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Having Second Thoughts.... And I Cheated Today....


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#1 crampy girl

 
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Posted 17 September 2010 - 08:17 PM

Ok, for starters I have made several posts and gotten may questions answered. Thanks to all. And this is a great support forum. I want to say a couple of things about my reason why I think I may have celiac, or gluten intol. or not? If anyone can help, chime in....
My bouts consist of cramps, D and almost passing out from pain, w sweating, lasts about 4 hours, but cramps after ea meal no matter what I ate for several days....followed by a week of C.
My first really bad episode came on after I ate a box of ritz crackers.
Since then ( I was 17) I averaged about one every two or three years. Went to doc, got dx of Spastic colon and got put on some anti depressant even though I was not depressed. Didnt help, got off them. I took them three months.
Around age 28 I was getting them more frequently. Like once a week. I also dev. gerd and found out I was lactose intol.
So I stopped lactose without a lactaid pill, got better but cont to have these bouts. Got put on prilosec, got even better.
Then still had bouts, but less freq, more like monthly. Each bout lasted several days,followed by C. for a week. Got put on metamucil. no help there. Senna was the only relief or MOM.
Had one bad bout related to stress of taking a very important exam, made me think this is all stress related. Got put on Serotonin re uptake inh. DID NOT HELP one bit. still had crazy episodes, not really liked to stress.
Also have runners diarrhea if I train too hard. And had several episdes when I had to stay up all night on call while in residency. Also ate lots of carbs to keep me awake.... makes me think it has something to do with stress.
Went to doc mult times for help. Got an endoscopy, ten years ago, normal. Had a HIDA gall bladder study with dyskenesia and low functioning gall bladder, so I got it taken out thinking maybe that was my problem...still no relief.
Went to see a different GI doc who said I could have celiac, or mastocytosis. Did a panel, came back neg. He wanted to do a sm bowel biopsy, I declined. This was three years ago.
Symtoms worsened over time. Nothing really to do with stress, would happen on vacation even. Seems like it was almost a weekly thing again. No diff when pregant, still had episodes.
Been Anemic all my life, but not lately. Seems dietary rather than absorption issue. Got vit pannel, low on Vit D, thats it.
Second celiac panel done after two weeks of gluten free, neg again.
Went gluten free August 1 or so until yesterday, except for two mess ups by accident which were both followed by next day "episodes".
So, if I don't have an episode tomorrow,( I ate half a bagel, cheezits and gold fish)then I am off the gluten diet. BUT.... was wondering if perhaps I have more than one intolerance? Say to grains in general? I was eating a ton of corn and corn tortillas. And cramped up after eating a bunch of apricots (maybe too much potassium), and cramp after banannas. Most of my episodes happen in the morning. Or perhaps symptoms just sort of happen sometimes and not, like an intermittent thing?
So does that sound like anything related to gluten intollerance? I don't have any other autoimmune issues....or any of the other classic symtoms I have been reading about..except maybe the mental fog thing which went away after a couple of weeks on the diet.......
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43 year old female with IBS symtoms for 25+ years.
Celiac blood panel tests neg x 2
HLA-DQB1 Allele 1, 0201; HLA DQB1 Allele 2 0602; Serologic EQ HLA-DQ 2,1 (SUPTYPE 2-6)
ANTI CASEIN IGA 30 UNITS (Normal less than 10)
Fecal Anti gliadin IgA. 24 (normal less than 10)
Fecal Anti-tissue TG IgA 8 (normal less than 8)
Anti Soy IgA 34 units
Fat malabsorption- 356 normal less than 300
Vit D deficient by blood test

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#2 Roda

 
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Posted 17 September 2010 - 08:41 PM

This is very much a personal choice but, you could have the EGD with biopsy done. It might give you some answers. It is possible to have negative blood work and still have a positive biopsy. I've had two and I didn't have any problems or complications from either. I also had a colonoscopy done (at age 35) for occult blood. I'm glad I did because they found and removed a polyp.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#3 Heidi S.

 
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Posted 17 September 2010 - 08:53 PM

I have been through very similar to u, told it was stress, vitamin D deficiencies, bad spells increasing with age, exercise runs, oh the cramping...took out gallbladder only to get worse, negative on celiac panels, acid reflux, high fiber supplements...joke.

