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About ARK

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  1. Even if the chances of another baby having celiac WERE 99% (which I seriously doubt) I wouldnt let that stop me from having another blessing! Honestly, avoiding gluten is not the end of the world! It gets easier too and I dont know how long you've been dealing with this with your child, but I PROMISE that it will eventually become second nature and not nearly so overwhelming. We discovered after a year of sickness that our then 13 yr old son couldnt handle gluten or soy. Now, 3 yrs later he is doing really well! Now, it's our daughter's turn. She is 12 this year, and has been sick over 3 months. Of course, my first thought was "GLUTEN!" since she has not been eating gluten-free like our son. We took her off gluten for a month and she remained sick, with a FEVER every single day. It didnt seem to make a difference, so we gave up on the gluten idea and started going to doctors. Four doctors couldnt figure out why she has a fever every day... Finally, in desperation we took her off gluten again, and all the stomach issues cleared up but she is still running a fever DAILY since the middle of March! I am hopeful that it is just taking her longer to recover from the gluten and that the fever will eventually go away. The good news is that it didnt freak me out to think she'd have to be gluten free too as I had already gone through all that with our son. YOU CAN DO IT! Even if your next child is gluten intolerant/celiac, it's not the end of the world.
  2. oh, by the way, she tested negative for Lyme disease, mono, and a million other things. thanks for your reply!
  3. I've been reading about how her immune system could be fighting off the gluten by causing a fever... I really dont know... I have been giving her probiotics and olive leaf, and occasionally oregano. Also, lots of other stuff like that. This is my kid who is known to be frequently nauseous - so bad that she wishes she could throw up, but rarely does. She craves pasta - the full gluten version, of course! And my son is off gluten totally, so it makes me wonder if she should be too... What makes it really hard is that I have taken her off of gluten many times and never seen a difference.
  4. Could celiac or gluten intolerance cause a kid to have a low grade fever for 6 weeks non stop? We've been to 4 doctors, and all the blood work is normal. None of them can figure out what is wrong with her. She has not been tested for gluten intolerance. However, for all of March she was gluten free but it didnt seem to make any difference in how she felt. She still had the fever. Her brother cant eat any gluten AT ALL so I know that she didnt get cross contaminated or anything - the gluten-free meals are nothing new to us. (Unless she snitched something, but she swears she didnt.) Any ideas anyone? The doctors havent a clue.... and my kid is stick! She lays around in bed all day long!
  5. I think it was really smart of you to just commit yourself to believing him, because it is probably the best thing for yalls relationship. Hopefully your complete faith in him will encourage him to always be totally honest. I make sure that my son hears me telling other people (like relatives) how honest he is, and trustworthy. And he really is! But, I believe that he really wants to live up to our trust, if that makes sense... OTOH, I am sure he has exaggerated how bad he feels more than once. He's human! As far as guilt and sympathy.... what do you feel guilty about? It's not your fault he is sick! Even if you are gluten intolerant too, and he "got it from you", it's STILL NOT YOUR FAULT! I am so incredibly sorry that my son seems to have gotten this from my side of the family, although the gene test showed that he has one gene from each parent. It's MY side of the family that has the most problems. I have one sister who we knew had celiac, and that is why my son got a diagnosis within months instead of years. In the last couple months, another sister has done a trial gluten-free diet, and found out she feels WAAAY better when she is gluten free. She is undergoing some testing right now. I have a brother who just received his Enterolab results 2 days ago. He is in BAD shape and needs to stay FAR from gluten! I have TWO nieces who are waiting on test results. And lastly, I myself feel better off gluten as well. I have 6 brothers and sisters as well as our parents who ought to be tested! It's really strange that we are all finding out at once that there is a huge problem with gluten in this family, but it is actually due to the first 2 people being diagnosed, or no one else would have realized the problem. Sympathy: I read on another board about a kid who had cancer and they spoiled her ROTTEN out of