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Brownie88

Frustrated Of Waiting!

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Hi all.

I am a 23 year old female from Australia. I never thought I would be dealing with the possibility of coeliac (celiac) disease and am currently awaiting the results of my biospy which is taking forever!!! I just want to know how long it takes to get your results? I have been waiting for three weeks and am waiting to hear back from the doctor's office today as to when my appointment is (I thought it was today but it is not :( ) I want to know if anyone thinks I will get positive results. What happens if it is negative? And if you think my symptoms describe coeliac?

It all started last November when my partner and I made a big move across the country (about 37km away from home). I was probably eating the most unhealthy foods I have ever had as we drove for four days and then the unpacking, I was eating lots of takeaway and gluten foods. A few weeks after arrvial I began to feel nauseous, and sufferred from stomach cramps, fatigue, constipation and then later diarrhea. And I improved my diet, opting for healthier foods but was still sick.

My first visit to the doctor was in about Feb. and my doctor attempted to diagnose me with IBS and gave my some horrible medication that made me feel like the walking dead. So I went back weeks later and he decided to test me for Coeliac. I must say I was completely shocked (and so was he) that the results were positive. Especially since my regular diet consists of less gluten than the average person as I eat little bread and always choose rice over pasta as that is my preference.

I booked in for my biopsy in April but had to cancel due to my asthma, which has never really been problem, got really bad that I was coughing way to much to undergo the procedure. I was relieved though as my surgeon was very rude and impatient to the point of inappropriate. Also, he told me that my blood results were low so he did not think I was coeliac but still ordered a biopsy. I then waited till I felt better and my asthma treatment was working, I booked with a new doctor, knowing it would take longer - this was about 3 months later.

I had cut down on gluten for about 3 weeks (which was wrong but I was over it) and as soon as I was booked in for my procedure, I decided to begin the horrid, "gluten challenge" - approx 6 weeks leading up to the procedure. Two days before my procedure I was the sickest I have been, stomach cramps, nauseous, diarrhea - so I didn't eat that day. I also experienced severe pain in my knees - they were just aching.

I had two biopsies taken from my stomach and after the procedure I continued eating gluten for 5 days and it was unbearable. My doctor hadn't told me whether I could be gluten-free and was worried I might need more tests. So I did some research and saw others had gone gluten-free straight after, so I did. Three weeks later, I am feeling much better... I do not feel completely recovered but I feel like I have started the journey to full recovery.

I am worried I have not done enough to get a positive result. I just want answers and am hoping I can get a diagnosis and move on to live a healthy life again.

Also, I think what triggered the Coeliac is that I visited Malaysia and ended up with Traveller's Diarrhea and last year visited Thailand only to get ill over there too.

I feel like I have been waiting forever and am scared that I will get a negative result even though I feel like a am coeliac.

Thanks for reading my essay lol. Sorry it is so long.

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Ok, first of all, you have celiac disease. Your biopsy may or may not show it, but it doesn't matter. Positive bloodwork and a positive response to the gluten-free diet is sufficient to dx yourself. Biopsies are always hit and miss. Sometimes they hit the right spot, sometimes they don't. Unless your GI took multiple (as in 6+ samples) from the duodenal bulb (not the stomach) then chances are good he missed it. Honestly, even weakly positive bloods are a better indication. False positive celiac bloods are almost non-existant. They just don't happen. Its like being "a little bit pregnant." Your travels and diet change probably triggered the disease, and since it was a recent development, the antibody levels would not have had time to get very high. The good news is you probably caught this disease in the beginning, before it devastated your gut. Which is another reason your biopsy may be negative- you likely don't have severe damage yet. That is a good thing.

So, my advice to you is decide you are celiac, accept it, and continue on the path to good health. And whenever your doc gets around to sending you a biopsy report, if it confirms this.comm tuck it away in your medical records. If it doesn't, toss it in the trash and disregard it. Your body told you the truth already, whether the doctor heard it or not.

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Thanks for your reply. It makes me feel better about my decision to become gluten-free.

I do hope for the positive diagnosis though (maybe more for other people to recognise it), if it is negative am I still able to class myself as Celiac because of the positive blood test?

Because you cannot be a little bit Celiac.

Yeah I will absolutely tear that the biopsy report to pieces if it comes out negative I think!

That is if I ever get to see it.

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oops just realised I wrote 37km away from home instead of 37 hours lol... It is actually about 3,000km away from home lol my bad.

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I can relate to waiting for results. I didn't want to have celiac, but I was hoping I would, so that I could do something about my problems. I received my result by e-mail. I stared at the monitor and caught my breath when it finally arrived.

I hoping your results will be accurate and that you will receive them soon.

Diana

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Yes, you can call yourself celiac, because you are. And you do not need to offer an explanation to friends and family to justify it. Just say "I have celiac." If the biopsy is negative, no need to disclose that. People will just second guess your decision and constantly try to talk you into eating gluten. Spare yourself that scenario. You ARE celiac. Biopsies are not the be all and end all in diagnosis.

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oops just realised I wrote 37km away from home instead of 37 hours lol... It is actually about 3,000km away from home lol my bad.

I thought you were just a slow driver ;)

Were you under a lot of stress before and during the move? I think stress can trigger a celiac response if you are genetically predisposed to it. That could have been what set you off.

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I can relate to waiting for results. I didn't want to have celiac, but I was hoping I would, so that I could do something about my problems. I received my result by e-mail. I stared at the monitor and caught my breath when it finally arrived.

I hoping your results will be accurate and that you will receive them soon.

Diana

Yeah I feel the same way.. I never would have wanted it but if it means being healthy again then I am more than happy to say goodbye to gluten. Thanks Diana.

Yes, you can call yourself celiac, because you are. And you do not need to offer an explanation to friends and family to justify it. Just say "I have celiac." If the biopsy is negative, no need to disclose that. People will just second guess your decision and constantly try to talk you into eating gluten. Spare yourself that scenario. You ARE celiac. Biopsies are not the be all and end all in diagnosis.

Ok I have Celiac, from now on that is what I am.

I will not let myself be "food bullied", will not stop it from getting on my nerves though. I know a lot of people struggle with this and other people understanding the consequences of celiacs eating gluten.

Thanks MitziG.

I thought you were just a slow driver ;)

Were you under a lot of stress before and during the move? I think stress can trigger a celiac response if you are genetically predisposed to it. That could have been what set you off.

Haha.. nah not that slow.

Yes it was very stressful. We moved because my partner got a job. I had to leave my job of 7 years and had some interviews set up but nothing in stone. I had never been to the town we moved to, we didn't know anyone and the 4 day drive was a stress and a half! Lots of car issues.

But you are probably right. I was very stressed at the time it started and I do suffer from anxiety.

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Hi Everyone, I wanted to get back to you with my results but have been travelling and just haven't gotten around to it. My endoscopy results came back positive and I feel sooo relieved to say with total certainity I am celiac. I have been gluten free for about 10 weeks and feel heaps better. Thanks for your help :)

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Thanks for reporting back. I am glad for a definative diagnosis. Sorry that you have been incovenienced by this. Hopefull, you are now recovering well.

Diana

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I'm glad your results were clear - it does alleviate continued frustration from lingering questions .

Outstanding news that you are already feeling better - thanks for sharing :)

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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