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katifer

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About katifer

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  1. We found that my four year old has Celiac when he was 2 years old because he was not growing, hardly eating, hardly slept etc. He has been gluten-free for the last 2 years. I only cook gluten-free meals, and there is almost no gluten in our house. We are very careful and his school is careful.But he is very,very little still and he hates being small:( He has just started complaining that his legs hurt all the time.I give him a multi-vit., calcium, vit-D drops, and fish oil...what am i missing?? we live on an island out of the U.S that has very little blood testing options...if we are back in the States in the summer are there tests that you regularly have your child have. Any thoughts? What would you do? thanks for your time!!


  2. Wow what you describe is pretty much what i did 2 years ago when i found my baby and i were so sick

    because of gluten.

    He was described as 'failure' to thrive because he stopped growing and i had weird symptoms like my skin hurt all the time and i had chronic pain in all my joints as a 25 year old.

    When we went gluten free ---i freaked out:)....cleaned the kitchen for hours, put every pan we had in a box and went and bought new stuff, etc. (please dont do that:) I called every company...etc.

    What i learned is be really careful on this site because people will say different things:)-but i needed the support.

    i wouldnt kiss my husband, would make him wash his hands before touching our stuff -

    ...okay so we decided to make our house gluten free. then eventually he had a cabinet of his gluten stuff:) He doesnt kiss me immediately after eating bread etc but will after brushing his teeth or a while after lunch and he has drank a bunch of water.

    i have never gotten sick again living in our house. randomly at a restaurant but have decided salads are what i have for now. Seriously i thought i was losing my mind and my Dr. and nutritionist were very helpful and just kept telling me that my fear was worse for my body than actually the gluten:) We are gluten, dairy, egg, and sugar free and try to be soy free. There are tons of celiacs that have blogs with wonderful recipes-yet very few that keep out all the things we avoid. (but i substitute in things for what we cant have)

    We eat meat/fish , fresh veggies, and fruit, and have learned to bake and find so gluten free stuff that isnt sweetened with sugar. Do you use energyfoods egg replacer...it gives you soo many more options to be able to use a binder. Anyway you can write me if you want some lists of websites/or food lists we are currently using. Tonight i will be praying for you, your marriage, and peace about these things...it does get easier. God Bless.


  3. Anyone with stabbing muscle pains and muscle twitching?

    Yes! It happened to me for years! It was horrible. Then i went gluten, dairy free...i try to stay sugar free too. It never happens unless i have gluten or dairy. It did take a bit for my body to heal...4-6 months. 2 years later i cant believe i lived like that from age 11-27. Hope you heal quickly. Make sure you check medications, and things like dressing for salads etc. I never worried about shampoo etc.


  4. hmm not sure why it didnt post what i wrote--but i had the same thing dizziness often/daily tingling down my arms and legs, numbness--in short my nutrtionist said that my blood sugar was a mess and i needed to stay off all sugar cane/evaporated cane syrup whatever they like to call it:)----it helped tremendously. He had me take chromium( it isnt expensive at all) and that has leveled my blood sugar --i also do not have gluten/ or dairy---hope you feel better soon you are not alone:)

    P.s. He said it was Reactive Hypoglycemia...every doctor acted like it wasnt a big deal but it helped me so much to keep sugar out.


  5. hmm not sure why it didnt post what i wrote--but i had the same thing dizziness often/daily tingling down my arms and legs, numbness--in short my nutrtionist said that my blood sugar was a mess and i needed to stay off all sugar cane/evaporated cane syrup whatever they like to call it:)----it helped tremendously. He had me take chromium( it isnt expensive at all) and that has leveled my blood sugar --i also do not have gluten/ or dairy---hope you feel better soon you are not alone:)


  6. I went gluten free 7 months ago, and symptoms went away almost immediately. Lactose free for a while but have been slowly bringing it back. In the past, i have felt dizzy from time to time, but lately almost dailly. Fingers and toes have begun tingling and numbness in toes for the past 3 weeks. left calf and knee are sore alot. went and had blood work done B-12 was normal, Iron was high, hemoglobin count was high. ANA positive,Range negative? at blood test, Speckled titer 1:40( WHatever all of this means ). Have been taking b-12 supplements and Multi's (without iron) all along. Never officially diagnosed other than elimination diet confirmation.

    Am i still getting gluten somehow? i have had eggs at resturaunts here and there over the last month. Can and does gluten cause tingling and numbness even without a b-12 deficiency?

    I'm nervous and frustrated. I may need a new doctor who gets it. they told me to come back next month, for more blood work and office visits. I could sure use some guidance, thanks...


  7. Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

    These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

    My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

    I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

    So what do you think??

    I am just going to add that the reason i went to be tested was because my child was having chronic lose stool and was struggling to gain weight/and grow. Both of our tests came back negative.(unfortunately i was put on an elimination diet while breastfeeding and gluten had been out of my system for a while) He was diagnosed failure to thrive(born a 9lb)...under the 2nd %...took gluten out of his diet and has been great since...he and i both have the gene and his endoscopy was fine but he had already been off gluten for too long they shouldn't have even done it. I will be honest it was a VERY hard decision to make without every test coming back positive but the doctors at Emory in Atlanta just said if he cannot tolerate it then it is not good for him. He is 3 now and my 5 year old and i all are gluten free. They are both doing so well--they are not catching ever sickness anymore(they rarely ever get sick), they do not know the difference when it comes to gluten free food and they know what they are allowed to have. We eat well and they are so much more healthy than before. My 3 year old is growing and doing well. The doctors believe that i have celiac because of all my symptoms,gene test and i am very,very small compared to the rest of my family...i stopped growing in 6th grade. Celiac and food intolerances..anything that makes your food rush through your body means you are not getting the proper nutrition and your body suffers. i hope you can find a support group to help if you decide to go fully gluten free-it has saved our family from sooo much pain. God Bless


