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Nancy19 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsNo Test For You!I went to my doctor last week for my 4-month thyroid check up. I mentioned that I'm still having "intestinal issues" since being sick with a month-long bout of diarrhea back in March/April for which testing showed no cause (I've been having the same issues for years before my illness but not as severe, particularly after discovering I'm lactose intolerant and started taking Lactaid). I asked her - again! - if she would test me for celiac, since I have several symptoms and she refused - again! Instead, she told me that sometimes after an illness such as I had, people develop a "sensitivity to wheat" and to cut back on my ingestion of wheat products for a while and see if I feel better. Huh? Without testing me, didn't she just tell me I'm gluten intolerant?
Also, I asked her if she would test me for Hashimoto's since I still have so many hypothyroid symptoms and she said that it wasn't really necessary because the treatment is the same. Is it really, or do I have a really uninformed doctor? I also asked about taking another med along with my Synthroid and she said that the other thyroid meds are notoriously hard to regulate and have nasty side effects, so she doesn't prescribe them.
So anyway, I got my TSH test back and my level is .1, which is really low but I still feel like crap (her response? "well, sometimes if you have a wheat sensitivity it can make you feel like your thyroid is too high."). My doctor thinks it's too low (she wants it around 2.5) so she lowered my dose slightly and wants to see me in six weeks. I guess this is a small victory, given the fact that my TSH was over 100 a year and a half ago, and three years ago it was 398.
I really like my doctor and she has been absolutely wonderful and understanding when I didn't have insurance (giving me med samples and charging me 1/2 the normal office visit and lab costs), but I'm thinking she's clueless about this. I don't have great insurance and I'm not sure if I can go to a GI doctor without a referral. I'm really confused and beginning to understand the frustration many of you felt before you got diagnosed!
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Nancy19 added a topic in Gluten-Free TravelGluten Free In Traverse City, MiHey everyone -
I'm going to Traverse City for a few days this weekend to meet up with some friends and two of them are gluten free (one has celiac, the other is self-diagnosed gluten intolerant). They're throwing a birthday party while we're there for another friend and I was told to bring something that will go with burgers and fries. Normally I would make something, but as I will be staying in a hotel, I will have to buy instead. Does anyone know where I can go in Traverse City to buy party-appropriate gluten free goodies? Also, what would you suggest bringing that would be a hit with gluten-free's and wheat-eaters alike? I've been up there before but never went grocery shopping before!
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Nancy19 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsFinally...testing?I first posted last fall, and then again in the spring. I haven't posted since but I've been lurking (and learning). Long story short.. 46 years old, been hypothyroid since 1989 and prescription is constantly changing, have had digestive issues as long as I can remember (although not as bad as many of you!) which have been getting worse of late, discovered I am lactose intolerant earlier this yesr, had a mysterious intestinal something or other that resulted in diarrhea for a month in March/April and it's never quite been back to normal.
Fast forward to today - it's time for my thyroid check up. I'm currently on 250 mcg of Synthroid and still have so many hypo symptoms on top of the digestive stuff. For example, today at lunch we ordered carry out and I had a turkey sandwich. About an hour after lunch I started getting very gassy, a rumbling tummy and felt that I had to fart and/or have diarrhea. This doesn't happen after ever meal, but it's frequent enough. In fact, my tummy is still rumbling a bit now, and lunch was nearly 12 hours ago.
Anyway, I have not been tested for celiac and when I asked my doctor last fall she refused and said I didn't have it. I was last tested for Hashimotos 20 years and three doctors ago, and because I recently read online that up to 90% of hypothyroid patients have hashi's, I figure she may at least be willing to test me for that. But I'm also going to ask for the celiac test again, especially because stomach things have become worse in the last six months.
I will let you know what happens and make sure to ask for my test results and post them when I get them.
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Nancy19 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsUpdate On My Big "d"Hi everyone -
Just chiming in to give you an update on the diarrhea I had in April, as I mentioned in this thread - New Symptom; Doctor Won't Test for Celiac
I've been diarrhea-free for about a week now! Yay! It lasted for about a month, and it still just boggles my mind that nothing showed up on those tests. I still wonder how it could have been a virus or food poisoning, as my doctor said, because it didn't show up on the tests. But if it wasn't that, then what?
