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Left side abdominal lump, celiac not getting better 9 months on gluten free diet

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Hi Everyone,

I've been diagnosed with celiac and I have been gluten free for the past 9 months, but I have not getting better.  The only thing that improved is that I no longer have diarrhea after eating meals.  I have bloating after eating, stomach pain, severe dry eye and a lump on my left side below my ribs that is becoming more painful lately.

I am wondering what this lump can be?  I've had it since before I was diagnosed but it has only recently been getting painful and feels like it is getting bigger.  I had a CT scan a year ago that didn't find anything and the colonoscopy and endoscopy I had that found the celiac disease 9 months ago didn't find anything related to the lump.

I'm wondering what this lump could be.  Can it be inflammation from the celiac or is it likely something else?

I'm seeing my gastroenterologist tomorrow and I'm looking for suggestions.  He first thought the lump was gas and that I had SIBO / bacterial overgrowth but two weeks of Doxycycline made absolutely no difference for me.  I would love to have some ideas of what this could be so I can get him to run some tests on this lump.

Thanks.

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Well you approached the SIBO side...what about candida? Stuff actually sets up worse after antibiotics. The good bacteria helps kill the stuff, but antibiotics can make it worse and kill off the good guys. It can cause gas, bloating, cravings for sugar, a almost drunk/hung over feeling. If your diet has been high in carbs/sugars then good chance.

Other thoughts it could be another AI disease or gut issues....some of us get those, I gut Ulcerative Colitis by example with its own set of triggers...in my case this includes the rare sugar triggers.
Could also be your not as gluten free as you think, if your eating out, using a shared kitchen, did not clean out the kitchen and replace certain things you could be still getting it from sources...this diet can take over year to master. Reread the newbie 101 section to be sure.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
To be on the safe side go to a whole foods only diet for a bit, also be sure to remove dairy and oats from your diet....the enzymes to break down dairy are from the vili which are damaged, and oats are commonly CCed along with the fact 10% of celiacs react to oats also regardless.

Food intolerance issues and sensitivities...gluten is not our only issue, most of us develop some other kind of food issues with certain foods causing symptoms....keep a food diary, and go to a whole foods only diet, then try certain foods and record changes it might be a spice or something like onions, garlic, tomatoes, potatoes, carbs, soy, corn, etc.
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.wikihow.com/Keep-a-Food-Diary

As to the lump I am unsure, hernia? Gas distention? Like hard lump you have to press to feel, or a distended soft lump? Do you have blood in the stool, or signs of bruising, darkening around the lump? Yellish skin, or yellow in the whites of your eyes? I would really see about having a doctor look at it.

 

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Posted (edited)

Ask your GI to check your antibodies.  Rule out celiac disease as the culprit.  To learn more about celiac disease follow-up care:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

A repeat endoscopy might be needed.  

Edited by cyclinglady

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The lump may be symptom of diverticulitis?  It is certainly worth getting it checked on.  Your GI should have some idea.

Ennis is right, a simple whole foods with no dairy is a good choice whenever you are having symptoms.  Some of us react to oats also so they might be something to eliminate for a month.

It's hard to troubleshoot someone's diet over the internet.  But generally the simpler your diet and the less processed foods you eat the less chance of getting glutened.   Also it can help to avoid sugar and carbs for a while until things settle down.

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Thanks Everyone.  The lump is somewhat soft but also hard enough.  I can move it and lift it up with my skin if I pull on it.  If I press on it I can make it bruise as well.

I did have a candida problem previously which I found via a stool test.  After a year of treating it my last stool test said no more candida.  That was taken about a month before taking the antibiotics, so it's possible it has returned but I am not sure.

No yellow skin or yellow in the eyes.

I think I will either get a repeat endoscopy or more likely the capsule / pill endoscopy as I am not convinced a regular endoscopy will show me the full scope of the problem since it can only see the first 3 feet of a 20 foot long small intestine.

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If you can feel it and manipulate it, your GI should check you for a hernia or fatty tumors.  Both my dog and my neighbor had fatty benign tumors.  Of course cancer should always be ruled out. 

Now that you know you have celiac disease and not all your symptoms are resolving (and you are adhering to a gluten free diet which repeat blood tests can reveal), look for other autoimmune disorders.  Many of us have multiple ones.  Dry eye?  Rule out sjogren’s:

https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216

 

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Oh if you can grab it like that I think probably a internal cyst, growth, hernia. Need to have a doctor look at it, probably biopsy to make sure nothing cancerous or a infection.

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That sounds like a lipoma.

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