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

Idiot Doc Glutened Toddler W/sucker, Wimpy Mom Let Him


sillyactsue

Recommended Posts

sillyactsue Explorer

SSI sent my 2 year old to one of their doctors because they do not know enough about gluten sensitivity to make a decision about her eligibility. Through the whole visit I would make it about half way through a sentence before he would interrupt me. He didn't like it that no doctor had told me to put her on a gluten free casein free diet, even though her ped. and childrens hospital agreed it was the right thing to do. He would not except enterolab gluten sensitive/casein sensitive diagnoses. He also said that even if she has two genes for gluten sensitivity that they might be recessive genes and therefore not a problem. I told him her dad was diagnosed with Celiac and I have had to avoid wheat for years because of the problems it causes me and asked him if that wasn't a good indication that those genes were not recessive. No comment.

He is sending us to a gastro. at childrens (before it was endocrinoligist). As we were leaving he asked Aimee if she wanted a sucker. I never ever let anyone hand her food. But I wimped out, I said nothing, I froze. He is a doctor. He is suppose to have half a brain. I did tell him the only time she ever gets candy is when she gets a jelly bean for going potty in the potty chair. He gave me a look that was either,' you are a women therefor an idiot' or 'I'm testing you to see if she's really gluten free and you are failing.'

An hour and half later she had diarrhea. Again two hours later and she had a runny nose and had to have allergy med. to be able to sleep.

aaaauuurrrghh


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



Celiac.com Sponsor (A8-M):



Guest Mtndog

I'm so sorry that this happened to you! that's just plain lame.... I much prefer women doctors. :D

dahams04 Apprentice

Is Celiac considered a disability? I was thinking about going this route for Hunter but questioned the disabilty part..?

queenofhearts Explorer
SSI sent my 2 year old to one of their doctors because they do not know enough about gluten sensitivity to make a decision about her eligibility. Through the whole visit I would make it about half way through a sentence before he would interrupt me. He didn't like it that no doctor had told me to put her on a gluten free casein free diet, even though her ped. and childrens hospital agreed it was the right thing to do. He would not except enterolab gluten sensitive/casein sensitive diagnoses. He also said that even if she has two genes for gluten sensitivity that they might be recessive genes and therefore not a problem. I told him her dad was diagnosed with Celiac and I have had to avoid wheat for years because of the problems it causes me and asked him if that wasn't a good indication that those genes were not recessive. No comment.

He is sending us to a gastro. at childrens (before it was endocrinoligist). As we were leaving he asked Aimee if she wanted a sucker. I never ever let anyone hand her food. But I wimped out, I said nothing, I froze. He is a doctor. He is suppose to have half a brain. I did tell him the only time she ever gets candy is when she gets a jelly bean for going potty in the potty chair. He gave me a look that was either,' you are a women therefor an idiot' or 'I'm testing you to see if she's really gluten free and you are failing.'

An hour and half later she had diarrhea. Again two hours later and she had a runny nose and had to have allergy med. to be able to sleep.

aaaauuurrrghh

That's just awful. I went through several pediatricians for my kids because I hated the way they threw antibiotics at everything & only spent about 15 seconds "examining" them... this was just for routine childhood complaints; I can only imagine how frustrating it must be with the Celiac issues. I finally found a good one & hope you do too. Ask around...

Leah

2Boys4Me Enthusiast

My doctor only hands out stickers, never suckers. The one day when Ty was at the foot doctor, the nurse asked me if he could have a sucker. I said no, you probably don't have an ingredient list, and I'll need to check the ingredients. She said, yeah, it sucks to check ingredients, my daughter was just diagnosed with Celiac. Yes, I said, that's what Ty has. She gave him some stickers instead. Now we always pass along info to each other. (Except her daughter's 30 and Ty's 6.)

I can't believe he'd hand it to her without checking. Especially after you said she only gets Jellybeans. On the bright side, he is sending her to a GI. Did the other doctors suggest the gluten-free/cf diet because of family history? Does she have any symptoms? Even anemia or ADHD?

NoGluGirl Contributor
SSI sent my 2 year old to one of their doctors because they do not know enough about gluten sensitivity to make a decision about her eligibility. Through the whole visit I would make it about half way through a sentence before he would interrupt me. He didn't like it that no doctor had told me to put her on a gluten free casein free diet, even though her ped. and childrens hospital agreed it was the right thing to do. He would not except enterolab gluten sensitive/casein sensitive diagnoses. He also said that even if she has two genes for gluten sensitivity that they might be recessive genes and therefore not a problem. I told him her dad was diagnosed with Celiac and I have had to avoid wheat for years because of the problems it causes me and asked him if that wasn't a good indication that those genes were not recessive. No comment.

