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

F'ed Up Doctor Appt Today


CruiseWriter

Recommended Posts

CruiseWriter Apprentice

Went to my PCP today.....not sure if she's a keeper but tired of going through doctors like socks. She made a big deal out of my going back to the shrink for depression and fatigue. I've only been to about ten counselors,so sick of therapy already. She said I don't have Celiac as the colonoscopy was normal but if I felt like sticking to the gluten-free diet,go ahead. I did lose a few pounds on the scale, but she was not impressed,although I have not lost anything in years. She said my edema is from all the weight I put on and I need to lose the pounds if I want to lose the edema. My heartbeat's very irregular (was irregular at endo's office two months ago,also) so I was given an ECG. Test turned out fine so doctor said to lose weight,see a sleep specialist for the fatigue,see the shrink. Yeah, I was given an appointment for the sleep specialist. Not sure if I should go.


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



Celiac.com Sponsor (A8-M):



frieze Community Regular

celiac disease is not diagnosed with a colonoscopy (that is from the bottom up), you need an endoscopy (that is from the top down)

sb2178 Enthusiast

A colonoscopy will not detect celiac. An endoscopy (through your mouth and stomach to the small intestines) will.

I favor testing, just in case it's really something(s) else, but you could just go entirely gluten free and see if it helps. YOu don't need an rx for basic food. The only thing it could hurt is if you did want testing, you would have to go back on gluten.

CruiseWriter Apprentice

I had the endoscopy done at the same time as colonoscopy......don't know results as I don't see GI for another month. Just know I have IBS/acid reflux.

mushroom Proficient

You have two of the major symptoms of gluten intolerance - IBS (which is symptoms only, not diagnosis) and acid reflux or GERD as doctors like to call it (which sounds like a diagnosis but is also a description of symptoms). If you have gone as far as you can go with testing, do give the diet a strict three-month trial, and you may find that those two pseudo-diagnoses go away because the real culprit is gluten intolerance.

tarnalberry Community Regular

While other issues may be causing it, I would definitely try the sleep referral, as poor sleep (not just quantity, but quality) screws with your body A LOT.

eatmeat4good Enthusiast

Your symptoms are consistent with Hashimoto's disease which is very common in Celiacs. Have you had your thyroid tested? My TSH was normal for years, but after I read about Hashimoto's I asked for the antibodies test and the antibodies were elevated so I was positive...I had severe weight gain, depression, fatigue, coarse and thinning hair. Google the symptoms and see if it fits. Then ask the Dr. for a full thyroid panel if you feel it is appropriate. There are Hashimoto's antibodies and Graves antibodies. I have no insurance but neither of these tests were very expensive. The swelling and edema and inability to lose weight also go with thyroid disease which can be a secondary autoimmune disease.

I'm a therapist...and they told me to go to therapy too. Yeah right, I couldn't even process a coherent thought while I was on gluten, no amount of therapy would help. If your Hashimoto's antibodies are out of whack you will have something to go on. Also get off of gluten and Soy. Soy is very bad...for your thyroid and for causing depressive symptoms. Good luck


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



Celiac.com Sponsor (A8-M):



CruiseWriter Apprentice

I'm on .88 mcg of Levo for my thyroid. I do have Hashis, dx 3 years ago. Not sure if the meds are working,though.

dilettantesteph Collaborator

The gluten free diet cured my depression. Therapy and anti depression drugs did not. You don't need permission to stop eating gluten.

Takala Enthusiast

Check and see if your meds are gluten free, too, as well as any vitamins or other supplements.

Do try the gluten free diet. Celiac/gluten intolerance and thyroid problems are very interconnected. A shrink is not going to fix your malnutrition and hormonal imbalances. :huh:

eatmeat4good Enthusiast

Yes to the above.

AND check your Hashimoto's antibodies again because things can change!

mamastinky Newbie

I had the exact same experience last week. To top it all off, there were interns standing-in and laughing at me; he wouldn't even look me in the eye while trying to tell me to go to a psychiatrist. I swear I'll eventually need therapy because of all the doctors who keep sending me to therapy..

mushroom Proficient

I wonder how many gluten intolerant patients psychiatrists have??? :P

ravenwoodglass Mentor

I wonder how many gluten intolerant patients psychiatrists have??? :P

Likely lots. Most are not even aware that if depressed patients are not responding to antidepressants they should be tested for celiac. Instead they pile more drugs on.

Takala Enthusiast

(fair warning- I'm part Irish descent. Remember which northern European tribe has the highest % of the DQ 2.5???? )

All this psychiatrist talk reminds me of the following quote, from one of the greatest and funniest autobiographies of modern times:

"When I look back on my childhood I wonder how I survived at all. It was, of course, a miserable childhood: the happy childhood is hardly worth your while. Worse than the ordinary miserable childhood is the miserable Irish childhood, and worse yet is the miserable Irish Catholic childhood.

. . . nothing can compare with the Irish version: the poverty; the shiftless loquacious alcoholic father; the pious defeated mother moaning by the fire; pompous priests; bullying schoolmasters; the English and the terrible things they did to us for eight hundred long years."

mushroom Proficient

Funny, Until I got to the end and saw who you were quoting, I was saying to myself, well Frank McCourt does the most miserable Irish childhood I have ever heard - I couldnl't even finish Angela's Ashes, it was just too darned miserable :lol:

IrishHeart Veteran

I wonder how many gluten intolerant patients psychiatrists have??? :P

Funny you should ask :lol: ....I was so anxious and depressed (and did not know why) before DX and my heart was racing out of my chest and skipping beats but my EKG was normal, so I reluctantly went to a psychiatrist at my PCP's suggestion as he did not know what to do for me anymore and I was so ill and deteriorating and in chronic pain . He convinced me it was "just anxiety" and I had tried xanax and SSRIs and they made me sicker than I already was. I did not know WHY I was this way...I was a happy person with a wonderful husband. Granted, my Dad had died, but I was accepting of that.

