Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Update On Our Son

VydorScope

Recommended Posts

debbiewil Rookie
debbiewil
Posted

So glad to hear he's doing so well. I did know he had ear/hearing problems, so very glad that has been resolved. And keep those wonderful avatar pictures up to date. He's so precious!

Debbie

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


TCA Contributor
TCA
Posted

WOW vincent!!! I've even talked to you on the phone and I didn't realize about Timmy's hearing!!!!! What a wondeful praise!!!!!! I'm so glad he's doing so well. You never know what trials we my face, but isn't it wonderful to look back and see how God's carried you through it all? thanks for sharing all of this!

Hugs!

Tanya

VydorScope Proficient
VydorScope
Posted
  • Author

Thanks all, I did mention his hearing way back when he was getting ready to go under for the surgery but not since then, hence why I was asked for the update I am sure! :)

Judyin Philly Enthusiast
Judyin Philly
Posted

:o I had NO idea what all you've been through!!

Guess since i've been on for a year, just thought he had sever food allergies. Where have i been to have missed all the back ground. He is so blessed to have such 'terrific' parents who won't give up...bless your little family and prayers for more answers..

hugs

Judy in PHilly

VydorScope Proficient
VydorScope
Posted
  • Author

Well Because we found this site after getting him gluten-free he has been on the upswing the entire time this community has known him.

xander42204 Newbie
xander42204
Posted

Wow- what a truly inspiring story! Best of luck to you and your family!

mommida Enthusiast
mommida
Posted

Wow! I think I remember your first post. Isn't it amazing how much this group has bonded? I remember the day Tymber was having his ears done and having my kids pray for him. Thank s for the update I will tell my kids the good news.

L.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


VydorScope Proficient
VydorScope
Posted
  • Author
Wow! I think I remember your first post. Isn't it amazing how much this group has bonded? I remember the day Tymber was having his ears done and having my kids pray for him. Thank s for the update I will tell my kids the good news.

L.

:blink: Gosh I hope it was a good post if you still remember it!! :blink:

mommida Enthusiast
mommida
Posted

If I remember it was a newbie post looking for help. :D

L.

VydorScope Proficient
VydorScope
Posted
  • Author

Wow I just looked it was on May 13 2005, 07:24 AM! Tim was 21 mos old, not 18!!! Dang it my memory stinks!!! :angry:

Anyways you did drop in to that thread, and nini, and others... 3 pages long.

Cheri A Contributor
Cheri A
Posted

I'm so glad that Timothy is doing so much better! I used baby signs with all of my kids. My son was a very late talker and he used them the most!

VydorScope Proficient
VydorScope
Posted
  • Author
I'm so glad that Timothy is doing so much better! I used baby signs with all of my kids. My son was a very late talker and he used them the most!

Yea its a great tool, we actaully useing real ASL, or well as close to it as he can manage. His dexterity is not up there yet. Learning a second language, not matter which one, is sposed to be great for develpoment, so we plan to keep it up. Though latly we been a bit lazy :lol:

VydorScope Proficient
VydorScope
Posted
  • Author

Well we had the "IEP" meeting today where they went over the results. If you remember back in Jan/December he was doing poorly and seeming to not improve at all. They retested him in march, and based on those tests he was still significantly delayed, but much improved. Well the newest test results are in, and he is no longer classified as disabled! He scores were border line, which is a huge improvement, and he continues to gain ground at a very fast rate. They said that we should watch him and call them again for retesting if he seems to level out, but as long as he continues to gain at the rate he is going we should have no further issues with speech and language with him. In the other areas, for example fine motor control, he was at or above age level.

The only note of interest they did talk about was his activity level was very high for his age level, they did make sure to point out several times that as his age there is no reason to worry about it, but it is something that will have to be watch as he ages.

So when he turns three he will "graduate" out of the special ed program and not return. Kristi and I plan to ask his speech therapist if we can make some out side arrangement to keep her on a bit longer to help get him that last little bit, but if we can not do that we are not concerned. He is speaking is full sentences now, for example "Can I have that?", its still touch and go with that, but slowly becoming normal.

So thats all we know for now!

AndreaB Contributor
AndreaB
Posted

That's great news Vincent. You and Kristi have obviously worked hard with him, it's great that it's paying off now. He must be so excited to be able to communicate more also. And with his energy level up I assume that means his diet has had a definite impact on that. :P

jerseyangel Proficient
jerseyangel
Posted

Fabulous news! Just wonderful--you both must be so pleased and relieved. :)

floridanative Community Regular
floridanative
Posted

Vincent - I did not know about Timothy's hearing problems. That is such awesome news about how well he's doing now! Prayer is a powerful thing....and having great parents doesn't hurt either! Good for you and your wife and the little guy of course!

VydorScope Proficient
VydorScope
Posted
  • Author

Thanks all!

And with his energy level up I assume that means his diet has had a definite impact on that. :P

No one can argue the impact of the diet. It literly saved his life, even the GI doc said all his numbers show it. While he does not have perfect tradtional dx for celiac disease, theres no question his health has had a remarkable turn around.

The last year with him (he was DX'd celiac disease when he was 21 months old not 18, ops :unsure: ) has been nothing but improvement apon improvement.

penguin Community Regular
penguin
Posted

That's awesome, Vincent! Make sure you don't let him forget his signs! Spanish was my first language (well, along with English, but my spanish was better) and I forgot it by the time I was 5 because nobody was around to talk to me in Spanish anymore :blink:

Although, since he's already had exposure to a second language at such a young age, it will probably be easier for him to learn other languages, signed or spoken :)

Guest BERNESES
Guest BERNESES
Posted

Vincent- That is SOOOOOOO great!!!!!!!!!!!!!!!!!!! Yippee!

chasesparents Rookie
chasesparents
Posted

Congratulations to you and your family!!! I am sure you are relieved that all is going well now !!!! :D

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    2. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
    3. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      It could be a fructan intolerance? How do you do with dates? https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    4. Lkg5
      - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

      Thank’s for addressing the issue of mushrooms. I was under the impression that only wild mushrooms were gluten-free. Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative. In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken. Major mistake!
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      my IGG is 815 IGA 203 but tTG-Iga is <0.4!!!!!!!!!!!!! oh my god- 13 days of agony and the test is negative? I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has I am...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.