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

[LumpyLady]

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

[trents]

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]

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]

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.  

[LumpyLady]

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]

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]

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 May 30, 2022 by trents