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binkman

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About binkman

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  1. I haven't been on the forums much recently, but I was dx with celiac after positive blood and endoccopy results in June. Since then I've been gluten-free and have had really good results. All of my fatigue and neurological symptoms have gone away and I can eat most things again with bloating and discomfort.

     

    But recently new things are happening. At the end of July I got a really bad cold. At that time I noticed what I thought were some submandibular lymph nodes. The cold went away but the nodes never did. A few weeks later I developed a dry cough, which I attributed to the cold. At that time I started noticing more nodes: my left supraclavicular node which is very rubbery, very mobile but also very small, about pea-sized. I went to my doc, she said to give it some time and see if they go down, none of them were large enough to be worried about.

     

    Since then, I've noticed more lymph nodes: a pea-sized one on my left side more on my chest than in my armpit, but an axillary node i suppose. It's about pea-sized, too. In the last two days I developed a really sore left armpit and found another lymph node in there, about the same size, very sore. I also have a peanut sized cervical node on the right side of my neck thats a bit sore. Also, I've developed a sort of rash-like thing on my face at the end of August, the same time as the cough. It was really just red, scaly, peeling skin on either side of my nose and I was able to ameliorate the peeling and redness with a bit of head and shoulders.

     

    The cough isn't going away, tends to wax and wane in terms of how bad it gets. Mostly it doesn't make me cough, but its a tickle that I cough to try to get rid of. Just this morning I was driving down the road and hit some bad asphalt that caused the car to vibrate for a few seconds and it tickled my lungs so bad it just about drove me nuts. Very very rarely it is a little bit productive. But mostly coughing doesn't help for long. I've also been having a bit of pressure/burning feeling sometimes in my chest and some popping noises coming from my sternum sometimes when move my torso around. I also sometimes get a really crazy itchy feeling from behind my sternum. That seems to be independent from the coughing.

     

    I went back to the doc on Friday, but my regular doc is on maternity leave. I saw another physician who gave me a referral to an ENT for the lymph nodes and an osteo for the sternum thing. I'd rather see an internist or rheumo... She seemed very unconcerned about the lymph nodes. I should say I havent ever really cared for this physician, she blew me off a few times for symptoms that turned out to be a result of my celiac disease. She also ordered a chest X-ray Friday that came back normal.

     

    I didn't think to mention the rash on my face, having just been reading about lupus. I should say that I *sort of* have a lupus family history. My dad, who also has celiac disease, has been suspected to have lupus, but as I understand, it can be difficult to definitively diagnose it. Every test he's had for it has been borderline. I've had CRP and ANA blood tests in June and they came back not only in the normal range, but at the very low end of normal.

     

    Does this sound like it could be a lupus flare-up? I should note that I have been running in the last few weeks and, although my lungs are uncomfortable, especially if I try to breathe deeply after a run, I don't seem to be having any problems getting enough air. I would think maybe it was some kind of lingering pneumonia if not for all these lymph nodes popping up recently and the face rash thing.


  2. Just wanted to share my experience so far.

     

    AFAIK, and I've been militant about it, I've been gluten-free for almost 9.5 weeks. The first couple of weeks were tough, and it took a while to get my energy back. At its worst, I couldn't hardly even cook for myself but I'm feeling pretty much back to normal now. I've even gone a little more liberal with my FODMAPS and haven't had any trouble really. I have a little bit of milk every couple of days. Before it would tear me up inside, but recently I've been tolerating it with no noticeable discomfort.

     

    The only energy deficit I notice now is when I'm running. Before the whole celiac crisis began (starting slowly this winter), I was running ten miles in one go at a pace of about 7:30 min/mile. I took the spring and early summer off, because I was feeling so poorly, but I'm still only running about 9-10 minute miles, and I can only run about 3 miles at a time. Some of that is just loss of conditioning, but I hope it starts improving. Decreasing capacity during high energy workouts was one of the first indications that something was wrong. It's pretty discouraging to have to start back from such a setback. I'm trying to eat as much healthy, whole food, and especially protein and carbs as I can to maximize nutrition for my muscles. I'm sure I'm still not absorbing at more than about 60-75% my pre-celiac disease rate.

