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

By CruiseWriter
in Doctors

Recommended Posts

CruiseWriter Apprentice
CruiseWriter
Posted

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
frieze
Posted

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
sb2178
Posted

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
CruiseWriter
Posted
  • Author

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
mushroom
Posted

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
tarnalberry
Posted

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
eatmeat4good
Posted

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
CruiseWriter
Posted
  • Author

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
dilettantesteph
Posted

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
Takala
Posted

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
eatmeat4good
Posted

Yes to the above.

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

mamastinky Newbie
mamastinky
Posted

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
mushroom
Posted

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

ravenwoodglass Mentor
ravenwoodglass
Posted

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
Takala
Posted

(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
mushroom
Posted

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
IrishHeart
Posted

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
Cypressmyst
Posted

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
IrishHeart
Posted

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
Cypressmyst
Posted

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
IrishHeart
Posted

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
IrishHeart
Posted

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.

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.