I went from being a vivacious 215 lbs. to an emaciated 122 with lost muscle mass in just 6 months. (thus exploding the myth doctors perpetuate that if you're overweight, you can't be a celiac)

I told her...look, I am not depressed in a clinical sense...I am sad and angry because I am ILL and in PAIN and I do not know why. Doctors tell me I have to "live with this" (it is IBS and "fibro") and to get a scooter if my legs hurt so much...I refused to accept this answer... I kept telling her I am NOT anxious because of anything in particular--except that I FEEL LIKE MY NERVOUS SYSTEM is revved up to a million and I cannot sleep more than an hour at a time. She gave me sleep meds which did nothing but make me sick and keep me up all night with the tremors!! I tried everything once, then told her NO MORE! She said okay.

SOMETHING is keeping me ILL and on fire and no one believes me, I tearfully told her again and again. I was losing weight rapidly, sick as a dog, had edema, burning neuropathic pain, my hair fell out, I had all the GI stuff...and she would get frustrated with me when I still seemed to be "nervous" and crying. She wanted me to talk about everything from my childhood (which was happy)to my miscarriages years before. Why??

She had me go to stress reduction classes and yoga,(because of course, we are told that stress is all we are suffering from) which I dutifully went to, even though I could barely walk and I could not sit without searing pain, and I was trembling all over and lost in surreal space the entire time ...gluten was killing me slowly.

I did not want anti-depressants, I wanted to know what the hell was going on...!! I kept insisting to her that I wasn't depressed or mentally ill, I was ill in MY BODY. What would keep someone revved up like a nervous nutjob, I asked??? No doctor knew; I asked them all for 2 years....until one day, SHE FINALLY asked me...do you have any food intolerances by any chance??? :blink: I said I think I might because I saw a Naturopath and she said something about a leaky gut..and that got me researching...

I called that psychiatrist just recently and thanked her for pointing me in the right direction and for believing me when I said I felt like it was physiological, not psychological.

Vitamin deficiencies like folate (B9)--very common in celiac disease--cause low levels of seratonin, norepinephrine and dopamine...which are necessary for mood stabilization in the brain ...no wonder so many celiacs are depressed!

Don't doctors know this?? I do--and gee, all I did was read an article or two.. :rolleyes:

When doctors do not know the answer, they (1)give drugs or (2) send you to a psychiatrist who will (3) give you more drugs. What a racket.

It's criminal, really.

As I rid my body of the gluten, and had my low folate levels addressed, the anxiety and depression is diminishing and someday, I will go back to all of those arrogant prigs who told me "it's not celiac--take these antidepressants"...and say I TOLD YOU SO!! :P

Cypressmyst Explorer

I wonder how many gluten intolerant patients psychiatrists have??? :P

The short answer: Every single one.

Not a single human on this planet can digest this stuff properly.

IrishHeart Veteran

The short answer: Every single one.

Not a single human on this planet can digest this stuff properly.

I think you are absolutely correct!!! And the sooner people "get it", the sooner they will resolve most of their health problems.

My cousin and I said "there needs to be a gluten revolution". :lol: Right now, though, many people think WE are in the minority. :blink: They think this is a "fad" or "an allergy".

I try to educate those in my life, but they are resistant and it is exhausting....sigh...ah well...

Cypressmyst Explorer

I will tell a person once and then don't bring it up again unless they ask. My conscious is clear and I have better things to do then try to convince someone who isn't ready to hear it. But the next time it comes up they will likely be more receptive so I like to think that it does make a difference...even if it isn't immediate.

15 people around me have gone gluten free in the past year. Of those 15 every single one has seen a miraculous improvement in their health and well being. We won't be the minority for very much longer. ;)

Oh for the day when CC is no longer a problem! B)

IrishHeart Veteran

I had the endoscopy done at the same time as colonoscopy......don't know results as I don't see GI for another month. Just know I have IBS/acid reflux.

The endoscopy without a biopsy won't tell you much either. Hope he/she did that while down there (mine did NOT--what an idiot)

I wouldn't wait a MONTH to know what happened...give the office a call.

I had "IBS" and "acid reflux" for 20 years too....those are SYMPTOMS--and usually of celiac. Lived on antacids, zantac, Immodium, etc.

Hope you get answers and fast!

Going gluten-free solved my horrid GI symptoms after suffering for 20 years. You can get relief too--diagnosis or not.

IrishHeart Veteran

I will tell a person once and then don't bring it up again unless they ask. My conscious is clear and I have better things to do then try to convince someone who isn't ready to hear it. But the next time it comes up they will likely be more receptive so I like to think that it does make a difference...even if it isn't immediate.

15 people around me have gone gluten free in the past year. Of those 15 every single one has seen a miraculous improvement in their health and well being. We won't be the minority for very much longer. ;)

Oh for the day when CC is no longer a problem! B)

amen to that, sister!! B)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748

    klmgarland
    Newest Member
    klmgarland
    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

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.