
julie5914
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by julie5914
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ARCHIVED Cant Think Straight, Exhausted, Weak, Tired
julie5914 replied to lemonade's topic in Coping with Celiac Disease
Yeah, it gets better slowly. I still have to sleep 9-10 hours a night and any kind of exercise does me in. Sometimes I still feel like my body's heavy and full and glue, including my brain, but those days are getting farther and farther apart. -
ARCHIVED Whats Going On?!?
julie5914 replied to Moongirl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I have heard of a lot of people getting better and then worse. I had to cut out dairy - after I ate it, esp. with acidic stuff (anything with both tomatoes and cheese was killer) I would have double over pain. Your description dounds more like an ulcer, but they would have found that in your tests. Did they test for small intestine bacterial overgrowth (h... -
ARCHIVED Body Pain And A Drained Feeling
julie5914 replied to Kim UPST NY's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Yeah, those seem to be the celiac sore spots: shoulder blades, neck, hips/lower back/almost glute area. I am six months out and still have trouble, but it has gotten better since cutting out dairy. Yoga helps me as well. I do take tylenol a lot. Just don't take Ibuprofen. I got a tempupedic pillow also. -
ARCHIVED Did Anyone Have To Give Up Citrus?
julie5914 replied to WGibs's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Acidic foods bother me a lot. I can handle some fruit, but I've never liked apples, and tomatoes are tearing me up these days. I can handle low acid OJ just fine though. And now before an acidic meal I take a pepcid AC - it seems to help. I don't do dairy anymore. -
ARCHIVED Pineapple
julie5914 replied to happy4dolphins's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
My mouth burns after too much fresh pineapple and I get like little tongue bumps. I don't eat mustard much, so I don't know about that. I always thought my problem with pineapple was the acid. -
ARCHIVED Help! I Am Really Frusterated And Overwlemed!
julie5914 replied to lemonade's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Hope I get all these right - I'm still struggling to heal myself. 1. Be as careful as you can. No "natural flavors" if you can't confirm with the manufacturer that it's safe. I do the same with "modified food starch" or "vegetable protein" or MSG. I am careful about cosmetics and hair stuff just because I'm being extra careful. I don't think you always... -
ARCHIVED How Long Did It Rtake You To Recover After Diagnosis?
julie5914 replied to sillyyak's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
It's been six months, and though I feel better than I did six months ago, I still have a long way to go. My labs were redone, and they were still a long way off from normal. I will try again in another 6 months. I had to cut out dairy as well to start really feeling better with digestive stuff. I still get muscle aches, tired easily, etc. -
ARCHIVED Biopsy Results "normal"
julie5914 replied to kathy1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Yes, you can have the gene and not have the disease. Usually the disease is activated at some point, usually a stressful time for the body, if it is activated at all. It is the same gene I believe that causes diabetes, but not everyone with celiac has diabetes and vice versa. Usually, however, the celiac blood test is a panel that tests for anitbodies... -
ARCHIVED Yay! Doctor Just Called With My 6 Month Results
julie5914 replied to jkmunchkin's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Are you going out to eat any? I am very careful, but my 6 month labs were horrible . Congrats to you though. My symptoms are definitely better, so I know it feels good to have progress. -
ARCHIVED Just Saw My Dr
julie5914 replied to JLK's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I have a doctor like yours - probably trained by Jeffrey Bland. I like her but remain suspicious because of the things mentioned here. I did shell out the big bucks for the ultra clear plus, mostly because when I make it a shake it is high protein and has a lot of vitamins, and I could not find a liquid vitamin supplement for much less. She told me to stay... -
ARCHIVED What Do All These Numbers Mean?
julie5914 replied to Moongirl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Hey, your TIBC, Iron, and CBC were all normal, which means no anemia. Yay! Your Ttg is still high which is to be expected since it's only been a month. I don't know what UIBC is, but it looks like another Iron test, meaning you might have been low but are on the way up (I am totally guessing here.) I don't know what the CLO test is. Your TSH and B12 were... -
ARCHIVED Refractory Sprue
julie5914 replied to sillyyak's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I worry about it too because my blood numbers will not get down. It is still early for me too though - just 6 months - and I am not very malnourished or too thin. I wasn't sure if you meant Nov of 2004 or 2005. If you meant 2005, it isn't anything to worry about yet. If you are talking about 2004 and this keeps up, it may be worth getting a endoscopy to see... -
ARCHIVED Post gluten-free Symptoms...
