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Completely Desperate. Do I Have Celiac Disease?
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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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    • No I'm in the UK, from what I've been told that's a good thing for gluten labeling and standards compliance. What you and everyone else on here says makes me sense than what the doctors are saying (a confused message at best is what they're giving me, each one with a slightly different version of it). My referral letter is in the post so on theory appointment may not be that far away. I have a load of my favourite Quorn stuff (non-gluten-free version) in the freezer so perhaps using that up may be a good way to proceed for now. I'm out at the moment and torn whether to try chips from a café, in the strict gluten-free future would probably be a no-no but in current situation probably not so bad...
    • I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
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