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

Another Newbie - I Think!


Megsara

Recommended Posts

Megsara Newbie

Hi Everyone!

So, I have been having a bunch of different symptoms the last few months - stomach pains after I eat, bad bloating, feeling full for a lot longer than I should, increased thirst. I thought it was perhaps IBS, since I also have pretty bad acid reflux, though that I have had a lot longer. The doctor did a bunch of blood tests and one came back saying I have an anti-gliadin antigen (I think that's what it is called) which is suggestive of celiac. I have read some conflicting things about how definite it is that one has celiac disease when they test positive for this antigen. I am thinking that along with all my symptoms I probably do have it, but what else will they do to confirm? I have a follow up at a GI specialist on Jan. 4.

For now I am going to work with the idea that I do have celiac. For the first 24 hours I was feeling okay about it, since I was originally fearing something like stomach or intestinal cancer. But after doing research and reading everything that would be forbidden I started to get depressed. The nail in the coffin was realizing beers (except for gluten free) would be a no-no. Love beers, especially Guinness. I know there could be worse things, but.....

Some more questions....I've been having to get up at night almost every night recently to go to the bathroom. Is this common with celiacs who are still having some gluten in their diet? And feeling dehydrated on days when you have gluten though have tons of water?

I am sure I have about a million other questions, but that should do for now. Thanks for your help!

-Meghan


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Welcome to the board!

Well, your symptoms do suggest celiac to me. Though I didn't have all the same symptoms you describe, I would get extremely thirsty from even a small amount of wheat - like a bit of bread for example. Drinking tons of water just didn't help either. Since the range of symptoms is so vast from person to person, your best diagnosis would be to try going gluten-free and see how you feel. This is considered by the majority to be the most accurate means of a clear diagnosis. However, the length of time it will take for symptoms to diminish/disappear also varies quite a bit from one individual to the next, so you may have to wait longer than you'd prefer. Some folks see a definite difference overnight, while others see little or no change for weeks or even months. My personal experience is that some symptoms disappeared in a matter of a few days, and others took several months. The thirst was really an obvious one, and one of my main clues that wheat/gluten was a likely culprit. Over time I've noticed little things that I didn't even think were signs of any particular issue actually clear up for the first time. Many of them I have always had and just came to regard as part of life.

As for your apprehension at the idea of having to give up some things you really like, I would point out that many times it is a chemical addiction that makes a person feel that way, and not that the food is actually so enjoyable to them. For example, I dreaded the thought of having to give up pasta. It was (so I thought) one of my most favorite foods. However, now that I no longer have gluten running through my veins, I could care less about pasta. Even though there is a great rice pasta available (Tinkyada brand), I seldom have it, and when I do there are no bells ringing nor angels with harps. It's just pasta, though it is indeed every bit as good (and then some) as any wheat pasta I've ever had. And I always sought the highest quality durham semolina pasta I could get. It was this experience which made me realize that my intense desire for pasta had been other than the good taste. I believe you will find the same to be true for the no-no's you currently treasure once you get gluten out of your system.

I'm sure the the general consensus among the members here will be to try the gluten-free diet. You can depend on this board and the many helpful and knowledgeable folks who participate to guide and assist you in finding your way through those tough early days. As your symptoms fade, your determination will grow, and you will find it easier than you now perceive. Also keep in mind that most folks start out with a very narrow diet, and going gluten-free brings in such a wealth of new food choices, you'll soon realize how truly limited you were, and how much more variety you'd been missing out on all along.

I really hope you obtain the good health you seek and deserve.

Guhlia Rising Star
Hi Everyone!

So, I have been having a bunch of different symptoms the last few months - stomach pains after I eat, bad bloating, feeling full for a lot longer than I should, increased thirst. I thought it was perhaps IBS, since I also have pretty bad acid reflux, though that I have had a lot longer. The doctor did a bunch of blood tests and one came back saying I have an anti-gliadin antigen (I think that's what it is called) which is suggestive of celiac. I have read some conflicting things about how definite it is that one has celiac disease when they test positive for this antigen. I am thinking that along with all my symptoms I probably do have it, but what else will they do to confirm? I have a follow up at a GI specialist on Jan. 4.

For now I am going to work with the idea that I do have celiac. For the first 24 hours I was feeling okay about it, since I was originally fearing something like stomach or intestinal cancer. But after doing research and reading everything that would be forbidden I started to get depressed. The nail in the coffin was realizing beers (except for gluten free) would be a no-no. Love beers, especially Guinness. I know there could be worse things, but.....

Some more questions....I've been having to get up at night almost every night recently to go to the bathroom. Is this common with celiacs who are still having some gluten in their diet? And feeling dehydrated on days when you have gluten though have tons of water?

I am sure I have about a million other questions, but that should do for now. Thanks for your help!

-Meghan

Riceguy makes a great point about the addictive nature of gluten. I'm sure someone else will get into the discussion of it's similarity to opiates. It's hard to "quit" gluten and the first few weeks can be pretty tough if you get withdrawal symptoms (I did). That being said, once you make it past the first few weeks it is all downhill from there. It gets much, much, much, much easier as time goes on. I don't even realize anymore that I'm eating a "special" diet. It just seems normal to me, my family, and my friends. I eat everything they do, mine just looks and tastes better than theirs.

When you get up to go to the bathroom, are you just urinating or are you having frequent bowel movements? If you're urinating it could be due to stress or mineral deficiencies OR it could be due to a problem thyroid problem. Thyroid issues are pretty common in Celiacs. If you're having frequent bowel movements I would assume that this is due to Celiac Disease.

As for beers, there are some REALLY good gluten free beers out now. Bard's Tale, New Grist, Red Bridge, and Ramapo Valley's Honey lager are all gluten free. Red Bridge is actually made by Anheiser-Busch so it should be nationally available very soon. They're in the process of rolling it out right now.

Sophiekins Rookie

Meghan,

Please, please, please do NOT go gluten-free until you see your GI - if you want a medical diagnosis. When you see the GI, he or she will take a medical history focussing on your digestive function and use this in conjunction with your bloodwork and his or her physical exam to determine whether you are a candidate for biopsy. If you are a candidate for biopsy, this means that your Dr feels that you may be a borderline case, or would like more information before making a definite diagnosis. The biopsy is a relatively simple procedure (mostly painless), and the full diagnosis would involve two or three - one before you go gluten-free, one after six months gluten-free, and one after a year gluten-free. If you go gluten-free before your GI appointment, your Dr cannot make a full diagnosis if, as it seems from your description, your numbers are not high enough to be conclusive on their own.

If you do end up going gluten-free, try not to focus on the "forbidden" foods - there are thousands and thousands of foods which are naturally gluten-free and very tasty. Try googling Gluten Free Girl (it is a food blog written by a celiac foodie, and it's enough to make your mouth water. . .sorry I don't have the exact URL). Instead of saying stuff is dangerous, my family instead focus on foods that are "Sophie-friendly" - looking at it from a positive angle will help, as will feeling better. You probably can't imagine at this point how great you are capable of feeling gluten-free - I know I couldn't. When you go gluten-free, it may also help to get together some friends and go out for one last dinner to celebrate the start of feeling good - have one last Guinness and savour it, and then, remembering that flavour, move on to new and different ones.

Good luck!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,976
    • Most Online (within 30 mins)
      7,748

    Redrayvyn
    Newest Member
    Redrayvyn
    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

    • cristiana
      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
    • cameo674
      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
      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
      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
      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/   
×
×
  • Create New...