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Colonoscopy/endoscopy/ultrasound/bloodtest Results

holdthegluten

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holdthegluten Rising Star
holdthegluten
Posted

I just had a bunch of testing done (as you can see in my topic) and the results were very good. The endoscopy showed that my villi were completely healed (biopsies) and my lymphocyte count was very low (guages inflammation). The colonoscopy revealed a benign polyp that was taken off and everything else was perfect. (no inflammation or anything). The blood test was great and showed a very low ttg count and ema was normal. Everything celiac related was completely normal showing the diet has worked extremely well. The ultrasound showed nothing abnormal (looking at my liver mainly). So far the only findings were a slightly elevated ALT liver enzymes which she will do a liver biopsy if they are still elevated after a year, and i had mild non-specific gastritis (no h. pylori). She did various biopsies and everything looks normal now. My question: Even though everything looks back to normal, why dont i feel as good as i used to?

Why am i more sensitive to certain foods if everything is working properly. Why dont i still have the energy and why do i get bloated and have mild stomach pain sometimes? I still get the stiff neck and head pressure at times when i eat. On an empty stomach I feel a little better usually. What could be causing the gastritis? I eat really clean and healthy. Any thoughts or suggestions please? God Bless!

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ravenwoodglass Mentor
ravenwoodglass
Posted

I don't know if my experience is anything like yours but I will relate it just in case. I still had some issues even after having a great recovery with the diet. It turned out to be a sensitivily to soy and casien. I never realized how much soy I was consuming, I virtually replaced the gluten with soy. It is in an awful lot of gluten-free stuff. Once I eliminated the soy I got a great deal of relief from the type of thing that you are experiencing. Something that also helped a great deal was adding a digestive enzyme to my diet. I take on whenever I eat meat or real fatty foods now but when I started I took them with every meal. They helped a great deal.

glutenfreestephie Newbie
glutenfreestephie
Posted

i have had recurring gastritis for the last 12 years or so. it flares when i have ton of stress and then i get heartburn and then lots of pain if i don't do something about it sooner than later. i am supposed to be taking prilosec every day, but it is over the counter now and expensive... i cut corners where i can. i have had 2 egd's, alway negative helicobacter. it sure sounds like something else may be going on with you, but i know which myself i am having a hard time getting back to where i consider i should be. i have been feeling bad for the last 12 years, and i think i sort of thought once i finally got diagnosed that i would wake up one day and have energy. hasn't happened yet, but i am holding out hope. good luck.

stephanie

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    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
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    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
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      Issues before diagnosis

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