julie5914 replied to Moongirl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I had the same lump in nexk thing I got my thyroid checked countless times -- it was always fine. The doctors didn't seem to think much of it. It seems to coincide with muscle tightness in my neck and shoulders. My neck gets soooo tight. It has gotten better recently with yoga, a massage or two and a new temperpedic pillow. It is likely a deficiency for me... -
ARCHIVED Trouble With Dairy
julie5914 replied to gymnastjlf's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I'm with you - I cut out dairy 2 months ago and felt much better. But yesterday I had a addple cider and forgot to tell them to hold the whipped cream. I drank it will no real ill effects. But then I worry - am I damaging my intestine or delaying healing because my body is mistaking casein for gluten? But then wouldn't I have a strong reaction? Maybe it was... -
I has been my experience that the reactions are stronger now with accidents. No more bingeing! That is SO bad for you! I was anemic before going gluten-free (hemoglobin 10/hemotocrit 30)- I just got my CBC last week and my hemoglobin was 13 and my hemotocrit was 41! That's higher than ever! Yay! In addition, my ferritin was within range, which brought up...
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I can tell you what is BAD to eat. I have been in the emergency room for impaction. Great fun. So, if you are gluten free, you probably have no prob with this, but processed foods are killer. I used to eat frozen dinners all the time. That was when things were bad. Cheese was already mentioned - I think other dairy can be a culprit sometimes too. Carbs that...
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ARCHIVED Sensitivity To Gluten Increased After Going gluten-free?
julie5914 replied to GlutenFreeAl's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
My reactions are worse when I have an accident since I have been gluten-free. I literally feel like I have the flu for about a week to 2 weeks. Before I just had IBS symptoms and fatigue all the time and was kinda used to it I guess. 'Spose my body had adapted to it to try and live as well as it could with gluten. Now that it's gone my body isn't as used... -
ARCHIVED Are You Gluten-free?
julie5914 replied to Lovinglife's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Tina, I would try cutting out dairy to see if it helps. The Adkins bar and the sherbet probally had dairy in them. It didn't bother me much at first and the longer I was gluten free the more it started to put me in absolute pain. -
ARCHIVED Is Gluten Intolerance Forever?
julie5914 replied to danikali's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Well the writer of the recent WSJ article on celiac told me that he had his diagnosis reversed for celiac earlier in his life. So I don't necessarily think this is a gluten-intolerance or celiac going away, but it sounded more like somehow he was misdiagnosed in the first place. The place that reversed his diagnosis was a center for celiac, so I supposed... -
ARCHIVED Second Opinion. Help!
julie5914 replied to achiera's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I doubt it would affect the test - I've been gluten-free for 6 months and my blood tests are still positive. But if it is very important to you to have positive blood tests, keep eating it. Or have a big bowl of frosted mini wheats before you go! (Which is what I did the first time) -
ARCHIVED Help With 6 Month Labs
julie5914 replied to julie5914's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Hi Florence, My doctor is a DO and sometimes orders different tests than a traditional MD would, but I believe this is Lab Corp's standard Celiac Panel. I think every lab has a different version of the Celiac Panel, so if your doctor orders one and your insurance covers them, have your dr. order them from Lab Corp. I will explain what I know, but I... -
ARCHIVED Are You Gluten-free?
julie5914 replied to Lovinglife's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Yes, my digestive symptoms got better, then went back, then I cut dairy and they got better, but they've been not as great for the past week or so (I think I got glutened). The muscle pain and fatigue, however, are worse. My first ANA was a low postive, but last week it was retested and is way down and normal. :)I hope yours will be too. I'll post here if... -
ARCHIVED Help With 6 Month Labs
julie5914 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Hi guys, Just received my 6 month lab reports. 6 months without gluten, 2 months without dairy and a possible accident a couple of days before blood was drawn for the test. Can you help me figure out if this bad (like I should finally get that endoscopy) or not so bad. My labs have been very high in the past, but they had different ranges and a variety... -
ARCHIVED Casein Intolerant Too, But What Does That Mean?
julie5914 replied to Nancym's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Good question. I don't think enough research has been done to know if casein is as bad as gluten. It depends on if it is a straight up allergy or if it is an auto-immune response that also damages your intestine lining. Most people think that it does not cause damage although the symptoms are just as severe. I think that for some celiacs the casein is being... -
ARCHIVED What Is The Purpose Of A Biopsy?
julie5914 replied to nathela's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Hey, It's been 6 months since diagnosis by super high blood work, and I have never had endoscopy. I'm like you, my digestive stuff is much better (unless there is an accident - then I want to curl up and die!) but I am very fatiqued. It's exactly as you said - simple things feel like running a marathon. And my vitamins have been checked and are not below...