get tested? Now that I have an idea what might be causing my symptoms, I can't wait to find out if this is it and get started on fixing it! I would just try the diet, but I would like to have an official diagnosis because of the genetic factors.

Thanks for reading and for creating such a supportive environment!

Lisa

PS - I was laughing reading all the "poo" posts...it sounds so familiar! Funny to think that we all spend so much time thinking about our poo...

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

Celiac.com Sponsor (A8-M):


darlindeb25 Collaborator
darlindeb25
Posted

I would imagine BC/BS will cover any tests they would do for celiac disease. Find a Gastro doc and if the waiting list is long, then ask to be put on their cancellation list also. Check to see if you have a local celiac support group and contact them, ask for names of local doctors who are knowledgable about celiac disease--finding a good doctor is always a plus.

I have a good friend who has a winter home in Florida and she sends me articles from her local newspaper all the time about celiac disease--it seems the news is out in Florida on celiac disease. Definitely get tested for celiac's before you go gluten free, if it comes back negative, then yes, go gluten free and see what happens. A gluten free diet most definitely will not hurt you physically and it may make you feel so much better.

Feel better.

darkangel Rookie
darkangel
Posted

You might also have a candida overgrowth - by itself or in addition to gluten intolerance or celiac disease. There's an online quiz to help determine if candida might be your problem, or part of your problem:

Open Original Shared Link

ADevoto Explorer
ADevoto
Posted

I have the exact symptoms. I had a blood test through the "gold" standard lab (lots of money later) and it came back showing the genes but negative on tests. My doctor discounted my symptoms and said there was nothing wrong. I went on gluten free diet and felt better pretty quickly. Now I am having problems staying on it but I as soon as I eat gluten my diaherra comes back. So, I am going to redouble my efforts. Good luck

NY547 Newbie
NY547
Posted

Hi Lisa,

My daughter has BC/BS and has had the blood antibody panel for celiac ordered through her primary care provider. They even checked it a second time a few months later. No problems with reimbursement. Of course there are many forms of BC/BS, so if you are not sure, call the 800 number and find out for sure which ICD codes will cover the test and be sure they are listed on the labslip when you get your blood drawn.

You don't have to wait for an appointment with a specialist to get the blood test done. If you decide to follow up with a GI, whether the blood work is positive or negative, be sure to check if you need a referral. We DID need one, which my daughter's primary provided and even set up the appointment. (It still took 2 moinths even though the doctor's office scheduled it)

Good luck, I hope you find some answers.

Archived

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

Go to topic listing

  • 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. Manaan2
      - Manaan2 replied to Leslie Clark's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Hidden Gluten in distilled vinegar

      @knitty kitty The information you've provided is invaluable! I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!). This weekend my husband and I plan to solidify all the details for a start point, then adjust as...
    2. BIg Nodge
      - BIg Nodge replied to BIg Nodge's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Opinions on my test results/symptoms

      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information. I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS...
    3. Dawn Meyers
      - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too. I was supposed to do testing to find out metal's I was allergic to because I can't wear jewelry of any kind. Mayo felt I had other allergies also.
    4. Scott Adams
      - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based...
    5. Dawn Meyers
      - Dawn Meyers replied to Dawn Meyers's topic in Related Issues & Disorders
      16

      Vaccines

      Mayo is great and yes I had the same experience. They take you seriously and they check everything. I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,852
    • Most Online (within 30 mins)
      7,748
    Mahogany
    Newest Member
    Mahogany
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Scott, thanks so much for the thoughtful replies. My doctor did actually just re-order thyroid labs to see what is going on with my TPOs. I agree that will be interesting information.  I think I know the answer to this, but as far as the biopsy . . .. that would be quite conclusive as far as celiac goes, but a negative result would not rule out NCGS, correct? Does NCGS also cause damage to the lower intestine/leaky gut?  I appreciate the thought that I should be open-minded to other causes. I did not have dysautonomia on my radar, so I will look into that. From a quick scan at the potential symptoms it seems like almost anyone could convince themselves they have it, very broad! I can see why that is a tricky one to diagnose. I did also show low vitamin D, I'm in New England so that is somewhat common. I have a memory of low iron on some lab result as well but I can't find it, so I'll look into that. My cholesterol is high too, so working on that.  While the initial adjustment was tough, I have actually adapted fairly well to going gluten-free at home. The tough part for me is I love eating out and traveling, so that has been a challenge. I suppose if the answer ends up being NCGS then I could maintain a mostly gluten-free diet but also experiment with the occasional splurges. Snowboarding just doesn't feel right without a beer in the lodge . . ... cider is just not the same!  Thanks again.  
    • Dawn Meyers
      Vaccines

      By Dawn Meyers · Posted

      I did some research and found out that vaccines put preservatives, sugar alcohols and metals in them. Which I have a intolerance too.  I was supposed to do testing to find out metal's I was allergic to because I can't  wear jewelry of any kind. Mayo felt I had other allergies also.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      For individuals who have experienced negative reactions to the flu vaccine, there are alternative formulations that may reduce the risk of allergic responses. Traditional flu vaccines are typically produced using egg-based methods, which can pose issues for those with egg allergies. However, there are now several egg-free options available, such as cell-based and recombinant flu vaccines. Recombinant Vaccines (e.g., Flublok Quadrivalent): These are produced without the use of eggs and are grown in insect cells, making them a suitable option for individuals with egg allergies. Cell-Based Vaccines (e.g., Flucelvax Quadrivalent): These vaccines are also egg-free and are produced using mammalian cell cultures, which can be a safer alternative for those with egg allergies. Other Considerations: If you have had a reaction to a specific component of the flu vaccine (e.g., gelatin, preservatives, or antibiotics), discussing your medical history with a healthcare provider is crucial. They can help identify vaccines that exclude these ingredients. It's important to consult with an allergist or healthcare provider to determine the safest option based on your specific allergies and medical history. They can also provide guidance on pre-vaccination testing or desensitization protocols if necessary. Also, at @trents mentioned, could you be getting hidden gluten in your diet? Do you eat in restaurants? If so, this could be why you still have high gluten antibodies.
    • Dawn Meyers
      Vaccines

      By Dawn Meyers · Posted

      Mayo is great and yes I had the same experience.  They take you seriously and they check everything.  I to wish other Dr's cared that much. I sure hope it's not refractory celiac also.  
×
×
  • Create New...