Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

susan7fink

Advanced Members
  • Content count

    15
  • Joined

  • Last visited

Community Reputation

0 Neutral

3 Followers

About susan7fink

  • Rank
    New Community Member
  1. my son is 9. he was diagnosed in May/June this year on a fluke.. after having a stomach bug. He also has psoriatic arthritis and was taking meloxican which we thought was the reason for his pain. after a blood test and biopsy confirming celiacs.. He also has learning issues.. short term memory, working memory and ot issues.. that were the first to be discovered. After finding out about celiacs we went GF .. however he started having tremors.. which are growing worse and his muscle pain all over is on hold due to he fell  in gym and broke his elbow. He does not complain and always says Good when asked how he is.. I have never heard of gluten affecting people this way. I thought going GF would solve our issues .and now i have to worry about trace gluten and want to stop these tremors.Do you have any advice at all and is this something that can go away.. DO i have to stay away from all GF boxed foods and how on earth can you when your 9 year old is in school and birthday parties and snacks ect...? anything would help
  2. oh the tremors started at or around the time we went gluten-free is this odd?
  3. Thank You.. so im not going crazy lol.. i kept saying this is too many issues for a 9 year old to have,, they have to be connected .. just didnt have a clue it was going to be the gluten.. thanks for the links and websites.. I rather would go natural then drugs for sure.. he takes vit D and krill oil.. magnesium may be needed.. also more plant food less boxed "gluten Free" foods since its hard to define how much trace gluten is in it. I thought gluten-free was difficult enough.. But well .. we do what we have to do. I love all the support on here and hearing different testimonys. makes me feel not so alone.
  4. My son was diagnosed several months ago.. He has psoriatic arthritis, he has learning difficuties (working memory, short term memory) he has been in speech, OT, and on a complete fluke we found out he had celiacs,, not the common systems. confirmed by blood work and biopsy. Soon after.. he started having tremors.. started out where i couldnt even see them until he pointed it out (hes 9) now they are worse. started to do PT but then he broke his elbow badly in gym.. so we have to forgo that for another 4 weeks. He doesnt complain.. but his stomach up high and middle , back mostly upper near shoulder blades and around the side.. ankles knees and fingers.. Took him to a neurologist who said bc of his celiacs .. he believes it has effected his cerebellum (ataxia) and is going to brain storm with his rheumatologist. I have read several articles on this .. but they are hard to find.. i am very curious if anyone else has delt with this.. and why its not getting better being gluten free.. but am finding out about trace gluten.. as the tremors get worse the more worried i get and the more difficult it becomes. I do NOT want to go on high dose meds that have many side effects at 9!
  5. Poor kid..I plan on getting tested as well at my next check up..I had a hysterectomy in Jan ..depression alternate between constipation andddiarrhea...sluggish.brain fog ect .sincerity tends to run in families. Or just stay gluten-free and see if that works. His tummy still hurts up high and hope that goes away ..
  6. My 9 year old recently started his gluten free diet due to celiac disease. Last week he was so constipated he screamed bloody murder and his stool was all bloody. Called the Dr who said he must of torn his rectum abdomen to give him Miramax. The rice the apples and bananas possibly triggered ...so added more fruit.Miramax. he had a normal bowel movement 2 days later. No Miramax since.today he has stomach cramps and diarrhea..I'm still at the beginning of gluten free and have been very careful. Is this Normal ? I also didn't realize that the dark eyes could be a symptom...hes had them forever..thought it was allergies as he is allergic to lots of stuff. Any suggestions?
  7. I can so relate to your story..I have 5 kids 2 are grown and 3 at home..1leaving for college. My 9 year-old son has psoriatic arthritis and that's really how we found out he had celiac confirmed by biopsy results Monday. Now its gluten free For us all. But all the things you mentioned....between my son my 13 who has had severe constipation add bipolar ect ect which have landed us in the hospital.myself brain fog belly bloat and on and on. This is very difficult. Drs make you nuts, I think I should have frequent flyer miles .expensive tests I've been stressed overwhelmed and agitated. I wish you luck.we are all in this together. I as well felt horrible giving my don gluten bf biopsy..I felt was putting poison in him, now I'm scared I'll let gluten in without knowing!!
  8. So to let everyone know who has been so kind to me..my sons biopsy came back positive with inflammation and damage.I'm blessed we found out so young and that I have no clue how long this has been going on, however I believe if he also didn't have seen auto immune disorder..out would have never been caught so soon. Now I have alot to learn! Glad I had the scope and have an answer!