sympathy, and when she recovered from it she was a horrible brat and the mother was terribly distressed. SO GLAD that the daughter was in remission, but the kid was now terribly self centered and bratty. That really made me think. First of all, I am REALLY thankful that celiac is not a life threatening disease as long as we dont eat gluten. But, some days my son is SO sick, that he literally cant do anything. He has a lot of physical pain as well as brain fog, so I am learning to live with a chronically ill child. He is really depressed over all this as well. I have been called a "meanie" (jokingly) by my mom because I still make him earn his computer time, and if he has a bad attitude he loses computer time as well as any TV priveleges. My mom really was just teasing me, and she supports us totally in the decision to continue working on character issues during this illness. What better time? Even as adults we cant just treat everyone like crap because we feel bad, so he needs to learn these lessons NOW. I am trying to walk a fine line between sympathy for his pain, and "feeling sorry for him" which leads to self pity. If he says "My stomach is killing me" I will say, "I'm sorry... did you eat some yogurt? Why dont you go rest awhile and see if it gets better." or something like that. He HATES to go lie down and rest but sometimes he has not got the strength to do anything else. We really do have to get schoolwork done so there is NO TV allowed during the day. Rarely, he can watch an educational video if he feels REALLY rotten. But, usually he will lay on the recliner and listed to his history CDs. So, I do let him know I am sorry he feels so bad, but I try not to pity him. There is a big difference. He hates to feel pity from some certain people we know who just absolutely PITY him and fawn all over him with a million questions about how he feels and how AWFUL it must be! OH, poor boy! This is just TERRIBLE! You must be so SICK OF IT! etc, etc.... ugh. He BEGS me to change the subject if someone brings up his health. When those people come over, he greets them pleasantly, then disappears, with my permission. I try hard not to baby him, but I probably do do it some.... my husband doesnt baby him at all, and I can see how good that is for him. When DH gets off work, is our son is feeling good enough to help with outside work, then he is expected to help for as long as he can. It helps with the depression a lot to get outside. We have LOTS of animals, and DS's job is to keep all the water containers filled. He was feeding the pigs and occasionally the goats until just recently I realized he could be getting glutened from their feed.... WEll, sorry to write a whole BOOK on this subject! I hope you are able to figure out why Zachary is still feeling bad and come to a solution regarding school. I know homeschooling is not the ideal answer for every family, but for us it has been an absolute blessing! ARK
  6. Wow, this really struck a chord with me... ...this will be brief since I've got to get up really early in the mornings so I have to go to bed ASAP. I just want to encourage you.... I have a 14 yr old son who has only been diagnosed for a few months, and if he was in public school he would have missed SO MANY days by now! I KNOW he is not faking it because if he doesnt do his schoolwork, he isnt allowed to play his one hour per day of computer games. Some days, he has such bad brain fog, depression, joint/muscle pain and stomach pain that he cant do his school work or his chores and cant play computer. He REALLY wants to play computer, and will try really hard to do his list. When he has good days, we double up on the schoolwork to try to catch up on everything he has missed over the past 6 months. When he has bad days he just lays in the living room listening to his history CDs. I too, was one of those who hated school and exaggerated illnesses to get out of it. Mostly a sore throat, altho I never scrubbed it with a toothbrush!!!!! LOL It did work, my mum let me stay home a lot when I knew I wasnt really sick. No one can know your kid like you do, and maybe you can find a way to see if he is being honest by using a reward system. Our reward system (computer time) DOES backfire occasionally.... our son might be REALLY feeling bad, but pushing himself REALLY hard to get those chores done. He'll be fixing to fall over because he is in such pain but insisting he can work. I can always tell how bad it is though by whether or not he can spell. When he is in a brain fog, he forgets how to spell!! Going to bed!
  7. Thanks so much for the info Rachel. I am a little worried about the results being accurate because hi immune system is beat up already from the gluten problem. He has so many symptoms and they could be from Lyme, Celiac, or any number of things!!!
