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

Not Sure What To Do

CarolynV

Recommended Posts

CarolynV Newbie
CarolynV
Posted

Hi,

I just found this forum and am so glad.

I tested positive for celiac disease last Thursday after almost 4 months of strange neuological symtoms. My neurologist did every sort of neuological test he could think of and found nothing so he referred me to a very well respected rheumatologist in my area. The rheumatologist is the one who found me positive. I was shocked because I never had considered having celiac and asked her if that was the reason for all my weird symptoms (immense fatigue, muscle pain and twitching). She said that celiac could absolutely cause all my symptoms. The problem is, when I started researching celiac, it said that needed to be on a regular diet in order for the results to be accurate. About a month ago, I had started a gluten free diet which was recommended by a friend. I actually called my GP and my neurologist and asked if it was OK to do this and they both said it wouldn't hurt me. My rheumatologist knew that I was on this diet when she tested me, so she did a complete celiac panel on me. So, the positive result came back in the IgG Antiliadin which I've now found on the internet is not very specific. My IgA results were negative (which is more definitive). So, I'm not quite sure what to do. The rheumatologist was so convinced on Thursday that I had celiac disease that she said she didn't even need to see me again. She said that I just needed to stay on the diet that I'm already on. I do know that I will place a call in to her tomorrow, but I just wanted to know what you all thought. I've also read on line that a positive result for celiac disease is not only a blood test, but a biopsy. Have any of you done both? Also, have any of you seen a nutritionist?

Thanks for any thought that you have on the matter. If this is what I have, I actually consider myself lucky, since I was tested for so many other worse things.

CarolynV

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

Celiac.com Sponsor (A8-M):


elye Community Regular
elye
Posted

Hi, Carolyn!

You've come to the right place. Lots of knowledge and support to be found here!

I had both the blood panel and the biopsy done. If there are questions about you blood results, the biopsy may confirm celiac. However, like the blood panel, the biopsy can only rule the disease IN...it cannot rule it OUT. The GI may not see any damage, and the biopsy samples may not show any, either, but since you have 22 feet of lower intestine, areas can easily be missed.

The only truly accurate diagnostic tool for this illness is dietary response. Sounds like you may have your answer just from this.

Welcome to the board, and good luck! :)

aeshlea Apprentice
aeshlea
Posted

I would stay on the diet if I were you. It won't hurt, and you will know for sure as soon as you accidentally eat gluten, or do a challenge. Like the above poster said, a positive result from the dietary changes is really the true indication of what your body is trying to tell you. I have not seen a nutritionist because after I read up on what I could and could not eat, it was fairly easy. Not easy at first finding the things I could eat, but you get use to reading labels and before you know it you will be a pro at scanning for gluten ingredients. If seeing a nutritionist would make you feel better though, go for it.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,970
    • Most Online (within 30 mins)
      7,748
    Eliartstar
    Newest Member
    Eliartstar
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Alibu · Posted

      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
    • Scott Adams
      Gluten free thyroid medications

      By Scott Adams · Posted

      I don't believe that site is updated regularly, and it may be unreliable.  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/   
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Hello! I did a brief search on this and couldn't find recent posts, but feel free to direct me to something if I missed it! I have had a difficult time confirming which thyroid medications (specifically generic forms of Levothyroxine) are gluten-free and safe for celiacs. I am pretty confident the generic manufacturer Mylan is safe, and I have been taking this for almost two years. Recently (I think b/c of a recall), Mylan has not been available at my local pharmacies. The list I typically use for gluten-free drugs (http://glutenfreedrugs.com/newlist.htm) does not list any of the other manufacturers offered by pharmacies in my area (Accord and Macleod). When I do a search, sites tend to say these brands are gluten-free but I can't fully confirm, and other sites say that only Lannett and Mylan generic brands are safely gluten free. I have called manufacturers and they say "there are no gluten ingredients" but they don't have information regarding manufacturing/cross contact. In particlar, Accord said there is gluten present in the manufacturing facilities so they can't guarantee no cross contact. What recommendations do you have for finding levothyroxine that I can mostly be assured is safe for celiacs? It is tricky b/c I found one I was confident in but now I can't seem to get that manufacturer at any pharmacy near me. I don't want to be unnecessarily overly concerned about this, but since it is a medicine I take daily, I want to be pretty certain it is safe (I have both celiac and gluten ataxia so I need to be very careful with any gluten intake and cross contact.)      
×
×
  • Create New...