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Booghead

Disappointing Doctors Visit

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Has anyone mentioned yet that BENEFIBER is NOT really gluten free ? :ph34r:<_<:blink:

And yet, her DOCTORS have her taking it....for the loveofmike. :blink::angry:


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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One last thing about thyroid/gluten connection. PLEASE read this from Thyroid.com

What happens in gluten intolerance is:

The body lacks a particular digestive enzyme, intestinal glutaminase, that can digest gluten products

Gliadin antibodies are produced as the body's reaction to the presence of the gluten

The villi in the bowels become flattened, making them less able to sweep along waste products and filter out toxins

The bowel, in a state of irritation, becomes more permeable, allowing larger proteins to pass through, which further aggravates the "allergic" response

The body responds by producing more histamine, seratonin, kinins, prostaglandins, and interleukins -- which can trigger or aggravate autoimmune and inflammatory conditions

The incidence of full-scale gluten intolerance has been found to be substantially higher in people with autoimmune thyroid disease. A study reported on in the February 2000 issue of Digestive Diseases and Sciences found that undiagnosed celiac disease may be part of the process that triggers an underlying autoimmune disease. In their findings they wrote: ""We believe that undiagnosed celiac disease can cause other disorders by switching on some as yet unknown immunological mechanism. Untreated celiac patients produce organ-specific autoantibodies."

Of perhaps greatest importance to thyroid patients, those researchers found that the various antibodies that indicate celiac disease - organ-specific autoantibodies (i.e., thyroid antibodies) -- disappear after 3 to 6 months of a gluten-free diet.

The researchers suggested that patients with autoimmune thyroiditis "may benefit from a screening for celiac disease so as to eliminate symptoms and limit the risk of developing other autoimmune disorders."

See why it may help to see an ENDO?

Okay, I'm all out of ideas.... :)


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Mom read all your posts. She thinks that I should probably stay on a gluten free diet. I am still going to eat gluten for the weekend (I want to have a more conclusive trial then 2 meals). I have noticed that I didn't eat any gluten today, yet. It is so strange how used to gluten free I am. I actually prefered no gluten when picking out my lunch, I could have had a glutenous snadwich but I chose ham and potato chips (gluten free) instead. I am probably going to eat a gluten filled dinner. Do I need more then one gluten filled meal a day to get a good test?

Mom is still going to make an appointment with our family doctor (not the one I mentioned above) who has been through multiple appointments with me. He knows my history. She doesn't want to just pick an endo because of how badly we got burnt when we just picked a GI. It is so frustrating, all my life I was taught to believe doctors and listen to doctors and some of them are such quacks. My family doctor is very good and will hopefully have some insight on hypothyroids, not to mention be able to refer us to a good Endo.

Thanks for all the words of wisdom. One last question: Does anyone get "burning" in their stomach after eating gluten. It is in my stomach, literally my stomach. It feels like heartburn but lower. Just wondering if anyone gets this symptom, it never happened until I went gluten free. B) Peace out homies.

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Mom read all your posts. She thinks that I should probably stay on a gluten free diet. I am still going to eat gluten for the weekend (I want to have a more conclusive trial then 2 meals). I have noticed that I didn't eat any gluten today, yet. It is so strange how used to gluten free I am. I actually prefered no gluten when picking out my lunch, I could have had a glutenous snadwich but I chose ham and potato chips (gluten free) instead. I am probably going to eat a gluten filled dinner. Do I need more then one gluten filled meal a day to get a good test?

Mom is still going to make an appointment with our family doctor (not the one I mentioned above) who has been through multiple appointments with me. He knows my history. She doesn't want to just pick an endo because of how badly we got burnt when we just picked a GI. It is so frustrating, all my life I was taught to believe doctors and listen to doctors and some of them are such quacks. My family doctor is very good and will hopefully have some insight on hypothyroids, not to mention be able to refer us to a good Endo.

Thanks for all the words of wisdom. One last question: Does anyone get "burning" in their stomach after eating gluten. It is in my stomach, literally my stomach. It feels like heartburn but lower. Just wondering if anyone gets this symptom, it never happened until I went gluten free. B) Peace out homies.

I am so glad to hear your mom is supportive of you staying gluten free. I by no mean have that much experience with this, and I know someone will provide more info on how much gluten it takes. I do know after reading several posts that everyone is different. Also, that the longer you are gluten free, the more noticeable your symptoms will be and very likely to get worse when you have gluten. If I remember correctly, you have not been gluten free a very long time, so you may or may not get the definitive response you want.

