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

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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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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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