my3monkees

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Everything posted by my3monkees

  1. Hello, My daughter has been diagnosed for 5 1/2 years, since she was 11. She is great with the diet, that is not a problem. Unfortunately over the years we have had to eliminate many more foods. But each time she accepts it and moves on. She is one of the few people I know who literally eat to live, not live to eat! LOL She has been having more problems lately. I'm at such a loss, I can't seem to pin it down, possible corn. It is also hard, because she often times hides it from me. She hates being fussed over. She also knows, I think it is time to head back to doctors office to get some insight. Unfortunately she is extremely phobic of needles. Not just scared or nervous, but a true phobia. Just thinking about the doctors office makes her sick, so its hard to distinguish nerves and true illness with her. But one thing I have been thinking about is dishes. My dishwasher broke in July and alot of her problems have been building up since then. My home is largely gluten free, but my husband and middle son both still eat gluten. I would like to make the house totally gluten free. But financially I just can't. Especially feeding a 14 yr. old, who is already 5'9 and growing like a weed! Neither one of them are as careful as they should be, even after so many years. My husband is the worst offender! He would have a fit, it someone else glutened her, but can be so careless himself! My point issomething that just hit me today, I'm often times cleaning crumbs off counter or table then dumping into sink. Which I have always done, clean rag each day. But normally I wouldn't them move on to washing dishes. But now dishes are being washed in the same sink, using same rag. Gluteny dishes and non gluten dishes being washed together. They should all be being rinsed thoroughly, but the kids are doing alot of it, so no guarantee. I wonder if handwashing dishes could be causing problems? With the dishwasher, there are no rags or towels and water is getting heated to very high temp and rinsing thoroughly. Hopefully we can have it fixed within a month or so. Can't decide if this is a good idea, or am I grasping at straws, so I don't have to take her to doctors office! LOL If you have made it thru entire post, I thank you! Any insights much appreciated!
  2. my3monkees

    Looking For Insight

    Adalaide- I am so mad at myself about the dish rag. I have been doing this long enough to know better. I usually do have a dishwasher though. Mine broke in July. I've talked to my husband many times! He listens for awhile, then gradually starts all over again. My daughter is a minor but an older one. She is almost 17, graduating this year. So unfortunately trust would play an issue. I have thought of doing exactly that though. What I may do is call her ped and talk to her. I worry about her fear of doctors, I have no idea why she is so paranoid. I know she has held back from telling me she is sick, to avoid the doctor. When I do force hrt in she refuses to talk. This has only developed as she has gotten older and gets worse steadily. So its not something I was able to address when she was younger. Teenager plus chronic illness, plus fear of doctors, equals a very stressful combination!
  3. My dd didn't get diagnosed until 11. But she had food issues from birth. I had to avoid all dairy while she nursed. She always had trouble with gas. We had to delay all food until 6 mo. because she just didn't handle it well. She had never had an antibiotic, but had yeast infections from just a few months of age. By age 3 had huge cavities in all her molars despite all our brushing. Stomach aches were a normal part of life. By age 10-11, she was the most miserable, cranky child. I thought my sweet little girl was gone. Turned out she was still hiding inside! At 15, she is a joy!
  4. Thats awesome that you were able to get in and get tested so quickly! Unfortunately for some of us its not so easy. Especially without GI symptoms First you have to convince the primary to run the blood test. Which mine was reluctant to do, despite 3 first degree relatives! Then if that blood test comes back negative, there is no chance in hades of getting a referal to a gastro. Sometimes you gotta love the way the healthcare system works!
  5. my3monkees

    Gluten Free Food In The Hospital?

