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

  • 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. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,545
    • Most Online (within 30 mins)
      7,748
    PatientOne
    Newest Member
    PatientOne
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.