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About leikela

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  1. Thanks for all of the replies. I pressed my husband and told him he needed to tell his GI to order the full panel and I have the list printed out to give to them. He called the dr office afterwards and requested the full panel and the nurse told him he would just have to ask the doctor at his next appointment and see "if he thought it was necessary." He has his endoscopy tomorrow, so I'm going to go with him and make sure his dr orders the blood tests. I'm so so so hopeful the endoscopy will show something. He said he's done with doctors after this and will just go gluten free on his own without a formal diagnosis. But as you all mentioned the military really doesn't give much of a care of his dietary needs, so really his only chance for them to give him some leeway is with an official diagnosis. He said he'll just pack tuna on the days he has to be in the field so he can avoid eating the MREs, but you can only pack enough food for so long. That might work when he's gone for a couple days, but a week or month of training... he's not going to be able to bring enough gluten-free food for himself for those longer periods of time. Honestly, I would love if they discharged him because I know they won't offer any dietary help for him. It's way too expensive. I fear that he'll be just prolonging the damage. I never had the endoscopy done, I had a full panel drawn that was unquestionably positive for celiac. Will he get his biopsy results same day? Or is it like blood work that takes days before you get your results in? He's been continuing to eat gluten, but says that today is his last day eating it regardless of what the tests show. That's why I'm just praying we get positive tests right away! Thanks again for all the advice and replies! It is very much appreciated.
  2. I'm posting this on behalf of my husband, Nathan, who has recently had a number of health issues come up. I was diagnosed with celiac disease 5 years ago and have noticed a huge similarity between his symptoms and mine pre-diagnosis. I cook gluten-free meals for our family, but he eats his own gluten-filled cereals and breads, pizza, etc daily... He is in the Army and has been worked up back and forth by the military doctors and clinics all to no avail. They did CT scans, ultrasounds, numerous blood tests that all came back "normal." His symptoms started as general discomfort on his lower right side, which made dr's think appendix or gallbladder problems. They did a thorough scan of his organs and everything checked out just fine. Then it became more like reflux and wanted him to take Zantac, then switched to Prilosec. He hated the Prilosec and switched back to Zantac as needed, but it still did nothing for the abdomen problems. Long story short - he has been extremely healthy and fit his whole life. Now, he's 25 and for the last two - three months has been dealing with bouts of diarrhea or constipation (without dietary change to prompt it) he's never been constipated before in his life, having neuropathy in his toes and fingers, severe joint and shin pain, almost constant abdominal discomfort, reflux, and the list goes on. In the beginning I jokingly said he was turning into me, but as his problems progressed it seems as if he really is! All of the things he's feeling i felt before diagnosis as well - chronic constipation, neuropathy, joint and bone pain, abdominal pain, etc. He went gluten free for about a week and felt notably better. Originally we weren't planning on searching for a celiac diagnosis because of his Army status. Army can't accommodate a gluten-free diet so there is a strong chance he would be medically discharged if celiac was confirmed OR confined to desk jobs and not participating in field training that involves eating MREs. But now he has come to the point where he just wants to KNOW what is going on with his body. After his couple days of being strictly gluten free he went back to his normal diet. I told him that if he wanted to be tested he needed to keep eating it until after the testing was finished. So he went all out, making sure he was getting a substantial amount of gluten in his system daily. Since doing this he's felt worse than ever. More neuropathy, more bone pain, more stomach pain. Another issue we're not sure is related to celiac or not, but he's started getting what a dermatologist told him was cherry angiomas. Again, he never had them before - I've heard they can be related to age. But it seems highly coincidental that in the middle of all this he suddenly gets about 20 of them. Along with these odd raised white marks that look like scars on his body. That's a new one for me, never heard of that before. He saw a civilian GI today. We've been super hopeful that they would be helpful and take the appropriate steps to either confirm or rule out celiac as a possibility. In order for the Army to take consideration of his dietary needs, he must have a diagnosis. I assumed they would order him a full celiac panel, plus endoscopy since he was meeting with an actual GI. He just called and said they're only going to do an endoscopy on him, but said they didn't think blood work was necessary as the scope would tell them everything they needed to know. I've sort of taken myself out of the world of celiac diagnosis these last 5 years, but... is that normal? It seems to me like it would be way easier for them to get a false negative with the biopsy. I'm hoping that if he pushes more at the next appointment they will let him take it. It's a blood test for pete's sake. A lot less invasive than a biopsy. Do you think the endoscopy is reliable enough alone for diagnosis? My fear is that they will biopsy healthy tissue, tell him it's not celiac, and automatically stop further investigation into his problems. It seems a lot more logical to me that they would do blood work and endoscopy. Any advice or suggestions? Thanks in advance, Rachel
