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Canceling My Colonoscopy


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9 replies to this topic

#1 imsohungry

 
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Posted 07 September 2010 - 04:44 AM

Hi everyone,

I'm supposed to have a colonoscopy tomorrow, but I'm canceling it. Besides my Dr. being condescending...I've since realized that a colonoscopy is not the test to get for Celiac testing, and that is how he says he tested for it last time.

I am also too weak for the prep. required for the test. A whole bottle of Miralax and 4 Ducolax tablets. I'm already having D 5-10 times a day (the other day, 12). I don't have enough strength not to eat AND take all that to "flush" out my system.

Meanwhile, while I postpone the test(s) and look for a new GI, I was wondering, on average, how long it takes to see results once one goes gluten-free?
I've been gluten-free before, and my stomach regulated itself. It wasn't until this doctor told me to eat gluten again that my tummy started acting crazy.

What actually happened was that I ate gluten during my pregnancy, and I had no bad reactions. Once my son was born, my symptoms came back. This doctor told me it obviously wasn't gluten sensitivity or intolerance or I would have been sick during my pregnancy. Nonetheless, gluten-free is the ONLY time my stomach has functioned "normally." Any thoughts? Any ideas on when I should start feeling better after going gluten-free again...I know it varies by person, but is there a "general" time-frame? Thank you. :)

-Julie
  • 1
Loves of my life: God, my hubby, and my baby boy!

"I will never give up on my dreams; I will simply modify my path for reaching them." (JH-me).

"Life's a dance you learn as you go, sometimes you lead, sometimes you follow"
(John Michael Montgomery).

"I'm gonna be somebody, one of these days I'm gonna break these chains" (Travis Tritt).

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."
(Garth Brooks).

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#2 ravenwoodglass

 
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Posted 07 September 2010 - 05:30 AM

Your doctor does sound clueless if he was looking for celiac with a colonoscopy he wasn't actually looking for celiac at all.
I find it interesting that your symptoms resolved while you were pregant and resumed the baby. I don't know if it is common but I saw the same effect when I was preggers with my second child. I had horrible morning sickness but once that was over I felt better than I had in a long time. Of course symptoms came back with a vengance after she was born.
Have you had a celiac panel done? Your regular doctor or even your OB/GYN could order it. You do need to have that done before you go gluten free of course.
As far as healing times goes it can vary. I had a resolution of my D and migraines within a short time, like about 2 weeks but the rest of the issues took much longer. Healing can take some time but if you go with a whole food unprocessed diet and do the things you need to do to be safe at home that will help speed things along.
I wish you the best and although I think you did the right thing to cancel with this clueless doctor do be sure to find a new GI who is more celiac savvy in case your issues don't resolve. You may want to consider finding a new one before you go gluten free if you feel you need a formal diagnosis with the endo. Some GP or Internists may diagnose based on blood test or symptoms resolving gluten free but not all will.
  • 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 imsohungry

 
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Posted 07 September 2010 - 05:51 AM

Your doctor does sound clueless if he was looking for celiac with a colonoscopy he wasn't actually looking for celiac at all.
I find it interesting that your symptoms resolved while you were pregant and resumed the baby. I don't know if it is common but I saw the same effect when I was preggers with my second child. I had horrible morning sickness but once that was over I felt better than I had in a long time. Of course symptoms came back with a vengance after she was born.
Have you had a celiac panel done? Your regular doctor or even your OB/GYN could order it. You do need to have that done before you go gluten free of course.
As far as healing times goes it can vary. I had a resolution of my D and migraines within a short time, like about 2 weeks but the rest of the issues took much longer. Healing can take some time but if you go with a whole food unprocessed diet and do the things you need to do to be safe at home that will help speed things along.
I wish you the best and although I think you did the right thing to cancel with this clueless doctor do be sure to find a new GI who is more celiac savvy in case your issues don't resolve. You may want to consider finding a new one before you go gluten free if you feel you need a formal diagnosis with the endo. Some GP or Internists may diagnose based on blood test or symptoms resolving gluten free but not all will.


Interesting that you had the same results when you were pregnant! I had horrible morning sickness through my first trimester and lost a lot of weight, and then I started craving Krystal hamburgers (like White Castle burgers). I could eat 10 at a time! But amazingly, I wasn't doubled over with pain and diarrhea.


