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

Temporary lumps and bloating, Doctor thinks IBS - do I need a test?

LumpyLady
 Share

Recommended Posts

LumpyLady Newbie
LumpyLady
Posted

Hi all, 

Looking to see if anyone who has been diagnosed has had similar experiences to me, as I want to know if a doctor will take me seriously if I ask for a test for celiac! 
 

About a year ago, when laying on my back in bed I noticed I would get lumps in my low right abdomen (around where I now know the ileocecal valve is) that felt like very localised bloating. If I put any kind of pressure on it, it would go, but it felt like half a golf ball. My partner has only been quick enough to feel it once, and agreed with me that it was there and I wasn’t imagining it(!), before it disappeared again. Over the last year I’ve gotten more bloated more often, and I’m often very uncomfortable in a lot of my clothes. 
 

I’ve had abdomen examinations, but the ‘lump’ of course never chooses that time to show up, and I’ve had nothing come up when I had ultrasounds of my pelvis and ovaries (phew).

 

I’ve been given IBS tablets and peppermint capsules, and prescribed some antacids for the reflux I get - but I often still look/feel huge. I’m in my early 20’s and probably around a size 8-10, so when I look bloated I look about 4-5 months along. The IBS tablets help with some of the pains I get when feeling blocked up, and help get things moving - but my stool is often very soft, and quite mucusy. 
 

I know this is a lot of TMI, but I figure this is the place to be open about it, in the hopes someone can offer me some insight or reassurance. I’m often exhausted, bloated, switching somewhere between C and D, and dealing with recurrent thrush (probably unrelated but you never know!) … 

 

Thanks in advance, 

Lumpy Lady

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, LumpLady!

I don't know about the lumps but the other symptoms you describe are certainly classic ones for either celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS but it has many of the same symptoms as celiac disease and is 10x more common. Celiac disease must first be ruled out. Do you notice these symptoms coincide with eating wheat products? If you were to totally avoid wheat for 2-3 days would they disappear? But, keep in mind that you must be eating regular amounts of gluten daily (equivalent of 2 slices of wheat bread) 6-8 weeks before testing in order to get a valid test. So don't go all in gluten-free for an extended time if you want testing done. I think your symptoms align quite well with celiac disease or NCGS and that you have good grounds for asking to be tested.

Scott Adams Grand Master
Scott Adams
Posted

Interestingly one of my first symptoms that I can recall with a similar pain and bloating in my lower right side, very similar to what you've described. This symptom alone could be many things, however, but this combined with your other symptoms tells me that it would be worth getting screened for celiac disease if that is possible. It would mean eating 2 slices of wheat-bread daily for 6-8 weeks until a celiac blood panel screening is done.

If you don't wish to go the diagnosis route then you could go gluten-free for a few months to see if your symptoms go away. 

Be sure to follow up with your doctor about your symptoms, as they could also be something else, but in general, if they go away on a gluten-free diet it would likely mean either celiac disease or NCGS.

RMJ Mentor
RMJ
Posted

Are you thin?  I sometimes have a lump in my low right abdomen.  It was there once when I was seeing a doctor and he said that it is part of my intestine, which can be felt in thin people.  

  • 2 months later...
LumpyLady Newbie
LumpyLady
Posted
  • Author
On 3/18/2022 at 2:03 PM, trents said:

If you were to totally avoid wheat for 2-3 days would they disappear?

Hi Trents!

Thanks for your reply, interestingly for the last month or so I’ve been avoiding gluten for as much as possible and I suddenly have a waistline again. I didn’t realise quite how much permanent bloating I had on “good days”. I spoke to my Doctor and they said they were going to refer me to a Gastroenterologist (?), but there is no indication of how long that can take. Do you know if the celiac test is one I can just ask my doctor for?

Thank you :)

LumpyLady Newbie
LumpyLady
Posted
  • Author
On 3/18/2022 at 6:11 PM, Scott Adams said:

Interestingly one of my first symptoms that I can recall with a similar pain and bloating in my lower right side, very similar to what you've described.