  3. I get extremely sleepy also, it feels like you've been drugged (i supposed 'poisoned' would work though, lol). One of the things I notice right away is a migraine. I shut myself away in a dark quiet room with a cushy pillow and ride out the worst of it. It also seems to affect my vision. It's a lot harder for things to come into focus, I have to squint a lot in order to see things clearly. Then the stomach cramps come (obviously the worse the glutening, the more severe the pain). Then my stomach gets really distended, 6 months pregnant looking. My lower abdomen becomes super round and hard. If I touch my stomach it will leave a hand print (it's really creepy). It happened the other day unfortunately, but I did get the chance to show my family how REAL celiac is, and what gluten does to me. So it's nice that they take me more seriously now. After awhile my bones will start to ache all over also. My symptoms will usually last a couple days to a week.
  4. I saw on Dr. Oz awhile back that if your urine is a bright color it's because you aren't absorbing your vitamins like you're supposed to, and you are basically just peeing them out (resulting in the bright neon urine). Naturally, I forgot what you were supposed to do to KEEP from passing your vitamins through you... lol Go figure! Back on topic: Does anyone take 1aDay Brand vitamins? That's what I use, but I've heard that they're kind of junk.
  5. Wait, is all "autolyzed yeast extract" made from Barley?! Gosh, I had no idea! Maybe that's why I've been feeling horrible! I feel dumb now Thank you for the heads up! That gluten is everywhere I tell ya! lol
  6. Constipation was one of my main symptoms and is definitely the hardest to fix now that i'm gluten-free. Nothing I tried helped. I went off dairy, I was eating flax, drinking healthy amounts of water, added magnesium supplements... nothing seemed to really work. It would be 3-4 days before I could force any sort of BM. Recently I started adding coconut oil to my gluten-free oatmeal in the morning, I even used it to fry my eggs in (yummy) and stir fry dishes. Then I started drinking coconut water, I mixed with cranberry juice and drank it every day also... It has helped me SO much! It took a couple days before it kicked it, but it has definitely helped get my system moving! You could always try adding that!
  7. 4 months gluten free, 2 weeks dairy free

  8. leikela

    The Last _______ You Ate. Mmmmm.

    On my last gluten-full day I ate, powdered donuts, cookies (and cookie dough), Pizza, tortellini pasta stuffed with cheese in a creamy white sauce, and for supper i had a 1/4 pound cheeseburger, with french fries and yummo seasoning all over them. I also took pictures to document the day. lol Needless to say, I was SUPER full at the end of the day. But i don't regret it! Now whenever i'm in the car with someone getting take-out my mouth waters at the wonderful smells, but I'm reminded of how great i really do feel being gluten free now. My taste has changed so much that i don't crave the same foods anymore. Plus, my family and friends are jealous because of the weight i've lost too, so that's another perk!
  9. I have colon cancer in my family's history. My paternal grandmother had it (and her sister died from it - plus other members of her family had it also), and my dad is at risk. When I told my grandma all of my Celiac symptoms she replied, "Oh my!! You sound just like me!" Then she preceded to describe to me classic Celiac symptoms that have been going on for years. My dad has complained of issues with his "system" for as long as i can remember as well. That's just a few people, I suspect there are more family members on that side suffering the symptoms. None of them want to be tested though, because the thought of giving up gluten is just more than their little minds can handle. Sad, but true. I keep telling them to get tested, but it's just easier for them to live in painful ignorance I guess.
  10. One of my pre-diagnosis symptoms was a prego bloated belly. My lower abdomen would just stick out in the front and become hard. Oddly enough, the first day i went gluten-free, i had to pee SO much that day. I was pretty much going to the bathroom every 30 minutes, all day long. I never realized how much water i was retaining until then. My family and friends noticed an almost instant change in my appearance - puffiness gone etc... I've been gluten free for 3 months and within the last week or so my stomach has been taking on it's prego look again, feeling puffy, and whenever i go to the bathroom it's in small amount (urination). I might have to try some of the tips you've all suggested here (thank the Lord for forums!).
