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About Worriedtodeath

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  1. HI! I didn't know where to post this but does anyone know anything about those bubble wands that come in a long bubble solution tube? My silly received one and of course they cut off the name and contact info to wrap it. I only have marketed by Wal- mart stores made in china and the code wmp60036b on it. I couldn't find it on Wal mart's site. Thanks if anyone can point me in the right direction. Stacie
  2. I have to second this. While we have recovered, my daughter's development still lags. She lost so much SO VERY MUCH. We gave digital photo frames to the grandparents for Christmas loaded with picts from the last couple of years. I cried thru them. The obvious change when being flipped by you in a matter of seconds - you go from that happy, fat smiling snuggly lovable baby to the thin,stick figured, detailed bone structure, dead eyes with no sparkle, no joy, no life in them. hair that looks like chopped straw from some insane crazy scissors accident and then the pictures begin to flip by showing the weight gain, the glowing skin, sparkly eyes, laughing smile, beautiful hair... Breaks my heart. I can't watch the slide show. It's too painful. As for development, she still is behind in her speech and many brain development stages. You just can't develop mentally when you starving to death. Her brothers were so much farther ahead in being able to count, say things, point to objects... She has a ways to go in that area.
  3. I didn't refuse the biopsy and I should have. All it did was come back with a negative and 3 drs arguing over what might be wrong with my child. When before the biopsy, all involved were 100% positive it was Celiac and would come back positive. Her damage was not enough to qualify and was slight enough to be caused by a possible milk allergy (even though allergy tests and a month long trial of daily doses of ice cream revealed no dairy allergy or lactose problem) The tests do not detect early Celiac, it does not catch first stage of the disease, and it should not be a standard for children under 3. The University of Chicago Celiac center has brochures that even state children under 3 should eat a gluten diet for a year before testing as time shorter than that may not be long enough to produce enough damage to catch. And considering a sick Celiac child who may only eat the amount equal to a chicken nugget in a day (YES A DAY! I measured every piece and ounce she ate or didn't eat as it was) For those who are discussing numbers, if the numbers don't matter then why are Celiacs supposed to have 0 or as close to possible 0 for their antibodies because any number above 0 shows they are reacting to gluten. It's on the University's site as well. If you are gluten free, you shouldn't produce antibodies at all. And given that the normals our lab ranges are based on are not 100% perfectly fit and healthy people, I'm not buying the idea that normal people produce small amounts of antibodies. sounds more like the sampling of people tested had this average number of antibodies in their blood. I seriously doubt anyone followed those people for a number of years to see if they developed Celiac to explain their antibodies. And the average also includes those that have high numbers and those who have none. and for taweavmo3 Thank you My ped is the only one out of the specialists who looked me in the eye and said "we have to use common sense in medicine. Her test results indicate she is a perfectly healthy child with absolutely no known issues to cause this D. Her reality is she is dying in front of our eyes with symptoms that are classic text book Celiac. She won't make another year if you follow the ped gi's advise and she won't make another month without medical intervention to keep her going. ( ped gi said feed her rye and barely for another year and then retest to see if she is "full blown Celiac by then" ) We have no choice but to defy the test results and take her off of all gluten. We have eliminated all possible other things and we are still left with Celiac." Her turn around was so dramatic that there has never been any doubt that she is a Celiac who had false negatives on both blood and biopsy. To make it worse, her older brother's and my dramatic disappearance of so many things has shown that we too have some kind of issue with gluten as well. ANd to the original poster We only did the biopsy because our ped begged us to so she could say we had ruled out every possible thing (Celiac can't be ruled out only ruled in) and then we know that moving forward on the gluten free diet was the only possible path. She even said if we had anybody dx with Celiac or had a positive blood work, she would not advise us to do the biopsy due to the extreme poor health of our child and the fact that in her experience babies in this shape with Celiac turn around quickly and we would have an improvement in a matter of weeks once gluten free. But without the positive blood work and no known Celiac in the family, she was worried we might overlook something within the gi tract and my child didn't have the time to try gluten free and then have it not work. Otherwise, she would advise us to go gluten free and dx Celiac. You have Celiac in the family, a positive blood work, the biopsy is overkill and I wouldn't not even sweat turning it down.
  4. If I remember right (the label wears off and I can't read the name ) it is ZUZU http://www.cosmeticskitchen.com/zuzu-luxe-vegan-mascara.html expensive UGH Long lasting Good Sometimes clumpy but I can fix that . Wears well and stays on my eyelashes and not my face. Now get it at the local Earth Fare store.