     

    For the past couple of months I've been having cold symptoms that are coming and going. I think its just something that was making the rounds among some of my friends and work colleagues a few months previously that I just caught later than they did. I have been having some lymph nodes lighting up in my neck and one in an armpit. Hopefully that will resolve itself in a few weeks. I had some discomfort taking deep breaths after a run yesterday, maybe because something has settled in my lungs, maybe because of the back pain, and maybe because it was really humid.

     

    The only ongoing issue I seem to be having is a sore back and right hip. Both lower back and middle back pain. Yesterday I stood up and had a sudden incredible sharp pain in my abdomen that eventually resolved itself after about five minutes of slowly stretching out. I understand this can actually be related to nerves in the lower back. I've had some problems with my lower back since I was in high school. I wonder if some of my back pain is not arthritis. I'm only 31, but of course RA is autoimmune, too. My father started to develop RA in his back and shoulders beginning in his early thirties, though, and a case of DH in his mid-fifties led to a celiac disease diagnosis. He has also been borderline lupus since he got a blood test in his 40s. They check the blood levels periodically and he's always right on the edge. So, I assume I have all of my dad's autoimmune problems to look forward to. I might just be getting some of them a little earlier or in a different order. Hopefully I don't get them any worse than him—by the time he was 45 he couldn't lift his arms above his shoulders. He's still pretty active, though, and has always worked manual labor jobs.

     

    I have also had a little bit of tummy trouble in the last two days reminiscent of my worst days immediately before my diagnosis, and I have cut out a few food sources that might conceivably contain gluten. But I have taken a lot of comfort in the observations, above, that I should just expect some bad days for a while yet, and know that it's just part of the process.

     

    This forum has been such a help on both physical and psychological levels. Thanks so much everyone!!


  3. Thanks gluten-free Lover,

     

    I have indeed made a lot of changes in the house, and spent quite a lot of time and money replacing a lot of cookware and food, cleaning cabinet surfaces, countertops, etc. The only reason I went out was because the restaurant was a dedicated gluten-free restaurant.

     

    I was hoping that I'm not too bad off, because I've only been having symptoms for about 6 months and none of my blood work showed any nutritional deficiencies. But I realize it can be more complicated than that.

     

    I have been making only 'whole' meals, even staying away from high FODMAPs and processed food. I'm cooking a lot out of my garden, as I usually do. I'm a very goal-oriented and results-motivated person. I hope to get back into my running habit by the end of fall and I'm not even tempted to eat anything I think might slow down that recovery. I've only been using spices I know to be gluten-free. Can any spices, in general or in particular, be detrimental?

     

    I'm not rushing, just ambitious and optimistic. Thanks for the advice!


  4. Day 14!

     

    The weight loss has reversed itself and I am now gaining at almost the rate I had been losing.  :)

     

    But it's not been a steady improvement. I wonder if I glutened myself recently by accident, or if I am just having a relapse, but after improving through day 12, the last two days have been rough with C&D, and once again the burning feet have returned. No muscle fasiculations, though. I accidentally had some cheesecake two nights ago, :unsure:  though it was clear that dairy was causing a problem. I even had it at a dedicated gluten-free restaurant/bakery, so no chance of CC there. How stupid of me. I just wonder if the return of symptoms might be a result of the dairy?

     

    All sorts of weird new things are still happening to my body. I even have an itchy little wart appearing on the middle finger of my right hand.  :mellow:

     

    I discovered by ruq pain, which was a huge red flag for my primary care doc, was actually musculo-skeletal. It came back after a day in the car and I was able to 'pop' something back into place with some ab stretches. It hasn't bothered me since, how bizarre.

     

    Nevertheless, my energy level is the best it has been in the last two weeks, nvsmom was right! And even though I seem to be suffering a symptom relapse of some kind, it's nothing like the month it took for me to get my diagnosis. Here's hoping the remission continues!


  5. I've been gluten-free for a little over a week. Today I was driving all day. After about 6 hours in the car, I had to get more gas and urinate. I was surprised to see that it was a dark brown! I can't tell if it was cloudy or not. It was in a urinal, not in the bowl like usual, so it might have seemed a bit darker, being undiluted. It was not dehydration, as earlier that day I had light colored urine, and a few hours later, light colored urine again. If I hadn't been looking, I wouldn't have noticed it.

     

    I'm worried because last night I had a pain deep in the middle of my lower abdomen, which at the time I took to be a gas pain or from C, but it might have been related to this strange urination? It came back this morning before this strange urination event and was rather sharp, but not severe. 

