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I found this site a couple of weeks ago and it's great. It was suggested last month that I most likely have celiac disease. I tested highly positive on my blood work and was referred to a GI doc. I am going in tomorrow for an endoscopy. Since I am anemic and there is a history of colon cancer in my family (my grandfather) they want to do a colonoscopy too. I was really suprised when the doctor told me that celiac disease was most likely the problem. I had only heard of it when I was researching information on food intolerance. No one in my family has ever been diagnosed with this.

Looking back there were probably symptoms that I have had for quite a while that I have just brushed off. I have always been thin and I have had a lifelong tendency to be slightly anemic (now I'm really anemic). Back when I was a teenager and through my 20's (I'm 43 now) I occassionally would have episodes of intestinal pain that were unexplained. I couldn't seem to attribute these attacks to any specific thing I had consumed. The only time I ever did see a doc about it (back when I was in high school) he told me I probably just had gas and told me to take a teaspoon of Mylanta every day. What a jerk.

About 3 years ago I problems with diarreah for about 2 months. I went to a doctor who apparently was not tuned into the idea of celiac. Her only suggestion was that if I continued to have problems that I should see a GI. Well, I just started to mysteriously feel better a few weeks afterward, so I was just convinced that it was the stress that I was under at that time.

I don't always have obvious symptoms like diarreah but that is what finally drove me to believe that I had a problem and that it wasn't just "all in my head". I had been having chronic problems since February that seemed to let up once in a while. I finally couldn't take it anymore and was able to see a different doctor. She seemed to be tipped off right away from taking my history and ordered the antibody panel. When she called me with the results I got off the phone and cried. It was such a relief to have someone tell me "YES there is something real going on with you!! You aren't nuts!!"

Now that I have learned more while I have been waiting to get in for this biopsy I am convinced that the results will be positive. I also suspect that my 14 year old daughter is too and will discuss it with her when I take my daughter in for a physical next week. I'm wondering if my other two kids should be screened too even though don't have symptoms.



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Welcome Peg. Definitely have your kids tested. If they are gluten intolerant, you are sparing them years of damage by getting them tested now and on the gluten-free diet rather than waiting until they have so many symptoms that they are in agony. That is if they have it. Guess you won't know until they are tested though. Best wishes to you and your family. All the celiacs here are awesome and so helpful.



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ALL first-degree relatives should be tested -- parents, kids, and siblings. All mine were and my 70-year-old father came back highly positive despite only minor symptoms.

From what you've described, you have celiac, no matter what the biopsy says. With highly positive tests and symptoms, it's nearly a 100 percent sure thing even without a biopsy.

Sometimes biopsies come back negative either because they didn't take enough samples or because you quit eating gluten (did you?). The ultimate proof after the biopsy is to go gluten-free and see if you improve.



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    • This is a great information piece on Celiac in Kids esp, followup care.
    • Hey all- just thought I would send an update. I worked out hard but not too long or too hard last week on Thursday- one hour pilates class (which isn't too strenuous to me) and then did squats and some other arm/back lifts. But i couldn't do my third set of squats because my quads were cramping up.I took my Glutamine twice that day, vegan protein and tried to eat more, I tried to avoid more than 1 drink for two days, and waited until I wasn't too sore anymore. and just did pilates reformer on friday.  So I did it! I paced myself well. I missed my normal Monday pilates reformer time (sinus infection now from my last cold ) But did make it on tuesday. Today I only had 1 hour of work out time (the child watch was closing!) so I busted out bench, straight leg dead lifts, upright row, reverse lunges with military press, and then finally squats. Let's just say i went pretty hard compared to last week and got 3 sets in for everything  it was great!. so now I am eating like a mad person, I didn't get any quad cramping this time so that was good. Maybe because I have been off dairy that i am absorbing stuff better who knows.  But I know i have to stay on track with my supplements and eating and not drinking.. much  
    • Cyclinglady -  Negative was also what I was thinking. The reference range at my lab does not give a negative, weak positive, and positive range, rather just a normal range. I just found that while scouring the internet. Seem like a lot of other people on here are give weak positive ranges as well. Anyways, I'm sure I'm reading way into this and it's nothing.  Very interesting that you never presented with a positive tTG IgA with such damage to your intestines.  No mention from my doctor concerning the low ferritin either. I only saw it when I was reading my own lab tests. Do you have any suggestions for what could be causing this? For the full celiac panel, is that something I should probably see a GI for? Thanks again for all your helpful suggestions!  
    • Kept the quote short for ease of reading but yeah I've cut a few people loose in the past few weeks after seeing their reactions. Fortunately balanced out by the positive, helpful comments on here though. Main reason for putting myself through this gluten challenge business isn't so much to get the diagnosis but more to find out just how bad the damage is (expecting the villi to be flat as pancakes so anything less will be a bonus). Over here in UK I can apparently get certain gluten-free foods on prescription with the official diagnosis too so that's the other reason I've been given for doing it. I'm hoping that having done the first week back and took the initial hit that the glutening symptoms may not be as bad for the next 3 weeks. Not quite sure how I've got through it at times but at least I know what the problems are caused by now whereas 6 months ago it was a complete mystery. Managed to summon up all my energy reserves for some sport last night, suffering for it today but forgetting about everything for a while makes it worth the pain!
    • I'd say that TTg IGA is negative and would not consider it a weak positive, but....I am not a doctor!  😏  I do know that each lab has different ranges and you should just compare your results with the ranges the lab uses (not from the Internet).  Your ferritin is low and your doctor should find the reason why it is low.  Again, celiac disease can not be ruled out until you have  the complete panel run.  Why?  I have never had a positive TTG test even in follow-up testing (biopsies: Marsh Stage IIIB).  I test positive ONLY to the DGP IGA.   Get the rest of the celiac panel.  
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