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

Newbie Clueless In Pain! Help!


Missal

Recommended Posts

Missal Newbie

Hi,

I have suffered three bouts of what my docs diagnose as gastritis in three months apeach one lasting around a week and being incredibly painful, docs have asked me to have a scan to see if it's my fall bladder,, waiting for appointment. Reading these forums is great but I have no idea where to start with my issue as my go seems happy to label me but not to actually do anything or give any advice. I am to take lanzaprazole every day and have a prescription of bus open for when I have symptoms, I take these alongside paracetamol or codeine, staying well clear of anti inflammatory pain killers.

I have have dermatitis, which I would have never related to my stomach pain and this flares up occasionally, but generally I have a small amount on hands and feet, I blister up occasionally but am used to it now so doesn't bother me that much, I don't treat It I just let it come and go in its own time.

My pain is almost labour like radiating around my back, cramping twisting in my stomach, pain under my rib cage which feels almost bruise like.

I suffer from depression and mainly anxiety which I use Sertraline for, up until the last week or so I have ran my own business which has caused me a huge amount of stres, I have decided that it's not worth the pain and have decided to take some time off.

I'm just looking for some advice on what could potentially be wrong as docs seem to just want to fob me off, I don't think they'd take too kindly to me telling them what's wrong, but if I can get some guidance and proper advice from people who know their stuff, at least I'd sound less neurotic!

Hoping someone has some words of wisdom, this is all very daunting

Missal :)


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Make sure that gallbladder scan is a HIDA. A HIDA scan will check for functionality of the gallbladder. Other tests like an ultrasound will only catch stones. My HIDAa revealed 0% functionality and was infected -- no stones. I had gallbladder pain on and off for 20 years (it would work and then not work) and surgery was my only option. It is a family curse!

But you sound like you could have celiac disease too. Have you been tested?

1desperateladysaved Proficient

Food intolerances/allegies can cause gallbladder like pain.  I read this in the book, Say Goodbye to Illness.  by Dr. Devi Nambudripad.  My gallbladder showed stones, but no blockages or inflammation.  I had symptoms that could be gallbladder, but these went away when I avoided nearly all foods I ate while I had leaky gut.  I wish you well in figuring out the roots of your problems and solving them.

 

Dee

Missal Newbie

Thank you, any ideas as to why it's on/off? Last time I shifted it really quickly by eating raw foods only, this time I haven't changed anything and it's sticking around, I can feel it waining but still there.

It's so debilitating, first three to four days tend to mean no sleep and with 5 kids that's a real struggle :(

nvsmom Community Regular

Welcome to the board.  :)

 

Many, or even most, diseases seem to have symptoms that are on and off again,  Gall bladder problems and celiac disease are both that way.  It's like our body is trying to make it harder diagnose on purpose.  ;)  I don't know about very much about gall bladder issues (beyond that celiac disease can cause some of the problems) but I do agree that your symptoms could be celiac disease so you might as well get tested.  Keep eating gluten until you are tested and try to get the whole celiac disease panel run:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IGA
  • total serum IgA (control test)
  • AGA IgA and AGA IgG (older and less reliable tests)
  • endoscopic biopsy
  • dh biopsy (beside rash) - some with dermatitis herpetiformis will not test well in the blood tests

If the problem is caused by non-celiac gluten sensitivity (NCGS) these tests will be negative - the only way to diagnose NCGS is by a positive response to the gluten-free diet (over many months).

 

Good luck.  I hope you find answers soon. It's tough not being at your best when you have youngsters relying on you. Hang in there.

cyclinglady Grand Master

I do not know why it was on and off. Attacks were so severe that I always passed out. After waking, I would vomit and then have intestinal pain that lasted for up to 12 hours. I went to many ERs, but no one was able to diagnose me. In the end, I passed out at a company dinner in Las Vegas. By this time, my gallbladder was infected. I had been feeling bad for two months. The ER doc suspected appendicitis but the surgeon suspected gallbladder and ordered a HIDA scan. Surgery was my only option. Scary to have it away from home! My work friends were so supportive until my husband flew in.

