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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Completely Desperate. Do I Have Celiac Disease?
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5 posts in this topic

Hello everyone,

I am completely new here and ended up here by searching the internet for wheat allergy symptoms.

I am so desperate. I am 26 now and have no been able to live the last 9 years of my life and no one can tell me what's wrong with me.

I definitely have constant bloating and gas, I get dizzy and sometimes throw up from it, although I haven't in a while, I always feel like I am clogged up with mucus (sinus, throat, etc), I am always super thirsty, I have troubles going to the bathroom (I go once a day), I get SVTs and other occasional heartracing, I sooooo often feel like I cannot breathe right, like my throat is either closing, I can't breathe deep enough, etc, and by now I also have some candida signs.
 

My biggest problem is this: When I go on an elimination diet I feel worse. I cut out gluten and dairy and unnatural foods. I eat salads, drink green smoothies, have brown rice pasta (which oddly enough also makes me feel less than great although it's gluten free), but when I do all this I just crave sugar and cheese and feel terrible. I MAY feel better after eating foods that I am trying to stay away from, but they do not always alleviate the discomforts.

I go back and forth from eating wheat and gluten to not doing it. My diet has been focused on whole grains, healthy fats, no milk (but cheese and butter), no meat, a little fish, legumes, etc, for a few years now, and is generally healthy, yet I never achieve health. I have a terrible time losing weight and I am terribly fatigued most of the time. Taking good probiotics and digestive enzymes makes things a little better, but it doesn't cut it.

 

The worst part is that when I eat better I feel terrible, and sadly as a single mom of a toddler I cannot afford to get SVTs (my heart starts racing, and if I cannot break it I have to go to the emergency room. I always feel ill after), faint, have trouble breathing, have headaches, etc. But I also don't feel good at all even when I am eating these foods, just in a different way.

 

I just don't know what to do anymore. When I was pregnant I always felt like I was suffocating and the doctors only told me 'oh that's normal', except that I know it wasn't... it was like my symptoms, but worse. I have had many tests done, NOT been diagnosed with asthma or thyroid issues, or even candida, but I am pretty sure that last one is part of my problem.
I had allergy tests done and came back as allergic to nothing. Since then I have learned more about testing and found out that the tests I did would not have detected Celiac disease, but my doctors just tell me I probably don't have it.
 

I am having a really hard time just taking care of myself. I feel terrible for my child. I just want the best for him, but I am always tired and SUPER easily stressed. It's like I am always on edge. I am so desperate. Please, has anyone else experienced these things and gotten rid of them?
I would really appreciate any advice!

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I am sorry you have suffered like this.  I don't know why you are going through this.  I do know that my situation seemed very hopeless.  My heart had big problems, I got short of breath easily on occasions, but now I am much better.  There is hope and just that you are looking for a solution is a good thing.  Gluten certainly does cause bloating and fatigue, I know.  If you have a problem with it, switching back and forth between eating it and not eating it could cause it to seem worse.

 

One thing I have noticed about using natural means such as diet and supplements; one often feels somewhat worse, before they get better.  If you can, have the tests for celiac.  You may have that, and if you find out you do, you can follow the diet.  That would be a step you could take that would start you toward recovery.

 

I recommend nutrient dense foods such as fish and meat.  I say this, since meats and high protein foods are some of my best foods.  I ventured toward vegetarian when I really got profoundly sick.

 

Get Well SOON ******

 

Diana

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Hi Tescup,

 

I suggest you have your vitamin and mineral levels tested, and also have the celiac panel done.  Do all this before going off gluten.  Then go on the gluten-free diet for 3 to 6 months 100%.  No cheating.  And see if you have improvement in your symptoms.  The gluten-free diet is not something you start and stop, you have to stick with it to get the benefits.  If you have celiac disease the immune system makes antibodies that attack your intestines and prevent absorption of nutrients.  That can cause fatigue and many other symptoms.  If your doctor won't test you tell him you'll find one who will.  Regardless of the test results, try the gluten-free diet anyway.  There are some gluten related conditions that they have no standard tests for right now, such as non-celiac wheat sensitivity.  There are probably a lot more people with non-testable gluten issues than there are with celiac disease.  Lack of tests doesn't make it less serious.

 

As you already figured out, celiac disease is not an allergy.  But people can have both allergies and celiac disease, it is good to be tested for both.

 

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

Non-celiac wheat sensitivity article
http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
http://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

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If I were in your shoes I'd do the following: get tested for celiac or go gluten free for 6 months plus (make sure it's 100% gluten free no cheating), I'd also get candida blood test and frankly go off carbs,all sugars,starches, yeast ..and if you crave sugar etc then that's a good sign its candida.Also you will feel ten times worse because your herxing (candida die off) which over loads your body with toxins.Long story short go caveman diet,take probiotics and digestive enzymes and Keep at it hardcore NO CHEATING or frankly don't bother .In final have you vitamin/minerals checked for deficiency .

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what you described is classic withdrawal.  Do you have a support system for the toddler?  If not, I would suggest a gradual diet change, you will feel miserable, just less so, but over a longer period of time.  This is not the ideal!  good luck

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