Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Just Diagnosed, Have Questions
0

8 posts in this topic

:unsure: 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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites




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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 :unsure: .

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,345
    • Total Posts
      920,488
  • Topics

  • Posts

    • Karen, the iodine test was a test for DH used in the 'olden' days. Iodine would be swabbed onto a spot and then it would be covered with a bandage. If someone had DH the iodined area would break out in lesions. I don't know how but we do know iodine can activate the antibodies. That is why some of us with DH have to avoid iodine in foods until the antibodies have cleared the dermis. OP, if you haven't been tested for celiac you should be and if you have active lesions a biopsy done next to a lesion by a DH knowledgable dermatologist may help in diagnosis.
    • The gluten-free diet (GFD) is the only validated treatment for celiac disease (celiac disease), but despite strict adherence, complete mucosal recovery is rarely ... View the full article
    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,415
    • Most Online
      1,763

    Newest Member
    Ails123
    Joined