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Newbie With Questions

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I have not yet been diagnosed with celiac disease, but I am strongly suspecting that I will be.

For most of my life, I have been "the healthy one" in my family. I've almost never been sick, which is good, because I am doctor avoidant (I've got big issues with the medical field). I try to stay very healthy, although I do battle obesity. I've been trying to lose weight for about 8 years, and I need to lose about 100 lbs. altogether.

Anyway, after knowing I had high blood pressure for about a year, I finally worked up the courage to go to the doctor last October and get medicine. At the time, they weighed me at 246. When I went back a month later, I had lost 3 pounds (and I wasn't even trying). I didn't think anything about it.

Then came the holidays, and in early January, I joined a fitness club and started back on Weight Watchers. They weighed me at the fitness club--and I had lost another 6 pounds since November. I thought that was strange, since I hadn't been trying, but oh, well. Through January and February, I was working out and eating right, losing weight every week. When I went to the doctor on March 5, I was sure my blood pressure would be great. It wasn't--still above normal.

Even though the doctor was encouraging, I was discouraged and started binge eating. For the next 6 weeks, I ate EVERYTHING that wasn't nailed down. I ate constantly--all the Mcdonald's you can ever imagine, Snickers bars from the vending machine, PopTarts, Zingers, ate out at restaurants every night and never worried about what I was ordering, and sometimes I'd order dessert (even when we'd had an appetizer). It was a doozy of a binge. When my husband asked about my diet, I'd tell him I was on Spring Break.

Finally, on April 19, after 6 weeks of gluttony, I finally decided to face the music and see how much damage I had done. To my utter surprise and amazement, I had gained absolutely nothing....I was exactly the same as I was in early March. It took about 5 days for this news to sink in, and when it did, I panicked. I thought it had to be cancer.

I went to my doctor on April 24, crying my eyes out about how I thought it must be ovarian cancer. I told her I knew diabetes could cause weight loss, but I was sure I didn't have that. She reassured me that it might be thyroid. She took a blood test, urinalysis, and chest x-ray, and sent me home with a fecal blood stool test. She scheduled me for a CT of the abdomen/pelvis and a complete physical for Thursday, April 26, and a mammogram on April 27.

I told my husband the first night and eventually I had him crying with me about how it might be cancer and I might not make it to my next birthday. I was clearly distraught, but it seemed so tragic at the time. Anyway, the more I read about thyroid, the more sure I was that that was it. On Thursday, she told me that so far, everything was normal including thyroid and blood sugar tests. She then scheduled an EGD endoscopy, and I had to wait a week for that.

Waiting was the torturous part. I finally had to call in sick for 3 days, I was so exhausted, sleepless, and anxiety-ridden. Surprisingly, the EGD, mammo, and Pap were all normal.

My family was not at all sympathetic. My sister told me to get a grip--she said, "Our whole family has GI problems. I have ulcers and ulcerative colitis, mom has had ulcers and irritable bowel syndrome, grandma had celiac disease, our other grandma had diverticulitis and diverticulosis. Get used to it!" I have very few symptoms, but it was the weight thing that was really scaring me.

After another "panic day," thinking it could be pancreatic cancer, I finally began researching celiac more and it was like a light came on. I became more & more sure that could be it. My grandma wasn't diagnosed until she was 70 years old, after years of problems.

When I went back to the doctor, she was thrilled with all the negative results, and she was even happy that I hadn't lost any more weight. (She'd already told me to eat anything I wanted, and I had been.) I asked her if it could be celiac disease, and she said that I would have been diagnosed at a much younger age if I had that. So, I clammed up. I don't want to be labeled a hopeless neurotic, and it isn't as if I WANT to be diagnosed with something that will change the way I eat forever. But her only solution was to tell me to come back in six weeks, and she said something about how maybe it was just the anxiety. She encouraged me to take the anti-anxiety drugs she'd given me.

It's like she's given up. For the last week, I have tried to get back on Weight Watchers, but the hunger is just killing me. My stomach gnaws at me all the time, and I lost 5 pounds from Friday to Monday. I'm not sure I can make it another six weeks.

I am considering calling a gastroenterologist myself and asking them for an appointment to be tested for celiac disease. I don't really know if they will do it that way. I don't want my regular doctor to know I am going to a specialist, because she already thinks I'm a nutcase, and if it turns out to be normal, it will only prove her point. But my doctor doesn't seem to have any motivation to go any further with this. She thinks I need to lose weight anyway, and this will just make it go faster. The only problem is that I feel miserable all the time.

Would you go to a gastroenterologist yourself? Or is it too soon? Sorry, but I'm kind of new to this....

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):

Hi, and welcome to this board.

Thanks for sharing all of that process, sounds like it has been difficult and scary. Your doctor is not well informed about celiac which is not uncommon. The disease can start at any time of life, not just childhood.

And you have a relative that has/had celiac.

This plus your symptoms points to celiac as a distinct possibility. I think each of us has to do the best we can for ourselves in terms of getting the answers we need. So yes, I think you should see another doctor. You are the health "consumer" and there is no need to feel embarrassed about a second opinion.

Perhaps if you let us all know what area of the world you are in...someone here can even suggest a doctor that they know understands about celiac.

4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Hi and welcome.

Your story rang some bells for me. :)

It was about a year and a half ago that people started telling me that I had lost weight, given that I had never lost weight in my life without great effort my first thought was, "I must be dying". :lol: Sorry, I know it is not funny when you don't know what it is, it is really scary and I was not laughing at the time.

I then proceeded to melt, every day when I got on the scale I was a pound or half a pound less, in a very quick time I lost 40 pounds. I saw doctors about it, they did tests and I was told that there was nothing wrong which was clearly not the case. I was having all sorts of other symptoms.

Like your family, my family has lots of GI issues and fortunately for me my sister had already been diagnosed with Celiac and once I learned that (I only knew about the IBS she had until then) some of the pieces fit together for me. I changed my diet and began to see small improvements, after a gluten free month I also stopped dairy and saw more improvements.

However, a gluten free diet was not sufficient at that point and as I discovered, I had other issues to deal with including mercury toxicity, candida and Lyme disease.

All of this struck at the same time menopause did and I am sure they are connected, I think it was just the final stressor that tipped me over into ill health.

I would say diet - as simple as possible, meat, fish, vegies and fruit, detox - epsom salt baths are a gentle way, and supplements - it's important to know what vitamin and mineral deficiences we have, are all critical in regaining our health.

I think we have to learn to listen to our bodies and pay attention to what we really need.

I hope you feel better. :)

A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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