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

Advice...new To This Topic.

Momma Bird

Recommended Posts

Momma Bird Newbie
Momma Bird
Posted

I have been reading posts all morning, and was reluctant to post myself because it seems so many others have written what I want to say...but I feel lost and have nowhere else to turn right now. I just heard about celiac disease last night. I picked up a free pamphlet from QFC that had an article about it in there, and I had hope for the first time in a long time that this might be why I feel so crappy all the time. I have been so frustrated with my doctors...I have dealt with depression and anxiety since I was a young teenager (I am 21 now.) But lately, I'd say in the last couple years, my body has just felt like it was shutting down. I am so completely exhausted all the time, no matter how much I sleep. I started Weight Watchers six months ago, and over the last year I have lost 76 pounds. I am constantly wondering why if I'm eating all this healthy stuff (fruits, veggies, whole grains) exercising, drinking tons of water, do I feel worse than I ever have? Everything feels so heavy, especially after meals. I do not eat heavy fatty meals anymore. After a bowl of cereal I feel like I must lay down. I either have horrible constipation, or I can't stop going. My nails are terribly brittle and the skin is always peeling around the nail. I'm anxious, and depressed, mostly because I don't enjoy anything because Im too tired and achy. Thank god my husband and I are apartment managers, and he often will let me go home to sleep in the middle of the day. I don't know exactly what I'm asking for, except for maybe what kind of doctor I should turn to, or what specifically to ask for, test wise? I just want to rule celiac out at the very least. I went to the doctor a few weeks ago for this, and wanted them to check my thyroid...somehow I end up coming home with Celexa (medication for depression) which sends me into a crazy spell, and no thyroid test taken. I am off that now, only took it for a few days. I am frustrated with myself because I don't stand up for myself in the doctors office. I always believe what they tell me, and dont seem to know how to get the answers I need. I am kind of wanting to just try the diet and see if it helps..because the thought of going to another doctors appointment and not getting answers just makes me want to puke. Any comments or advice would be greatly appreciated. I just needed to vent a bit, because no one else will listen to me!!!

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

Celiac.com Sponsor (A8-M):


MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

You can go to your regular doctor for tests. Tell them you want to be tested for Celiac Disease and they will do a blood test and/or a biopsy. Hopefully these tests will halp you find your answer.

Momma Bird Newbie
Momma Bird
Posted
  • Author

Thank you so much! I will make an appointment...I just hope they don't blow me off.

Jnkmnky Collaborator
Jnkmnky
Posted

Go to your dr and get a blood test for Celiac Disease. Your dr works for you. This is YOUR appt. You're paying him for it. Ask for what you want and get what you want. If he wants you to do or take anything other than a blood test for celiac disease, tell him to call you at home and schedual an appt himself at his expense. A blood test for celiac disease can be done immediately and you can begin eating gluten free that day. If nothing else, you will know you're possibly working at solving a problem that is ruining your enjoyment of life. If it's not celiac disease, a gluten free diet while you await blood test results will not hurt.

KaitiUSA Enthusiast
KaitiUSA
Posted

I agree, definitely get tested. Don't let them blow you off...you have the cards in your hand.

Make sure they do a complete panel though because that is very efficient in detecting celiac.

Tasha2004 Contributor
Tasha2004
Posted
I have been reading posts all morning, and was reluctant to post myself because it seems so many others have written what I want to say...but I feel lost and have nowhere else to turn right now. I just heard about celiac disease last night. I picked up a free pamphlet from QFC that had an article about it in there, and I had hope for the first time in a long time that this might be why I feel so crappy all the time. I have been so frustrated with my doctors...I have dealt with depression and anxiety since I was a young teenager (I am 21 now.) But lately, I'd say in the last couple years, my body has just felt like it was shutting down. I am so completely exhausted all the time, no matter how much I sleep. I started Weight Watchers six months ago, and over the last year I have lost 76 pounds. I am constantly wondering why if I'm eating all this healthy stuff (fruits, veggies, whole grains) exercising, drinking tons of water, do I feel worse than I ever have? Everything feels so heavy, especially after meals. I do not eat heavy fatty meals anymore. After a bowl of cereal I feel like I must lay down. I either have horrible constipation, or I can't stop going. My nails are terribly brittle and the skin is always peeling around the nail. I'm anxious, and depressed, mostly because I don't enjoy anything because Im too tired and achy. Thank god my husband and I are apartment managers, and he often will let me go home to sleep in the middle of the day. I don't know exactly what I'm asking for, except for maybe what kind of doctor I should turn to, or what specifically to ask for, test wise? I just want to rule celiac out at the very least. I went to the doctor a few weeks ago for this, and wanted them to check my thyroid...somehow I end up coming home with Celexa (medication for depression) which sends me into a crazy spell, and no thyroid test taken. I am off that now, only took it for a few days. I am frustrated with myself because I don't stand up for myself in the doctors office. I always believe what they tell me, and dont seem to know how to get the answers I need. I am kind of wanting to just try the diet and see if it helps..because the thought of going to another doctors appointment and not getting answers just makes me want to puke. Any comments or advice would be greatly appreciated. I just needed to vent a bit, because no one else will listen to me!!!
Tasha2004 Contributor
Tasha2004
Posted