Hi Scott, 

Thank you for your reply. I have to ask, did you find that sometimes physical activity would hurt the same area? Some things where I have to tense my stomach muscles result in a sort of sharp pang, and the area is then sensitive for a little while (eg. If I sneeze not long after it feels like pressing a bruise). This is also given that h haven’t eaten gluten in about 4 weeks. I can’t see this being a celiac symptom, but worth asking I feel.

Thank you! :)

On 3/18/2022 at 10:03 PM, RMJ said:

Are you thin?  I sometimes have a lump in my low right abdomen.  It was there once when I was seeing a doctor and he said that it is part of my intestine, which can be felt in thin people.  

Hi RMJ, 

When I first noticed the lump I was somewhat slim, but I’ve put on about 20 pounds and still get similar sensations - so I don’t think it’s just down to that! Most of my life I’ve been probably underweight (until now!), and I never felt it before March 2021.

Is this similar to your experience? Thanks :)

trents Grand Master
trents
Posted
(edited)
5 hours ago, LumpyLady said:

Hi Trents!

Thanks for your reply, interestingly for the last month or so I’ve been avoiding gluten for as much as possible and I suddenly have a waistline again. I didn’t realise quite how much permanent bloating I had on “good days”. I spoke to my Doctor and they said they were going to refer me to a Gastroenterologist (?), but there is no indication of how long that can take. Do you know if the celiac test is one I can just ask my doctor for?

Thank you :)

Yes, your GP can order a celiac antibody blood test but he/she seems to have deferred to a GI. But you must have been eating 2 slices of wheat bread (or the equivalent) daily for 6-8 weeks prestest for it to be valid. Ask him to order the tTG-IGA, the total serum IGA and Deamidated gliadin peptide (DGP IgA and IgG). https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Edited by trents
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,869
    • Most Online (within 30 mins)
      7,748
    Shining My Light
    Newest Member
    Shining My Light
    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

    • ehb
      Refractory Celiac disease - what to do

      By ehb · Posted

      Thank you @knitty kitty this is all very helpful insight, and I was considering doing a strict elimination diet like this. I was considering the one from this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC5691745/ which seems a little shorter/less restrictive? But I see how the AIP diet could be better for addressing the general inflammation/autoimmune response. Did you work with a nutritionist or doctors for this? I am very worried about going on such a strict diet without professional support and losing essential nutrients/body weight. If not, how did you know which supplements are needed? I am also struggling in general with managing and maintaining such a strict diet while living a full life as a 27 year old - I travel frequently, and will be doing a cross-country road trip to move for an intense job in the fall, and feel that something like this will be nearly impossible to maintain on the road and during travel. I keep feeling like I can be more strict and deal with this once I have a more stable life, but that stability never seems to come. I am not sure whether to start this now to get it under control for a couple months before the move or wait until I will (hopefully) be in one place for a while after the move. I would like professional help from therapists, dieticians, and doctors to deal with this, but so far they have all been mostly dismissive and not given me many options, which has led to me being dismissive and just following the typical recommendations. No one has taken it seriously and recommended anything so drastic like this. 
    • knitty kitty
      Refractory Celiac disease - what to do

