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Venting


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3 replies to this topic

#1 allisont

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Posted 02 March 2011 - 08:55 PM

Hello,

I've been gluten free for three years, and no longer eat 'gluten free' food made on shared equipment/facilities. I'm pretty sensitive, which I learned the hard way in the beginning because I'd try things like grabbing a french fry off my boyfriend's hamburger plate and ending up bed ridden for one or more days. It feels somewhat like the flu, with chills, and joint swelling. Anyway, I'm mainly just venting, because its been three years and I still suffer from malabsorption, hypoglycemia, and anemia. Despite iron supplements and a high iron diet, I feel as if my fatigue is getting worse. My doctor just looks at me and says, "You're just sensitive." After years of fighting for some diagnosis, I sometimes feel like I'm at square one. Sometimes I feel like I'm going insane! I'm I supposed to live in a bubble?
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#2 mushroom

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Posted 03 March 2011 - 01:13 AM

Hi, allisont, I'm so sorry to hear that after all this time you are still having so much trouble. May I ask if your PCP is keeping on top of your various nutrient levels, in addition to ferritin. Like Vit D, B12, folate, Vit. C, potassium, magnesium, calcium, zinc?. Have you had your thyroid tested? Low levels of any of these are possible causes of fatigue. Even if you're gluten intolerant rather than celiac does not mean that you will not be deficient in these nutrients, and when I say deficient, I am not talking about way below normal, but low normal. Normal is set way too low for most of them and you really need to take supplements to keep you in mid-range, so if you have not had any of these checked lately I think you are ovderdue :) Get your blood sugar checked again, too, if you haven't already, and get copies of your results instead of just having your doc tell you that you are fine :rolleyes:. Their fine and our fine often differs remarkably. It is much easier to do nothing than do something which involves thinking.

If you are still suffering from malabsorption, you may still have a leaky gut which needs healing, and you should be takeing high-dose probiotics to assist with healing, and maybe some L-glutaminel you may even benefit from some digestive enzymes because your pancreas may not be putting out enugh..

Let us know what you have been doing to help yourself heal.

And by the way, putting something of dubious origin in your mouth is a definite no-no :ph34r:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 Korwyn

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Posted 03 March 2011 - 03:17 AM

Hi Allisont,

I want to say ditto to everything mushroom said. :) I'm also supersensitive to soy as well as gluten and I've developed what appears to be a true dairy allergy in the last year. So I can related to the frustration. But as far as the continued malabsorption issue(s) I had a similar problem for quite a while. I finally began seeing some significant changes after about 6 months on a strict paleo diet (85% fish/seafood, poultry, beef, other meat and limited raw veggies/15%), taking high doses of probiotics, prescribed high doses of D3 (8000-10000 IU/day), and sublinguial B12. I saw additional improvement after starting treatment for hypoadrenia (low adrenal function which doesn't meet the 'lab' ranges for Addison's disease). I finally stopped losing weight due to malabsorption (a mixed blessing), and a number of my other malabsorption related issues have gradually (mostly) cleared up (neuropathy, some memory issues, muscular issues, fatigue). My hypoglycemic/hyperglycemia (Dr. said I was looking borderline diabetic with my swings in blood sugar) issues resolved within three weeks of switching to the paleo diet.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#4 dilettantesteph

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Posted 03 March 2011 - 06:41 AM

I just listened to a talk by Dr. Peter Green of Columbia. He said that low carnitine levels can be associated with fatigue in celiac disease patients. Maybe you could talk to your doctor about testing for that.
http://www.northbayc...petergreen.html
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