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2 years gluten-free and still in pain

CherylA

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CherylA Newbie
CherylA
Posted

Hi everyone, I've just joined today after coming across this forum. I was diagnosed coeliac nearly two years ago after been told I had IBS for more than 10 years. I have been doing ok being gluten free and my partner has been brilliant, careful about cross contamination etc but in the past few months I've been in differing levels of pain every day. I can no longer eat corn or oats and have problems with raw tomatoes and peppers. I've switched to dairy free milk and yoghurts and I've always been ok with cheese. I asked my doctor for help and had more bloods done for liver, D12 and diabetes which were all fortunately negative but I'm still in pain. I'm seeing a dietician on Friday but not sure they can really help as last time I found it useless. I tried FODMAP for a month before I was diagnosed coeliac but find it quite restrictive. I just feel at a loss, upset and tired all the time and wanted to speak to like minded people for some support/guidance on how to get my life back ? 

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Ennis-TX Grand Master
Ennis-TX
Posted
23 minutes ago, CherylA said:

Hi everyone, I've just joined today after coming across this forum. I was diagnosed coeliac nearly two years ago after been told I had IBS for more than 10 years. I have been doing ok being gluten free and my partner has been brilliant, careful about cross contamination etc but in the past few months I've been in differing levels of pain every day. I can no longer eat corn or oats and have problems with raw tomatoes and peppers. I've switched to dairy free milk and yoghurts and I've always been ok with cheese. I asked my doctor for help and had more bloods done for liver, D12 and diabetes which were all fortunately negative but I'm still in pain. I'm seeing a dietician on Friday but not sure they can really help as last time I found it useless. I tried FODMAP for a month before I was diagnosed coeliac but find it quite restrictive. I just feel at a loss, upset and tired all the time and wanted to speak to like minded people for some support/guidance on how to get my life back ? 

Oats are a common issue with celiacs even gluten free ones. About 10% if I recall of celiacs respond to them just like gluten. Corn bothers some of us, I developed a severe allergy to it a few years ago. Tomatoes, and peppers are acidic, and and you can develop issues to them from multiple reasons. It could be a night shade intolerance, it could be a histamine issues, or a SIBO issue.

Best thing is to eliminate them from your diet and you can try bringing them back in a few months. Most of us get rotating intolerance, or permanent ones. Just part of this disease and having a damaged gut. A lot of time a accidentally glutenening can trigger new issues to pop up with a food that might go away later.   Keep a food diary for now and record everything you eat. Try eating a rotating diet removing foods you notice issues with and simplify it for now down to 3-4safe  whole foods while testing like this. Try different ones each day. Once you get a list of good foods and bad foods down you can try changing it up and getting a new normal back.

I myself have a very limited diet, and sometimes have bad and good days >.> dealing with a new found issues today in fact lol. Wish you luck feel free to read around, I openly complain here lots and get opinions and share my experiences here often. Sort of like a family of sorts where you can relate to people with similar health issues.

Wish you luck in finding your current issues, I had a huge revelation and a big turning point with my digestion this year with a bleeding issues etc. We learned I also have Ulcerative Colitis and a new diet plan is leading to much improved health.

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

Welcome Cheryl IA,

I too avoid oats. In fact since childhood I hated oats. I spent 20 years thinking  I was IBS, but in 2016 a gi Dr said no that diagnosis was not correct . In fact many former diagnoses were incorrect. I was unable to finish my gluten challenge past day 6, and since then my intolerance s are a plenty. In fact today I determined I can no longer take my beloved probiotic. 

Gluten, corn, and milk all are a no go says my body. I must also be careful of processed products that fortify with things derived from corn (even if corn proteins removed etc) . I had to stop an almond milk I was taking for it was fortified with a vitamin derived from corn. People on the boards here like Ennis encouraged me to be whole foods only after my challenge for I was struggling badly. I am finding I do best following a more paleo like diet coupled with beginning to make many things from scratch. It took me 9 months to find a tomato paste without corn. I'll attempt to can my own this summer if the garden fairies and mother nature find me worthy of a healthy and plentiful crop.

I am still not pain free it is now an indicator to drop something or pull out the food diary. Otherwise it almost appears I have thresholds. I indulge in a few gluten-free /corn free potato chips ( I'm weak I must have a vice-guilty as charged) but my body sets an inflammatory limit and I listen.  I am grateful it's summer because I grow all my own herbs etc.and everything is tastier made from scratch, minimal Ingredients but fresh.

Follow Ennis' s  suggestion and yes sometimes we must drop something that we thought was fine prior. Or you may only be able to eat a handful of a vice the body says is inflammatory. I believe my body has to downgrade from each intolerance gradually and its surveillance of it. once it knows one is gone/I remove it ,my immune system then says great let me tell what else ticks me off. 

Best Wishes and quick healing.

Feeneyja Collaborator
Feeneyja
Posted

A lot of celiacs who don't feel well after adopting the gluten free diet test positive for SIBO (small intestine bacterial overgrowth).  It can seem like you are having issues with all kinds of other foods. Namely, foods that are easily fermentable feed the bacteria in your small intestines that don't belong (they belong in your large intestines).   Those with SIBO often have trouble with probiotics because you are adding bacteria to the wrong part of you digestive system. 

Your doctor can test for it by ordering a hydrogen breath test.  Something to investigate as you try to regain your health. 

Here is a site with tons of resources:

Open Original Shared Link

cyclinglady Grand Master
cyclinglady
Posted

Two years since your diagnosis?  Have you had celiac follow-up testing?  This would help rule out gluten as the culprit.  

Open Original Shared Link

 

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
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