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wmertens Joined: 22 Jul 2008 Posts: 3	Posted: Wed Jul 30, 2008 12:27 pm    Post subject: Tired & _gaining_ weight ??? Hi everyone, I'm Wout, live in Belgium, and am 33 years old. Over the past few years I've gotten "tired spells", where I suddenly become very tired and out of breath. I went to a doctor and we found I had low Vit D and iron. I got put on meds to remedy those and my levels got better but I didn't feel better. Last year in August I discovered that it might be because of gluten (read about it on the internet) and I immediately went on a gluten free diet, without getting a diagnosis. (stupid? I was tired of the doctors not finding anything...) I started feeling much better after a week, and lost 6kg (13 pounds) over a month or so, after which I stabilized. Unfortunatly, this blissful state lasted only until a trip in April where I ingested a fair amount of hidden gluten. After I came back I had the tired spells again and they kept up even though I was back on gluten-free. I went to see a doctor this time and a blood test (IgA and IgG) was negative. The doctor then told me I should go on a gluten diet so that I could get a colonoscopy. The colonoscopy is coming up next month and I don't look forward to it. I've been eating gluten for 2 months now and I feel awful, the tiredness is back in force (it comes and goes) and I gained my 6kg back. The tiredness seems to be the main symptom. It can last for the whole day and sometimes I become a little bit incoherent, it's harder to concentrate and I feel a little shaky. Other times though, I feel perfectly fine. Is there anyone else that has these symptoms? Is it logical for me to gain weight? Thanks for reading, Wout.
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donald Joined: 20 Jun 2008 Posts: 12 Location: san antonio tx	Posted: Wed Jul 30, 2008 8:22 pm    Post subject: similar symptoms Hi Wout, my situation was similar to yours. Amongst all the odd symptoms, I had the extreme fatigue, and everytime I ate gluten my weight would bounce up. I also went on an elimination diet before getting tested, but I have been sick for 17 years, tested for everything, except gluten intolerance, and nothing has ever been found. Since going gluten free 3 months ago, I have lost 10-12 pounds, and I feel wonderful. I was offered testing but declined, didn't want to go back on gluten.
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zip2play Joined: 24 Jan 2006 Posts: 234	Posted: Thu Jul 31, 2008 7:30 am    Post subject: Celiacs are not always SKINNY and emaciated. I am proof of that. If you feel better off gluten I say, stay off gluten. Not sure the colonoscopy will show much, maybe someone more knowledgeable can tell you that. Monica
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cruelshoes Joined: 23 Sep 2005 Posts: 2550 Location: Washington State	Posted: Thu Jul 31, 2008 9:48 am    Post subject: Studies have shown that it is actually the minority of celiacs that are underweight, and/or present with classical symptoms (diarrhea and weight loss). Many surmise that weight gain is caused by the body's attempt to compensate for nutrients lost to malabsorption. The body goes into starvation mode and tries to hold on to everything. Brain fog and fatigue are very common symptoms of celiac. You do need to be eating agluten diet in order to have the biopsy show accurate results. If you go GF now, you risk a false negative. Additionally, a colonoscopy (a tube in the rear end) is not a diagnostic tool for celiac. The proper test is an endoscopy (a tube through the mouth). you might want to follow up with your doctor to see if the proper tests have been ordered. _________________ -Colleen Dx 8/05 via bloodwork/biopsy 10-YO son Dx 11/05 via bloodwork/biopsy Daughters (12 and 2) have neg. bloodwork A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt
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wmertens Joined: 22 Jul 2008 Posts: 3	Posted: Thu Jul 31, 2008 11:54 am    Post subject: Thank you all for these replies! It's such a relief to know I'm not alone! I am now armed with more knowledge and I shall make sure my doctor is aware of these facts. I might have to do some doctor-shopping
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wmertens Joined: 22 Jul 2008 Posts: 3	Posted: Mon Aug 04, 2008 4:14 am    Post subject: cruelshoes wrote: You do need to be eating agluten diet in order to have the biopsy show accurate results. If you go GF now, you risk a false negative. Additionally, a colonoscopy (a tube in the rear end) is not a diagnostic tool for celiac. The proper test is an endoscopy (a tube through the mouth). you might want to follow up with your doctor to see if the proper tests have been ordered. So I asked my doctor about it and he said he wanted to get a biopsy from the last part of the small intestine because that's where most of the absorption happens and if it doesn't turn out to be gluten it might point to something else. Does that sound right to you? Would you happen to know where I can read up on proper testing? Many thanks!
