Hi everyone, I am SO glad to have found this page and everyones responses! There is next to NO research out there or people that have CG so this is SO great and comforting to find!
I am an odd CG case (but aren't we all?), I am right between the peds and adult category- since I am 19 I showed symptoms of both categories. I was diagnosed with CG last year (19 years old). But I had gone through millions of tests and endoscopy, colonoscopys etc, since the age of 15. It was not until I was at college and my ankles and lower legs got extremely swollen that I went to the hospital and underwent blood work right away. That was when they determined I was severally anemic (needed 4 blood transfusions and 2 iron transfusions right away). They also realized I was internally bleeding. So I got an endoscopy and that's when the doc searched and searched for something wrong, and when he went a little further he realized the collagen as well as the lining of my stomach was frayed and would shed off when he tapped it with the endoscope. I was in the hospital for a week, and then recovery was long and slow since I had to build back up all my iron, blood and other levels as well as endurance. I was put on acid blockers, CARAFATE, PROTONIX and ferrous sulfate. As well as a recommended iron rich healthy diet (but I am an extremely healthy eater and very active to begin with). I noticed NO help with any of the meds EXCEPT the ferrous sulfate because that helped build back up my iron- however I stopped taking it at my own decision because I felt myself getting hot and other side effects of too much iron (yes, it is a thing!!!). And long behold my next blood work test showed more than enough iron and everything looked good. I have not gotten an endoscopy since last year, just blood work through out the year. However, I believe I am relapsing because I am gaining all the symptoms I had prior to my diagnosis. These include, extreme fatigue, slower reactions, insanely painful abdominal pain, sensitive to every food, bloating, stomach gurgling, daily loose stools, waking up with very puffy eyelids (ANYONE ELSE??), no motivation to work out, nausea, stomach cramps and my legs and feet fall asleep a great deal. Acidic foods, dairy, greedy foods, alcohol etc. destroy my insides...
I am meeting with my doctor (the one who diagnosed me with CG) next week and am going to bring MANY questions you all proposed in here! Such as gut bacteria's role, herbal supplements to look into, autoimmune diseases and TRY to establish an effective treatment plan. I do believe DIET is huge in CG, but I have always ate healthy (very healthy) and extremely active. I do limit gluten, dairy and never eat friend or greasy foods. But there has to be more than a healthy diet to help all of us not go through these insanely painful flares/relapses/food intolerances. Even when I am eating healthy I go through these painful symptoms! CASE studies SHOULD be done on us and SOON - please! I am a college student who HATES CG and will do ANYTHING and EVERYTHING to help discover more about it. Let me know if anyone has any other questions or ideas or similar situations!