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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.

So Sick, And Not Sure Where To Go
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3 posts in this topic

I am at my wits end with this sickness. 

 

My story -

 

  • I was raised on junk food, tv dinners, cans of veggies, etc. 
  • Around 3rd grade my abdomen became shockingly distended, stretch marks and all. Never went away, regardless of overall body weight. I suffered constipation daily. I was very overweight.
  • As a teen, I suffered extreme D, lost a ton of weight for seemingly no reason. I went vegetarian around age 13, but I still ate the junk food my parents would buy, in large amounts.
  • D remained throughout college, to the point of me fearing going anywhere without a restoom nearby. I could not drink cold water or drinks without immediately having D. I snuck away from my dorm and used the general university dorm bathroom downstairs to avoid embarrassment. I could eat anything I want, in any quantities I wanted without gaining weight. I also experienced extreme nervous bowels. 
  • In grad school I changed my diet to whole foods, and went vegan. The lack of dairy improved things immensely. Now, when I "cheat" and eat dairy, I feel the effects obviously. I gained weight because of this whole foods diet, and struggle with controlling portion sizes as I used to be able to eat anything.
  • However, I'm still sick. No dairy, no eggs, no meat, all whole foods. I drink a green smoothie for breakfast, and eat healthy for lunch and dinner. I exercise. I am still so sick, so often, however.  While I finally have normal-ish bowel movements, they are closer to D than what I imagine they are for other people (they're usually a run-to-the bathroom asap or be sorry, but not pure liquid as they used to be)

I'm so sick of being sick. A really bad doctor who I talked to for 5 minutes said I have IBS. I finally talked to a doctor about my concerns with gluten, but she did not seem to take my concerns seriously in the least, perhaps because I am overweight. I was going to get a test done, but she made it very complicated and by the time I convinced her to schedule it, I lost my health insurance. 

 

I get headaches, stomach aches of all kinds, my immune system just seems to turn off for a week at a time - in which case I get rashes and feel awful, and I just generally feel sick. Just sick. Dizzy, disconnected, sick to my stomach, just sick.

 

I don't now if it is celiac, I am kind of hoping it is, so I will have a cure. Does any of this sound like celiac?

 

I still lack health insurance, however, so I suppose my only choice is to attempt a gluten-free diet to see what happens?

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Hello, and welcome to the board.  It does sound like gluten could be a problem for you.  Most doctors don't know that gluten can make you overweight and automatically dismiss the idea of celiac in someone who isn't skinny.  It actually can make you skinny or overweight.  Sorry you found one of these doctors.  It's no wonder we don't get diagnosed :rolleyes:

 

So unless you can conjure up some insurance from somewhere, or some funds of your own, it looks lke you might have to be content with just eliminating the gluten and seeing what happens.  Do be aware before doing this that if you are gluten intolerant, you will probably never be able to go back to eating gluten without suffering worse than you are already - our response seems to get worse after we have been off gluten (scientifically proven), so if you think you are going to doubt yourself down the line and need the diagnosis now is the time to do it.

 

Before trying the diet, read the newbie 101 thread here http://www.celiac.com/gluten-free/forum/5-celiac-disease-coping-with/ as it has a lot of useful information to get you started.  I hope you are able to figure out if this is your problem and are feeling better soon.

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You can order the tests yourself from an online lab. https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx

 

If it's in your budget, and you can get to a lab draw location I'd try this before going gluten-free. Because if gluten-free works for you, I doubt you'll want to go back on it for testing later.

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    • Newbie: mother to coeliac kids
      If uncooked, he might have difficulty digesting them because eating ANYTHING with a Marsh Stage 4 gut is bound to hurt.    If pickled, he might be reacting to any of the ingrediants even though they could be gluten free.   Often, celiacs develop several food intolerances.  Lactose intolerance is the most common.   I'd recommend keeping a food diary and well-cooked stews, soups for a few days or weeks until his symptoms improve.   Good Luck!  
    • Newbie: mother to coeliac kids
      Research indicates that the celiac disease blood test results do not necessarily correlate with intestinal damage.  My blood tests were "barely positive" yet I had a Marsh Stage 3B (moderate to severe damage).   But that's not important.  Your boy's health is more important!   I can see why he is suffering so much.  The good news is that he should feel well much faster because he is young.  My heart goes out to you and your family!  
    • Newbie: mother to coeliac kids
      Sorry, but I would have to remind you and those who are newbies, that a whole foods, well-cooked diet is probably best.  Avoid all processed foods.  If you have severe intestinal damage, the villi tips are so damaged (or non-existent) that they can not release all the necessary enzymes, etc. to help a person digest and absorb food well or barely!!!  Many celiacs are lactose intolerant until healing occurs (for life if you are genetically lactose intolerant like many Asians, for example).  Many celiacs have developed additional foods intolerances, so it is recommended that you keep a food and symptom journal.   Some folks might be corn intolerant and other might have issues with nightshades (like potatoes).  Others might have issues with even a good veggie like cauliflower.  I personally can not digest cauliflower after a good glutening for some unknown wacky reason.  What I am trying to say, is that everyone has to figure it out on their own because we all have different issues related to celiac damage.  Lactose intolerance is the most common and a good place to start especially with SEVERE intestinal damage like Marsh Stage 4.   
    • need advice
      Welcome!  The only way to find out if you have celiac disease is to get tested.  Here are the tests that your GP can order for you: http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ THIS IS IMPORTANT!  YOU MUST BE CONSUMING GLUTEN DAILY FOR THE BLOOD TESTS TO BE ACCURATE.  THIS ALSO INCLUDES THE ENDOSCOPY (BIOPSIES) WHICH ARE DONE BY A GI.   Anxiety can be a symptom for celiac disease.  Please do some more research so that you can get a proper diagnosis.  Can you go gluten free?  Sure.  That's what my hubby did 15 years ago per the very poor advice of my allergist and his GP.   Twelve years later, I was diagnosed.  Weird, huh?  Anyway, hubby will tell you that I get way more support.  He get's a lot of eye rolling.  Plus, our kid (and my folks and siblings) get screened every few years because I have a diagnosis.  My kid gets tested every couple of years even without symptoms because you can be symptom free and still have celiac disease.  celiac disease is genetic.   It is an autoimmune disorder triggered by gluten.  It is the only autoimmune disorder that is triggered by something known.  If you have RA, MS or Lupus, for example, doctors do not know what actually triggers these other autoimmune disorders.   So, Keep researching.  
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