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jasonD2

Why Am I Not Getting Better

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I was diagnosed with leaky gut and multiple food allergies and mild yeast overgrowth. I had extensive testing done back in October and have been on a very strict diet ever since. no gluten, soy, dairy, eggs and a whole list of other foods I tested positive for. Life has been very tough and im exhausted from constantly having to cook all my own food and its also putting a strain on my wallet since gluten-free foods are not cheap. I feel a touch better then I did before....my main symptoms were fatigue after meals and chronic constipation for 5 yrs. Now im having a BM pretty much every day, but I still have to strain to go cause my stools are a bit hard when they first come out. I guess im frustrated cause i am not experiencing dramatic relief, which is what i was hoping for. only supplements i take now are acacia fiber, probiotics and digestive enzyme supplements before meals which seems to at least guarantee a daily BM. i am sensitive to a lot of other supplements that i had to cut back on and am really just trying to keep it simple. Just not sure if all of this is worth it but I guess i will continue.


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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I was diagnosed with leaky gut and multiple food allergies and mild yeast overgrowth. I had extensive testing done back in October and have been on a very strict diet ever since. no gluten, soy, dairy, eggs and a whole list of other foods I tested positive for. Life has been very tough and im exhausted from constantly having to cook all my own food and its also putting a strain on my wallet since gluten-free foods are not cheap. I feel a touch better then I did before....my main symptoms were fatigue after meals and chronic constipation for 5 yrs. Now im having a BM pretty much every day, but I still have to strain to go cause my stools are a bit hard when they first come out. I guess im frustrated cause i am not experiencing dramatic relief, which is what i was hoping for. only supplements i take now are acacia fiber, probiotics and digestive enzyme supplements before meals which seems to at least guarantee a daily BM. i am sensitive to a lot of other supplements that i had to cut back on and am really just trying to keep it simple. Just not sure if all of this is worth it but I guess i will continue.

what's acacia fiber?


only when hope is fulfilled, hope is lost

*D-Digestive problems throughout youth and young adulthood unattended

*Self-convinced IBS '04 (began eating rice, breads, crackers...SFs to 'slow' the natural process)

*Winter '06 developed severely swelled legs with rashes, white tongue

*Self-diagnosed; Gluten Free Spring '07

*Celiac.com diagnosed Candida, Thrush Spring '07 (all that 3 years prior of nothing but rice)

*Celiac.com diagnosed IC Summer '07

*Winter '08 pursuing more accurate testing for dianosis of the beast in which I am battling

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Constipation issues seem to take much longer than 3 months to resolve. I've been reading this forum for quite a while now and I don't recall anybody, ever, reporting dramatic relief when C was the problem.

Have you tried taking magnesium? Not so much as to act like a laxative, just enough to soften your stools. (I think folks pretty much have to experiment to see how much is enough and how much is too much.)

I assume you are eating lots of fiber-rich foods?


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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Jason,

This does really sound difficult, especially when you don't see a lot of progress. With you having been faithful for several months, I would start to wonder if there is something else going on that is causing the multiple sensitivities.

There are several threads here of folks that have found help one way or another. Hopefully they'll post too.

Here's my suggestions: Just pop in (don't try to read it--its way too long) and post in the "OMG I think I might be on to something" thread, where there are a number of people who have not gotten better with very restrictive diets and have found other issues including infections, parasites, heavy metal toxicity, lyme disease, etc. etc. Just post your question again there and see what happens.

Also, I'd check out the lyme disease thread on this forum. Several who have now been diagnosed with lyme disease had a lot of digestive symptoms.

Hope you find some answers, and glad you keep asking here on this forum. Seems like there are such wonderful people resources here.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Thanks - but i dont have lyme disease or heavy metal poisioning- all of my problems originated from antibiotics and gastroenteritis and not taking proper care of myself back when everything happened. also been tested for parasites and all the other goodies.


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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Hi Jason, I have found something that seems to help me a great deal when I am dealing with C. It is sweet potatoes. I don't know why they seem to help regulate so well, I do know they are an 'ancient' oriental medicine 'cure' for C and D. If you like them try adding them to your diet, they seem to be rather soothing also.

It can take a while to heal and for your system to get used to working normally. You also mention being fatigued, you should add a good sublingual B12 and see if it helps. There are many different brands, I use country life. It may help a lot with the tiredness.

I hope you feel better soon.


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)

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 in time with proper diagnosis of Celiac November 2002

 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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Jason could I recommend trying a super potent pribiotic and some psyllium daily?

Just don't take them at the same time. Take the probiotics on an empty stomach.

My two cents :)

Be well

sickchick


Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!

Dairy & Soy free since Dec 1st 2007.

Potato free since January 3rd 2008.

Remaining Nightshades since April 1st 2008. Back on September 2010. :)

Developed Rice & Tapioca & Corn Intolerances...

NO Carageenan.

In a constant state of evolution... sending love! :)

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This is very interesting, but I am on all kinds of meds (antibiotics) and supplements and I was getting really constipated for a while. So, I took some psyllium fiber and it actually made me WAY more constipated and feel WAY worse!

Some people say it's best to take all supplements out and slowly add them back in one at a time to see if any are making you worse without realizing it.


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Jason,

I also know how you feel. I've been at this 5 months and have seen very little improvement. I also have symptoms of fatigue and constipation. What has helped me immensely with the constipation is a product called Natural Calm Magnesium. You mix it in a tea and can adjust the amounts.

I see a natural doctor who uses energy/biophysics to diagnose - hard to explain! I just saw him and he said I must have recently got some gluten in, which I knew based on the constipation coming back. So now I am calling every company about every product that goes in my mouth. I bought new pots etc. So maybe you might be getting a little bit in somewhere. Just a thought.

I keep hanging in there because I hope there is a light at the end of the tunnel. Take Care.


Years of symptoms: depression, chronic fatigue, insomnia, irritability, constipation

Hashimoto's/Hypothyroid 2001

Had to go into alternative medicine to get answers

Positive enterolab results 10/07

Gluten free 8/07

Dairy free 10/07

Adrenal fatigue

Still not all that well - looking at other foods intolerances

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Jason,

You should definitely check in to getting yourself a good gluten free vitamin with Magnesium, and/or get a 250 mg supplement of Mg. Magnesium is a natural muscle relaxer and will help you sleep as well as give a normal bowel movement within about 8 hours.

I take it about 30 minutes before bed and it its awesome since I have always had problems with those two issues.

It makes sense that you would be mineral deficient since your body has trouble absorbing nutrients right now. Also, 4 months seems like a long time when you're agonizing from day to day what to eat, but it really isn't that long in the whole scheme of things. I would give yourself at least a year. (I've only been gluten-free 3 weeks and would love to be where you are now! :) )

I have a Celiac friend who took 6 years to stop his IBS and diarrhea problem, and now at a restaurant even using a contaminated skillet to cook in sets him off. I think you'll heal up faster than him, though. It took him 40 years to catch his problem.

Good luck, and I hope this helps,

~Heather

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Wow, I'd love it if I could take only 250 mg of magnesium and it acted in 8 hours. Unfortunately, I need much more over the course of a day and it takes longer.

Just to note that there are individual variations ...


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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