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Celiac + 6 Weeks Of D - But Antibodies Are Low!


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#1 JRock

 
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Posted 04 January 2011 - 09:30 AM

Been diagnosed celiac for a little over 2 years now - watched my antibodies go from 100+ to 6 right now. Health has been a real issue for me - a few months ago I took a supplement with iron and wound up so constipated my intestines were literally filled to the brim (my doc showed me on the x-ray). For the past 6 weeks, it's been the opposite - D anywhere from 5-15 times per day. I am gluten-free of course - tried eating just bananas, applesauce and rice for a week, then went just to liquids for two days because I couldn't handle embarassing myself by running to the bathroom at work so many times per day. Then I tried just rice for a week. Fortunately my weight is stable. My gastro doc insists I'm getting glutened and have IBS. I am in so much pain I wind up taking 3 ultrams a day minimum. Tried lomotil so many times in the past 6 weeks. Taking align probiotics and getting a new gastro doc - til then my family care doc put me on antibiotics in case it's intestinal bacterial overgrowth. Of course, that just makes me more miserable. If I eat anything, the tension in my abdomen and the pain is so much that I don't even want to think about food or water or anything. And it all makes me sick. Tomorrow I go see the new gastro doc, then in 2 weeks I have an appointment with another gastro doc. UGH! This is humiliating! And of course being on pain meds causes my doc to raise his eyebrows - well I've tried everything else! These anti-spasmodics and anti-depressants for pain just don't work on me.

Any tips or help would be sooo much appreciated. My doc ran some sort of Crohn's test a while back and he said it was negative (a blood or serum test) - so frustrated.

Jen
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#2 Skylark

 
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Posted 04 January 2011 - 11:03 AM

Ugh. That sounds terrible.

If you were still sick on plain rice, you might try the specific carbohydrate diet. It was designed to limit growth of bacteria that cause problems in IBS and SIBO. There are people on the board who have had great results with it.
http://www.breakingt...iouscycle.info/

Also, take a look at this info on fructose malabsorption, although if you were still sick on plain white rice fructose is probably not the main issue. It might explain problems with applesauce and bananas. You might try Specific Carbohydrate but also limiting fructose at first.
http://health.glam.c..._malabsorption/

Good luck and I'm sure folks will have other suggestions for you.
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#3 JRock

 
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Posted 05 January 2011 - 06:44 AM

Thank you - I'm going to ask my doc today about SCD - at this point I'm willing to try anything.

Was awake most of the night with gas and headache (I'm sure the headache was due to not eating) - but it was a welcome break from the constant D - I know not eating isn't the best plan, but I needed a break.

Wondering if anyone has experience with Crohn's - my old doc (who insists I'm somehow ingesting gluten) did some serum test for it and said I don't have the gene, but I can't find anything online about genetic tests.

Ugh - hopefully the new doc can shed some light on this. Also, a new pain developed - lower left side of the front - but more in the back. My boyfriend thinks it's my kidney due to dehydration, so I'm drinking as much liquid as I can handle.
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#4 ravenwoodglass

 
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Posted 05 January 2011 - 08:30 AM

Thank you - I'm going to ask my doc today about SCD - at this point I'm willing to try anything.

Was awake most of the night with gas and headache (I'm sure the headache was due to not eating) - but it was a welcome break from the constant D - I know not eating isn't the best plan, but I needed a break.

Wondering if anyone has experience with Crohn's - my old doc (who insists I'm somehow ingesting gluten) did some serum test for it and said I don't have the gene, but I can't find anything online about genetic tests.

Ugh - hopefully the new doc can shed some light on this. Also, a new pain developed - lower left side of the front - but more in the back. My boyfriend thinks it's my kidney due to dehydration, so I'm drinking as much liquid as I can handle.


Not eating is not a good solution although I know it is tempting. Has your doctor run stool samples to make sure that you haven't picked up food poisoning that is lingering? Too often doctors assume it is IBS or CC and neglect to test. I had salmonella poisoning a while back and had to insist strongly on stool tests. My doctor insisted it was IBS. I got a quick phone call and an apology when the results came back.
Have you had a colonoscopy? Lower left pain can be from diverticulosis, and if you are running a fever diverticulitis which is an inflammation of the dieveriticuli. The colonoscopy can also rule out Chrons.
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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)




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