He is sending us to a gastro. at childrens (before it was endocrinoligist). As we were leaving he asked Aimee if she wanted a sucker. I never ever let anyone hand her food. But I wimped out, I said nothing, I froze. He is a doctor. He is suppose to have half a brain. I did tell him the only time she ever gets candy is when she gets a jelly bean for going potty in the potty chair. He gave me a look that was either,' you are a women therefor an idiot' or 'I'm testing you to see if she's really gluten free and you are failing.'

An hour and half later she had diarrhea. Again two hours later and she had a runny nose and had to have allergy med. to be able to sleep.

aaaauuurrrghh

Dear Sillyactsue,

Many doctors are morons. I have been through it all. The idiots told me my stomach problems were just nerves. Well, it all started when I was thirteen, and by the time I was 18, I looked anorexic because I was so thin. I even went to a teaching hospital, and all I got was doped up on meds and told I was mental. Fast forward a year and a half, and despite my tests showing nothing, begged my Primary Care Physician to see a surgeon for my gallbladder. It turned out the doctor I had previously had missed a gallstone I had when the extreme misery started! I had dry heaving spells, stomach pain, debilitating nausea, and colon trouble. The surgeon said it was a good idea with those symptoms being present and having had a gallstone previously to remove it. It was a good thing I did. They removed it just before it ruptured! My gallbladder was very inflamed and irritated. Go with your gut! Ignore those stupid idiots in lab coats with God complexes. I recently switched to a holistic physician, and she told me something I did not know. Just because you test negative for Celiac does not mean you cannot still be sensitive to gluten. So, I experimented, and the now I am gluten free and not having the acid reflux as much. If I even eat a cracker, I feel like a ate a netsuke dragon! No more of that! She also thinks I have yeast candida causing a lot of my other problems, like fibromyalgia, the nausea, and thyroid trouble. I am so resilient, I think I could outlast a cockroach in a nuclear blast! LOL! Hopefully I will be diagnosed and fix all this so I can live again!

Sincerely,

NoGluGirl

I'm so sorry that this happened to you! that's just plain lame.... I much prefer women doctors. :D

Dear Mtndog,

The doctor who missed my gallstone and put me one every single anti-depressant known to man was a woman! I trust no doctor anymore. My current doctor informed me I have obvious anger issues with doctors. WELL DUH! Who wouldn't after they have been through all I have at 23 years old? Idiots going to med school think they are smarter and know more than any of us on the planet. If that is the case, why do they end up killing so many people by misdiagnosis? Someone please tell these people that stupidity is not a virtue!

Sincerely,

NoGluGirl

sillyactsue Explorer
Is Celiac considered a disability? I was thinking about going this route for Hunter but questioned the disabilty part..?

A public school teacher that I worked for last year told me that children with allergies( I know this is not), asthma and other physical problems whose treatment is necassary and can get expensive get SSI. After hearing what we have been through with gluten sensitivity and casein sensitivity she thought Aimee might qualify.

The problem we are running into is that SSI does not know enough about her condition to make a decision. This doctor wants her to go to a gastrointerologist where he believes they will want to challenge her with wheat and do the scopey thing. But enterolab already told me that from her stool specimen they could see that she was not having malabsorbtion problems. They said the reason she was having trouble growing was because her calories were being used up by her immune system making antibodies to fight off gluten and casein. I talked to Phyllis, the nurse at enterolab and considering Aimee's lab results she said that it was not likely that giving Aimee two weeks or even two months of gluten would result in damage to the intestine. She said they would be looking for celiacs. But we already know she doesn't have a gene for it. Evidently the gene for gluten sensitivity has only been known about for about 10 years. And Dr. Fine of enterolab is da man. I am hoping that I will be able to give the next doc info about gluten sensitivity and pray that he listens and hears. If he/she wants to challenge Aimee with gluten I will refuse. As badly as we need ssi I am not willing to poison my baby unnecessarily.

Here is a thought though. Even if Aimee is unsuccessful in receiving ssi might it not be a good idea for those of you who have a need and have children with celiac/gluten(or some other genetic sensitivity) to apply for ssi. They like everyone else don't know about it because there is not enough public awareness. Why don't we help make them aware? Just a thought.

gloria


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748

    VanessaC
    Newest Member
    VanessaC
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.