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.

Am I Celiac Or Is This Just A Severe Gluten Allergy?
0

4 posts in this topic

Hi,

I am very upset and apologise in advance for the length and detail of this post. I live in Perth, Australia, and believe I have discovered more information on celiac.com relating to gluten health issues than any doctor has ever been able to provide.

Bit of background, I am 21 and have always suffered from hay fever, worse than anyone in my family. I get bruised easily, my right knee is totally stuffed and both knees crack when I bend them. I love to run, although my knees (and occasionally hips) set me short. My hair has always been thin and dull, and apparenly I have "big glands/lymph nodes" in my neck. I have always been thinner than my two siblings (though my BMI is normal), however I have a pot belly. We have history of diabetes, high blood pressure, vertigo, chronic migraines and mild gluten intolerance in the family. No one in my family has been for a colonoscopy, endoscopy, or thoroughly tested for celiacs.

In March 2009 I began to experience very sudden, short and uncomfortable stabbing pains in my intestines/stomach region - as if something sharp just wriggled around to 'ease through'. These pains would last for a couple of seconds, causing me to double over in pain. Occasionally they would last longer than a few seconds, like a dull cramp that eventually reached a 'stab'. Pregnancy was out of the question. I couldn't eat anything and lost 15 kg. I had diarrhea, a constant fever, cramps - the doctor put me on gastro medication and didn't give me a blood test. I woke in the middle of the night with a temperature of 42.6 C - my mother took me to a different doctor and demanded a blood test. My white blood cell count was astronomical - apparently I had been suffering appendicitis for the past month, and since the doctors were unable to locate my appendix on the scan due to accumulation of fluid/gas in my intestines, we had to assume the fever resulted after it ruptured. I had key hole surgery because the surgeons didn't know what was going on. Has anyone with celiacs experienced these symptoms???

For the majority of 2010 I didn't eat very much gluten. I was on antibiotics and painkillers. I was never hungry and after losing 15 kg I preferred to eat 'lighter' types of food, such as salads and fruit. However, I ate crumbed calamari and a variety of sauces. Life was beginning to return to normal when I experienced a very unsightly rash on the right side of my face and body. I was also experiencing depression, crying for no reason, dandruff and mild intestinal pains (doctors said it was abdominal adhesions from my operation, undetectable on ultrasounds, couple of years to form, can lead to blockages, food intolerance, stomach cancer, all that jazz). I was put on acne medication. I requested another blood test - coeliac said 'negative', however by that stage I was not consuming obvious forms of gluten (bread, pasta, pizza) because I preferred to eat light.

In 2011 I started a food diary that proved eating products containing gluten caused stomach aches, dizziness, tiredness, depression, irritability and headaches.

I decided to avoid gluten completely in 2012. I have been paleo since February and have been feeling absolutely fantastic. I became extremely fit and my appetite diminished. My hair looks very shiny, my complexion is better than usual and people think I'm on drugs because I'm so happy and glowing. I can go all night without sleep and bounce back the following day, no troubles, all I want to do is exercise.

However, after consuming corn chips/a teaspoon of unusual dip at a gluten-free restaurant, my entire face broke out in a rash - red cheeks, forehead, swollen jowels. I looked a bit like an orange hamster. Fatigue set in, and I was in an irritable and depressed mood. Just as things were returning to normal, I consumed a large amount of gluten-free cakes during a family gathering, and probably corn/dairy products. The pain in my stomach was very dull, but it was there. I was constipated. After a couple of days of mild stomach discomfort, it skyrocketed. I could feel something snaking (almost sharp and flipping, like a cut) through my intestines - very sore and tender to touch, the pain was concentrated on the right side across from my belly button and under my ribs. It slowly travelled around to the left side, then moved under my belly button. I was sweating, couldn't breathe properly, irritable, sleepy, lost motivation, wanted to eat everything I could see and puke up my guts at the same time. 3 days stuck on the toilet. I had bladder problems, urinating constantly, it felt like a combination of a UTI and thrush. I wasn't digesting anything - it just went straight through me.

That was nearly 2 weeks ago. I'm slowly returning to normal, although I feel very depressed, not chatty, irritable, mild pain is present roughly 15cm to the right of my bellybutton and my pot belly is back. I can't exercise or focus on studying for my exams. Needless to say, I'm back on paleo.

Has anyone had a similar experience?? Do I have coeliac disease or a gluten allergy? Will a colonoscopy or endoscopy show results, even if I'm off gluten?

Any help is greatly appreciated and thank you so much for taking the time to share in my journey.

Edited by emwa
0

Share this post


Link to post
Share on other sites


Has anyone had a similar experience?? Do I have coeliac disease or a gluten allergy? Will a colonoscopy or endoscopy show results, even if I'm off gluten?

Any help is greatly appreciated and thank you so much for taking the time to share in my journey.

I can't say for certain that you have celiac's, but just by cutting gluten out of your diet and feeling that much better, I'm willing to bet you have a moderate to severe intolerance of it.

When I had a celiac panel done (bloodwork), I was told not to go off gluten before so that my test wouldn't read back as a false negative. You would probably have to go back to eating gluten for a certain amount of time in order to get a correct reading, unless you do an Enterolab test https://www.enterolab.com/default.aspx

I'm very familiar with those travelling stabbing pains. I find I have them after eating a particularly large meal, but they go away after that meal has...left me.

Good luck!