    When my mother had open heart surgery 2 yrs. ago. The food was horrible and she wasn't really hungry anyway. So the dietician came up to see why she wasn't eating. My mom told her that she was having a hard time eating, but maybe if she could just have bowl of mashed potatoes that would go down well. At that point the dietician informed her, that no she couldn't eat potatoes, they contained gluten! LOL
  6. I can't say my dd had a huge growth spurt after diagnosis, but she was older 11. Even now at 15 she is very thin. But even without a huge change in size, she was healthier. Before diagnoses she actually looked sickly, toothpick arms and bloated stomach. Looked like those pictures of malnourished children. Which actually she was, come to think of it! LOL Her height and weight didn't change dramatically. But her overall appearence improved drastically, more proportioned. While she is still thin, she is a healthy thin, not sickly and skinny. Hopefully that makes sense. Regarding the casein. We figured out when she was an infant that she had dairy issues. I couldn't have any dairy the entire time I nursed her. Otherwise she had horrible gas issues, and eczema. She did seem to somewhat outgrow it for several years. Then for awhile she could handle lactose free dairy. But now she can't handle any dairy in any form. HTH
  7. I have to admit, I don't always see the need for all the testing. Maybe for children, too allow for school accomodations. But for an adult, if you feel better while gluten-free, you have your answer! Why put yourself thru misery just to receive the "official" diagnoses. Its not going to change anything, the outcome will be the same. Besides what if it is just and intolerance and not Celiac disease. The testing will come back negative again. But, it still doesn't mean you can eat gluten. I think a little common sense goes a long way. JMHO
  8. Another thought, shared items like butter, peanut butter, mayonaise etc.. My dd kept getting sick and I realized we had all gotten lax, about keeping her items seperate. Although everyone was careful, enough cc was getting into these types of items to cause problems.
  9. When my dd was first diagnosed, a friend warned me to be careful when reintroducing oats. Remember gluten free diets can often be lacking in fiber. Unless you make sure to get enough from fruits and veggies. So a large bowl of oatmeal on an unsuspecting intestines, can make you a tad uncomfortable! LOL As long as your are not having a true reaction, just some bloating and gas. You should be fine, just go for smaller portions at first.
  10. I'm not very familiar with Zoloft, but I have taken both Paxil and Effexor. I would wait at least a few more weeks to a couple of months into the diet. The diet is enough of s stress right now. What doctors don't often tell you with anti-depressents, is that they are a awful to back off of. It took me almost 6 mo. to come off the Effexor and I was on a low dose!! What ever you do, don't stop cold turkey!
  11. My 9 yr. old, always LOVED Kraft Mac and Cheese. It was always a special treat. He doesn't like good mac & cheese. Only powdered cheese for him! LOL So every so often I will buy a box, throw away the noodles and use the cheese with gluten free noodles! I have heard that you can buy the cheese packets from Kraft without the noodles. But I don't do it often enough to be bothered.
  12. Some people do seem to have issues with the urinary tract that is related to Celiac. I am actually trialing gluten free, to see if I can clear up the same problem. I always have trace blood in my urine and abnormal cells. They tell me the cells are probably due to inflammation somewhere. Celiac can cause inflammation. I was thoroughly checked, to make sure that it was nothing else. Urologist has run all kinds of test, but can find no answers. I have been told that some people just have the microscopic blood, and as long as everything else is fine, not to worry about it. I will be curious to see if gluten free helps. I do know that my knees feel great, I can bend them completely. I was able to climb on a chair using my left leg to push off with the other day. My knees haven't been strong enough to do that in a very long time! So I apparently had inflammation in my knees, that I didn't even know I had. I just attributed it to age and weight! HTH
  13. my3monkees