Anyway, I'm pretty much back to my regular diet, although I make sure to take a Lactaid tablet when I have dairy, and so far things seem to be okay (I still get a little gassy at times. *blush*). I've decided not to have any further testing done at this time - I'm feeling pretty much back to normal and I've read a couple of threads where some of you who have had official diagnoses are having problems getting health insurance because of celiac. Although I have insurance, I had a difficult time getting it because of my weight, so I don't want to take any chances, just in case.
I still think I might be sensitive or allergic to something (besides the lactose), so I'm going to keep track of any gastric symptoms I have and see if I can discern a pattern. I may end up going gluten free anyway. I don't need any kind of official diagnosis to do that!
Which brings me to a question - if someone who is not gluten sensitive or does not have celiac, are there any benefits to going gluten-free? I have a friend who has gone gluten free and when I asked her if she had celiac, she said no, but she was doing it because it's supposed to be a healthier way of eating. But when I talked to her she was frosting gluten-free cupcakes!!
Also, I just want to thank everyone who responded to the original thread that I posted the link to above - I really appreciate all of your help! I've been reading some of the other threads on these boards, and you guys are really a treasure trove of information on celiac and living a gluten-free lifestyle!
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Nancy19 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsNew Symptom; Doctor Won't Test For CeliacHi everyone -
I need to know if any of you have experienced what I'm currently going through. I wrote a post last fall with my suspicions about possibly being celiac. I got very ill in October with pneumonia, so I was unable to go to my doctor about getting tested for celiac because of the bills I incurred from the pneumonia - which I am still paying, BTW. Anyway, a week ago Friday I started getting diarrhea and thought I was coming down with stomach flu, but I never got the nausea, vomiting, fever and general "hit by a truck" feeling that generally accompanys it.
However, eight days later and I still have the diarrhea. It's strange - I have a very noisy, gurgly feeling in my intestines that almost feels like fluid or air moving through, like I'm going to pass the largest amount of gas in the world, followed by an almost immediate need to go to the bathroom. Immodium has had absolutely no effect on it. At first it was regular diarrhea - basically, liquid poo with some chunks thrown in for good measure, then on Wednesday it started getting kind of foamy on top. Thursday at work was brutal and I was getting worried that it wasn't going away so I made an appointment to see my doctor on Friday. She took all of my information, drew blood and had me give a stool sample. I asked her to test for celiac, and she flat out said it's not celiac. She mentioned it could be an infection, IBS, or a couple of other things, but definitely not celiac. She gave me omeprazole and told me to take Metamucil and eat a bland diet (plain rice, baked chicken, whole grains) pending the outcome of the bloodwork, which I will get on Monday. If the bloodwork doesn't show anything, I may have to have a colonoscopy. Meanwhile my liquid poo diarrhea has now become a cloudy, somewhat yellowish fluid with very little poo in it, and what solids it has are lighter in color than normal (probably because I haven't been eating much - Im kind of afraid to at this point). I still have the gurgling, noisy feelings and occasional cramping. It's getting very annoying as I have to run to the bathroom at least once an hour, and last night it seemed I was going every 20 minutes or so, and I went through two rolls of toilet paper. So you can imagine how my poor backside feels.
I recently discovered that I am lactose intolerant, and was feeling pretty good until this bout of diarrhea hit. I don't really like the tast of lactose-free milk or soymilk, so I bought Lactaid tablets and take one of those any time I eat dairy or drink milk. It seems to be working for me, and I am fairly certain this diarrhea is not related to the lactose intolerance.
Have any of you had diarrhea like this before and could it be a symptom of celiac? I've been suspecting I have celiac but haven't tried going gluten free and I'm wondering if I should, depending on what the bloodwork and other tests show. Or should I insist on testing for celiac?
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Nancy19 added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI Think I Have CeliacHi everyone
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