New to this with questions

Kirsten · Joined: 19 Jun 2008 Posts: 7

Okay, this could end up being long so please bear with me. About 3-4 years ago I started getting bloated whenever I ate anything. A little while after that I got constipated and started having sharp pains in my lower abdomin. I should also mention that I had been working out a lot up to this point and had lost quite a bit of weight. I think because of this, and family history, my period quit (imagine how happy I was Smile

.) Anyway, I went to a doctor who was very concerned about my period and basically ignored my other symptoms. I had full blood work done, they tested my urine, and he sent me off for pelvic and abdominal ultrasounds. Everything came back fine. He recommended that I go see an ob/gyn about my period. Flash forward a few months to when I did that. She sent me for another pelvic ultrasound that came back showing some fluid. She thought it might have been a burst cyst but didn't seem too concerned. She told me my other symptoms were IBS and put me on Zelnorm which helped with the constipation but nothing else. After taking that for a while, I got a referral to another doctor who did more bloodwork, asked for copies of everything else I'd had done, and kept with the IBS theory. Becoming frustrated again, he sent me to a gastro. I tried antibiotics (a new IBS working theory) and a mild anti-depressant, neither of which worked. I went on for a while taking nothing but got into another period of frustration when I started looking around on the 'net and found out about Celiac. I went back to my doctor and talked to him about it. Unfortunately, I can't afford to get tested right now so I've been trying to be gluten free. I think I'm doing okay, but probably not well enough to say that I am getting absolutely no gluten. So here's the thing, I've been trying the diet for a couple of months but have gotten practically nowhere. I'm a bit reluctant to go insane with this when I don't know for sure if I have it, because I don't know how long it would take for my intestines to heal if that is the problem. I can afford to get tested later this year. What should I do? I'm sick of having the problems I'm having, I've gained back all of the weight I lost despite being on a never-ending diet for the last three years in an effort to lose it again, and I don't know how long I need to be gluten free before anything happens. If I decide to get tested, how long do I need to be eating gluten before I can do it and how accurate are the tests? Any help would be great. Thanks a lot.

zip2play · Joined: 24 Jan 2006 Posts: 234

Glad to have you here.

Your last 3 or 4 years remind me a lot of mine before I was "diagnosed." The only difference was, I always had my period because I was on the pill. I started much like you, no matter how I ate, my pants hurt after eating anything. Felt like it was going to cut me in 1/2. Then the pain came and then for me the big D! A friend found an article about Celiac which is what I took to the DR. I too had been diagnosed IBS, but the suggested IBS diet just about killed me. They did the blood panel and it showed indication of wheat issue, scoping showed now damage so the GI dr says, you dont' have wheat issues. Well I took matters into my own hands and went gluten free. I have felt so much better ever since. THe bloating is gone, the fatigue is gone and the pain is gone. For me, I don't need an official diagnosis. My family Dr told me, I don't care what your GI Dr says, YOU have wheat issues, you improved health proves it.

So, what do you do, is truly your choice. Many want an official diagnosis or they feel they will just go Gluten Light. If that is the case with you, you can't really give up gluten until you are tested. Giving it up now could mess up the testing.

As for the weight, I too have battled it my whole life. Now in my late 30's I have decided to love my body and work hard to eat less and move more. Many years ago I successfully lost 40 pounds but have put back on 15 of them. I am currently a work in progress and would love those 15 to be gone! Wink

Not sure if any of that helps, but WELCOME here!

Monica

cruelshoes · Joined: 23 Sep 2005 Posts: 2550 Location: Washington State

kb9oyo · Posted: Thu Jul 31, 2008 10:55 am Post subject:

Kirsten: I don't know just where you live, but in the Chicago area, the Univ. of Chicago runs a free screening test in October. It is a blood test. Their "rules" are that you must be eating gluten (1-2 slices of bread daily) for 4 to 6 weeks before the test. I wouldn't be surprised if others did it in other areas around the country, but I haven't tried to search for it yet. That is how I found out even though I had no insurance at the time. When I tested positive, their only answer was to go gluten free since I still didn't have any insurance at that time. I have never had a biopsy because of that. You might try looking for some free screening tests. October was the month that was "designated" as Celiac Awareness Month, but I think that might have changed to some time in the Spring.

Sue B.
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Sue Beyer

Kirsten · Joined: 19 Jun 2008 Posts: 7

Okay, so even though I haven't been completely gluten free, if I go back into full gluten-eating mode and am Celiac, should I feel awful? I'm sort of hoping that would happen and then I can avoid eating it for a few more months and then testing.

ostrich · Joined: 30 Mar 2006 Posts: 4170 Location: Nebraska

Yup, you'll probably feel awful if you go back to a regular diet. Just remember that, like Colleen said, you need to be eating gluten before you get tested. You can't go on again, off again before testing.
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Kirsten · Joined: 19 Jun 2008 Posts: 7

Thanks for the replies. I have the day off tomorrow so I think I'll go have that Subway sandwich that I've been craving and pray that something happens. Laughing

Kirsten · Joined: 19 Jun 2008 Posts: 7

Well, on Saturday I went nuts with wheat products (not too hard since I'd run out of my GF food.) Was disappointed on Sunday when my stomach was pretty-much fine. Ate more gluten, woke up Monday with a wretched headache and feeling nauseous (sp?). Figured it might be gluten but I still didn't have anything that was gf so I ate regularly on Monday too. Woke up feeling the same on Tuesday. I had finally gotten my weight to be fairly consistent from day-to-day, but between Friday and Tuesday I gained over three pounds somewhere. Went off gluten this morning. Still a bit queasy but feeling a bit better. I think I'll go off dairy for a couple of weeks too just to see if that makes a difference. What do you guys think?

zip2play · Joined: 24 Jan 2006 Posts: 234

I know for me, it can take several days after ingesting gluten for me to feel the effects in my tummy. Typically the only symptom that is immediate is the fatigure and possible headache. But if it is raw gluten (inhaling flour or such) that can cause issues for me immediately!

HTH

Monica