  8. I am so worn out ! Dizziness, restlessness, I feel like even if i could sleep for a week i would still be tired, i feel like i have no strength , even the tone in my arms is gone ! Been gluten-free for about 2 months and I am so dizzy if i turn my head qiuck to look at something i half ways black out and see purple ! Is this normal? I know everyones healing time if different, just wondering how long its taken other ppl . Thanks :)

    I just want to say the same thing happened to me..very dizzy ,tired..etc. I have been gluten free for over two years and i felt some relief from my chronic pain but the dizzy-ness etc. was hard. My nutritionist encouraged me to look into reactive hypoglycemia(he had me start taking chromium and stay away from ALL sugar cane)--he said that the gluten intolerance can really make a mess of your blood sugar and just try to eat low-glycemic food until my body became more healthy...it has taken a while because i love sugar and i struggle to stay away...but when i do there is NO exhaustion and no dizziness. I do not eat dairy which has also helped. Hope you feel relief soon.


  9. Thank you so much:)- We do not drink Rice Dream because it made him sick (barley!), we use Rice Milk from Trader Joes that has no barley in it. We do use coconut oil, etc. He cant really have Rice CHex, i thought it was the sugar that made him sick with those but i guess it is trace amounts of gluten? anyways i will keep at it- ---borrowing more gluten-free/CF cookbooks from the library tomorrow:)-thanks again!


  10. My 3 year old son has been gluten-free for almost 2 years, he was born weighing almost 9 lbs, from birth gagged, choked, reflux type reactions(also horrible diarrhea)...then got pneumonia at 10 weeks old and just continued to be sick the rest of the year his weight continued to decline...doctor gave DNA tests for celiac and had DQ2---soooo.. he has been gluten-free, DF for almost 2 years and he only weighs 25lbs, still can wear 18month clothes...and is in the 2% in both weight and height...once off gluten and dairy he rarely ever gets sick..does act hypoglysemic. Any thoughts?(was checked for 102 food allergies and nothing showed up)


  11. okay so my son was only given a gene test---nothing else by our Dr. --he told me to take him off gluten beacuse he has the HQ2 gene--my son wasnt thriving etc.--never eating etc., .....now 6 months later he is still not eating much-more but seems to have many other things he cant eat-- My bro is a gastro surgen and told me he was shocked my 18month old was not given the proper testing and told me to drive to Atlanta for a ped, gastro specialist for a biopsy etc. Please tell me someone else has had to do this? i feel horrible for my son but i really think we need to know for sure. i think he has to go back on gluten for 4-6 weeks---thanks--


  12. Thanks for sharing! i was diagnosed in Nov. 2007 because my baby was really sick and they found that we both had Celiac. I have been trying to figure out my symptoms because i lived with it so long it is hard to know what was related and what wasn't----your story just helped me so much--honestly i have tears running down my cheeks because i really want to write my siblings a letter so that they know how serious this is and that they need to be tested--but i have had a hard time getting the 'symptoms' part clear. I am 27 and i have had this since i was 11. i always had horrible back pain and didnt even know i had all the other symptoms until i got to the place where you were at in college. thanks again for sharing!


  13. Can anyone help me... I just spent about an hour licking thankyou letter envelopes for my sons birthday and now feel really tired and sick and have a cracking headache. I am in the process of being dx and was wondering is it a relatively common thing for it to be in them and is there enough gluten to cause a reaction like this?

    YES i feel horrible if i lick an envelope!!! absolutely gluten!


  14. i need some advice

    I changed doctors and asked if he would test my child and i for Celiac--he said the best test was a genetic test...and both of ours came back with the HQ-2...(if i am saying that correctly?) anyways, i asked because i have been told nothing helpful since i was 10years old...and i am 27---my child was 11 months at the time and had stopped saying words he had learned, was not eating anything but nursing, stopped gaining weight for 3 months, never smiled, threw up often. i had already tried going gluten free but was having a hard time sticking to it with out some type of diagnoses... i have had horrible chronic joint pain since i was 10, my skin hurt, canker sores, im very small, stomach aches, horrible brain fog , awful depression...my list goes on...but i am really struggling because taking gluten out of our diet/ out of our house helped the baby within a week(which is great!) --and he and i have only continued to feel better--------------but for his sake i am nervous because my doctor obviously didn't do enough tests looking through and reading other peoples experiences... my symptoms are almost gone...i will never have gluten again..i guess i just feel weird for my son because we just did some allergy tests and the gluten etc came back undetectable(so its great that we are doing a good job keeping it out of his diet) but i cant imagine putting him back on gluten to make sure this is really celiac..what do ya'll think???p.s. my 3 year old had horrible allergies eggs, peanuts, gluten but is HQ-1..


  15. i am ordering a yogurt maker and will start next week --do you think this is way to hard to have my 17month old do? He and i were diagnosed in Nov 2007 and he is doing sooooo much better being off gluten but it seems that soy and dairy bug him too--i guess i just dont want him growing up with so many intolerances! Gluten/Celiac is enough. i need to do it for myself though because i do have the 'leaky gut' issues- i can tell in minutes my brain feels foggy/body achy if i have dairy,soy..eggs..yeast etc. im glad ya'll are doing this --gives me hope to try it.:)