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Now What Do I Do?


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11 replies to this topic

#1 dawinka

 
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Posted 02 December 2005 - 06:43 PM

I'm 41 years old and have had most of the Celiac symptoms all of my life. I had horrible anemia when I was young and have battled it forever. I've been diagnosed with PMDD, pre menstral disorder dystphoria. This comes with bloating, horrible mood swings, depression, night sweats, and insomnia. A few years later, hypothyroidism. A few years later the doctor wanted to do a colonoscopy to find out why I had the diarreha so bad and why I was still so anemiac. I was diagnosed with IBS. Two years later planter fascitis. I've since had 2 additional colonascopies due to the fact that my mother was diagnosed with colon cancer and almost died.

In September, during my yearly exam, they found all kinds of good information. A breast lump, which turned out to be a large cist. My thyroid is still too low, even though the doc. increased the dose twice. My hemmogolbon is still LOW, still anemiac... and my cholestorol is above 200. So off I was to another colonoscopy. And again nothing found. That doctor suggested to my doc. to test for CELIAC.

I could not beleive all of the symptoms that I have had. I have 3 daughters that have had many of these symptoms as well. When I asked my doc. he ordered the tests but didn't seem alarmed at all. Today he called and the tests were all normal. I couldn't beleive it! I thought we finally found out why I have felt SO horrible all of these years.

He did order an upper GI to be done next week, but thinks that will turn out ok.

Are there any other disorders that are like Celiac? Any other suggestions? This is not something that I wanted to have, however, I was hoping to find an answer......know I feel lost again.

Please help,
Dawn
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#2 Carriefaith

 
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Posted 03 December 2005 - 07:59 AM

Which blood tests were done? And were you on the gluten free diet when these tests were done?

Are there any other disorders that are like Celiac? Any other suggestions? This is not something that I wanted to have, however, I was hoping to find an answer......know I feel lost again.

You could be intolerant to gluten without having celiac disease, which would cause some of these problems. Also, you could be intolerant to other foods such as dairy, soy, eggs, corn, ect. I am dairy intolerant in addition to having celiac disease and dairy alone can make me quite miserable. I have to read ingrentient lists for dairy and avoid dairy cross contamination or else I get quite ill.

The other diseases that can have similar symptoms as celiac disease are chron's disease, ulcerative colitis, and collagenous collitis. Has you doctor checked for these?
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#3 tarnalberry

 
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Posted 03 December 2005 - 08:38 AM

I'm 41 years old and have had most of the Celiac symptoms all of my life. I had horrible anemia when I was young and have battled it forever. I've been diagnosed with PMDD, pre menstral disorder dystphoria. This comes with bloating, horrible mood swings, depression, night sweats, and insomnia. A few years later, hypothyroidism. A few years later the doctor wanted to do a colonoscopy to find out why I had the diarreha so bad and why I was still so anemiac. I was diagnosed with IBS. Two years later planter fascitis. I've since had 2 additional colonascopies due to the fact that my mother was diagnosed with colon cancer and almost died.

In September, during my yearly exam, they found all kinds of good information. A breast lump, which turned out to be a large cist. My thyroid is still too low, even though the doc. increased the dose twice. My hemmogolbon is still LOW, still anemiac... and my cholestorol is above 200. So off I was to another colonoscopy. And again nothing found. That doctor suggested to my doc. to test for CELIAC.

I could not beleive all of the symptoms that I have had. I have 3 daughters that have had many of these symptoms as well. When I asked my doc. he ordered the tests but didn't seem alarmed at all. Today he called and the tests were all normal. I couldn't beleive it! I thought we finally found out why I have felt SO horrible all of these years.

He did order an upper GI to be done next week, but thinks that will turn out ok.

Are there any other disorders that are like Celiac? Any other suggestions? This is not something that I wanted to have, however, I was hoping to find an answer......know I feel lost again.

Please help,
Dawn



Please find out what tests he ran and what the actual results were. He may be hesitant to dx you with "something so difficult to deal with" (<-- please note the sarcasm!) and be glossing over an inconclusive or "borderline positive" result.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#4 dawinka

 
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Posted 03 December 2005 - 12:52 PM

Thanks for the posts. I will ask him for the test results and which ones were actually tested. I've looked for what is normal and test levels on the site and can't find any info...

I'll ask on Monday when I schedule upper GI that he wants me to do.

Thanks again,
Dawn
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#5 RiceGuy

 
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Posted 03 December 2005 - 12:53 PM

This experience is shared by so many I lost count. I'd suggest going gluten-free and see what happens. You don't need a doctor to do that, and it's safe and healthy either way. If you really want a doctor to tell you that you have gluten intolerance and/or Celiac disease however, keep in mind that many get false negatives if they aren't consuming gluten up to/during the time. There are apparently some tests which can do a better job of detecting it, though I can't speak from experience. There are other members on this board who can tell you first hand about it.

