New abdominal pain after gluten free diet

[PerpetuallyConfused]

I was diagnosed with latent coeliac disease following a low positive blood test but no findings on endoscopy. I was undergoing many many tests to find the reason for unexplained severe and constant lower back pain which started suddenly one day and had been ongoing for about 3 months. I also had strange other symptoms like joint pain and insomnia. My GI said this meant I could choose whether to keep eating gluten and monitoring the situation or whether to stop preventatively. As my mom has celiac so I knew I was probably genetically predisposed and I was dealing with a myriad of unexplained symptoms I decided to stop eating gluten as I couldn't take anything getting worse. 

However, around a couple of weeks after cutting out gluten I have developed constant abdominal pain on top of my existing back pain. I have been extremely careful in terms of what I eat and cross-contamination (although I made a couple of mistakes in the first week or so) but I am at a loss as to why I have gotten worse since stopping gluten. I was not getting any stomach pain when I was eating it before. My insomnia does seemed to have improved since going gluten free but that is the only positive difference I have noticed. It has been 2 months now eating gluten free and the pain only seems to be getting worse. It does seem like my stomach has become super sensitive as spicy foods, coffee etc seems to make things worse even being completely gluten free. I never had any issues with a sensitive stomach previously. I have mostly cut out dairy in the hopes that this will help but I really don't know what else to do. I know healing can take time but seeing as I did not have any damage on my gut found during the endoscopy I don't think that this is the case for me? Has anyone else had a similar experience? I really don't think I can cope much longer I'm in so much pain and painkillers/ buscopan etc are having no effect. 

[cristiana]

Hello Perpetually Confused and welcome to the forum!

I am sorry you are having more pain - it's disappointing, but be reassured, quite a few of us on this forum didn't bounce back straight away after going gluten free.  There are several reasons you might be feeling worse:

• Perhaps trace amounts of gluten are sneaking through.  Are you sharing butter or a toaster, for example, with a gluten-eater in the same house or at work?  You do need your own dedicated toaster and your own butter.  And make sure no-one double dips spoons in sauce, chutney, jams etc, leaving crumbs. Another thing, have you checked your medication and your supplements for gluten? 
• Could it be heartburn or gastritis? Annoyingly, these have become problematic for me in recent years but this could be down to my age rather than coeliac disease, as I have non-coeliac friends who are now fellow-sufferers!  But I do find that if I am glutened, eat oats (more about that later), or take certain medication such as NSAIDs or some antibiotics, that this can kick off gastritis, heartburn  and even reflux.  And when I have gastritis I can barely tolerate spicy food, coffee, alcohol, fatty food.  Google gastritis/reflux diets for some tips. 
• Other food intolerances.  I see you have cut out dairy.  A dairy intolerance may well be temporary while you are healing so that's a good move.  When you feel a bit better, you can try to reintroduce it.  (Incidentally, my gastroenterologist told me to give up dairy for at least three weeks before I would see results, it can take a while for the bloating and pain to go).  Also, it's a bit of a chore, but if you can keep a food diary for a few weeks, you may find quite soon that there are certain foods that make the pain worse.  A common culprit is soya.  I had a real issue with soya for a while.  I can eat it again now, but if for some reason, say, I eat a biscuit is made with soya flour, I can't eat more than one - it still makes me uncomfortable to some degree.  
• Are you still eating oats?  The problem with oats is when are processed alongside gluten containing grains they become contaminated.   So you need to buy "pure oats" which are certified gluten free.  But there's more - here in the UK, we're advised to give up even pure oats for six moths post-diagnosis before reintroduction because a minority of coeliacs cannot eat oats as they contain the protein avenin, which gives some coeliacs some of the same symptoms as gluten.  This is annoying as I'm one of the  minority - and bizarrely, before diagnosis, I could eat oats for England!

There are of course other GI issues that can cause abdominal pain, such as IBS, but the above might highlight something you are missing.  

A lot of my pain, which I found really disconcerting in the early days, was down to bloating.  I had lower abdominal bloating prediagnosis, and for a while after, but iron supplements caused me such awful pain in my stomach area after diagnosis, under my ribs, that one day I recall wondering if I might be having a heart attack and would I make it across the street!  So if you are supplementing iron under medical supervision - make sure your doctor is keeping an eye on your levels, they mustn't go too high - you may like to try a gentle supplement like Floravital if it is available where you live which is gentler (don't buy Floradix, it's got gluten in it!)

Lastly, the following article may be helpful

https://www.celiac.com/celiac-disease/the-gluten-free-diet-101-a-beginners-guide-to-going-gluten-free-r1640/

I'm taking a bit off time off as a Moderator for little while due to other commitments but I wanted to say hi before I signed off!  Others will be here to advise - please don't hesitate to come back to us any time.  

Cristiana

PS  I noticed your spelling of "coeliac".  If you are posting from the UK, I would look into joining Coeliac UK for the first year.  They have a shopping app and a Gluten Free Food and Drinks guide which will help you enormously.

 

 

Edited January 28, 2022 by cristiana

[1desperateladysaved]

I have been gluten free for over a decade.  My daughter is just starting her journey.  One must read every label.  In fact it may be easier to just eat  meat and veggies for a while. Thinking that tater-tots frozen in the bag is just potatoes, eggs and salt could end with bad repercussions!  IF your tummy aches, a smoothie with fruit, seeds, and water might help ease the pain.  Appetite loss is common with accidental gluten and  homemade smoothies can sometimes provide some light nourishment.  Bananas also seemed healing to me.  I like to cook from scratch because I Know for sure that no flour or additives sneak up on me.

A couple of stupid things that got me in the distant past is bacon, stevia flavoring, and the family using barley flour in the kitchen!  Be vigilant, and I hope that your tummy will be settled and soothed.

Hang on and travel through it, IT IS WORTH IT!

[Scott Adams]

Welcome to the forum. Be sure to discuss your new symptoms with your doctor, of course it could be something worse, but this article may also be helpful, and covers some of the things @cristiana mentions, plus more: