Jump to content
  • 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):

New Here Not Sure What To Do


floridalover67

Recommended Posts

floridalover67 Newbie

Hi

I am new to the forum. I am not sure if I have celiac disease or a GI or not. I am looking into having a blood test, even though I know it is not accurate. I am also considering going gluten free to see if it makes a difference. This is what I have currently, and maybe you can tell me what you think.

IBS: In 2006, all of a sudden I started getting bad pelvic pains. I went to every Dr, and had ultrasounds, CT Scans, bloodwork, sigmoidoscopy, saw urologist, etc, and everything was fine. It was determined that I had anxiety induced IBS. I was placed on Librax and I have been fine ever since. I never had any issues with diarrhea or constipation. Just the lower pelvic pains.

Anxiety/health anxiety/depression: Officially diagnosed around the same time in 2006. My pelvic pains made me depressed, but I also suffered depression as a child. I currently have severe health anxiety.

Iron Deficiency Anemia: Diagnosed on accident. I was asymptomatic. I asked for another blood test because all of them were coming back with high WBC, and low HB and HCT. I had all the tests done, and my ferritin was an 8. I had two IV Iron infusions, which one made me very sick and the other caused me to pass out. After two IV infusions my ferritin came up to 52. Two months later on Vitron-C iron pilss, two a day at 65mg of elemental iron, my ferritin dropped to 22. But everything else normalized. HGB, HCT, RDW all

back to normal. Rise in serum iron as well from 58 to 70. Just drop in ferritin.

I have currently upped my iron pills to 3 a day, plus using Floradix and blackstrap molasses. I am getting my bloodwork done in a weeek. GI Dr tells me it from my periods.

Angular chellitis: Craks and sores at the corners of my mouth. Comes and goes. I have been told this could be a vitmain B2(riboflavin deficiency)I have had this off and on for a very long time. Mainly in the winter.

Dandruff:I can get crusty patches on my scalp.

I have been told my my Naturopath that I could possibly have a malabsorption problem and to look into it.

This is what else that COULD be going on.

IBS: my pains have never been in my stomach. ONLY in my pelvic region. I understand your small intestine is higher up. Never had any other GI issues.

I am not underweight at all. I take effexor xr for my depression. Which causes me to gain weight. But even prior to effexor(On three years now) have never been underweight.

I have high blood pressure and being treated for that. Never ever had low BP.

My B12 and Folic Acid is fine. If I can absorb

those vitamins, which are processed through the small intestine, why not Iron?(If I do have celiac disease??)

I take antidepressents. Which could inhibit Vitamin B2. Or, I constantly have vaseline on my lips because I got into the bad habit of doing this as a child. I seem to get dry, cracked lips in the winter. I do not have conjuntivitis and I never ever have a sore throat which is another sign of B2 deficiency.

I am not lactose interolerant.

I am not tired or fatigued at all.

So I have "some" of the symptoms, but also can be explained by seperate issues.

I am very consistent with my bowel habits.

I do not ever get nauseaus.

I never get sick, not even a cold usually.

I had low Vitamin K at one point because I was on a diuretic, and took supplements, and K has been normal ever since.

Bloodwork is perfect other then anemia.

I am vitamin D deficient, I live in a cold climate, but take 2000 IU of Vit D a day and levels have risen from a 10 to a 32.

Not sure what to think????


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It is not a bad idea to get a celiac panel done. You mention being on Librax, that med could be preventing you from having D, it was one of the many, many drugs that I was on.

After you have had all the celiac related testing done that you want to have done do give the diet a strict trial.

Do NOT suddenly stop the meds your on. While they may be controlling your symptoms and you may not need them after you have gone gluten free to stop them suddenly could cause problems. Ask your doctor about weaning off or adjusting the dosage.

floridalover67 Newbie

It is not a bad idea to get a celiac panel done. You mention being on Librax, that med could be preventing you from having D, it was one of the many, many drugs that I was on.

After you have had all the celiac related testing done that you want to have done do give the diet a strict trial.

Do NOT suddenly stop the meds your on. While they may be controlling your symptoms and you may not need them after you have gone gluten free to stop them suddenly could cause problems. Ask your doctor about weaning off or adjusting the dosage.

I didn't have D or C even before I took the Librax. I only had pelvic pains. Not in my upper stomach, but only in my pelvic/bladder region.

I would never even think of coming off of Librax. It was my life saver. During the time of my stomach issue(or pain in my pelvic region) I changed my diet and NOTHING helped.

I have severe anxiety, and they believe this is what caused it. Because I have never had any bowel issues in my life. I had a sigmoid done because I had rectal bleeding, and I knew I had hemorrhoiods. Bad ones. I have them internally and externally verified on sigmoid. I am as "regular" as they come.

I am just wondering about the angular chellitis. How can I be sure if I am deficient in Riboflavin is there a test for that? My Dr just gave me some B2 pills.

I am going to have the test done anyways. And go gluten-free to see if it helps. Thank you.

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. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    2. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    3. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    4. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

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

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
×
×
  • Create New...