All I have to say is you know your body better than anyone, I can't eat early morning even being gluten free, does not matter what you react to if you are celiac with damage you will react to everything until you get gluten free and purge your system to heal. Detoxing can be slow and take upwards of 6 months to remove symptoms. My vitamin D levels are stable and good, it is NOT stress related, and even though I can not test positive for celiac for the life of me, I am 100% intolerant of gluten! I do have other allergies that have developed due to the years of damage on a weaken system (eggs, garlic, citrus fruits) but I was able to pin-point them later with an allergist easy b/c I got my gluten systems cleared up! It is called "practicing medicine" for a reason, they do not know all the answers for every person. I am a new person being gluten free for over a year, I truly have a stomach stress free life most of the time! I hope you experience that!!

Best of Luck!
  • 1

#4 ravenwoodglass

 
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Posted 18 September 2010 - 02:25 AM

Went gluten free August 1 or so until yesterday, except for two mess ups by accident which were both followed by next day "episodes".
So, if I don't have an episode tomorrow,( I ate half a bagel, cheezits and gold fish)then I am off the gluten diet.


Some folks have delayed reactions to gluten. If you are going to do a gluten challenge then eat gluten at least 3 times a day for a week before you decide to go off the diet. If your intolerant to gluten you should react by the end of the week.
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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)

#5 cassP

 
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Posted 18 September 2010 - 03:53 AM

sounds like celiac or gluten intolerance to me for sure. and false negative blood tests are common ESPECIALLY if they dont test for EVERYTHING.

stress CAN affect your digestive tract- ABSOLUTELY, BUT-> that doesnt mean it's all "in your head" at all...

its up to you if you want to go on an ADEQUATE gluten challenge for more tests... or if you dont need a dx to go on the diet and heal.

if you DO want to do the challenge- make sure you get COMPLETE testing (TTG Iga & Igg, Antigliadin Iga & Igg, Endomysial Antibodies, and Total Iga Serum, & 6 or so biopsies in different sections of the small intestine)... just so the gluten/sickening challenge wasnt a waste of your time.

**also there's a newer test too... i forgot what it's called... a newer De-something antigliadin. OK, someone else is gonna have to post that.

cant wait till you start feeling better!!!!!
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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 :(

#6 glutenfreeinminnesota

 
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Posted 18 September 2010 - 03:22 PM

I started feeling sickly and diagnosed with anemia when I was 15 (11 yrs ago). Got really sickly for 2-3 years before celiac diagnosed, had D, headaches, anemia of course, cramps, pain, sweating and shaking when going to the bathroom, went to the bathroom 9-12 times a day. I thought it was just how I was going to be...though it never seemed to matter what I ate, I was always sick. Finally got sent to a GI. Had a Endo and diagnosed with Celiacs. I have been on the gluten-free diet for 10 months now, and about 3-6 hours after I have consumed it, I know it. But...once I ate tomato soup at my parents, which was on my gluten-free shelf, so I didn't pay attention. Ate about 4 bites....said "wow mom, this is good!! what kind is this again??" and she goes NOOOO, its the tomato!! it has gluten!! I stopped eating it immediately, and never felt a thing. I would do the endoscopy if I was you. If you have the insurance to cover it, at least you will know..good luck!
  • 1
Diagnosed with Celiac Disease November 2009
2011:
Anemia is gone for the first time in my life, Yay!
Teeth are cleaner according to my dentist (interesting, eh???)
Eyesight has improved for the first time in my life (another interesting thing!)

**My advice to the newly diagnosed** HANG IN THERE!! It gets better and is so worth the seemly long road to getting better. Just be happy you can make yourself healthy with a diet change, and not have to take pills for the rest of your life. :D

#7 crampy girl

 
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Posted 21 September 2010 - 04:28 AM

I have been through very similar to u, told it was stress, vitamin D deficiencies, bad spells increasing with age, exercise runs, oh the cramping...took out gallbladder only to get worse, negative on celiac panels, acid reflux, high fiber supplements...joke.