  11. leikela

    New Glutening Symptoms

    Too funny, I'm "ice-ing" my knees as I read this post! I never even thought about possibly getting glutened, even though achy bones were some of my symptoms before diagnosis. That would probably explain the bloating and mild cramps too... Lol, just when I think I've got a hand on this gluten-free lifestyle.... oh my Now it's time to figure out the culprit. It's difficult be the only gluten-free eater in a house full of "glutenites".
  12. I understand what you're talking about. Though unfortuntely, I don't have any answers or tips. Chronic constipation was one of my biggest symptoms before I was diagnosed with Celiac 3 months ago. Certain things have gradually gotten better. For awhile I thought my constipation was getting a little better too. But lately I'm feeling the effects of it again. My very low abdomen is painful to the touch. When I do have a bowl movement they are hard little things. >_< So you're not alone, I'm in the same boat you're in! If you find out anything post it on here! =)
  13. Congratulations on your diagnosis, now you won't have to wonder any more Hopefully you don't have to many troubles going gluten free, it's bound to be a hard road! :S I spoke with my Dr. this morning and after telling her i was STILL constipated and have more problems on laxatives and stool softeners - she went "Oh WOW!" and said i will be referred to a GI. She agreed with me that Celiac could be the problem (I was so thankful she didn't shut me down like so many other people have complained about), and ordered a "full celiac panel." She kind of left the room before i could make sure she was talking about the total IgA. We will see soon. And if I'm going to a GI, then I will probably have the endoscopy done. We will see...
  14. Thank you all so much for your feedback! I made a Dr. appointment right after i wrote this post. I go in tomorrow morning. I am taking some meticulous notes with me so i don't leave anything out! I'm not a very bold person, but I WILL make sure i get that blood work done! Again thank you all SO much! It's so good to know that you're not alone and going crazy!
  15. Hello everyone. I have been reading this board for awhile, you are all so knowledgeable on Celiac and similar conditions so i thought i would describe my symptoms and go from there. To those of you who venture all the way to the end, thanks in advance About a year ago, I had my very first noticeable symptoms. I was at work when all of the sudden I had this wave of nausea, lightheadedness, what I call "black vision" where everything kind of goes dark, i was clammy and shaky, yet hot at the same time. I had to sit down and put my head between my legs. My breathing was ragged and I had heart palpitations. A week later, while at work again, the same thing happened. This time with severe stomach pains. The pain was so horrible. I explained to my co-worker what was happening and she mentioned hypoglycemia and that i should eat some protein - well i did and it didn't really help me much. I basically just had to ride it out and wait for it to pass. Since then I have been scouring the internet looking for different explanations to my problems. I started keeping a "health calendar" - every day since then i have taken my body temp. in the mornings, and I will write down everything i feel during the day. Mid-December i dramatically lost 10 lbs, without any effort on my part. It has always been extremely difficult for me to loose weight. I have to really restrict my calories and workout vigorously in order to see any results at all. I was pleasantly surprised, so i started eating healthier and working out to aid the process. By January 1st, I had lost over 15 lbs. Then my weight started going back up, fluctuating back and forth. I didn't think to much of it. I started switching all of my foods (pasta's, bread, cereal... everything!) to whole wheat/whole grain. I am a grain addict, so i loved it. Then, even though I was eating over 25 grams of fiber a day, and i was taking a probiotic, and drinking a lot of water - i had some serious constipation. My stomach was going into spasms all the time. Basically all i could do was roll up in the fetal position and ride it out. I have had stomach cramps before in the past (not frequently, but enough to be annoyed by them) and i have always said they are worse than any menstrual cramp i have ever experienced. They have started becoming more frequent lately. After this i got health insurance and made my dr. app. When i was preparing for my first doctors visit, i reviewed my health calendar, and wrote all my symptoms down and tried to somewhat find a pattern in it. I really wasn't able to find much of a pattern (unfortunately i didn't write what i ate...). But i did notice that I often wrote that i was very constipated and bloaty. It was the most common occurrence. I was still having my bouts of "hypoglycemia" symptoms, that were becoming more and more