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Everything posted by corrinne

  1. I am wondering is anyone of you notice a relation between lung and GI issues. I tend to alternate. After a recent bout of flu/bronchitis/pneumonia (with a bit of Asthma on the side) but no GI issues, i finally got all that better, and GI issues returned. Are these different ways to manifest the illness? I am very curious about how these things relate, as I've been plagued by both (but usually not at the same time) my whole life. But maybe it just like if your foot is sore and you get whacked on the head you don't notice your foot anymore?
  2. I've always been told that my low cholesterol (under 130 when 160 is normal) is great. "You'll live forever!" I have heard from more than one doc also heard: "you have the blood work of an 19 year old athlete" and "I've never seen cholesterol this low!" I used to be proud, but now I am suspicious.....thanks for this forum....
  3. Wow I never heard of this connection! I have terrible light sensitivity: I am always wearing sunglasses, and I can't watch TC and can only barely tolerate working on the computer (which I need to do for my job). Is there any research on this ? I am so curious about it.
  4. I thought I would report back in. I am in the last week of my gluten challenge, and I haven't been having horrible GI symptoms, though I certainly would prefer not to have farting and loose stools.Before the gluten challenge I had been having bad respiratory/immune issues (bronchitis, colds and flu) and during the challenge I got so sick with fever and cough--and was finally dx'd with pneumonia. I was soooo sick and slept for like 10 days straight. Not sure if that is related to the challenge, but as I was at the clinic and obviously having immune issues and they wanted to run some other blood tests, I asked for a celiac panel. Everything was under the threshold (they didn't supply exact number, just they the test were negative. My serum IGA was 748 (when normal is under 426). So, not celiac but maybe NCGS? Luckily as a result of this site and others, I new the PA was wrong when she said "You obviously have celiac--gluten is poisoning you! (What did people do before the internet when faced with such medical incompetence?) . In addition to the high serum IGA, I had I high red blood cell width, low blood sugar and borderline (3.2) TSH. Not sure what any of that means! I have my endoscopy next week. I have to say that I would thrilled to find I don't have celiac, and I think I am getting all the tests I need, but I wondered if I am missing anything. I also just wanted to report in, as I found reading about others struggling with diagnosis and challenge helped me to decide to finally do the challenge. I will be sure to report back the results! Corrinne
  5. Thanks Nicole, That is all helpful. My thyroid is monitored regularly and is sometimes a bit low but ok I think. I was feeling well enough on the challenge, but today I've been feeling horrible. I have terrible sinus pain and cough as well as bad abdomen pain--actually my whole body is in pain! I used to have such symptoms all the time but since begin gluten-free I haven't. Could just 3 weeks of eating gluten mess me up so much? I guess this is what I am trying to find out: what really happens on the gluten challenge? How will I know if I should quit? It seems crazy to make yourself sick just to get tested. I wonder about the permanent or long term effects of this, but I couldn't really find any studies about it. I figured the celiacs might have helpful anecdotal information. I noticed that you are Canadian. My doctor says once I get a biopsy confirmed celiac I can take a tax deduction for gluten-free food. do you do this? Still if I feel like this for 3 more weeks I don't think any tax deduction will be worth it. Thanks for your help!
  6. Thanks for your response! Believe me I thought the gluten challenge was ridiculous, but with all the attention on gluten now doctors never believe you unless you have a biopsy. I tried to get my old tests but all the records have been destroyed. I have had the ATTG serum test and it came back on the high end of norm (I think it was 7 where 1-7 is normal and over 10 is likely celiac). At the time (about 8 years ago) my terrible GP said that meant I didn't have celiac, and I argued with her about it. Later that day she called to say "I wrong wrong--don't eat gluten." She sent me for an endo (which came back normal) but at that time I did not want to do the challenge. I have also had the fecal SigA (last year) and it came back 6.4, which seems to be on the higher side of normal. The naturopath said that meant the celiac was well controlled (though she said she was 100% sure I had celiac). So yes the challenge seems crazy but I guess a lot of people are misdiagnosed with celiac and it is just NCGS? I think my chances are small but if there is any chance it is not celiac the doctor wants to know to look for other things, and I will be soooo happy. I am getting to the point where I don't eat out and don't travel. If it's not celiac life would be easier. I have been doing lots of reading (so much research has come out since when I was diagnosed!). Doctors don't seem to know much but people here do.My GI seems knowledgeable, but she really insisted on the challenge, so I finally agreed. At first I thought that not feeling too bad on the challenge was a good sign, but now I think maybe it doesn't mean much?
