Just Diagnosed, Have Questions

[Karina]

OK, so I get the news today that my endoscopy is positive for celiac--the damage was patchy and mild according to the nurse, and I will see the doc in May to discuss. Meanwhile they are sending me stuff in the mail about the diet and disease and such. As much research as I have been doing lately I found myself feeling rather strange about having this actually diagnosed. I think in the back of my head I thought "no, this would answer to many questions, and I am destined to have illness after illness without knowing why, after all I lead a pretty normal life despite it..." So while a part of me was relieved the part of me that likes cake was very sad . Now here is one of many questions: I recall being young like 10 years old and having diarrhea every day of my life for what seemed like months. My mom took me in and they said it was some kind of worm and gave me a pill, and I don't know when but eventually I had normal BM's again (I remember celebrating). When I was REALLY little like 5-6, I remember my mom had to give me liquid iron every day, I remember it tasted aweful. I always had a big tummy, but I was a teeny, tiny little girl. I am 30 now, and I have a laundry list of things that fit into the celiac thing since then till now, but it seems it has always happened in spurts or "periods of time". It seems like I am always dealing with something but not all things at once. Is this typical? Has anyone here experienced symptoms as a child and had them come and go like this? Maybe it is just a coindicence. It seems like if I had it as a child my damage would be much worse by now... or do certain spots on the small bowel heal while other spots are getting damaged? I know these are wierd questions, but I am trying to put all the puzzle pieces together, and have a while before I see the doc....but I doubt he is going to have ALL the answers anyway.....

Thanks,

Karina

[plantime]

Maybe it came and went with the food you were eating. Every time there was extra money, and we had bread and pasta alot, I would get sick and have diarhea. Then finances would drop, and we would eat only meat and veggies. I would get better. Until I was diagnosed as gluten intolerant, it never occurred to me, and I'm sure not my parents, just what the cause was. I am glad that we were mostly poor when I was a child!

[Tye-Kon]

Karina

I too have a similar story, as a child I always felt sick, but became worse off and on in my twenties and thirties. I had a surgery about 5 years ago and bam, I started with the back door trots for months and months. Went to a GI doctor, he couldn't explain it, gave me an antibiotic for parasites and the symptoms went away for awhile but came back with a vengence. I am now 46 and the only real reason I found out I had Celiacs is due to an article I read in Feb 04 issue of Woman's Day. I went back to my GI doctor and told him I wanted to be tested for Celiacs, he said sure he would do it, but didn't think I had the disease. Low and behold I did, and boy was he shocked!! I wasn't, and now my dad who is 82 just recently was diaognosed with it having Celiacs after having open heart surgery. It's funny how surgery can trigger the disease in a big way. Take care of yourself Tye-Kon

[lovegrov]

This is not at all unusual. I've heard from any number of people who had symptoms as a child and then went into "remission" when they hit puberty, only to have it return with a vengeance. I look back and am certain that I was anemic as a child and almost certainly had celiac disease then.

richard

[celiac3270]

This is not at all unusual. I've heard from any number of people who had symptoms as a child and then went into "remission" when they hit puberty, only to have it return with a vengeance. I look back and am certain that I was anemic as a child and almost certainly had celiac disease then.

Definitely. I'm 13 now -- in 7th grade and nine weeks gluten-free. I started getting symptoms in first grade (vomiting, cramps, bloating, diarrhea). Then, in sixth grade (when I was 12 -- at the onset of puberty) I was only absent from school for one day. This year, in seventh grade, I was out of school more often than I had ever been (maybe 9 times, and that doesn't include those days on the weekends) with really bad stomach cramps. The nutritionist agreed that symptoms often temporarily leave at the onset of puberty. This probably doesn't mean anything to the orignal post, but I just wanted to confirm what Richard said. Anyway, in a way it was good that my symptoms worsened; this led to my going to a gastroendochronologist who found that I had Celiac.

[janemary]

I'm new to this board. Have been Dr. diagnosed with celiac disease. Also been diagnosed with osteopenia. Have been anemic for 28 years. Just had two pints of iron transfused into me although this hasn't significantly changed much. Have to go back for another blood test . Has anyone ever had this iron procedure twice. Also everyone talks about diarea, its just the opposite for me. Constipation is a huge problem with me. The food I can live with, but wish I could just drink a meal instead of having to go looking for all this special food. Also I feel like I've gained 20 pounds even though 2 weeks ago I went to weight watchers and lost 2 1/5 lbs. Does the bloating go away or does it take a long time?

[hapi2bgf]

My doctor wouldn't even discuss the issue of how long have I had this Celiac disease. He said we just have no way of knowing what was in the past. I too have a history of anemia, abdominal pain, diahrea, gas, "stomach" problems, etc. As a baby switching to formual I get extremely ill, the docotr had to give the all clear for the family to take me to a holiday party. Looking back my parents must have been terrified. The doctor told them my vili was laying flat. Many years later when I appeared healthy an extended family member was diagnoised with Celiacs and the parents begged for me to be tested. Well the tests were never done. Twenty plus years later after numerous surgeries and health problems I finally got tested and then biopsied and I have "text book celiacs" according to the doctor.

I have given up guessing about what went wrong and why I was never tested or diagnosed before this. I am now worried about my daughter. She is three. She was blood tested twice and was slightly elevated using the really old blood test and was normal using the new test. She has the severe constipation and big belly problem. She has always been in the 90th percent for height and 75th for weight. That's why the doctors are not too concerned. I don't want her to have Celiacs, but if she has it I want to know now.

[Karina]

Seeing what is up with my kids is my next agenda. My son has a really huge belly, and skinny everything else. He is tall, so I am sure his doc will think everything is fine. Well, I am going to make sure. I will pay for a gene test for both my son and daughter if need be. If they don't have the gene, then I know they will never get it--if they do then I don't know exactly what I will do....I also wonder about the bloating thing. I look like I am five mos. pregnant by the end of the day .