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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Venting
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4 posts in this topic

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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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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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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