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

Shocking Story #2

concerned-mom061

Recommended Posts

gfp Enthusiast
gfp
Posted
Oops! :lol: Didn't mean to pry!

Well you really weren't to know... I just thought people should realise why I was being evasive... I guess everyone understands if i put it like that :D

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

Celiac.com Sponsor (A8-M):


  • Replies 109
  • Created
  • Last Reply
Nancym Enthusiast
Nancym
Posted

I'm getting a bit confused over the story, is the child a celiac/gluten sensitive? This might be something to bring to our local celiac organizations. Was a good diagnosis for the child ever received?

What a story! I'm sure that the public would be very interested in hearing the details should you ever wish to share the entire story. This is every families worst nightmare.

concerned-mom061 Rookie
concerned-mom061
Posted
  • Author
I'm getting a bit confused over the story, is the child a celiac/gluten sensitive? This might be something to bring to our local celiac organizations. Was a good diagnosis for the child ever received?

What a story! I'm sure that the public would be very interested in hearing the details should you ever wish to share the entire story. This is every families worst nightmare.

Well, I have all of her lab work that I recieved this past Friday at the hearing. After reviewing the records, I feel a lawsuit would be so easy to win!! I don't know how to diagnose celiac, but my daughter has a lot of tests that came back favorable for celiac. I have no problem sharing the whole story.....I just wasn't sure if everyone else wanted to hear it. I am planning on going to the media early this week. If you'd like more information then e-mail your phone number, and I'll call you. It would take to long to write it all. I do feel Celiac moms and dads need to be aware!!!!

Bree

gfp Enthusiast
gfp
Posted
Well, I have all of her lab work that I recieved this past Friday at the hearing. After reviewing the records, I feel a lawsuit would be so easy to win!! I don't know how to diagnose celiac, but my daughter has a lot of tests that came back favorable for celiac. I have no problem sharing the whole story.....I just wasn't sure if everyone else wanted to hear it. I am planning on going to the media early this week. If you'd like more information then e-mail your phone number, and I'll call you. It would take to long to write it all. I do feel Celiac moms and dads need to be aware!!!!

Bree

Bree, if I can suggest start a new thread specifically on the tests...

Also we can offer you endless help on coping with celiac, it seems so hard at first and its really not...

Try and keep a thread on each type of question (gluten-free living, test results etc.) and you get better responses that way.

After what you've been through we will all pull together I'm sure and help you understand celaic and how to cope...

Incidentlally.. before you do a press thing... make sure you throw out your "contaminated" stuff.. ;) it won't hurt publicity wise... and it will really help you coping wise!

You know you might think of being tested yourself as well...

Judyin Philly Enthusiast
Judyin Philly
Posted

Bree

After I was dx'd with celiac disease, my chiro dr. came and helped me go through my entire kitchen.

She took all the food that we could not eat any longer and took it to her church 'needy' pantry so that the food would be used by someone of need. This might be good for the publicity too..

I don't know if you know of anyone near you, like in a local support group, who might help you do this. It was easier when i started the diet to just have things I could eat to 'grab' and cook. She had me eat only organic (or non processed or seasoned) meats, fruits, vegatables, apple/eve cranberry juice potatoes and rice for 4 days till i could get a handle on the diet and what to look for in the labels. She also went through the gluten-free trader JOes shopping list with me and told me the good products to get. There might be a whole foods by you also.

I hope you can get someone local to help you. PM me where you live and i'll try to find a local support group.

Judy

plantime Contributor
plantime
Posted
Both of you....

If you want I will set you up a website where you can help share this with other moms and also post things like cases you find oput about....

I hope both of you keep up the good work after you get your kids back... so if either of you or both want I can make you a website (obviously for free - hope I don't need to say that) where you can post items to help out people I the same situation....

Just drop me a pm and I can make one in a few hours and help you get started.

I think a website for this cause would be an excellent idea! It would give other parents going through this a place to go for advice and information.

jerseyangel Proficient
jerseyangel
Posted
I think a website for this cause would be an excellent idea! It would give other parents going through this a place to go for advice and information.

I think so, too. Steve, what a generous offer! :)

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

Celiac.com Sponsor (A8-M):


concerned-mom061 Rookie
concerned-mom061
Posted
  • Author
I think so, too. Steve, what a generous offer! :)

Yes....I think a website would be awesome. Though, I've gotten some awesome advice from this site as well as others, it certainly would have been nice to have just one website to focus on.....not that I wouldn't still come here and those other places..it's just that I had so little time and going b/t this and that one became hard at times. Let me know what I can do to help.

