vvicin02

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About vvicin02

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  1. Yes Breezy1 - my old Doctor never even considered Celiac as the cause of my low ferritin. He talked about sending me to a hematologist but never followed up on it. To make matters worse, he had me take two more blood tests over a period of three weeks and the ferritin level stayed at 10! Unreal. I didn't think much of it. I didn't even know what Celiac Disease was at the time. I went to another Doctor two - three years later (I know I should be going more regularly) and he didn't even bother testing for ferritin. He assumed that because my iron looked good there was no need to test for ferritin. I was lucky that my new current Doctor was concerned about my low ferritin and bloating issues. I was like you thinking that eating lots of food with iron would help. I even tried to eat a big old stake the day before testing...lol....that didn't help. I wish you the best. We shall see if in time if going Gluten Free heals the villi and allows the small intestines to absorb the iron. I will be interested how you progress.
  2. I know how you feel. I too am a male silent Celiac and was told to go Gluten Free because of my blood work (waiting on endoscopy results in a week or so). My wife has been supportive but she is continuing with her regular diet because I have the will power to ignore all the goodies around the house. I know how your husband feels. It is hard because at work or play you cannot go to bars or out to eat without concern. The change in one's diet impacts so many aspects of one's life. The kicker is being a silent celiac with no side effects! Denial is very easy if you cannot see or feel the impact that gluten is having on your body. I would repeat to him the long term impact. That is what keeps me going. Good luck. He is lucky to have you.
  3. vvicin02

    COMPLETELY silent celiac

    This is a really good conversation. I am so similar to what is being discussed here and this really helps me (I am a male 60). I go in for my endoscopy in a few days. I too have no physical symptoms and never thought this would happen to me at my age. I do have very low ferritin levels (17) and elevated Liver enzymes which is how my Doctor suspected I had celiac disease. My iGa came back at 193 which is why he sent me to a GI Doctor for further testing. It is hard to except living a challenged life eating Gluten Free with no outward symptoms. It can be demoralizing but I guess we need to look at the bigger picture. Do we really want to take a chance and risk our later years getting an illness that could of been prevented? My Dad died at 89 years old this past January from multiple myeloma and I took him for chemo every week for 5 years - an experience I will NEVER forget. I realize that multiple myeloma is not Celiac Disease but if there is any bit of chance I can prevent a cancer or some long term damage I need to try. I need to try for the sake of myself, my wife and my family. I know celiac desease can impact so many health issues that you need to look at how much of a risk do we take?
  4. I was told eating all the iron you want will not really help much if your body cannot absorb the iron for storage. My ferritin is at 17 and tried to consume meat and other high iron foods with no luck. I think it is a good idea for additional testing for Celiac. By all your symptoms it sure sounds like Celiac. I know it is frustrating. In my case my Doc 5 years ago (new Doc now) just ignore the low ferritin and elevated liver enzyme results. Good to hear you are on it. More blood work and endoscopy probably would be useful.
  5. I went to see my GI Doctor yesterday and he agreed with what you all said. He was very sympathetic to my situation. I was expecting a more cynical approach for some reason. I was wrong. He was very knowledgeable about celiac disease and all the factors related to the Decease. He ordered a endoscopy (6 samples) and a colonoscopy. Because my ferritin level is so low he fears that if this is not treated I will eventually become anemic. Malabsorption is the cause of the lack of iron storage from the small intestines (most of you are probably knowledgeable about this). My concern is what if the colonoscopy comes up negative, then what? Oh well, I have three weeks before the test so I am back on gluten. I am fortunate that I have very mild reaction to gluten. You are right cyclinglady, time to eat up and bid farewell to my favorite foods
  6. vvicin02

    Small fiber neuropathy

    This was very informative. I too was diagnosed three weeks ago with celiac disease. I have been experiencing burning tingling pain in both my feet. I always thought it was plantar fasciitis from playing softball. I have been gluten free for 3 weeks and the discomfort is still there. I guess more time is required. I never even thought of mentioning this to my Doctor.
  7. Thank you pikakegirl I really appreciate you sharing your experience. I am lucky my wife enjoys cooking and baking and baked me some awesome Gluten free chocolate chip and walnut cookies - very good. I am starting to adjust but part of me is not believing this is really happening. It is difficult to deal with and find it hard to tell anyone. For example, I play softball and after the game it is traditional for hot dogs or pizza and beer after the game. I cannot tell my teammates what has happened to me because I am a little embarrassed and fear that no one will take my situation seriously. I have to avoid eating and just drink water. I know it is a life change and part of me wants to believe that when I meet the Gastroenterologists next month he will tell me that my situation is not that bad. I know that is silly. Numbers don't lie. My anti-tissue at 190 and Ferritin at 17 indicates that something is not right. I need to look at this as a way to improve my overall health and longer quality life. My Dad died from multiple myeloma at 89 this past January and when the Doctors talk about iGa numbers I get a little nervous. Anyway - I want to thank everyone for sharing their thoughts. The youtube video was very helpful.
  8. Thank you cyclinglady. My Doctor called me last night about meeting with a Dietitian (I think my insurance will not cover that). Although I have low ferritin (17) I am not anemic. He told me to stay off Gluten and still meet with the Gastroenterologists and see what he says. I suppose if he wants to do more testing that is an option. I think he feels that my numbers are pretty strong indicator of celiac disease. Whatever the case this is a real change for me and my diet plan. Last night I did not take tessa85's advice and had a baked potatoe (carb) with pork chops. The carbs did not sit well with me. I think carbs need to take a back seat for awhile. I really appreciate all your feedback. It has been helpful.
  9. Thank you tessa25. It is really appreciated. I checked into some of those products and it looks promising.
  10. Hi, I am a male 60 years old and I recently went in for a check up and told the Doctor that a few years back my Ferritin levels were low and that I have on occasion been feeling bloated after eating with bad belching and some nausea in the middle of the night while sleeping - but not that often. He took some test and found my ferritin was 17 ( it was 7 at one time). He took an anti tissue transglutaminase test (iGa) and it came back abnormal at 190 which explains my low iron (lack of absorption). He said I had celiac disease and needed to change my Diet and go see a Gastroenterologists. My question is how are many of you are dealing with this diet and finding it discouraging. I love food and I have lived off sweets and pasta and all sorts of food my whole life. This is a real change for me. It sort of brings me down. Since my symptoms are not bad, it is hard to say that I really need this diet, but the numbers don't lie. Something is impacting my iron and iGa but it is hard and I know the long term impact could be bad if not treated. Any advice on to live with this?