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Guest jhmom

What Were Your First Symptoms

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I had an unexplained low hemoglobin for approximately 1-2 years. I went in for a colonoscopy and EGD with duodenal biopsy and was very surprised to learn I had celiac sprue. I did not experience a decrease in energy level as I have taught exercise classes and run long distances (2 marathons) for many years. I have lived with abdominal pain, diarrhea, bloating, constipation and gas for as long as I can remember, but I thought that was just the way everyone functioned. Now, in retrospect, it must have been the celiac disease causing the problems. I was diagnosed in June of 2003 and have not been successful in remaining gluten free for more than a week or so at most so I am continuing to live with the symptoms.

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Hey Racheleona,

After reading your post, I really wondered if you have Polycyctic Ovarian Syndrome. Your symptoms really sound like it. You can visit soulcysters.com and they have a great info section and message board.


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hi melanie,

I asked my doc. about pcos, and he said "oh no, you don't have that", same with my obgyn. I do have every single symptom of it though!

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Hey Racheleona!

That is what my Obgyn told me too. If you have any other symptoms of PCOS like excess hair, you might want to get your Obgyn to test you (hair loss can be from celiacs too especially if it is overall loss). Mine did finally test me and did find some blood work abnormalities, but I've since had many tests done and seen two endocrinologists and they agree I have some higher than normal bloodwork, but they don't think I have PCOS. I may have a sub-clinical case if I do have it.

Have you been tested for Celiacs yet? Are you on the diet? Is it helping? It seems to be helping me, but I cheat a lot still.

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I can remember when I first noticed something was wrong. I got sick on my way to work probably about 18 years ago. I didn't go to the doctor because I thought it was the flu. I continued to get sick, went to the doctor and he told me I had irritable bowel. Then I was so embarrassed that I didn't go back for several years. I got very ill and lost twenty pounds in a four week period. I had been going to my gynecologist at the time and when I lost the first 10 pounds and told him I had lost ten pounds in a 2 week period he said a lot of his patients wish they had the same problem. When I returned to him two weeks after that I had lost an additional ten pounds and then he was concerned. He sent me to an internist who did some blood testing. The blood test showed something named "celiac" but he said it was so rare he was sure I didn't have it. He told me to eat soup, oatmeal and toast thinking that soft food would ease my stomach pain and symptoms. He also thought I should go to counseling because it was probably "stress-related." I did eventually get better and then two years ago I started getting sick again, lost additional weight and finally went back to the doctor. This time he sent me to a GI and after the blood test was off he did the biopsy and it showed celiac with the villi almost gone.

I suppose if I had it to do all over again I would of insisted the first doctor look further. By the time it was diagnosed my body was very weak and I ended up in the hospital for seven days.

What I have learned from all of this is that we must trust our own body's and when we know something is wrong then we must insist that an answer be found.

Any thoughts about this? :rolleyes:

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Hi Jynix's mom:

So did you have the blood drawn on yourself or your child? What were the results?

Sometimes they do a full panel screening which includes testing for this to see why a person is ill and then it shows celiac disease. Is that what happened? Was a biopsy done yet?

Hope all is well

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Hi Sally.

The blood draw is on me. They were just fishing around, supposedly because of my vit B deficiency, but I've had that for about 4 years and this was the first time anybody ck'd. I came up as weak/moderate positive, but neg on the TtG and EMA (I think?). Have a mild case of DH that dissapears right before dermatology appts. No biopsies on skin or intestines as of yet. I'm just not happy they ran this test without telling me what they were doing. They also told me not to worry about it unless I developed symptoms. Hah! :angry:

Oh well, I'm not giving up, but I am getting tired!


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Just thought I'd add my son's list of symptoms for others to reference. They may not all have been from Celiac but I kept track of everything in case the doc needed it:

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Oh, wow. This is amusing in a way. I've been looking over my past and seeing the symptoms over my life. It's a bit overwhelming.

6 yrs of age I was a day dreamer in class. This is the same year my headaches started.

7-10 yrs. Severe headaches and leg pains. I didn't stand properly. I remember getting brain scans, full body x-rays and fitted for leg braces before they said it was "growing pains" and "stress".

The headaches continued.

17 I had a gallbadder attack and kidney, bladder infection so bad that I ended up in the hospital for days.

I had my parents sign me out because one kook dr thought I needed my galbladder out and the other kook dr said it was fine. I was in severe pain. But it eased up.

That same year I lost half my hair. "stress"

I've always had issues with my stomach. I thought it was normal for me.

When I was 18 I started getting severe yeast infections that I dealt with until I cut wheat out of my diet.

That was two years ago. I would still get a nasty infection if I ate too much rice bread or anything with yeast in it.

Three months ago. I cut out all forms of proccessed foods for a week.

When I went back to eating the way that I was...I got ill. Severe D, fatigue and malabsorption.

I had my secreter status tested throught Dr. D'Adamo's site and found that I'm non secreter.

That explains some of it. According to him, non secreters are 200% more likely to have celiac than others.

The non secreter diet, which kicked most gluten out...did not help.

That's when I started researching my issues. I found this site.

It's been LOADS of help!

I'm currently waiting for my enterolab results.

I've been full on gluten free for a bit over a month now. I'm taking liquid vitamins and following many suggestions from people on this site and I'm feeling MUCH MUCH better.

I'm sure you've no idea how much you help people that come here and just read and learn!

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I was diagnosed after having diarrhea for about a month, and bruising and bleeding problems. My brother also has Celiac. When I asked him what his symptoms were he said he "Had NASTY gas". I replied, "Don't all guys have nasty gas?" :lol:

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DD woke up one morning and threw up 3 times and it went on for 3 more days. Bought her to the doctor and he said maybe the cough she had with croup was making that happen. We got the cough under control and she was still throwing up in the mornings.

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