All I have to say is you know your body better than anyone, I can't eat early morning even being gluten free, does not matter what you react to if you are celiac with damage you will react to everything until you get gluten free and purge your system to heal. Detoxing can be slow and take upwards of 6 months to remove symptoms. My vitamin D levels are stable and good, it is NOT stress related, and even though I can not test positive for celiac for the life of me, I am 100% intolerant of gluten! I do have other allergies that have developed due to the years of damage on a weaken system (eggs, garlic, citrus fruits) but I was able to pin-point them later with an allergist easy b/c I got my gluten systems cleared up! It is called "practicing medicine" for a reason, they do not know all the answers for every person. I am a new person being gluten free for over a year, I truly have a stomach stress free life most of the time! I hope you experience that!!

Best of Luck!

Hey Heidi, thanks for your relpy. I am going to do the enterolab thing. I have been doing something small with gluten every other day for fear of an episode. I have this awful crack on the side of my mouth again and excema on my eye lid again. I have had it before when I was dieting after I had my last baby, and before that as a child many times. Was told it was some vit def like b or zinc? Do you get those? Im going to make a post on another forum to see if that's common or what. I also think I may have vitiligo? I have this bright white spot that has been getting bigger over the years. thx
crampy girl
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43 year old female with IBS symtoms for 25+ years.
Celiac blood panel tests neg x 2
HLA-DQB1 Allele 1, 0201; HLA DQB1 Allele 2 0602; Serologic EQ HLA-DQ 2,1 (SUPTYPE 2-6)
ANTI CASEIN IGA 30 UNITS (Normal less than 10)
Fecal Anti gliadin IgA. 24 (normal less than 10)
Fecal Anti-tissue TG IgA 8 (normal less than 8)
Anti Soy IgA 34 units
Fat malabsorption- 356 normal less than 300
Vit D deficient by blood test

#8 Heidi S.

 
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Posted 21 September 2010 - 06:22 AM

Hey Heidi, thanks for your relpy. I am going to do the enterolab thing. I have been doing something small with gluten every other day for fear of an episode. I have this awful crack on the side of my mouth again and excema on my eye lid again. I have had it before when I was dieting after I had my last baby, and before that as a child many times. Was told it was some vit def like b or zinc? Do you get those? Im going to make a post on another forum to see if that's common or what. I also think I may have vitiligo? I have this bright white spot that has been getting bigger over the years. thx
crampy girl



Good Luck with the enterolab, I hope you find some answers! Remember in order to perform these tests you do have to damage your system, damage you have to heal from, be careful and stop if conditions worsen, no testing is worth serious complications.

I do have the skin form celiacs mine manifests itself with tongue spots (patches of very painful spots on my tongue) and dry cracking skin around my mouth. Though I haven't seen them in a long time. My vitamin D deficiency gives me TERRIBLE joint pain and exhaustion. Am not sure to be honest on the effects of B or Zinc. Sorry I couldn't be of more help! But you can have your vitamin levels checked by a primary care doctor with a simple blood test.
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#9 Marz

 
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Posted 21 September 2010 - 07:31 AM

Hi there,

I've found gluten to be a very sneaky substance. If you've been off gluten for a while, you might find you won't react instantly to the first bit of gluten you ingest, especially if you're not the super sensitive type.

Now that I'm gluten free, I don't always get a huge GI reaction from accidental gluten exposure - it's becoming more skin problems (itchy spots, sores in mouth, chicken skin like bumps etc), headaches, anxiety, muscle weakness etc etc.
Before gluten free I also had the extreme diarrhea, night fevers/chills, sore stomach etc.

So don't assume no diarrhea after gluten = not gluten intolerant/celiac.

Having said that, for my "gluten challenge" I had plain tasty wheat (Better to go with something with a single ingredient). I got through 3 days or so of eating it twice a day, before I waved the white flag and told myself to stop because I was starting to get the chills again. Definitely stick with the challenge for a few days and see what happens.

Are you keeping a journal of what you eat and symptoms? It's really nice to go back and see - yup, I was eating wheat, and I felt really sick. Then I was gluten free, and I felt perfect. Helps to convince yourself when you feel you need proof :)

Hope the enterolab testing goes well - for that they recommend you continue being gluten free, you don't need to challenge yourself for the enterolab tests, but you do for any additional blood tests/biopsies :(
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant




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