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Celiac + 6 Weeks Of D - But Antibodies Are Low!
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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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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.breakingtheviciouscycle.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.com/blogs/healthhypecom/low_fructose_diet_in_fructose_malabsorption/

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

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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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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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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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