  8. OK, thanks everyone! I just hope the results are in my hands by the 13th because we have an appointment with a new doctor and I want to take ALL of our test results along and see what she has to say about WHY THIS KID CANT GET WELL! Our current doctor will most likely call us as soon as he gets the results. He is a great guy, but totally unfamiliar with Celiac and doesnt treat people with Lyme disease either. You know, I would think that I'd be used to waiting 2 or more weeks for test results by now, but it is still pure AGONY every darn time!!
  9. We were finally able to afford the IGeneX test for our 14 yr old son. We had it done on January 30. We were told it was around $250, but when we got there we found out it was $390!!!!!!!!!!!! Heart attack. We went ahead and did it, and cut ourselves REALLY SHORT on money for the month of February because my son is so sick and we need answers! My question for anyone who has had this test done: How long did it take to receive your test results? THANKS!!!!!!!!
  10. As far as I know, a CT scan is the same as a CAT scan. We have decided that we are going to hold off on that until we get some other test results back. (Food allergies, gliadin, iron, and I cant remember what the one is called that tests for blood in the stool.) I feel STRONGLY about the Lyme test being necessary ASAP, and we are blessed with a doctor friend who will do ANY test I request.
  11. Thanks for the replies! My sister went to a Lyme specialist somewhere around the LA/TX border and was advised that the Western Blot from Bowen labs is the best one because they actually count numbers, or somehow tell you how bad of a problem you have. That may not be the right term, but they are able to count something. LOL (See, my son is not the only one in the family with brain fog!) We are going out to eat today with about 25 relatives today for the first time since we found out my son cant handle gluten 4 or 5 weeks ago . I'm so scared!!!!!!! I'm going to call the restaurant this morning and see if they have a gluten free menu. Does anyone have any experience with goat milk products? The only dairy my son eats is FRESH homemade raw goats milk yogurt and maybe once a week he has storebought cheddar cheese. The goats are all dry now though, and kidding doesnt start for another 3 weeks (yay! Cant wait!!) so he is going to be off the yogurt as soon as what is in the fridge runs out. (Much to his dismay - when his stomach feels the worst he eats the yogurt plain to help his pain.)
  12. Hi yall - I think you set a world record for the number of pages in this one topic. LOL I've been reading the latest pages about Lyme and yall have really blown me away. My 14 year old son has so many of these same Lyme symptoms, and he is also gluten intolerant. In a week when our doctor comes back from vacation we are going to do a Lyme test on my son. My sister and my brother both are VERY sick with Lyme Disease, and I am sure a few more undiagnosed relatives. We just went to a new doc today who wanted to do a CAT scan. What the heck for? How is that going to help with gluten problems? Is it just to rule out other problems? We dont have any insurance and it will be $1000. GASP! We absolutely cant afford it, and I guess I was just sitting there in shock because I should have asked him WHY. He did take some blood to check iron and gliadin levels. He sent us home with a kit to test stools for blood. The main thing that worries me is the intense stomach pain my son deals with almost constantly. I learned yesterday that Lyme Disease can cause stomach pain and nausea... did yall know that? ARK
  13. I have Great Value Vanilla Flavoring (artificial - it has caramel color), and La Vencedora REALLLLL Vanilla from Mexico. That stuff tastes great! But, it is made with alcohol, so is it safe? If not, what the heck can I use? TIA!
  14. It's definitely time for a new doc! This one is super nice and he gets a gold star for figuring out the celiac in 2 months rather than 11 years!! BUT, he is VERY busy. Too busy - I am left researching things on my own and I just dont have any medical training which makes it a little difficult... We dont have insurance, so switching docs is going to be hard. This one works with us on the bills, gives a discount, lets me pay it out, etc.... We did get some insurance for the kids finally but it doesnt kick in until March 1st 07!!!! That is WAY too long to wait when you have a kid this sick.
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