As far as doctors go, it is very disheartening to find this out. However, just be thankful you are learning this at such a young age. There are lots of good doctors out there. It just takes time and trial and error to find them. Just always remember to be an advocate for yourself and trust your body. One thing that helped me was I started tracking a couple of things. Migraines were one. I didn't add food into that unfortunately. I did note hormones, weather, stress, etc though. If you have any easy to identify issues, you may start tracking it. Like maybe your energy level. You can take that to a doctor to help explain and show your issues. Its hard to remember, but it is very useful.

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Endos are better at treating diabetes than thyroid problems; I've been to over 5 different endos and unhappy with all of them. They are close minded individuals and only treat based on lab results,not symptoms and my thyroid issues were undertreated for several years. I recommend finding a holistic-based NP or MD......they usually are not covered by insurance, though.

Idiot doctor, yes :angry: ...BUT YOU just TOLD US in a post a few days ago that YOU FELT SO MUCH BETTER after going gluten-free! and felt lousy after being glutened. Right? So, gluten IS a problem for you.

I had both hypothyroid and Hyperthryoid symptoms in the 3 years I was undiagnosed. I felt like crap and they put me on meds and I still felt like crap. It was the gluten. Now, my thyroid functions NORMALLY. I take NO meds for it.

Gluten/celiac is OFTEN linked to thyroid disruption.

How could he have misread the thyroid panel AND the celiac panel??? :blink: . This guy is useless.

Your positive response to the gluten-free diet is more reliable than he is.

A GP is not going to be helpful with endocrine system disorders, hon.

You need an endocrinologist and I would get copies of the celiac panel and all your blood work and take it to that doctor. Tell your MOM you need verification. Any endo worth her salt will run the tests for thyroid dysfunction again.

I use CAPS for emphasis when I write, I am not yelling at you sweetie :) I want you to feel better!!

Hugs and good luck, Irish

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Endos are better at treating diabetes than thyroid problems; I've been to over 5 different endos and unhappy with all of them. They are close minded individuals and only treat based on lab results,not symptoms and my thyroid issues were undertreated for several years. I recommend finding a holistic-based NP or MD......they usually are not covered by insurance, though.

I'm very sorry you had such a bad experience with so many endos. That's terrible. Hopefully, you found a doctor who helped you.

My own experiences with doctors makes me leery of them too, believe me. :rolleyes:

But, in fairness, your statement that they "are better at treating diabetes than thyroid problems" and are "close-minded individuals" is a generalized opinion of an entire specialized practice and not exactly true. Their practice encompasses all endocrine system disorders. Yes, finding the right one is important, as you suggest. This young girl has not had much luck with her GP (or any of her doctors for that matter). That is why we all recommended an endo as a starting point.


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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Booghead, you might find it informative to check out the book "Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal" by Datis Kharrazian. It's a $10 paperback online. He does a good job of describing the connection between gluten and thyroid issues. Good luck.


  • self-dx gluten-sensitive 2007 but did not take it seriously
  • dx autoimmune Graves hyperthyroidism 9-7-11
  • second opinion doctor confirmed autoimmune hyperthyroid dx, suggested possible autoimmune thyroid-gluten sensitivity connection
  • medication-induced hyperthyroid remission 11-4-11
  • lab test dx gluten, casein, ovalbumin, and soy sensitive 12-15-11
  • taking diet seriously now, strict GFCFSF diet...

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Endos are better at treating diabetes than thyroid problems; I've been to over 5 different endos and unhappy with all of them. They are close minded individuals and only treat based on lab results,not symptoms and my thyroid issues were undertreated for several years. I recommend finding a holistic-based NP or MD......they usually are not covered by insurance, though.

It does suck that you have not had much luck with the endocrinologists. I've had three. First one was pretty good, second not so good and my current one is GREAT! With her help, I have got on a good thryoid medication regimin, she treats my symptoms and will order any blood test I want(within reason). My endo is the one I asked to order the celiac blood work for me. She was the only doctor I was seeing on a regular basis because at the time I hated my PCP. She is not in my insurance network so I have to pay a much higher copay, but I'm willing to suck it up to keep her as my endo. There are good ones out there so anyone needing referral to one, don't be discouraged. As with any doctors there are good and bad ones and you also need to find one that "fits" with you.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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