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

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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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    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
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