For many, the best test by far is trying the gluten-free diet. The solution is the same with an "official" diagnosis anyway.
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A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

#6 nettiebeads

 
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Posted 03 December 2005 - 04:55 PM

I agree with Rice Guy. It wouldn't hurt, and you might be surprised by the results.
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gluten-free since Oct 1996

#7 Dixie Gal

 
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Posted 03 December 2005 - 05:25 PM

Your story sounds like mine, I'm 55 and chasing this since I was 25. I've learned a few things that might help. Celiac/Gluten intolerance is your first best bet. Hormonal fluctuations can cause lots of your symptoms (PMDD, pre menstral disorder dystphoria. ... bloating, horrible mood swings, depression, night sweats, and insomnia) and can go hand in hand with hypothyroidism. I've lost my salivary glands and thyroid (hashimoto's disease) due to the gluten autoimmunity. Also, my new MD says Synthroid can destroy the thyroid with long term use. She prescribes Levothroid & Cytomel along with natural Progesterone, over the counter. I had to fiddle with the Progestrone cream til I found my level.

I'd had several "fanny cams" but never found a MD or GI interested in dietary causes. Turns out, a rotation diet to find sensitivies and gluten/sugar elimation with probiotics and antifungals, and I'm doing pretty well. Check posts for yeast, probably an issue, too.

My stools were tiny and erratic, so MD is doing detox (mixed product with bentonite, herbs, prune powder, etc.) to clear narrowed gut from layers & layers of toxins and bad muscle tone from gluten. Sorry, it's gross, but will allow my system to rebuild, retone, and restore villi for dairy tolerance and nutrient absorption. There are some pictures on web search for colon cleansing that help keep me on the right path!

Re breast lump, I've heard enough to convince me they are yeast/fungus related. A good TV show Know the Cause we get on Dish 223 10:am weekdays (they have website same name) shows cancer probably caused by fungus, or fungal colonies mistaken for cancer in breasts, lung, brain. They had a guest that eliminated her breast cancer while under treatment of regular MD (he "allowed" her to try diet, antifungals, probiotics under his supervision although he didn't believe it til he saw it.)

Trying to follow your post along, I had sky high triglycerides, had heart stent for blockage. Once gluten free, yeast free, my triglycerides went from 380 to 117. Triglycerides are a byproduct of yeast/fungus mycotoxins.

My take is not to worry about having extensive testing, or the results if you do. Try actions like gluten free diet, antifungals, probiotics, good vitamins plus C, Calcium, D3.

Funny, the old Hippocratic oath MD's take said something like "Let food be your medicine" but they've taken it out in mordern days. Well, back to basics, I guess...

LOL, Kathy
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#8 Carriefaith

 
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Posted 03 December 2005 - 05:52 PM

If you do decide to go gluten free, any tests for celiac disease after starting the gluten free diet could be false negative.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#9 jknnej

 
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Posted 03 December 2005 - 06:33 PM

Well, if after all tests it still comes back negative it couldn't hurt to try the diet to see if it's an intolerance or an allergy to some other food.
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#10 darkangel

 
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Posted 05 December 2005 - 06:19 AM

I also got "everything's normal" result on my celiac blood tests. My doctor told me he didn't know what else to do for me. Gotta love that.

Through trial and error, research and education, I've figured out that both gluten and casein (dairy protein) are problems for me. I'm working on figuring out what other food sensitivities I may have.

I've decided getting an official diagnosis is somewhat overrated. For years, I had "irritable bowel syndrome." Docs gave me antispasmodics and anti-anxiety meds to mask the symptoms, but no one ever tried to get to the cause. Eventually, I was diagnosed with "ulcerative colitis." Again, I was given medication and told there was nothing I could do but wait until I got sick enough to have my colon removed.

I've had to struggle to find my own answers. A gluten and dairy free diet works for me. Any time I start to doubt it, all I have to do is eat a little of either and my body will be happy to remind me.
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#11 StrongerToday

 
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Posted 05 December 2005 - 06:43 AM

I also got "everything's normal" result on my celiac blood tests. My doctor told me he didn't know what else to do for me. Gotta love that.

Through trial and error, research and education, I've figured out that both gluten and casein (dairy protein) are problems for me. I'm working on figuring out what other food sensitivities I may have.

I've decided getting an official diagnosis is somewhat overrated. For years, I had "irritable bowel syndrome." Docs gave me antispasmodics and anti-anxiety meds to mask the symptoms, but no one ever tried to get to the cause. Eventually, I was diagnosed with "ulcerative colitis." Again, I was given medication and told there was nothing I could do but wait until I got sick enough to have my colon removed.

I've had to struggle to find my own answers. A gluten and dairy free diet works for me. Any time I start to doubt it, all I have to do is eat a little of either and my body will be happy to remind me.



My own dr. says "you don't need the paper to tell you - listen to your body". He did run the blood panel, but it came up perfectly "normal". I do so miss dairy, and hope to one day be able to have it again! But for now - it's working, so I'll keep doing it!
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Ev in Michigan

GFDF since 8/20/05
Negative Bloodwork ~
Dr. encourages me to trust my
"Gut Reaction"

#12 darkangel

 
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Posted 06 December 2005 - 08:10 AM

My own dr. says "you don't need the paper to tell you - listen to your body".



I like your doctor! :D
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