  9. I Have tried to post several times today and im thinking its my tablet or me... I had him scoped yesterday.. the dr came out and said/showed pictures of his stomach and sm intestines. damage, not severe but there.. not normal she said with the blood work and what she saw she would be shocked if the biopsies are negative. I should have them back end of the week but in case they are bsack logged tues at latest. He had a MRI of the liver and abdomen.. negitive as of now .. whatever was on the sonogram they saw nothing on the MRI. My daughter who saw the endocrinologist..is doing a full panel.. tsh , hormones and celiac... so we shall see i hope at the end of the week i hate waiting.. i read all your posts and thank you so much for all your input.. now i need to know where to start.. finding a printable list is crazy.. i want a list of foods!! thats all. I will let you all know when i hear about the biopsies. here we go.. a new way of life.
  10. I have not figured out how to respond back to others...I hate trying to do new things in the computer. You may be laughing right along with me writing it. The Dr is adiment she wants to scope him but also mri his liver and abdomen. We scheduled it for this Tuesday..not sure what else will show up. A bit nervous. Thank all of you for your info from books to understanding.I have a great amount to learn and I hope I can do this ..another advice on what to didn't bf or after the test? A starting place? How it all fits in with family , dinners other kids friends ect I'm today lost I don't know how to put a gluten meal together!
  11. Thank you all so much...this I think the hard part..then from there it's a lifestyle change..although a life long one.I don't have the exact numbers..this is what I was told...IGG normal..IGA ..elevated..endomysial positive...immunoglobulin..normal.. that's all I got. The meloxican is a strong nsaid..as soon as his stomach started to hurt they put him on prilosec and discontinued the meloxican..he had taken it for a year. The mri is being done for the liver and for the arthritis to see what damage he has. Oh boy..I also want to add he gets fever blisters ans styes constantly...so I'm not sure what that means? So sorry for all the questions..sorting through this is difficult and being new to celiac I have no clue. Thanks for your patience and wisdom..the support is much needed!
  12. Thank you all so much...this I think the hard part..then from there it's a lifestyle change..although a life long one.I don't have the exact numbers..this is what I was told...IGG normal..IGA ..elevated..endomysial positive...immunoglobulin..normal.. that's all I got. The meloxican is a strong nsaid..as soon as his stomach started to hurt they put him on prilosec and discontinued the meloxican..he had taken it for a year. The mri is being done for the liver and for the arthritis to see what damage he has. Oh boy..I also want to add he gets fever blisters ans styes constantly...so I'm not sure what that means? So sorry for all the questions..sorting through this is difficult and being new to celiac I have no clue. Thanks for your patience and wisdom..the support is much needed!
  13. This is how all this started I thought it was growing pains turned into a psoriatic arthritis diagnosis...then meds which messed with tummy so give Dr who tested him for celiac and tested positive on 2tests. They want a biopsy and mri of his spine knees and ankles...I think all his issueschave links to celiac.I dontb fully understand all this it's so new.
  14. Ok..I've been doing research and dealing withnother things. Thank you for all your input. Today I asked what actually was positive and what they were looking for in a biopsy.his GIG was normal his RIGA was elevated endometrial was positive his immunoglobulin was normal..I have no clue what this means. I'm so not sure if I want to biopsy him I have to call the scheduler tomorrow..what if it times back negative and yet he still has it?or will get it. He has psoriatic arthritis, allergies, his liver sonogram came back with a fatty liver and inflammation..hence a mri plus bc of the arthritis they want a mri of spine knees and ankles.this is driving me nuts!I want to do the right thing.my insurance stinks our shop is in the red..money is a issue.please I have 50 different opinions.I understand both sides the benefits of testing and not wanting to test go gluten free and not look back...ugh tearing me up...help
  15. I dont know how this all works forums are not my usual thing. My son was diagnoised with psoriatic arthritis over a year ago, put on meloxican. He started having stomach pain about a month ago. sent us to a GI, she did a sono and found a fatty liver and inflammation. So they want to do a MRI she also ran a full celiac panel. Today i found out that the panel came back positive. Now they want to scope and biopsy him. plus do the MRI.. Our insurance is horrid. However several people have said i do NOT need to do this invasive test on a 9 year old with a positve blood test. That he has celiac and i should go Gluten free.. which seems like a overwhelming task. My husband does not want him scoped and i am not sure what to do and if the end result would be any differant. Please advise , im just really having a hard time with this. Thank you so much in advance!!