    Maltitol

    Just an FYI, that is a sugar alcohol which can cause tummy trouble in alot of people!
  14. Better yet, cook up a couple pie pumpkins, scoop out the filling and throw in the freezer. Beats the canned stuff hands down! If you have kids let them roast the seeds.
  15. The pediatrician diagnosed my daughter without the endoscopy. Technically I think her chart reads "probable Celiac". She improved so drastically when we did a food trial, the doctor was willing to work with that. The ped. GI was 2 hours away and my daughter didn't want to go back to eating the gluten for the challenge. The doctor even told me, what was the point, weather the test was preformed or not, she needed to be gluten free. The test wasn't going to change the outcome. The diet worked stick with it. If at some point in the future, my daughter wants to be tested, she could do the endoscopy then. I agreed, I wasn't willing to put a child who had been sick and miserable for so long, through more misery, just to get an official test result! JMO
  16. The exact same pediatrician who had diagnosed my dd a 2 yr. earlier. When I mentioned that her younger brother was starting to show the same symptoms. She said it would be really hard having 2 gluten free children, especially considering how expensive it was. So I should just give him a tums before each meal. Apparently I was supposed to let him get as sick as my daughter had been, just to save money!
  17. Hi, I am wondering if anyone has ever experienced urinary tract issues and Celiac. I have never been diagnosed with Celiac. But my mother and 2 of my children have. My mother has also been a type 1 diabetic for 58 yr. Also suspect that dd may have Raynauds Syndrome. So obviously family history of autoimmune issues. I have no classic Celiac symptoms, other than frequent gas. But what I do have is unexplained urinary issues. I have had microscopic blood in my urine for several years now. Also the last couple of cytology test have had "atypical cells". I have been assured its not cancer. I have had my kidneys and bladder scoped and scanned. Nothing has been found to cause this. I have to go for another bladder scope in a few weeks. I have been told that the atypical cells can be caused by infection or inflammation. I am just curious if this could be caused by Celiacs. I hate not having and answer. I realize the 2 being related are quite a long shot. But with the family history I figured it was worth asking the question. Thanks!!
  18. Thanks for the reply's. I am going to go for the scope tomorrow. I had it 2 years ago and it was fine. I forgot to mention that before taking my son off gluten, he was running to the bathroom to pee constantly. I just have such vague issues, microscopic blood and the atypical cells. But no discomfort or burning, unless I drink to much coffee. Or maybe I just haven't gotten to that point yet?? I will see what they say tomorrow. But in the meantime, I have taken myself off gluten. I figure it can't hurt, and it just might help. Thanks!
  19. Nope, I have never been tested! I have asked, but been told without gastro symptoms, forget it! I don't have diarrhea, I'm not thin, I'm as far from thin as you can get! LOL So of course I don't have it, despite family history. I should try and find a new GP, but in this area, they all seem to be the same. Not the most progressive, forward thinking part of the country! LOL
  20. Hi, Can someone tell me what blood tests I need to ask for. My dd has Celiac, and I highly suspect my youngest does also. I have never been tested. But am due for a regular appt. so I thought I would ask my doc. to run a panel, just to see. I want to make sure she runs the correct ones. Especially since I don't have any classic symptoms of Celiac, I may have a hard time getting her to run even the basics. I know it can often times be genetic and since my husband is Native American, its much more likely to have come thru my bloodlines. Thanks!
  21. When my dd went gluten free, she hated most everything! LOL For the first month I think she lived on eggs and Envirokid bars! But as she got used to things,her taste changed. She now insists that gluten free things, taste better than regular. I think its more that she can now eat without pain! LOL As far as testing, my dd doesn't have an official diagnosis. I believe her chart says "probable celiac". Neither myself or the pediatrician wanted to put her thru the challenge, when she was just starting to feel better. She had been miserable long enough. If she wants to challenge when she gets older, then it will be her decision. HTH
  22. My middle ds had reflex and he threw up constantly! The biggest fear for us was choking, we had one episode at a few days old where he was choking and stopped breathing on us. When we rushed into hospital, that's when we found out what it was. I learned I had to be sitting up to feed him, keep him up for 1/2 hr. after every feeding. He also side slept, never back slept so he wouldn't choke. He is now my only child without Celiac! He can eat everything! My dd didn't throw up. But she had eczema, horrible gas, and seemed to be developing colic. Until I discovered she was allergic to milk. I had to eliminate dairy the entire 1 1/2 yr. I breast fed her. Just some thoughts, you should get your peds. opinion. Congrats on the new baby!!
  23. I think it is time for a serious talk with hubby, sons medical needs should come ahead of his food. Tell him he can develop his talents, by trying new gluten free "foodie" items.
  24. my3monkees

    Need A Really Awesome Cookie Recipe!

    I just use the one off the back of the chocolate chip bag. I use a flour mix of white rice, tapioca starch and potato starch. Sub it cup for cup, and add 1-2 tsp of xantham gum. The only other change I make is that I use all brown sugar, but I do that even with non-gluten free ones. Chocolate chip cookies are one of the easiest things to make gluten free, I think.
  25. I know Wegman's sells a non-dairy powdered milk replacement. I've heard it's really good but haven't tried it. My mother also used to use non-dairy coffee creamer as a powdered milk replacement. HTH