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cruelshoes Joined: 23 Sep 2005 Posts: 2550 Location: Washington State	Posted: Mon Aug 04, 2008 9:16 am    Post subject: Here is some information that may be of use to you. Testing may be different in Belgium, but I'm not sure how because all of our intestines are routed the same way. I have never heard of colonoscopy being the proper test for celiac disease. http://en.wikipedia.org/wiki/Coeliac_disease#Endoscopy Quote: An upper endoscopy with biopsy of the duodenum (beyond the duodenal bulb) or jejunum is performed. It is important for the physician to obtain multiple samples (four to eight) from the duodenum. Not all areas may be equally affected; if biopsies are taken from healthy bowel tissue, the result would be a false negative.[6] http://celiacdisease.net/diagnosis-endoscopic-biopsy- Quote: How is Celiac Disease Diagnosed? If antibody tests and symptoms suggest celiac disease, the physician needs to establish the diagnosis by obtaining tiny pieces of tissue from the upper small intestine to check for damage to the villi. This is done in a procedure called a biopsy: the physician eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine, and then takes samples of the tissue using instruments passed through the endoscope. Biopsy of the small intestine is the only way to diagnose celiac disease. What is the endoscopic biopsy? This procedure is always performed by a gastroenterologist, and is conducted most often in an outpatient surgical suite. The procedure lasts less than ½ an hour, and for adults, sedation and local anesthesia are used. The procedure involves a long, thin tube with a small camera on the end. The physician will insert the tube into the patient's mouth, down the throat and into the esophagus. When the tube reaches the patient's stomach the physician finds the entryway into the small intestine (the duodenum) and inserts the tube there. As the tube is making its way to the small intestine, the camera on the end sends a video image to a monitor in the procedure room. On the monitor the physician can visually assess any gastritis, or other inflammation (such as acid reflux). In the small intestine, the physician examines the entire length of the duodenum, the area affected by celiac disease. However, in many celiac patients, their duodenum--at the time of biopsy-- appears normal. This is why the surgical removal of tissue is so important, for it is only under a microscope that a definitive diagnosis of celiac disease can be made. At this point, the physician will insert a tiny surgical instrument through the tube. It reaches the small intestine, and working in concert with a surgical nurse, the physician will biopsy 5-6 areas of the small intestine. The biopsy is taken by grasping very small sections of tissue and slicing them gently away from the walls of the intestine. Multiple tissue samples are also vital to an accurate diagnosis-celiac disease can cause patchy lesions in the duodenum which can be missed if only one or two samples are taken. Results of the biopsy will confirm if a patient has celiac disease. There are no nerve endings in the intestine, so this procedure does not cause pain in the gut. Afterwards, some patients experience a sore throat, but most have no memory of the procedure. _________________ -Colleen Dx 8/05 via bloodwork/biopsy 10-YO son Dx 11/05 via bloodwork/biopsy Daughters (12 and 2) have neg. bloodwork A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt
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bob02 Joined: 01 Sep 2008 Posts: 18	Posted: Wed Sep 03, 2008 7:43 pm    Post subject: Clever Biopsy! Hi there I need to ask somthng in response to your following quote. "An upper endoscopy with biopsy of the duodenum (beyond the duodenal bulb) or jejunum is performed." a) Is it better to take samples from Jejunum alone? b) What's dudenal bulb? bob02 Pakiatan
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cultureslayer Joined: 07 Apr 2006 Posts: 763 Location: NC	Posted: Wed Sep 03, 2008 9:29 pm    Post subject: I have problems concentrating, short term memory issues (go downstairs and forget why, I am sure the cashiers are the stores I visit think I am insane because I'll always forget half of what I need and am walking back and forth across the store for a while). Turns out my issues are caused by lyme disease (determined by western blot) but Europe has different strains of lyme so I'm not sure how the symptoms of chronic infection differ. Similar symptoms can also be caused by chronic viral infection. Sadly there's no known cure (thought that's what I had for a while). _________________ Lauren Pain is inevitable; suffering is optional.
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