      By knitty kitty · Posted

      @ehb, welcome to the forum!   Yes, figuring out the gluten free diet and recovery can be really frustrating at the start.  There are things that you can change now which are more restrictive for a while, but they promote healing, and, in future, you'll be able to relax those restrictions.   I found the Autoimmune Protocol Diet most helpful.  It's a very strict Paleo diet, but I started feeling better quickly after doing the "standard GFD recommendations" without improvement.  It's very strict during the elimination phase, but other foods are added back once there's intestinal improvement.  I recommend the book The Paleo Approach by Dr. Sarah Ballantyne, a Celiac herself, who developed the diet.   No eating out on the AIP diet.  No gluten free prepared packaged foods.  This removes much cross contamination.  No alcohol.  Alcohol adds to the inflammation and damage.  No oatmeal.  No grains.  No pseudo grains (ancient grains like millet, quinoa, sorghum).  No beans (legumes).  No pulses (lentils, peas).  No nuts.  No seeds. These contain hard to digest lectins that promote inflammation.  No nightshades (potatoes, tomatoes, peppers, eggplant).  Nightshades contain alkyloids that cause intestinal permeability (leaky gut). No dairy.  Lactose intolerance (due to damaged villi) and a reaction to Casein (the protein in dairy) are possible.   Casein (the protein in dairy) resembles gluten enough to provoke an autoimmune response by the anti gluten antibodies the same as if it was  gluten.  Corn will trigger an anti gluten antibody response the same as to gluten because the carbohydrate storage protein in corn, Zein, resembles gluten.  Yeast and some rice will also provoke an anti gluten antibody response.  (Basmati rice is the safest.  But no rice on the AIP diet at first.)  Some breeds of oatmeal contain gluten. Gluten can become airborne during cooking. Boiling pasta water in restaurants is one way gluten can become airborne.     Airborne gluten from the ovens at the bakery section of a grocery or bags of dusty flour sacks in the  baking aisle can prompt a reaction.  The airborne gluten gets into the nasal passages which drain into the digestive system.   The autoimmune antibody production process is like an on/on switch.  Pictures are worth a thousand words... So...cut out all the triggers for the anti gluten antibodies, and focus on reducing the inflammation and repairing the damage caused by the antibodies.  Vitamin and mineral supplements help correct nutritional inadequacies resulting from the malabsorption caused by the autoimmune response.  Certain vitamins are needed to lower inflammation.  Others are needed for repair.   Try the AIP diet before considering yourself as having Refractory Celiac Disease.   Celiac is a marathon, not a sprint.  It's do-able.  Put your serious track shoes on.  
    • ehb
      Refractory Celiac disease - what to do

      By ehb · Posted

      Oh I also drink wine occasionally - I understand the typical recommendation is that wine is gluten free but I don't know how to handle the possible introduction of gluten with fining agents or oak barrels sealed with wheat paste 
    • ehb
      Refractory Celiac disease - what to do

      By ehb · Posted

      @Scott AdamsThe only restaurants or prepared food that I have eaten outside of my home for the last 6 months are from dedicated gluten free restaurants or facilities, except for once in February at a place that had a gluten free night where they deep clean the kitchen and are dedicated gluten-free for the day, and twice in April (due to out of state job interviews) at places that were not dedicated, but mostly gluten free where I questioned them to make sure they were following proper cross contamination protocols. I suspect I got glutened back in December from drinking water (but not eating anything) at an italian pizza/pasta place, so since then I'm not even entering gluten-heavy places. For the month prior to my most recent blood test I had only eaten outside my home two or three times at a dedicated gluten free bakery that is owned by a celiac family. I also occasionally (< a couple times a month) will have a labeled gluten-free canned seltzer from a bar, and will ask to open it myself so they don't touch the top of it. Are dedicated gluten-free facilities also a concern with this level of sensitivity - for example if they are using products without gluten ingredients but are not certified? One question I have is if the immune reaction and antibody levels are proportional to the amount of gluten or if it's more of an on/off switch. I am just concerned because I haven't seen any changes at all - I would be willing to be more restrictive if I were confident that it would actually have an effect, but I am feeling quite discouraged living such a restrictive life (even more restrictive than what it seems like is the standard recommendation) without any results at all. Going so far beyond the standard recommendations makes me feel a little crazy like I can't trust anything, but I'm willing to do it if I know it will improve my health. This was helpful for me to take stock of how much I have been eating out of my house, and maybe that should be the first thing I remove completely - thank you! 
    • Scott Adams
      Refractory Celiac disease - what to do

      By Scott Adams · Posted

      Also, there is this product:  
×
×
  • Create New...