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Please Help! Do I Have Celiac Disease?
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I am now 20. I was diagnosed with IGA nephropothy (auto-immune kidney disease) about 5 years ago after finding blood in my urine. The doctor never did a biopsy and diagnosed me with this because of the IGA found in my blood. I had eaten 3 wendy's burgers and fries that day, then ran intensely while playing two entire basketball games in a tournament. I have been tested positive for IGA in my blood every time i have visited since then. I have also slowly devoloped redness on my face. In the past two years i have devoloped extreme anxiety and social phobias and my heart periodically goes crazy. I have had chronic sinus infections, chronic fatigue and a light rash on my deltoids. I stumbled upon this site and have been gluten-free for about two weeks. All my anxiety has completely gone away, i dont even feel shy which has never happened to me since i can remember. My sinus infection and my chronic fatigue has been perfect as well which has plagued me for 2 years now. I used to also get periodic hot flashes and haven't had one in two weeks, maybe these were a reaction to eating gluten??? The hotflashes were very embarrasing and noticible because the redness on my face is blotchy and becomes very red in contrast to the rest of my face, it looks like a weird sunburn. It is not very noticible now unless i am exercising. Do I have Celiac disease? If so will the redness go away as well? I have not heard of others devoloping redness, only an acne-type rash which is what i have on my deltoids. I have an appointment with an allergist in two weeks, will they be able to diagnose me. Also, i have been gluten free and right now i have exams and am afraid to eat gluten because i can't afford the brain fog i had before, I thought i was going to fail, but now i am back on track to pass. Won't they just test for IGA, which i have already been tested positive for? Also, will the test be negative because i will have been gluten free for four weeks by then? Any help would be appreciated, thank you.

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ddempse2,

An allergist would be able to run the blood work (which may indeed be negative since you have been gluten-free for a significant time), but for a "conventional" diagnosis you would need to see a gastroenterologist. You might also want to check out Enterolab, which offers a smple, non-invasive stool panel for celiac disease. If money is a concern (as it is for me right now), the single test for celiac disease-related antibodies costs $99 (plus shipping and handling, I think). It might be worth saving the money for, since you DO NOT have to be eating gluten to get accurate results!

Many of your symptoms sound so familiar to me: anxiety, "shyness," chronic nasal stuffiness, chronic fatigue, acne on the shoulders, facial redness (rosacea) all the time, and generalized blotchiness under stress. These have all improved dramatically since I went gluten-free (and casein-free as well, since I also react to dairy products) last Halloween.

My opinion is that since you seem to have isolated the (or at least a) cause of your ongoing troubles, stay gluten-free. At the very least, put off any gluten challenge (which I personally consider barbaric) until after your exams are over!

Good luck, and take care!

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Thank you very much for your reply, it was helpful. I will make an appointment with an astroenterologist for further diagnose.

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    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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