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Post Diagnosis and Diet Change and feeling much worse.

BMking

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BMking Newbie
BMking
Posted

Hello everyone! This is my first post so please bear with me. To give a little background I am trying to figure out whether or not my Celiac Disease recovery seems abnormal and looking to see if anyone might have any insight. I originally went to the Dr. over the summer for sporadic stomach pain and feeling hungry even when I ate. It was always the worst in the morning, I would wake up some days with 3/10 pain. After seeing the Dr. I was referred to a GI who wished to conduct an EGD and colonoscopy. Colonoscopy had no results but EGD showed the signs of celiac and a biopsy later confirmed it. I also had three duodenal ulcers and GERD as well. Sit down with GI and he explains everything, I get medications for the ulcers and GERD and immediately go on a gluten-free diet. The confusing aspect of this all was that I never really had that severe of symptoms, I would have the stomach pain maybe one or twice a week and it was not incredibly painful or debilitating. But after going gluten-free I had no symptoms for around a month and then with no change whatsoever have been experiencing severe stomach pain day in day out for two months straight. I immediately cut out dairy and processed foods as soon as it started to try and help but it has done nothing. When I wake up in the morning I sometimes regurgitate stomach acid. But overall I just have much much worse pain than I had before I went gluten-free. I went back to the GI and he confirmed that I have Celiac but had little to no answers for me other than to prescribe me Reglan and tell me not to eat right before sleeping. I have done this and tried to eliminate different food groups to see if one or the other is giving me issues and nothing has changed. I just can't believe that after removing gluten my issues have gotten about 10x worse. I know healing takes a while, but for me to keep getting worse is concerning. I am open to any and all advice, especially suggestions of what I could discuss with the GI. He just keeps telling me I have a severe case of Celiac but really ignores me when I try to seek out other reasons for my issues. Thank you, everyone!

TL;DR- Original pain wasn't that bad, went gluten-free and it has gotten much worse. Am for sure Celiac and have cut out dairy. 

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healthysquirrel Enthusiast
healthysquirrel
Posted

So sorry you are feeling unwell, Is it possible to try another treatment for gerd?  Try a low FODMAP for a few months and see of you feel better. If it works, then you can reintroduce one food at a time to see which one is bothering you.

the first few months for me were brutal in terms of digestion, whereas I my digestive symptoms were not was bad before going gluten-free. It was surprising, but then i realised I had food allergies and happened to be eating way more of those foods immediately after going gluten-free.
As soon as I cut out stress from wondering what to eat by always having 2 meals I prepared ready in my fridge, it helped a lot.

Please don't eat those highly processed gluten-free foods with ingredients you can't pronounce, they are absolute trash and not what you need at the moment. Try using those only for emergencies. A whole foods diet, seeing if you have any food allergies and low FODMAP could help you.

It helped me, I am still having non digestive symptoms due to decades of low absorption, but even that is getting better, so hang in there!

I don't know what meds you are on, but careful of the side effects. Please go see a proper nutritionist. It took me a while, but I found one who is also a doctor, he prescribed me vitamins and minerals that were very easy to digest (liquid, powder)  Natural Anti inflammatory and alkaline powder. 
Keeping a food diary can help you pin down what is going on. I know it is very hard to leave certain foods behind, but I promise you it gets easier as soon as you start to feel better :)

Hope you find the help you need here BMKing! (hilarious name by the way)

 

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