My Dad is one of seven and six of his siblings have had their gallbladders removed. I am one of 27 first cousins and the five oldest have had theirs removed. Of those, that have had their gallbladders removed, three of us have celiac disease. The others do not want to give up gluten, so they refuse testing. Ugh!

I can tell you that my only symptom at the time of my celiac disease diagnosis was anemia. I was shocked!

I hope you find an answer!

Missal Newbie

Thanks:)

I'm in the UK so it's around 2am here and have been woken up by my first ever explosive diarreah, sorry for the information overload but I'm new to this and am assuming it's all connected.

My guts feel rotten :(


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



Celiac.com Sponsor (A8-M):



Missal Newbie

If I do In fact have celiac, Where do I start with nutrition? I understand that until I am tested positive I shouldn't change anything but hypothetically speaking where's the starting point for nutrition? Is here anything else I need to do?

I have a German mum friend who is like the font of all knowledge when it comes to this sort of thin (her son has ASD as does mine, but her son is Gluten-free Casein-free) I honestly don't know how she finds...let alone stores all the info including nutrition, supplements etc, I think she's amazing, I'm just not sure im cut out to be this good at knowing what I need to know, hope that makes sense!

Missal

cyclinglady Grand Master

Nutrition? That is easy. Gluten free grains, veggies, fruit, meat, eggs, fish, all the things you should normally be eating (except for wheat, rye and barley).

But...just focus on your upcoming appointment. Get the scan and talk about the celiac blood test with your doctor. I know that you are hurting, but it doesn't make sense worrying about something (like going gluten free) if you do not need to!

Missal Newbie

Thanks, I just called my doc as I missed a bloods appointment in November so thought I'd check if I could still pick it up, they said yes, I asked what they were testing for and they told me

Full blood count

Liver function

U's & e's

Amylase

Can anyone shed any light on what the go may be thinking? I have an appointment on Monday where I will discuss the new symptoms and my findings here and request further testing, just wondering if anyone has any clue what my go may be considering?

Missal

cyclinglady Grand Master

I am no doctor, but those appear to be just standard tests (checking for anemia, etc.). Good to have. I could not possibly second guess what you doc is thinking.

ravenwoodglass Mentor

Thanks:)

I'm in the UK so it's around 2am here and have been woken up by my first ever explosive diarreah, sorry for the information overload but I'm new to this and am assuming it's all connected.

My guts feel rotten :(

I know it doesn't seem like a good thing that this is starting to happen but it may keep you from getting labeled with IBS. Be sure to let the doctor know that the D is waking you up from sleep as that doesn't happen with IBS. 

Bring the list of celiac tests with you and request that the doctor add those to the tests he is already doing. 

I hope you get some clear answers and that you are feeling much better soon.

nvsmom Community Regular

Some celiacs are a bit low in some nutrients so if you are concerned you could have these checked: folate, B12, D, A, ferritin, K, Mg, Ca, Fe, Cu, and zinc.  

 

Giving up food with gluten should not affect your nutrient levels unless you are relying on fortified (vitamins added back in) products, like breads or cereals, for your vitamins. Veggies, meats, fruits,some eggs and a few grains (debateable) are all you need.  

 

Best wishes.

Missal Newbie

Update

Managed to get my docs to pop the celiac blood test onto some tests I was having done, there were two different tests, so... Not sure what I'd like the results to show but they're done, just waiting now :/

Missal

Missal Newbie

Update

Bloods back and antibodies result is normal, going to pick results up.

I have to see docs Monday as my full blood count is "borderline" no further clarification than that, does anyone have an idea what this means?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,979
    • Most Online (within 30 mins)
      7,748

    mary lou grolimond olson
    Newest Member
    mary lou grolimond olson
    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

    • Scott Adams
      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • 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.
×
×
  • Create New...