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

Disappointing Doctors Visit


Booghead

Recommended Posts

IrishHeart Veteran

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:


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

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.... :)

Booghead Contributor

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.

MenHen Rookie

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.

Katrala Contributor

Other than going gluten-free, in what other ways did your diet change as compared to before?

Kristinade Rookie

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

IrishHeart Veteran

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.


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



Celiac.com Sponsor (A8-M):



TeknoLen Rookie

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.

Roda Rising Star

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,751
    • Most Online (within 30 mins)
      7,748

    Alison A
    Newest Member
    Alison A
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I agree with @RMJ, you have multiple positive tests so celiac disease is likely.  This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • trents
      One small study found that 50% of celiacs react to the dairy protein "casein" like they do to gluten. It is also common for celiacs to be lactose (the sugar in milk) intolerant, though that often disappears in time as the villi heal. About 10% of celiacs react to the oat protein "avenin" like they do gluten.
    • K6315
      Thank you so much Trents (Scott?)! I have started working with a dietitian and did a deep research dive as soon as I got the diagnosis. I am aware of what you mentioned in the first two paragraphs, and was not aware of anything in the third, so I am grateful for that information, and will talk to the dietitian about that. I think I was most interested in the withdrawal process - it gives me hope that, although I have felt unwell recently, I just need to be patient (not a strong suit). I have printed the article you sent and will look at it more closely. Thanks again!
    • Sandi20
      I really like Thorne!  I've researched thier products.  Thank you so much.
    • trents
      Welcome to the forum, @K6315! Gluten withdrawal typically lasts for a period of a few weeks. But there is a real learning curve involved in actually attaining to a gluten free dietary state. Much more is involved than just cutting out major sources of gluten such as bread and pasta. It's all the places that gluten is hidden in the food supply that is difficult to ferret out, like soy sauce and canned tomato soup, canned chili and canned pork n' beans, some "lite" pancake syrups, potato salad, flavorings, etc., etc. Gluten-containing grain products are hidden through alternate terminology and found in places you would never expect.  There is also "cross contamination" where naturally gluten free foods come into contact with gluten-containing grains during farming, transportation, storage and manufacturing processes. Then there is the issue of "cross reactivity" whereby you may be having gluten-like reaction to food proteins whose structure is similar to gluten. Chief among these are dairy, oats (even gluten-free oats), soy, corn and eggs. I am including this article that you might find helpful:   
×
×
  • Create New...