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Finally diagnosed

EasterLily

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EasterLily Explorer
EasterLily
Posted

Hello everyone. It's been awhile since I was last on here. I finally had my appointment with my GI. He said it's definitely not Celiac, but probably Non-Celiac Gluten sensitivity. He said I don't have to be as anal  as I have been but as long as the gluten free diet is making me feel better, than stay on it. He said the difference between Celiac and Non Celiac is that with Celiac it's an "allergy" while non-celiac is an "intolerance." which I'm sure you all know, but it's new to me so I feel better about knowing that. The symptoms are mostly the same, but does not cause the same damage as Celiac. So, I guess that would be better news than Celiac. I have been on my diet for 2 months now. 90% of the nausea is gone, the pain in my stomach is gone and bowel movements are no longer painful and I am actually regular unless my IBS is flared.  After eating a meal, it no longer feels like a lead brick in my stomach. As long as I don't over eat or eat too fast, I feel fine after a meal. Such a blessing. Another doctor diagnosed me with chronic fatigue. I'm not sure if it's from my fibromyalgia, anxiety disorder or something new. This week it has gotten a little better. At least I can function. Last week I could barely move. I ended up in the ER because I was feeling so faint and was too fatigued to move. I wasn't sleeping well. All blood work came back fine. I had an EKG done with no abnormal findings and they checked my heart rate going from sitting to standing and that was normal. Thyroid okay also. Chest exray was normal.  I have been lightheaded for almost 3 weeks now. The more fatigued I feel, the more lightheaded I feel. I'm sleeping better because my anxiety medication dosage was raised, but any physical exertion exhausts me. The GI changed my acid reflux medicine to Dexilant because the Omeprazole wasn't working well enough. That made me feel better also. Less burping, stomach rumbling and far less regurgitation. I'm only on that for 2 months. It's possible the acid was getting past my esophagis and into my sinus' causing pressure on my inner ear knocking my balance off. I'm not so sure that's it though.  But I'll give the Dexilant more time. It's only been about a week that I've been on it. He said if after 2 months I'm still dealing with lightheadedness more testing will be done. I hate not knowing what is wrong. It's so frustrating. I always start to feel better but fall backwards again. :( 

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TexasJen Collaborator
TexasJen
Posted

Thanks for the update! Glad you are feeling better.....

There are some theories that there is some true pathology behind NCGS but doctors just haven't figured it out yet. I wonder if your fibromyalgia, anxiety, etc will get better over the next year or two as you stick to a gluten free diet. Do you think your IBS flares are you consuming small amounts of gluten?

Let us know!

EasterLily Explorer
EasterLily
Posted
  • Author
On 5/31/2017 at 10:51 AM, TexasJen said:

Thanks for the update! Glad you are feeling better.....

There are some theories that there is some true pathology behind NCGS but doctors just haven't figured it out yet. I wonder if your fibromyalgia, anxiety, etc will get better over the next year or two as you stick to a gluten free diet. Do you think your IBS flares are you consuming small amounts of gluten?

Let us know!

My IBS symptoms have actually improved. I haven't had any diarrhea since going through withdraw 2 months ago. My Fibro has not improved. sadly. I've been having more flare ups lately, but my anxiety has been pretty bad so that may explain it. Even though I still have some bad days, my stomach has felt so much better. My bad days are not that bad really. I've read that fibro, anxiety and fibro improve over time with a gluten free diet. So time will tell. I'm actually having family members tell me it's all in my head and there is no gluten sensitivity issues. But I know for sure there is because the diet has made such a difference in my stomach. So I just ignore them.

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