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

Should All Celiacs See Endocrinologists


es2443

Recommended Posts

es2443 Contributor

My mom is wondering whether I should be seeing an endocrinologist. I feel fine (no problems other than reactions to gluten and soy protein) but she asked me yesterday if Celiacs go to them. As a precaution should I see an endocrinologist?


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Unless you have symptoms of hypo- or hyper thyroidism, or chronic fatigue which could indicate problems with your adrenal glands as well, or signs of diabetes, I see no good reason for seeing an endocrinologist.

2kids4me Contributor

As said in previous post, no unless you have an endocrine issue.

Celiac is an autoimmune condition - not an endocrine issue. Autoimmune conditions do occur more commonly in someone with another immune mediated illness, but it doesnt mean it will happen.

My children see an endocrinologist, but they both have endocrine issues - the celiac is addressed by a GI doc and he is aware of the link bnetween celiac and other conditions so he consults with the endo if he has questions about symptoms.

A GP can also test for conditions like thyroid, adrenal or diabetes and refer you if needed.

ShayFL Enthusiast

And even with symptoms, I found both Endocrinologists I saw COMPLETELY USELESS. Worse than regular doctors by far. When I was extremely hypthyroid and went to one, he said my labs were "normal" so I was fine. It was just stress. When I asked him why my body temperature was not even 97. He said you run cold. If you are every 98.6 then consider yourself to have a fever. I will not see one again. My doctor now knows more about our endocrine glands than those so called "specialists". My 2 cents....

Tim-n-VA Contributor

As usual with these anecdotes, we have only a short summary of the discussion but if your assessment of the doctor as a bad one is based only on his not worrying about a body temperature not being 98.6 than he is probably the well informed one.

An interesting article on this is at:

Open Original Shared Link

ShayFL Enthusiast

Those charts do not really tell us anything. Of course different studies will report different findings. Of course.

What I want to know is the status of every single person's thyroid in those studies. They say xxxx "healthy individuals". Yeah right!! What is "healthy"??

If you have dealt with hypothyroid and correlated it to your body temperature. And then with adequate treatment saw that closer to 98.6 gets rid of symptoms....you would understand. When my temp is 97 I cannot move from the bed. When it is above 98 I can move. When it is 98.6 - 99 I feel "normal". And this is the testimony of many hypothyroid patients. That doctor was bad. If not for his lack of text book experience, his clinical. There is a reason that hypothyroid individuals feel "cold" all of the time. They are.

Tim-n-VA Contributor

What the charts tell us is that there is no reason to accept as absolute fact that 98.6 is some special value. We don't know the status of every person's thyroid in any of the studies to include the ones years ago that lead to the establishment of 98.6 as normal. That is why it is the average temperature. Average is a statistical measure of the central tendency of the population. It is not a standard to where any deviation is significant. Both the general population and the medical profession sometimes look at it that way.

I stand by my conditional statement (that's a statement with an if) in my earlier post.


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Look Im not going to argue with you. 97 degrees isnt normal. Especially if you are freezing in the heat of the Florida Summer. Male doctors tend to dismiss female patients. And I see a gender biased response in here too. When your temperature used to run close to 98.6 and it drops to barely 97 and you are freezing all of the time and your Endocrinologist says it is normal and if you are 98.6 you have a fever, he my friend is a complete and utter idiot. Especially when all it took for a "real doctor" to do was talk to me and assess my symptoms. Prescribe replacement therapy and wait for the good results. Which happened.

Most Endocrinologists are useless. You can go to one, but you have been warned. A good doctor that will actually listen to you is worth more than a million so called specialists.

Tim-n-VA Contributor

The possible link is that Celiac is an autoimmune disease. There are varients of thyroid disease and diabetes that are also autoimmune conditions. Therefore, a celiac should be monitored for thyroid and blood sugar but that doesn't mean an automatic referral to an endocrinologist.

It does sound as if ShayFL had a bad experience with an endocrinologist but that doesn't mean they are all worthless and that no one should see one. That is just dangerous advice and the only reason I've participated in this thread. Otherwise this thread could have end with the good advice from Ursa Major and 2kids4me.

NicoleAJ Enthusiast

There are reasons why some celiacs would want to see an endocrinologist. I was referred to one by my GI who is a celiac specialist because my osteopenia continues to get worse even with aggressive treatment. My husband and I are also thinking about children, so we need to know how long I should be off of osteopenia treatment before trying to conceive. These are questions that most GIs and PCPs are not prepared to answer.

ShayFL Enthusiast

It was never my intention to offend anyone. I apologize to anyone who has been offended by my verbiage in this thread. I have asked the moderators to remove any offensive posts. Perhaps my discontent with Doctors should be left off of this forum.

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. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    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

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.