frustrating. In the beginning I had been trying to find answers for my dizzy/shaky/weakness in muscle spells - but i had never thought my digestive problems (that i have had for years) could be connected to it. My mom and maternal grandmother have/have had thyroid diseases. My brother has type 1 diabetes. So i looked at those initially - after explaining all of this to my doctor she ran blood work - only to find out everything was "normal". My thyroid levels were "perfectly fine" and i didn't show any signs of having hypoglycemia after my fasting lab. So during my second Dr. visit, she ran hormone levels to see if i had PCOS. Those came back negative as well, thank God. After i switched all of my foods to whole grain, not only did i have MORE painful constipation/bloating/gas, but other symptoms started popping up as well, things that i had before - but didn't bother me much. My joints started aching, no matter what i did. The shakiness in my hands and arms became more bothersome. I could feel myself twitching randomly. Also my basal body temp. is averaging in the 96. range, but i would have bouts of "fridgedness " before bedtime. I would be so cold, i would sleep in my robe/tons of blankets, a scarf, socks and flannel pj's! I took my temp and during all those spells it would be in the 94 range. I was having tons of trouble concentrating. I almost felt like i was becoming dyslexic. I had more problems with getting "black vision" when stood up after sitting down, and it would take awhile for it to go away vs. going away immediately. I thought i was going to pass out. I was having painful almost like stabbing sensations by my heart. It would feel like i had adrenaline racing back and forth down my arms, they were all jittery. My fingers and toes would become numb frequently. Also, from the very beginning when my first symptoms became pronounced i was suffering from this chronic fatigue. I would get a full nights sleep, and within for hours of waking up i would feel drugged. This has been the most common symptom (besides the constipation) i have had. I explained all this to my DR. she took and EKG of my heart, which came back fine, she ran blood work for arthritis, PCOS, diabetes, thyroid disease, blood count, and one other thing which has completely left my mind at the moment... lol. All came back "normal". I am calling today to make another app. and to ask for all the blood tests results sent to me so i can see what she considered normal. She had no explanation for the chronic fatigue, achy joints, shaky/jitteryness. She said that we can treat the constipation easily and has put me on a regimen of Miralax , 2 stool softeners, and an anti-acid everyday (thinking it was heartburn i was having). She said to call back after a month and explain my progress. Well I have been following these orders for a month now and my symptoms are worse. I just went through the wedding of my sister, stressed out doesn't even come close to describing that experience. I wasn't able to eat without feeling horrible. I lost weight. It was miserable. I was really starting to feel depressed (which is so unusual for me!). I was so frustrated over this whole ordeal and not being able to figure out what was wrong with me. I started to feel like i was loosing my mind! Is this all in my head?! Now that the wedding is over, my symptoms have only become worse. Like they were shot into hyper-mode by the stress. My arms feel extremely jittery, even on laxatives and stool softeners i am miserable. I will go to the bathroom everyday, but it is very small - and when i take a day off the Miralax, the next day i won't be able to use the bathroom and i am extremely uncomfortable. My stomach has been making very loud noises, that you can feel when you touch my stomach. I will get very bloaty, dizzy, fatigued, clammy. My stomach becomes distended, dramatically. It looks like i am 5 months prego! Sometimes i feel like saying - to heck with sucking my gut in, i will just let my distended gut stick out and say "why yes i am pregnant, thank you, it's a girl" (note sarcasm lol) When i explained all this to the nurse she said "My, you're just falling apart aren't you?!" I am 21, i have about 10 -15 or so lbs to lose (that has been the impossible task)! I mostly have at least one of these symptoms all the time, sometimes i feel perfectly fine. Then all the sudden (like recently) all the symptoms are happening at the same time. It frustrating. I can't wait to talk to my DR. and tell her i want to run a celiac panel. This is the only thing i have seen that fits perfectly to what i have been feeling. In some twisted way, i almost hope that it is celiac, simply so i can KNOW what is going on! Most of the stories i have read are about people with the big D, anyone out there who had the opposite problem like me? I would appreciate any feedback!! I'm sure i have left something out, and i'll smack myself for it later But this is basically my story. Any thoughts?