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Beating Myself Up Today


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16 replies to this topic

#1 jasonD2

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Posted 26 July 2010 - 03:40 PM

Counterproductive and pointless i know, but i keep thinking of all the ways i could have prevented my health problems from happening. To this day i believe antibiotics and giardia triggered all my GI issues. I got the bug on a river trip out west..probably because my intestinal immunity was low due to the antibiotics. Why did i go on this trip? i had a blast but was it really worth my life and my future? If i knew then what i know now i never wouldve even gotten sick..i woulda been on intense probiotic therapy and antiparasitic meds while on the river. something simple as popping a pill could have saved me and i could be eating a slice of pizza now. do you guys ever think about this stuff. i feel terrible at how many bad decisions i made that caused this. wish i could go back in time and deliver an in depth letter to myself ..ugh..
  • 1
Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

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#2 ravenwoodglass

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Posted 26 July 2010 - 03:55 PM

Everyone has regrets. It doesn't do any good to dwell on things you can't change all it will do is make you depressed and make others not want to be around you. You can't change the past but you can mold the future. Concentrate on what is ahead of you not behind. When we walk looking backwards we just keep tripping over every little rock.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 tarnalberry

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Posted 26 July 2010 - 03:58 PM

It doesn't even sound like it was a bad decision, just one that you would do differently with your current knowledge. Sounds a lot like my first 12 weeks as a parent :/

Make the best decisions you can AS you make them, and you're doing the best you can.
  • 1
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 burdee

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Posted 26 July 2010 - 04:24 PM

Counterproductive and pointless i know, but i keep thinking of all the ways i could have prevented my health problems from happening. To this day i believe antibiotics and giardia triggered all my GI issues. I got the bug on a river trip out west..probably because my intestinal immunity was low due to the antibiotics. Why did i go on this trip? i had a blast but was it really worth my life and my future? If i knew then what i know now i never wouldve even gotten sick..i woulda been on intense probiotic therapy and antiparasitic meds while on the river. something simple as popping a pill could have saved me and i could be eating a slice of pizza now. do you guys ever think about this stuff. i feel terrible at how many bad decisions i made that caused this. wish i could go back in time and deliver an in depth letter to myself ..ugh..


Rather than blame yourself for contracting giardia, blame the doc who treated you with antibiotics WITHOUT recommending you take high dose probiotics during that treatment to prevent new infections and further gut damage.

I recently realized that I could have avoided another 7 gut infections if my clueless naturopath had advised me to take probiotics on an empty stomach, rather than with meals. I didn't get enough probiotics during or after my treatment for klebsiella, because he advised me to take one daily with meals. (Taking probiotics with meals reduces their potency.) My next stool test showed I had 0 bifidobacter and 0 acidolphilus bifidus. Even after he recommended I take high dose probiotics (again with meals), a following stool test showed I only had a +1 acidophilus rating and still 0 bifido rating.

Maybe I could blame myself, because, rather than trusting that doc, I should have found a new doc then. Maybe I should have looked for another doc when that naturopath told me my symptoms (of cryptosporidia parasite) were 'stress related'. I certainly should have looked for a new doc when my clueless ND told me one year later than my symptoms (of c-diff) were also 'stress related'.

Live and learn. I'm just glad I finally found a more knowledgable doc (and followed your advise to get Custom Probiotics). I'm doing soooo much better now.

SUE
  • 1

Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#5 jasonD2

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Posted 26 July 2010 - 04:59 PM

Glad you're doing better Sue! im getting there too but i ate something a few weeks ago that upset the balance of my lower GI and everything has been off...going back to basics for now until i stabilize and will be getting retested soon
  • 1
Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

#6 lucia

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Posted 26 July 2010 - 05:33 PM

I wish you the serenity
To accept the things you cannot change;
the courage to change the things you can;
and wisdom to know the difference.

I don't think you could have changed this, but you can change the way you handle your recovery now.
  • 1

#7 txplowgirl

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Posted 26 July 2010 - 05:48 PM

Jason, as the old saying goes "hindsight is 20 20"
I remmeber several years ago I had d several times a day for 2 weeks. The only thing I seemed to be able to eat to settle my stomach was a slice or 2 of wheat bread. But for the life of me I couldn't figure out what was messing with me. Stomach bug or what. Went to the dr but he couldn't seem to find the cause and told me to quit stressing and take pepto. When I was a kid, I would eat something and get a tummyache so bad I would be crying. If I ate black pepper I would get d within 15 minutes, I figured that one out. Don't eat black pepper. All through my childhood into adulthood. For 40 years i've been miserable.
Yes, I think back at certain times and just wonder why I didn't catch on. But in the last year i've had to let it go or make myself crazy.
Jason, I know it's easier said than done but you have to stop dwelling on the past and let it go. Rejoice in knowing now what's wrong and look forward to the future. I wish you well.
Vicky
  • 1

Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#8 Jestgar

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Posted 26 July 2010 - 05:54 PM

Counterproductive and pointless i know, but i keep thinking of all the ways i could have prevented my health problems from happening. To this day i believe antibiotics and giardia triggered all my GI issues. I got the bug on a river trip out west..probably because my intestinal immunity was low due to the antibiotics. Why did i go on this trip? i had a blast but was it really worth my life and my future? If i knew then what i know now i never wouldve even gotten sick..i woulda been on intense probiotic therapy and antiparasitic meds while on the river. something simple as popping a pill could have saved me and i could be eating a slice of pizza now. do you guys ever think about this stuff. i feel terrible at how many bad decisions i made that caused this. wish i could go back in time and deliver an in depth letter to myself ..ugh..

Or

Gluten was damaging your body so slowly that you wouldn't have discovered the cause until you were in a wheelchair from nerve damage, severe anemia, and muscle wasting.

That trip out west saved your life by sending your gluten intolerance into high gear and allowing you to figure it out.
  • 1
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#9 jasonD2

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Posted 26 July 2010 - 08:10 PM

thats an interesting way of looking at it I suppose...although I used to have an iron stomach
  • 1
Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

#10 gf_soph

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Posted 26 July 2010 - 08:27 PM

I've spent a lot of time feeling down about my health, about the pain and discomfort, about the fact that I can't start my higher study until I get my brain function back, and all the fun I've missed out on over the last few years.

But, I had a colonoscopy recently as the Drs thought I might have Crohns. They didn't find anything to explain my symptoms, but they found a precancerous growth that would have progressed to cancer within a couple of years. I'm 25, so they wouldn't have started screening me until 40, and that would have been way too late. Now not only will I be monitored very regularly to catch any more before they get a chance to develop, but my sister and close relatives can go and get checked early too.

The way I see it, the severity of my gut symptoms has saved me from cancer, which would have been unsuspected and likely undetected until it was way too late. It's forced me to see things in a slightly different light, and to feel lucky instead of very very unlucky. I've lost some of the enjoyment of the last few years, but it's saved me from losing a lot more.

I've also realised that I am lucky to be dealing with it at this stage of my life when I can get by on a part time job and build back up, rather then it being triggered by something like pregnancy, which would make it harder to look after myself, or losing my job and house later on.

There is no point beating yourself up about what you could or should have done. All you can do is the best you know how to now, and you're doing the right thing by looking after yourself. It sounds like you have some good things happening right now, so it seems like a good time to look forward rather than back :)
  • 1

#11 missceliac2010

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Posted 26 July 2010 - 11:56 PM

Wow Jason, not only have you gotten some great advice from your question, but I'm almost in tears myself from the great advice! We can all learn something from what people have said to you. I took a little something from everyone's response to heart! Thanks everyone! And thanks Jason for asking the question that brought about such insightful, kind and genuine advice!

I can't possible follow any of those posts! I am not nearly eloquent enough...LOL..so I'll just say...Ditto! :)
  • 1
Heather C.
July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

#12 sandsurfgirl

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Posted 27 July 2010 - 03:51 PM

You may believe that the antibiotics caused this but you don't know that. Lots of people take tons of antibiotics and don't get celiac. I was on antibiotics for years and years, high doses and it didn't make my celiac any worse. There were times my symptoms disappeared for awhile during that.

You probably had celiac the whole time and didn't realize things you lived with were due to it.
  • 0
Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#13 jasonD2

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Posted 27 July 2010 - 09:36 PM

im thinking it was the Giardia not the antibiotics
  • 0
Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

#14 Skylark

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Posted 27 July 2010 - 11:54 PM

I feel like I lost years of my life to psych illness that was directly caused by undiagnosed celiac disease and mismanaged by easily a half-dozen doctors. If I were to dwell on this, I would lose my mind. The past is water under the bridge and you cannot change it. There is hardly a person alive who doesn't have regrets about something along the way. Rather than looking back, you need to look forward and make a conscious decision to make the best of what you have. You sound like a smart, sensitive, and kind young man who has a lot to look forward to in life.
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#15 glutenfr3309

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Posted 28 July 2010 - 06:00 AM

I wish you the serenity
To accept the things you cannot change;
the courage to change the things you can;
and wisdom to know the difference.


i love that!!


i don't try to dwell on why this is happening to me. i'm glad i figured out what was wrong and i feel HEALTHY and HAPPY again! if anything, it has made me more aware of food in general from reading ingredients. i have learned so much about how food can effect your body. even if the doctor told me i could eat gluten again tomorrow i don't think i would.

chin up...like the quote says above accept what you can't change. you are better off in the long run gluten-free and are healthy because of it!!
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