I have had a blood panal done by a good GI who has since moved out of state; his results came back partially positive (which means inconclusive), but he told me to go gluten-free because of my family history of celiac and GI problems. He also said that my personal symptoms and other autoimmune diagnoses led him to believe that "in [his] professional opinion," if I didn't start the diet, he would be seeing me back in five years with full-blown celiac with intestinal damage.

Sigh....I just want to feel better. :unsure:
  • 1
Loves of my life: God, my hubby, and my baby boy!

"I will never give up on my dreams; I will simply modify my path for reaching them." (JH-me).

"Life's a dance you learn as you go, sometimes you lead, sometimes you follow"
(John Michael Montgomery).

"I'm gonna be somebody, one of these days I'm gonna break these chains" (Travis Tritt).

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."
(Garth Brooks).

#4 cassP

 
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Posted 07 September 2010 - 06:54 AM

it depends on if you're the kind of person who needs an Official Dx.... if you do- i would get to a different GI ASAP, stay on the gluten & get the endoscopy.... if you dont need the dx, then go off the gluten now.... that's a hard decision- and up to every individual...

anyways- my intestinal issues improve 95% with 2-4 weeks of going gluten free!

i think it was a good decision for you to cancel your Colonoscopy- what a strange doc. I dont know your age, or health- but it IS good to the Colonoscopy to rule out other illnesses.... especially if you have Celiac- its good to check the colon to make sure there's been no damage. if you need the DX- then change docs now, stay on gluten, and get both procedures done-
OR, if u dont need the dx.... get healthy now OFF GLUTEN... and get the colonoscopy later when you're healed enough to handle the Prep

best of luck to you :)
  • 1
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#5 Skylark

 
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Posted 07 September 2010 - 08:57 AM

I have had a blood panal done by a good GI who has since moved out of state; his results came back partially positive (which means inconclusive), but he told me to go gluten-free because of my family history of celiac and GI problems. He also said that my personal symptoms and other autoimmune diagnoses led him to believe that "in [his] professional opinion," if I didn't start the diet, he would be seeing me back in five years with full-blown celiac with intestinal damage.

I'm confused. Why are you gluten challenging when your doctor told you that you were latent celiac? Did he explain that celiac disease is progressive and the more gluten you expose yourself to, the worse the autoimmunity can become?

Get off the stuff and get well again. Things should start to settle down in a couple weeks. If you're so weak on gluten challenge that you can't even tolerate a bowel prep, you have your answer about celiac anyway. Do yourself a favor and refuse further challenges to avoid making your gluten problems worse.
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#6 imsohungry

 
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Posted 07 September 2010 - 10:01 AM

I'm confused. Why are you gluten challenging when your doctor told you that you were latent celiac? Did he explain that celiac disease is progressive and the more gluten you expose yourself to, the worse the autoimmunity can become?

Get off the stuff and get well again. Things should start to settle down in a couple weeks. If you're so weak on gluten challenge that you can't even tolerate a bowel prep, you have your answer about celiac anyway. Do yourself a favor and refuse further challenges to avoid making your gluten problems worse.


The reason I continued eating gluten after my pregnancy is because my new GI did bloodwork that came back normal (I had to change GI's once my other one moved out of state) and the new GI also told me that I didn't need to be gluten-free. :blink:
  • 1
Loves of my life: God, my hubby, and my baby boy!

"I will never give up on my dreams; I will simply modify my path for reaching them." (JH-me).

"Life's a dance you learn as you go, sometimes you lead, sometimes you follow"
(John Michael Montgomery).

"I'm gonna be somebody, one of these days I'm gonna break these chains" (Travis Tritt).

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."
(Garth Brooks).

#7 Skylark

 
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Posted 07 September 2010 - 10:13 AM

That's confusing all right. :blink: The blood tests can shift around, especially anti-gliadin.

I think you have your answer about gluten, though. Feel better soon!
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#8 SGWhiskers

 
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Posted 07 September 2010 - 04:37 PM

Were you gluten free when you had the 2nd blood test done? If yes, it is supposed to come back negative. That does not mean it is gone, just that you are managing the diet well. Also, if the doc didn't run all the tests, he/she could have missed the one that was positive.

After learning from these folks and online journal articles, I would stay gluten free for life even if I only had one positive result.
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#9 frieze

 
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Posted 08 September 2010 - 04:35 AM

celiac being autoimmune, it is no surprise that it wanes during pregnancy.
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#10 undiagnosed2years

 
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Posted 10 September 2010 - 03:33 PM

I became ill after a pregnancy. Been in poor health ever since. These stomach problems I'm having didn't start right away after the pregnancy though, but a few months afterward.
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