Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Rant Concerning Drs

Worriedtodeath

By Worriedtodeath
in Doctors

Recommended Posts

Worriedtodeath Enthusiast
Worriedtodeath
Posted

So I

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

Celiac.com Sponsor (A8-M):


moldlady Rookie
moldlady
Posted

Wow, WTD,

IT seemed like your post was cut off near the end. Did you have more to say/rant? I agree with you 100% and I don't think things will change any time soon. There is too much money to be made only treating symptoms and not the disease.

That is why even if we are cured we must alert others to what they can do to be well and have their families well.

Good for you for finding out these things and sharing. It is frustrating when it seems as though no one believes you and the docs think you are nuts. Don't worry, we've all been there and I've found that 1 out of 9 WILL listen and try to be better. Don't give up. But, do move on when someone does not want to listen..... including docs.

There are many docs that I did not go back to because I could read it in their eyes that they just didn't get it or did not want to risk it and lose their license or money. Bottom line!!

Some day your children will THANK YOU for what you have done for them!!

ML

Worriedtodeath Enthusiast
Worriedtodeath
Posted
  • Author

IT did get cut off but I believe I was thru. LOL!

we are finally on the right path but only because I put my foot down and insisted this is what we are going to do. The ped backs me up but not to the extent of crossing hairs with the gi.

It's just every day on here we see one more mom with a negative result, a sick baby, and a gi that refuses to tell them to remove gluten. I run into people now all the time who have kids with the same problems mine do and their drs are justing throwing drugs at them and the ones who made it to a gi are told it's nothing. Aren't my freshly made, non chemical, non gluten, low sugar "junk" better for my kids than a prepakaged wheat filled sugar filled twinkie with a shelf life of 20 yrs? Even though the diet can be daunting, overall isn't it better for us? Don't most find themselves eating less proccessd food, fast food, and spend more time making stuff in the kitchen? Don't you tend to graviate toward more veggies/fruit and less "junk". Even my cakes and cookies are better nutrionally than what I could buy with wheat. SO why are drs so loathe to tell people to eat gluten-free? Other than convience and the taste of wheat, what are we really missing in the face of better health for our kids? OR has the dramatic improvements been so much for us that I just don't get drs refusing to recommend this diet.

God knows if I didn't have to contend with the gluten thing, I would be buying the junk off the shelf but now I make everything basically except for some gluten-free crackers and cereals. So far the diet has been way healthier and far better than how we used to eat.

I just don't get how when faced with a sick child that appears for all intents to have Celiac, how a dr can say stay on wheat when the results come back "negative"? It's like they are saying your tests are negative so you should be well and we are just going to ignore your not being well. ????

Stacie

home-based-mom Contributor
home-based-mom
Posted
I just don't get how when faced with a sick child that appears for all intents to have Celiac, how a dr can say stay on wheat when the results come back "negative"? It's like they are saying your tests are negative so you should be well and we are just going to ignore your not being well. ????

Stacie

I love this rant! My guess is that after umpteen years of education they just can't wrap their heads around the fact that such severe symptoms can be made to completely go away by a simple dietary adjustment. But I think if I took my child to a doctor and described the aches and pains and half-hour journey of food from mouth to diaper, and a doctor told me "that's not possible" I would totally lose it. I don't like to be accused of lying and I think when doctors brush parents off, that's basically what they are doing! :angry:

There are med students on this site - hopefully they can educate their classmates and the word can begin to spread. For what it's worth, I have seen doctors almost literally bite their tongue rather than say something in front of the patient against another doctor. Professional courtesy or some such. But based on what you have said, my guess is that your pediatrician will not refer another child to that gi for further testing - especially if celiac is suspected!

Worriedtodeath Enthusiast
Worriedtodeath
Posted
  • Author
But based on what you have said, my guess is that your pediatrician will not refer another child to that gi for further testing - especially if celiac is suspected!

To make it worse, we asked for this dr!!!!! Some of the drs in her practice refer to him and perfer him over the one in town. We drove 1.5 hrs to get to him and interviewed him for over an hour! I asked him every question about Celiac, realibility of the test, you name it..... He gave all the right answers - test was unrealiable, blood even worse, testing neg didn't rule out Celiac, etc. He answered everything right. My hubby even grilled him with the tuff questions of why even bother, will not getting a positive change our direction.... you name it we asked. Even told us how to go gluten-free and that we should based on her symptoms. When the results came out, he completely backpedaled and did a complete turn around on his answers. He now won't even return our calls. Our ped is wondering when we will have a follow up and I'm thinking for what?? To be told that our child has multiple food intolerances which just happen to be wheat/rye/barely/oats (that's what the nutrionist told me since it couldn't possibly be Celiac)?????

Stacie

dbmamaz Explorer
dbmamaz
Posted
To be told that our child has multiple food intolerances which just happen to be wheat/rye/barely/oats (that's what the nutrionist told me since it couldn't possibly be Celiac)?????

Not that I dont totally appreciate your rant, but my celiac panel came back negative, but my regular allergy testing came back positive for wheat, barley and malt, and milk. Well, and every meat and carrots and garlic and . ..oh, nevermind. I'm eating 20 foods and I swear trying to introduce cukes and lemon juice gave me symptoms. But the point is, its possible to be allergic to all the gluten foods, without having celiac.

I hope your child is doing better on the diet.

Worriedtodeath Enthusiast
Worriedtodeath
Posted
  • Author

HI!

We actually thought she had allergies and we had her tested for all main allergies by skin test and then the allergist had us do food trials reintroducing each item after a month of regular normal bm's. He is 100% refusing to budge and say she has any kind of intolerances or allergies because of the length of time it took for her to react to the food. He said if she had a reaction from the moment of ingesting until even as far as 4 or 5 days later he would have considered it and at least thought intolerances. We did each food for 3 weeks. It was when we had been on sliced bread for 2 weeks and the bms started back that we had to go to the ped gi(which took quite awhile) who then decided after a negative biopsy(100 days of wheat) that well she must have food intolerances or allergies and our allergist used the wrong tests and the ped was clueless or she would have caught those. They also said the food trials didn't mean much as that was then and this now. (We had only been on food trials 5 months at that point)

So it still amazes me that if this is the way I'm being done and other moms are going thru the same kind of stuff with ped gi's, then a whole bunch of teachers are going to have to have awhole lot of bathroom passes if we follow the gi's advice and keep on feeding them gluten.

For some reason, I got mad the other day. I reckon my hamburger buns falling set off a nerve. LOL

Stacie

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

Celiac.com Sponsor (A8-M):


Worriedtodeath Enthusiast
Worriedtodeath
Posted
  • Author

Oh she's doing great now and is gaining weight!

Archived

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

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


  • Member Statistics

    • Total Members
      131,185
    • Most Online (within 30 mins)
      7,748
    wmkoehler
    Newest Member
    wmkoehler
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      Is Toblerone Gluten-Free?

      By Sheila mellors · Posted

      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...