As far as the press goes....if any of you want to give me some ideas on what I should say about Celiac and it's history of being undiagnosed.....then just let me know. I am new to this whole thing, and I can take all the advice you guys are willing to give. I am so grateful to you all!!

I am from Leesburg, Georgia....right outside of Albany. I am working on getting the court report now so that it may be used to help others. I can tell you that the judge dismissed the whole case, w/out anyone from my side, including myself and the father, ever being heard. The judge threw the well known so called "hired gun" for DFCS, Ms. Louisa Lasher, completely out of court and stated that she was not welcome back in her court room. This was a huge victory for the wrongly accused MSBP moms. Although it took 30 days and 3 hearings, my side never had to put up a fight, for the judge stated that no evidence was found that indicated that I had hurt or neglected my daughter in any way!! I'll have the whole story for anyone who wants to hear very soon.

As far as me being tested.....honestly, I can't afford it right now. B/t lawyer fees, normal living expenses, and the medical care I do recieve for my hypertension, I don't have any extra money to do any extra testing right now. I will one day, though. I have many symptoms....but they are mild. It's my daughter and my little brother that I worry about. Also, my mother died last year after fighting an unknown illness. After I was first told about the suspicion of celiac disease in my daughter, I did research and found that my mother had just about every symptom, as well as most of her sisters. I am trying to get one of them to get tested now so it could help w/Kylies' case as well as theirs.

Kylie just turned 1 year old, and I've been told very few infants are diagnosed w/celiac. However, she has so many things that points to celiac. I will get all of her information together, and maybe one of you could help me. Plus, we go to the doctor tomorrow to see what our next step is.

Bree

Nic Collaborator
Nic
Posted

Bree, just in case this of some interest to you, some other forum members have been discussing how to get Oprah to do a show on Celiac. A story like yours might be a good lead in to how undiagnosed and disrespected an illness Celiac is. You may not want to go "that" public but I thought I would throw it out there.

Nicole

GFBetsy Rookie
GFBetsy
Posted
As far as me being tested.....honestly, I can't afford it right now. B/t lawyer fees, normal living expenses, and the medical care I do recieve for my hypertension, I don't have any extra money to do any extra testing right now. I will one day, though. I have many symptoms....but they are mild. It's my daughter and my little brother that I worry about.

After I was dx'd with celiac disease, my chiro dr. came and helped me go through my entire kitchen.

She took all the food that we could not eat any longer and took it to her church 'needy' pantry so that the food would be used by someone of need. This might be good for the publicity too..

I don't know if you know of anyone near you, like in a local support group, who might help you do this. It was easier when i started the diet to just have things I could eat to 'grab' and cook. She had me eat only organic (or non processed or seasoned) meats, fruits, vegatables, apple/eve cranberry juice potatoes and rice for 4 days till i could get a handle on the diet and what to look for in the labels. She also went through the gluten-free trader JOes shopping list with me and told me the good products to get. There might be a whole foods by you also.

concerned_mom,

If you have symptoms, you don't have to have a formal diagnosis before going gluten free. After all, people make dietary choices all the time without medical consent (how many of your friends talked to a doctor before going South Beach or Body for Life or whatever?). And, if you decide just to make the house gluten free, you'll be giving your little brother a chance to heal as well. Of course, he's old enough to cheat on his diet at school, and you won't be able to control that, but you might be able to get him to agree to a trial run. Check out the book "Saving Dinner" by Leanne Ely for great (and easy) dinner recipes. Not all of the recipes are gluten-free, but a lot of them are (or else they are very easily modified).

Congratulations again on the wonderful outcome of your trial . . . . Glad to hear your judge's reaction!

Betsy

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,742
    • Most Online (within 30 mins)
      7,748
    MistyMoon
    Newest Member
    MistyMoon
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Theresa2407
      How Come Gluten Didnt Bother Me In Italy

      By Theresa2407 · Posted

      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Possible celiac - need advice

      By Scott Adams · Posted

      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac or not??

      By Scott Adams · Posted

      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      How Come Gluten Didnt Bother Me In Italy

      By Scott Adams · Posted

      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.