  5. Please be advised that it may take months to feel better or get well. I wanted to say that so you don't get discouraged if you don't feel better in a few weeks. My baby became very ill and still tested negative on blood and biopsy. My mom told me I was like that as a child. Clingy, whiny, grumpy, sick, tummy problems all the time. Identical to the baby. Out of lack of anything else to do, we put her and the rest of us on a strict gluten free diet. The diet response was overwhelming positive for everyone but me. Until just recently. I have been the sickest for the longest. All the childhood issues and then as a teenager 6 straight years with daily tummy upset. Drs labeled it as stress. In my 20's, the chiropractor said I had huge holes in my hips and had bone loss. At 23, I stopped having daily d but came down with some type of swollen joint issues (never did come up with anything as to what it was) and I was labeled with chronic fatigue. I was super skinny (think starving child look) and then became fat. It's been downhill every since then Bone pain, joint pain, swelling, extreme fatigue, severe mood swings, dry skin (Would crack and bleed even in the summer), large clumps of hair loss, no way could I grow fingernails or toenails (splinter and break off) and the continual stomach issues ranging from days of d to days of none. Most days I just laid on the couch or tried to make it thru the day somehow. After all, moms are always tired, right? Or at least that's what all the drs around here say. Then the baby's issues started. And we found our way here. We went completely gluten-free. Only fruits, only veggies and lightly seasoned plain meat for 2 months straight. THen we added in some gluten free snacks like cookies and cakes once or twice a week and then some pancakes. We still do that. It's been almost 11 months. THe baby is completely better and almost back to her normal growth curve before she got sick. For me it's been much slower. Around 6 months, the bms normalized to like one a day and one that had form. I started feeling not so tired. IN fact yesterday I cleaned the tub ( I haven't been able to do that in 6 years), waxed it, cleaned the shower liner, scrubbed the floor and did that all over again in the kids bathroom!! Today, I am sore and took it easy out of habit but have not been tired today or stuck in bed all day. I have the prettiest toenails. I have never had toenails. I look like I had a pedicure. My heels are not cracked and are almost completely smooth instead of craggy. My skin is soft and lost all those dry wrinkles. My hair is not coming out so fast but I think it may be an underlying problem like lack of iodine causing that. I had great looking fingernails without hang nails until yesterday's tub cleaning. I'm starting an exercise program tomorrow because I believe I might be able to do one instead of being knocked out for 2 or 3 days from exercise. I'm looking forward to the new year to see if I might actually be well this coming year. ANyway, just wanted to say that a definite on the test isn't necessary and not to give up as it may take a long time before you begin to see results And I think most drs don't want to dx this. For some reason not having a sandwich is consider a sentence worse than death. They must teach that in medical school. Living without wheat is a death sentence. Your patients would rather be sick and miserable than not eat bread. LOL! Do the diet. Get better! Stacie
  6. HEre's what we had to do. Background - my 12 month old stopped growing and had continually worsening diaherra. I had a ped with a clue about Celiac but surrounded by specialists without a clue. Since we used an allergist with the oldest, I went that route first. First thing the allergist wanted after initial IGE testing was to get back to a normal stool. Took almost 1 month of only fruit ( apple/ banana), veggies( potato, green bean, green peas, corn) , and plain meat to do this. I kept a food diary that listed the day, the amount eaten ( and time), how prepared ( cut food labels and pasted those in there if I had any), any bms and how they looked - brown, light brown, scattered, liquid, together, etc and at what time she had any. I also recorded mood, temp, colds, sneezes, anything I noticed as different or not there the day before. Also kept comments on how she looked - condition of her hair, skin, nails, length of activity/sleep etc.. I got really anal and color coded the whole thing as the months went by and the stupidity of all the specialists got deeper. Then we went another month of regular solid stool before starting the food trials. HE said the typical culprits were dairy, eggs, wheat. So that is where we started. And he said a month was necessary. His opinion was allergy would be within an hour or so of eating, intolerance within 3 or 4 days max, and the realm of "other problems like Celiac" after that time period. We went eggs first. I was told for an accurate trial I had to fix and eat the same thing every day for the month. No switching products, styles, seasonings or else the results might be skewed. We went scrambled eggs lightly salted with a dash of pepper every day for a month. No reaction. Then brought in dairy in the form of ice cream. Ice cream everyday for a month (YEA We all rejoiced over that) Then, we introduced sandwich bread The same type of bread either eaten as sandwich or as toast. The 2nd almost 3 week she began to have loose stools. The allergist said go to the ped gi. The ped had all ready arranged that appointment because she was convinced it was Celiac, so we didn't have to go to long before seeing him. I continued the wheat trial with the food diary until the biopsy and then kept up with the food diary for another 4 or 5 months. So that's how we did it. Despite negative blood and biopsy, I had proven that wheat caused a severe issue and that it had to be removed along with oats, rye, barley. The food diary can really reveal some things. It showed the day she developed her lactase deficiency - Dec 14,2007. It showed the improvement off of wheat and the fast downhill slide on wheat. The more detailed the more you can track. Food testing unless it is IGE can be really useless unless you are dealing with a ton of things. And then once the gut is healed, much can be brought back into the diet -just avoiding the things that caused the damage. A detailed food diary and very careful intro of food can tell you a lot more. Like the fact that the only growth she did in a year was during the months she only ate fruit, veggies, meat,eggs, and dairy. And is pretty hard evidence in face of very negative tests. I still keep the diary whenever we reintro a food like cheese or ice cream or anything I suspect might be a trouble food. HTH Stacie