0

Share this post


Link to post
Share on other sites

Hello! Our family is in Perth, and we love how much easier it has been for us to navigate our coeliac / gluten allergy issues here compared to our experiences in the States. My kids and myself have both coeliac and gluten allergy issues, so it can be difficult to distinguish between the two for some. We have been advised by our doctors to maintain our strictly gluten free diet and to not pursue any further gluten challenges. Our primary healthcare has been primarily investigated and managed in the States, and our WA doctors have been respectful of our medical condition. We have to be very strict in managing our condition related to gluten, but Australia has made that easier with abundances of farmer markets where we can talk with farmers about their foods at market, the wonderful gluten free labelling regulations here, and a wider awareness for food allergies - both management and response to reactions.

During our investigative process trying to understand our gluten allergy / complications from coeliac, we did investigate a host of other potential issues, including parasites, bacterial infections and nutritional deficiencies, and working with gluten savvy doctors helped. Ultimately for our family the best results come from a very strict view of eliminating gluten exposures in any form as much as possible.

Good luck, and I hope you find what works well for you soon. We have been greatly rewarded by focusing on gluten hypersensitivity issues. Not breathing properly is one of the primary reasons that we have been advised to discontinue any further challenges. Each of us has a different allergy action plan based on our individual circumastances that result from incidental gluten exposure. We utilised both internal medicine, gastroenterologist and allergists to help develop our protocols and allergy plans. And I would appreciate hearing about your doctor experiences here in Perth. The coeliac society here indicated that coeliac / gluten allergy doctors are difficult to find, but I keep hoping to find at least one!

0

Share this post


Link to post
Share on other sites

I am wrestling with the same question. I made the mistake of undergoing bloodwork and a endoscopy after 13 months gluten free with only an 8 day gluten challenge. So of course my tests were all normal. But the 8 days of eating gluten was brutal, and I'm not sure I could have lasted much longer in order to get an accurate test.

It has been 2 weeks since my gluten challenge, and I am also back to paleo eating and mostly feeling much better. I wish I had a concrete diagnosis. But ultimately, I know I will never eat gluten again regardless, so the diagnosis probably wouldn't change my lifestyle too much anyway.

Good luck! I hope you can find the answers you are looking for.

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
      102,719
    • Total Posts
      914,562
  • Topics

  • Posts

    • Swanson Chicken In A Can
      The original post from here is 8 years old and the product information is likely outdated.  I would contact manufacturer on any info over a year or so old, but even then things can change.
    • Anyone done commercial testing?
      Have you subscribed to gluten free watchdog? They have some great test results and info on what tests they do and why.  If you want specific items to be tested and will fund it, you may contact them to see if you can help the community as a whole.
    • Help understanding test results??
      I am a 20 year old female. I recently had some blood work done to test for celiac disease.  The ref. range for all of the following is 0 -- 14.9 U/mL: Tissue Transglutaminase AB,IGA = <0.5 Tissue Transglutaminase AB,IGG= <0.8 Deaminated Gliadin PEP IGA= 1.3 Deamninates Gliadin PEP IGG= 242.9  Yes I have a follow up appointment with a gastroenterologist because the last panel was high. I am just hoping that someone can explain the results in a way that is easier for me to understand. Any input would be greatly appreciated!
    • I got WELL!!
      manasota, When I first was diagnosed with Celaic disease I was beginning to have Thyroid problems.  But I began studying up fortifying myself with knowledge which led me to Chris Kresser's site where he has a free book on Thyroid disorders it might be worth downloading it and reading it (I have not) but read some of his blog posts. I think of it like one of my fellow blogger's I follow Susan Hughes Healthy by Nature quoting when she says "I find the human body to be pretty amazing. It is capable of healing itself when given the proper tools to do so. These “tools” include nutrients, thoughts, rest, among other things – all dependent, to a degree, on the unique needs of the individual. Many times proof of this incredible healing capacity of the body is backed only by anecdotal evidence, which, no matter how valid, lacks the respect that formal research supporting this notion would receive." With that in mind consider what I have learned on my journey is all I ask. I will share what has made me feel better. Chris Kresser (I don't remember why) says selenium first then Iodine for thyroid problems and a lot of these fatigue issues can be tied to your thyroid. Having said that my thyroid is better by that I mean I no longer need meds for my thyroid and my chronic fatigue is better. I find two or three brazil nuts a day will give you most of the selenium your thyrorid needs.  Find a Kelp supplement for a good source of Iodine or just start putting idoine (betadine) from the drug store on your legs each night until it stains you in the morning then you know your body has enough Iodine since it readily absorbed when it lingers on the skin for more than 12 hours you have enough iodine. For the Chronic Fatigue I can not over emphasize Magnesium CITRATE in divided doses 3 to 4 times (with each meal and at bed time).  Great book on the subject called "the Magnesium Miracle".  Make sure it is a 100% Citrate though or your body will have time absorbing it. Your energy will really perk up.  Muscle cramps will improve.  Restful dreams (if you can't remember when you last dreamed) will come vividly. Search for the posterboy on this site if you want to read all my posts and see my profile if you want to know what other vitamin's or minerals I have taken to help me "get well". Good luck on your journey.  Read the topic "Still Sick 1 year after diagnosis" for  a summary of other things I have done by the poster ryan7194. Provided here for easy reference **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your medical regimen. 2 Timothy 2:7 and 2 Cor 1: 3,4 Posterboy,
    • Stomach sore from eating gluten free foods?
      I agree.  Since the cookie was gluten free, your body was reacting to something else.  I also think it's important to not self-diagnose/test because even if you feel better without gluten, you don't know if you are celiac or just have an intolerance to gluten and/or wheat. It's better to go through the testing. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      59,768
    • Most Online
      1,763

    Newest Member
    mski
    Joined