  7. I was diagnosed at about the same age, and I had 20 years of great health! (I am now dealing with some issues that may or may not be celiac-related). After years of being sickly, I felt it was a whole new lease on life. Moreover, while all my friends were bemoaning getting older, I felt like I was just feeling better all the time. My 30's and 40's were much healthier and happier than my teens and 20's. And I learned earlier than most of my friends how to be healthy (eating well pretty much goes along with being gluten-free). So there are definitely good times ahead! Still, I do understand that it can be challenging, so good luck and take good care of yourself.
  8. Oh I think you should find another doctor! I have always wondered if my celiac diagnosis (no biopsy yet but gluten-free for 20 years until last month) was not valid because I am not thin (I weigh 125 lbs and eat like a stray dog). My point is that most of us have been told or have come to believe that we are not legitimately sick (whatever that means) when we obviously are! and it is very important to find a doc who respects you and wants to help you--they do exist! Here is an article on why weight isn't a criteria for celiac: http://www.nature.com/ejcn/journal/v64/n11/abs/ejcn2010161a.html Best of luck to you!
  9. I just want to stress that this is NOT in your head. See this recent study: http://www.ncbi.nlm.nih.gov/pubmed/22519894 It shows that Celiacs and NCGS have similar somatization levels as controls. That means it is not in your head, and likely even if it's something other than celiac or NCGS it is still not in your head. "In your head" is what they say and/or we think when tests come back negative. But we don't have the tests for everything or don't run them or they produce incorrect results. Hang in there! I agree that you should give the docs another couple of weeks to run whatever tests they need to run (insist on all of them) and then try a gluten-free diet. If that doesn't work, keep pushing your doctor for help, or change doctors (try a naturopath or chinese doctor if your western docs can't help). It is not in your head. Good luck!
  10. HI All, I am undergoing a gluten challenge and wondering if anyone has any advice. I don’t have a specific question but I’ve been impressed by the group’s knowledge and generosity, so I figured I would put my situation out there and see what happens. Some background: My mother says I was horribly ill and underweight as a baby (when I was 18 months the pediatrician put me on a diet of bacon and eggs, which probably was a good idea, though I have since hated bacon and eggs my whole life). I always remember having a “bad” stomach and a huge (like legendary) appetite. But because of GI issues I started restricting food around age 15: first dairy, then meat, then coffee, then acids….etc.. Besides the main GI symptoms, I had: chronic anemia, rash on my buttocks, horrible canker sores, and things that seem like good health (low BP, very low cholesterol, low body temperature, normal weight and height) but some now seem like maybe celiac related. I was diagnosed in 1994 (when I was 30 years old). I had been having terrible GI issues and also awful respiratory/allergies (repeated strep throat and bronchitis). Some blood work (now lost) made my GP suspect celiac and the gluten-free diet was a total miracle. After just a week I felt better and after a year I was like a new person. I elected not to have the biopsy because we didn’t see the need. After the gluten-free diet, most of these reversed (but low cholesterol still—dr’s are always amazed and say I’m going to live forever). I was very healthy for many years, but a few years ago I started feeling bad again. I’ve had terrible bloating and burping, some vomiting, fatigue, low thyroid, and my allergies/asthma are worse again. I also had a broken ankle that wouldn’t heal and a very traumatic shoulder surgery. My GP wasn’t any help. I saw a naturopath who diagnosed H Pylori and a fungus (geotrichum). Her treatment helped, but still the GI symptoms persisted. So I changed GPs and got a new GI. The GI really wanted me to do a challenge, and it’s taken me 6 months to screw up the courage. Meantime I had the genetic test and it came back high risk (I’ll try to get more specific info when I see her next month). I have always been very strict on the gluten-free diet, so either I have refractory celiac or something else (or all these gluten-free foods are really not, which is possible too). My biopsy is March 3. The GI told me to eat 4 pieces of bread per day for six weeks. I am trying to exceed that a bit, going for 7 weeks and a bit more gluten, just to be sure. The amazing thing is that so far I don’t feel too bad! I have traded bloating and burping for loose stools and farting (and a kind of general irritation of the GI tract). So what are my questions: anything I need to be doing? Anything I should request of my doctor? On a more frivolous note, perhaps we should have a betting pool about the results and give the money to celiac research (just kidding, but I come from a long line of compulsive gamblers and my partner is a statistician, so I can’t help thinking things like that). Any thoughts are most welcome! Corrinne
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