Two Years gluten-free, Months Of Abdominal Pain. Anyone Can Relate? Foods?

[alesusy]

I've just made two years gluten-free as a certified celiac and lactose intolerant, and five months ago after a bad bout of diarrhea I had a bloated and painful tummy. The bloeating eventually went away but the pain persists. Normally concentrated in my upper right quadrant but can also move around to upper right and lower right and lower left; it can be a burning or a twisting or a feeling of trapped gas. It is never intolerable or indeed acute, but it is always there, sometimes more, sometimes less. I sleep ok at night.

 

Since I'm given to high anxiety, I have taken lots of tests (colonscopy, abdominal ecographies) and everything looks normal apart from some small diverticula and my having a LONG and TWISTED colon. Liver, kidneys, gallbladder etc LOOK ok.

 

I have gone to a second gastro doctor the other week (the first one says he thinks IBS) and he told me he want me to have an abdominal scan with contrast to rule out possible (but, he says, highly improbable) problems linked to celiac disease (refractary celiac... and possible consequences). These guys are both experts in celiac disease here in Rome, and the second one also says probably IBS.

 

(my BM are sort of irregular, rarely D, but very often spastic and pale)

 

Well, I AM anxious, but I also have read a lot of your testimonies. Apparently it is sort of normal to develop other food sensitivities on a stressed out gut. I have tried not eating several things but I've never made a "scientific" effort about it. I want to start as of today. Now this second doctor claims that nutritionists are "useless" and that gluten sensitivity does not even exist and that all celiac can get back to eat lactose products once healed and that healing doesn't take more than two years and blah and blah.

 

Question:  anyone can relate? did you develop OTHER intolerances after going gluten-free, and did they manifest themselves with irregular BM and pain?

 

thank you all

[cyclinglady]

I had many intolerances and allergies identified long before my celiac disease dx. I did find that I reacted to Xanthan Gum after my dx though. And I finally began to feel great when I went on a low carb high fat diet for diabetes. I am completely grain free (I eat to my meter). You might just consider eating fresh fish, meat, poultry, veggies grown above ground and berries and plenty of fat for a few weeks and then add back in some of your old foods.

I have gained back most dairy now (no intestinal issues at all) but still get congestion which I solve with an anti-histamine. The same for eggs, but I am still allergic to garlic.

I do not think everyone can recover from lactose intolerance as there are many folks without celiac disease and (depending on their ethnic background) are never able to consume dairy.

Keep a food journal. I hope you are able to figure it out.

[alesusy]

thank you. This is what I've been thinking - going grain free, possibly keeping in rice and quinoa for now, and apart from that, meat, poultry, olive oil, veggie but no nightshades, fish. I want to keep eggs in because I love them, but... who knows. Fruit and nuts.

 

Then I talk about it to the new doc who scoffs and says THERE IS ABSOLUTELY NO SCIENTIFIC EVIDENCE, IT'S A LOAD OF BS.

 

Well, I want to say but I don't (since it is patently useless) then how come I hear people saying they got better on low carb?

[realityrain]

I had to go on the Autoimmune Protocol before 95% of my symptoms went away, it was hard but so worth it to find out what other foods I can't handle like, soy, corn, nightshades, etc (I've been off dairy for over 20 years). I have to stay grain free to feel my best, even too much rice will cause bloating and pain if I have it too many times in a week but corn and nightshades are just as bad on my body as gluten, nightshades probably worse. Your gut is probably pretty damaged too and it takes a long time to heal but it won't if you are still eating things that it doesn't like. I didn't even know a pain free life was possible until I went on the Protocol. Amazing results, no pain, my mysterious skin issues went away, and I lost the 30 pounds that had kept many doctors from testing me for Celiac in the first place until I found one who realized there can be overweight Celiacs as well as skinny ones. I hope you find what is bothering you!  It can seem overwhelming but it is worth it! 

[mamaupupup]

I agree with the above posters: we have three Celiacs in our household. Our out-of-the box thinking cardiologist Dr Gundry insisted we go 100% grain free and avoid nightshades after we explained some of one of our kids' symptoms persisted. we have followed an autoimmune paleo protocol very successfully and are healthier than ever. listen to your instincts, find doctors who support you or who at least don't fight you, be brave we have to be pioneers sometimes! good health!

[cristiana]

I had some gluten free oats a couple of months ago and felt awful for some weeks afterwards.  Do you eat gluten-free oats?   It has also taken me some months to realise that orange juice actually gives me pain and bloating and other gastro symptoms.  But it has taken me such an age to realise that and suffering from health anxiety hasn't helped at all!  All I am saying is sometimes I think it is just one or two foodstuffs but it can take a such a long while to figure it out.  

 

I just wondered, are you eating out a lot?  I know in Italy things are pretty good for celiacs but then we really are putting our trust in kitchen staff who may not quite understand. I was talking to someone here in the UK who worked for two different major restaurant chains who are Coeliac UK approved and she said I was right not to trust these places, she saw them wiping down the so-called special celiac food preparation areas using used cloths from the main pizza restaurant etc.  Of course, I can only take her word for it but I can see how cross contamination happens.

[1desperateladysaved]

I read in the book Say Goodbye to illness  by Dr. Devi Nambudripad that one can experience pain in lower right quadrant that is due to food sensitivities.  I was thought to have gallbladder issues, but my episodes of problems ended when I switched my diet to exclude nearly everything I ate over 30 years of undiagnosed celiac.

 

Dee

[icelandgirl]

Unfortunately, yes. I've given up soy, dairy and legumes. The thing that helped the most was giving up carrageenan...an additive found in almond milk, yogurt, etc. For me it was in the almond milk I was using to make my smoothie each morning. I read about the digestive issues it could cause and was surprised to find it in my almond milk for sure.

A lot of Dr's are skeptical that changing diet can help...I'm not sure way. Why couldn't changing the way we eat positively impact our lives?

I saw a friend recent who remarked how skinny I was. I said...well all I eat is meat, fruits and veggies. Boring, but it helps my digestive system for sure.