     

    I'm also on metronidazole at the moment, which I know can cause 'brown urine', but I thought it would have been consistently brown tinted and not an 'event'.

     

    I've had a month of developing symptoms and increasing bad news. Could this be something simple? Has anyone had a similar experience?


  6. Haven't heard from the GI yet, but the results posted online from the biopsy (4 duodenal samples) notes increased epithelial lymphocytes and villous blunting. It doesn't give a lot of details. I suppose blunting means not atrophied, so I guess Marsh 3? If I call, would they give more details or should I wait for the GI to call me? Not that it matters, I guess its pretty clearly consistent with celiac.


  7. So far, so good, I guess.

    I've been gluten-free since the day before my endoscopy (when I didn't get to eat anything)—seven days now. Since then, some of my symptoms seem to be improving, but one week is probably not long enough to establish a trend.

    Strangely enough, its the neurological symptoms that seem most resolved. The tingling and burning in my feet is gone and left almost immediately after I stopped consuming gluten.

    My ruq and stomach pain has been easing every day, with the exception of yesterday, when I tried some cheese in a (gluten-free) quesadilla. I think I'll have to give dairy some time. But at least my appetite is coming back.

    Still not sleeping through the night, and still waking up in a panic, but I'm hoping that will pass. The brain fog seems not to have recurred for a few days, though. My D has become C, and now seems to just be crampy alternation.

    I'm still losing weight, but maybe the rate of weight loss has slowed down to 2 lbs in the last week. I'm still most nervous about this symptom. In the last couple of days I've been battling sudden bouts of extreme fatigue and fast heart rate. I'm not sure if this is gluten withdrawal (I definitely don't have any cravings!) or because my GI put me on metronidazole for Blastocystis.

    This forum has been of great help in dispelling anxiety about my many symptoms. Thanks everyone!


  8. Transit time can really slow down when you have untreated celiac disease. I had a BM daily, but did not realize that it food was traveling slowly until I prepped for my endo and colonoscopy. No worries there.

    Well, my food is traveling quickly. Only 18 hours and theres lots of undigested bits recently. I think all of my food has been going through me this fast recently.

    Could stomach acid production be low? Can that be from celiac?


  9. Transit time can really slow down when you have untreated celiac disease. I had a BM daily, but did not realize that it food was traveling slowly until I prepped for my endo and colonoscopy. No worries there.

    Well, my food is traveling quickly. Only 18 hours and theres lots of undigested bits recently. I think all of my food has been going through me this fast recently.

    Could stomach acid production be low? Can that be from celiac?


  10. Okay guys, here are the results from the endoscopy. I really don't know how to interpret them, so if anyone has any insight, it would be great!

     

    Upper endoscopy

    Quoting findings: "The upper, middle, and distal third of the esophagus were carefully inspected and no abnormalities were noted. The z-line was regular & well seen at the GEJ at 41 cm from the incisors. THe endoscope was inserted into the fundus which was normal including a retroflexed view. The body of the stomach & antrum appeared mildly erythematous. The duodenal bulb was notably edematous with villous blunting. The second part of the duodenum was notable for mild scalloping of the duodenal folds. Retroflexion revealed no abnormalities. Biopsies were obtained from the stomach (2 antrum, 4 body) and duodenum (2 bulb, 4 second portion)."

     

    Lower endoscopy

    Quoting findings: "A normal appearing ileum, cecum, ileocecal valve, and appendiceal orifice were identified. A 0.6 cm polym was seen in the transverse colon & was removed via pinch biopsies. Four diminutive (<0.5 cm) polyps were seen in the rectum & were removed via pinch biopsies. The ascending, transverse, and descending colon otherwise appeared unremarkable. Mild erythema & loss of vascularity was noted in the rectosigmoid colon. Biopsies were obtained from the terminal ileum (4), ascending colon (4), descending colon (4), and rectosigmoid colon (4). Retroflexion revealed no abnormalities."

     

    I asked a lot for SIBO to be tested beforehand, but after the test the GI told me she didn't test for it; I'd have to do a breath test.  :wacko:

     
    So basically I have two questions that I put to you experienced members:
     

    1) At 31 I'm a little weirded out that they found any polyps. The scalloping I take as evidence of celiac. Not sure what erythematous stomach might indicate, or the mild erythema and loss of vascularity in the rectosigmoid colon. Any ideas? Or is this not particularly extraordinary?

