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

4 posts in this topic


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 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

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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

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!


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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!


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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.


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    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
    • Yes, that list I posted includes stuff to look out for in your cosmetics as well, I think. Spices get contaminated often depending on brands, sources, and packaging plants, you have to find brands that are certified, I find Spicely Orangics works here. Supplement wise I am on a ton. I take combinations of Liquid Health Brand, Stress & Energy and Neurologic Support for B-Vitamins, I take Doctors Best Chelated Powdered Magnesium. I drink a bunch of almond milk and eat a lot of nuts, seeds, green leafy veggies, and a huge viarity of foods always having a mix to balance out my needs in vitamins (I studied alot an worked with a dietician to learn what contains what and find my balance). I found a IBS targeted probitotic from jarrow seems to work best with me and no bloat. List of other supplements if you want but with celiacs different people can get different deficiencies and you should probably talk to a dietician and see about having your own regiment built up. I just listed the common ones. I was thinking about this later on and after I got off the stuff for awhile I found myself randomly vomiting from some foods, none of the brain fog, numbness, Just throwing up. Ended up I developed intolerance to certain foods like egg yolks, soy, and a few others things. I also developed allergies to corn where I would just get sores in my mouth and digestive tact and run 99-102F Fevers when I ate anything contaminated with it. And a peanut allergy that caused me to distend and swell throwing up for hours and getting a rash later on. My different reactions to different foods made my dietician laugh at how odd my body is (we both did after talking for awhile) and my doctors found it interesting and kept on wanting to run more test.
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