But also take a list of other autoimmune conditions, or read up in advance. They tried to give me antidepressants and I had Thyroid disease (Graves.) You dont just need a Celiac panel, you need a whole blood workup all the way around!

Look up Mary Shomon's site on Living Well with Autoimmune disease and look over some of the condtions, and then try to offer an educated reason to your doctors on why you want tests for these things. yes, Celiac but also thyroid and some other tests. All simply done with one blood draw.

The key is to be well informed, but dont act like you know it all (even if you are right!). I usually say, do you agree with me? The good doctors say yes or no, or lets discuss. The bad doctors get angry!

I have three chronic diseases, so I always arm myself with info!

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

I agree with Tasha2004, I think you should definately be tested for celiac, but also other auto-immune diseases, and other things like thyroid, lactose intolerance, ect. And Jnkmnky also made a good point, if you are from the states you pay the doctor to go to the appointment so your doctor should want your business and thus be willing to listen and help you.

I think that you should go into the doctor and tell him all your symptoms, even the minor ones, and make it seem like a big deal, because it is! What I do when I go into the doctor is tell them all the symptoms in such a way that they will think of the problem themselves. For example, in your case, I would say something like I have extreme fatigue, lack of energy, constipation and D, brittle nails, anxiety, depression, achiness, and mention that you feel badly after you eat cereal. If the doctor doesn't suggest celiac... I would also mention that you have been doing some research on your own and then mention that you feel like you have a lot of symptoms of celiac, and any other diseases/problems you may want to bring up.... and then ask him if you could be tested for those.

julie5914 Contributor
julie5914
Posted

I like Carrie's suggestion a lot - sometimes talking to doctors is like talking to spouses - you might already have an idea in your head, but you have to make it seem like it's their idea! I did that when I was having migraines - I needed medicine bad and I didn't want to waste any time, so I looked up the terms most used to describe the symptoms and used those terms verbatim. I was like, " I get these headaches, right over my eye, and I am sensitive to light and they last for hours, unresponsive to regular OTC pain killers." She was like, sounds like migraines, and I had my drugs. Thankfully, those are gone now that I am gluten-free!

lbsteenwyk Explorer
lbsteenwyk
Posted

Here are 2 documents from well-respected organizations in the medical community that may help you make a case for your doctor to test you. The first is Myths and Facts about Celiac Disease, from the University of Chicago Medical Center.

Open Original Shared Link

The second is the National Institutes of Health Concensus Panel on Celiac Disease.

Open Original Shared Link

Good Luck!

Archived

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

Go to topic listing

  • 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. Hmart
      - Hmart replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end...
    2. trents
      - trents replied to Hmart's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So...
    3. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      10

      Help I’m cross contaminating myself,

      I have a lot to learn! Thank you
    4. DebJ14
      - DebJ14 replied to Jhona's topic in Introduce Yourself / Share Stuff
      30

      Does anyone here also have Afib

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies. I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved. Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. ...
    5. Hmart
      - Hmart posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Is this celiac?

      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative. I have gone gluten free. In week 1 I had a flare-up that was similar to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,924
    • Most Online (within 30 mins)
      7,748
    Mckshane
    Newest Member
    Mckshane
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Hmart
      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Is this celiac?

      By trents · Posted

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      I have a lot to learn!  Thank you
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
    • Hmart
      Is this celiac?

      By Hmart · Posted

      The symptoms that led to my diagnosis were stomach pain, diarrhea, nausea, body/nerve tingling and burning and chills. It went away after about four days but led me to a gastro who did an upper endo and found I had marsh 3b. I did the blood test for celiac and it came back negative.  I have gone gluten free. In week 1 I had a flare-up that was similar to my original symptoms. I got more careful/serious. Now at the end of week 2 I had another flare-up. These symptoms seem to get more intense. My questions:  1. How do I know if I have celiac and not something else? 2. Are these symptoms what others experience from gluten?  When I have a flare-up it’s completely debilitating. Can’t sleep, can’t eat, can’t move. Body just shakes. I have lost 10 pounds since going gluten free in the last two weeks.
×
×
  • 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.