  7. Well, our blood work is negative ( there are a percentage of people who will not test positive and I'm not sure if that puts the blood work as unreliable or what) so I can't depend on it to let me know if we ingest gluten or not. I switched because of that. I also switched because of the toddler who likes to drink the bath water, lick her fingers or people or the cat for that matter, who is unable to control water ( and the gluten soap dissolved in the water) from getting in her mouth and still makes an unholy mess with everything that completely coats hers. Getting rid of gluten in everything was easier than trying to keep it from getting in her. I treat it like a severe peanut allergy. Also, it's a lot easier than having to worry. If I have a can of gluten food, use the can opener ,and forget to clean it before I open the gluten free food, then it's possible to have contaminated the can. If I use gluten food, put in the dishwasher and then it doesn't wash the food off well and leaves little bits..... Which bits are the gluten?? I just removed gluten from everything including the dog's food. Another thought is after switching to gluten free mascara,my eyes stopped itching and were no longer red. You just never know. Stacie
  8. My kiddo was extremely pale as well. The cbc is not a blood test that lets you know if there are deficiencies nutritional wise. I had to demand a vitamin test and a couple of other ones Her cbc was fine. Her Vit d was in the toilet along with Vit k, A, and calcium and I forgot what all else. It's taken months but her paleness is no longer that deathly white. We go back in a couple of months to repeat all the vit checks and mineral levels to see if any have come up to normal. You may have to get additional testing to see what her nutritional levels are And by the way, all of our blood work was "normal" including IGA total. We test negative. But our response to the diet is incredible and startling enough to give us a dx.
  9. Agree with Shayesmom! Great post. We jumped through all sorts of hoops with our baby only to discover that playdough used in her classroom during the week was making her sick on Sundays. PLAY DOUGH she didn't even play with!!! And wasn't even in the room at the same time she was. UGH!! Flour bins, oatmeal, cereal..... I would be firm but clear. everything would be converted to gluten free. All that dust lands on a toy and then they play, suck on their fingers, eat before washing their hands, Just gives me nightmares. Hopefully, all of it can be resolved with minimal fuss.
  10. never even saw that!!!!! That may explain some things. Soy cheese and heavy soy products upset her stomach but i never paid attention to the almond milk ingredients for soy. Thanks for pointing that out. Stacie
  11. Just wondering if anyone uses these products?? www.purelifesoap.com They don't say gluten free or wheat free but they look okay other than some that use wheat germ. I'm just concerned over the "organic and vegatable source" I emailed and the company was very prompt and very nice and after a couple of emails, said they were in the process of tweaking the labeling to avoid such confusions. Thanks!
  12. Okay the soap stuff totally mystifies me. What are the bad ingredients? I look at the bottle and nothing screams wheat. I didn't think about using the soap at places. SHe still likes to lick her hands. So some of those chemical names are code words for wheat? Here at home we are suave for kids shampoo (I thought Sauve was safe), equate brand hand soap, and switched yesterday to Kiss my Face olive and aloe soap for her really bad dry skin and cucumber body lotion by pure life. Those were the only ones I could find that had ingredients I could pronounce and that claimed to be all natural. I'm trying them out on myself first before I put any on her. Her dry skin is horrendous right now. So what's the crash course on soaps and lotions?? I've been just using what I knew others had used and really have no idea how to make sense of the labels on those products. We just rinse really really well. Stacie
  13. The class knows about the glue and paint and playdough. However, we have been using those stickable foamies. Peel the sticker off and stick it. Hadn't even thought about that. I'll have to see what the "sticky" is made from. As for playdough, mine absolutely cannot under any reason even be in the same room with it (or so it seems) If you have a wheat allergy, will you not react to playdough??? If it is used in the room and everything is not scrubbed to death, she gets sick. It took a long time to figure that one out. Once we eradicated playdough, she stopped getting sick. ONe dr still claims she has a wheat allergy and not Celiac so I was wondering if as an allergy she wouldn't respond to the playdough thus her response is not allergy? Clear as mud right? Thanks
  14. She was checked for tree nuts and peanuts. All clear. Is almond a different test?
  15. Forgot to add we are also dairy free and only use Almond milk by blue diamond. I'm pretty sure they have no gluten. We do an occasional cheese pizza since soy makes her sicker than the milk does but that is rare and any issues from that is a one time deal. Not ongoing like this has been. Stacie
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