     

    2) I'm sure I'm celiac, and I'm sure I have SIBO. On my clear liquid diet yesterday I was drinking gatorade and it made my lower abdomen swell up like a watermelon. I was Rx an anti-flagellate for blastocystis which I had not been taking before hand, but the GI that did the test encouraged me to take it, especially if I thought I had SIBO. I REALLY DON'T WANT SIBO TO TURN INTO A CHRONIC PROBLEM!  :( I'm willing to do anything in my power to be as aggressive as possible about that in terms of diet. So what should I be eating? FODMAP? SCD? Both?

     

    Just a little worried.  :unsure:


  11. Thanks again for the encouragement and support everyone. Over the last three days, the weight loss has stalled out, thanks at least to my mom's cooking and all that Boost. I have a feeling (or at least a hope) that I might have had something else going on this month that was just made worse by celiac. I guess its a blessing if it allowed me to catch the fact that I am celiac, though. Hopefully I'm turning a corner in more ways than one this week.

     

    My biopsy is tomorrow. I am a little nervous of general anesthesia. I've never been knocked out like this before. I'll be sure to let you know the results. Hopefully there are no surprises in there.


  12. Thanks everyone for sharing your experiences, advice, and wisdom. It has really helped to relieve (a lot of) my anxiety.

     

    Living with celiac disease will be a challenge, but as long as it's something that I can manage then so be it. I was (and still am, somewhat) just worried that this sudden weight loss might not be explainable by celiac disease alone, because I couldn't find anyone with a similar experience online.

     

    I have been stuffing myself the last few days, on the order of 3000 calories a day, and pounding the Boost High Calorie drinks (which makes me feel like a geriatric) and my weight has stayed stable for the last three days. I was even getting some energy back last night. Hopefully I am turning a corner.


  13. The only issue that I have is that I am STILL losing the weight! If this takes 2 months to even out, at this rate, I will have lost almost 40 pounds! I was 6'2 and only 175 when this started. I already have absolutely no energy during the day, I suppose as a result of losing 3.5 lbs a week.

     

    Can I expect the weight loss to slow down at some point soon? 'm completely wiped out during the day. I barely have the energy to cook for myself. Seeing the scale drop EVERY DAY is scary.


  14. I have a whole long story, but it basically boils down to this: About three weeks ago I had some recurrent watery diarrhea with ruq pain, just under my right ribs. Both came on at the exact same time. Since then, I've not really had D, but somewhat abnormal and more frequent movements.

     

    I've had multiple blood tests. The more common blood test markers, just to measure general health and condition, don't show anything abnormal, but I was referred to a GI who ran TTG and Endomysial IgA Titer (amongst other blood and stool tests if anyone is interested) in an effort to try and figure out the diarrhea.

     

    TTG came out strongly positive at 130. IgA Titer was high at 320. She initially told me that "my celiac panel was completely normal". I basically balked, and found a second opinion with my GP. He confronted the GI doc, and she quickly changed her tune. I am scheduled for a complete upper and lower endoscopy in four days.

     

    My biggest concern is the weight loss. I haven't felt myself for a few months and I've had a few episodes of real nausea at or just after meal times a few times since Christmas. I've had less energy since then, but especially in the last couple of months. But three weeks ago, when the ruq pain and D started, I really noticed a drop in energy. The D has basically stopped, and the ruq comes and goes with seemingly no pattern. I have no appetite but make it a point to try to eat as many calories as possible. I had been adding weight at 2k a day later last year, but now I have dropped from 174.5 to 163 pounds in 21 days! This is a big deal, I was dieting and exercising like mad for a couple of years a few years ago to get down from 235 to 165. I then spent most of the end of last year climbing back to 175 as a result of slipping away from my diet and exercise regimen. I remember how hard it was to lose weight on purpose, so losing all of this weight in three weeks is really scaring me.

     

    Has anyone else experienced similar sudden weight loss and change in stools? I will know if its celiac or not for sure soon. I haven't had extensive blood tests, but TSH levels are normal. What could be causing the weight loss that I should be looking out for? I am afraid that I might have a more sinister cause underlying the weight loss. What should I be looking in to and ruling out at this point?

     

    Other symptoms: twitching, tired, crampy legs which have come on in the last week. Suddenly really bad GERD in the last two days, so bad it sent me to the ER. I've read other people having similar symptoms, but not the sudden, severe weight loss.