Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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.

Completely Desperate. Do I Have Celiac Disease?
0

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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 .

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,348
    • Total Posts
      917,421
  • Topics

  • Posts

    • Testing After Celiac Disease if IgA deficient
      If you have Celiac Disease, and you are IgA deficient, what do they check on your labs to make sure you are not being "glutened"?
    • Weird Reaction
      Hi again Richie, A lot of coeliacs have a problem with coffee, maybe you do too. It could explain the shakes you describe. I am sensitive to coffee, and haven't touched caffeine since last summer. (The detox lasted for 10 days and it wasn't pleasant, so if you ever give it up, do it gradually).  Sometimes when you're intolerant to something, when you have it, it makes you feel 'better' but it doesn't last and usually end up worse, it's like a drug - and in the case of caffeine it is. I also take a daily probiotic (gluten free and dairy free etc)., which is good for healing the gut.
    • Weird Reaction
      Cristiana and Flowerqueen, I haven't been officially diagnosed as Celiac but I had a DNA test in March 2015 which revealed I had the Celiac gene on both sides so it was advised that I have a test to see if I did have it. I didn't but I went off gluten immediately and haven't "knowingly" eaten it since. Before the DNA test I didn't have the nausea and trembling type feelings that I do now but I occasionally got the shortness of breath which I used to put down to being a smoker. (I quit almost 16 years ago) Anyway, this morning I woke with the nausea feeling, the trembling, loss of appetite, feeling of doom again but it happens so intermittently. I do have some unavoidable stress in my life all of a sudden so maybe it's all connected some how. But on the plus side my bowel movements have returned to normal and I go often especially after waking and having coffee. (Oh, and Cristiana don't worry about tmi with me. You would have to try pretty hard to offend me and nobody has done it yet. haha) I always think the worse to. The internet and Google are great but information overload becomes a real possibility creating some frightening scenarios. It's just interesting that the coffee with the MCT Oil (Brain Octane is the actual name) and butter makes me start feeling better and the nausea, trembling, anxiety seem to be extinguished by it but coffee with low fat milk doesn't although I do get more energy from it. I did read somewhere that MCT Oil was good for gut health though and if I had to describe it it would be like it just smooths over all the bad stuff with a nice soft lining.  It was recommended in my DNA test that I have more fats in my diet and low processed foods but I occasionally have gluten-free biscuits, gluten-free ice-cream (my true weakness) and gluten-free weet-bix. I've checked most of these items ingredients and they are pretty good. There is a lot of gluten free rubbish out there though which I completely avoid. Thanks GFinDC for your reply. I was going to speak to my Naturopath when I see her about Immune Health. My plan usually involves the Liver Tonic I mentioned above and heavy on the L-Glutamine which, apparently, is supposed to be excellent for gastrointestinal health but I'm not going to supplement with anything just yet until I get my blood work done and see if it reveals any deficiencies. I'm suspecting Iron though. Because I've had recent tests all coming back good I'm thinking a possible scenario would be a die-off effect I've heard of where all the bad bacteria have been killed off but your body can't rid itself of them quick enough so you actually feel or get worse before you get better. That's where the detox strategy comes in and I'm assuming replacing them with Good Bacteria via Probiotics. Again, this is what I have read in the past but it does seem to make sense in some cases. I do feel better in having found these forums though.  
    • Daughter with celiac- need test result help
      You are doing well.  We didn't have a "normal" tTG for 6 years and were also very strict.  Kiddo was dx with hypothyroid as well and tTG fell a lot after getting on meds for that but still didn't normalize.  Finally cam down within the last 6 months (this after a trip to THE Celiac Dr. several years ago).  I wish we had done a DGP much earlier and I had pushed for that sooner.  I would start there and see what happens.     Sounds like you're doing everything right though. Sometimes it just takes time. 
    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,484
    • Most Online
      1,763

    Newest Member
    KKJ
    Joined