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

Miserable

jknnej

By jknnej
in Coping with Celiac Disease

Recommended Posts

jknnej Collaborator
jknnej
Posted
  • Author

Patty, what medicine did you take and for how long?

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

Celiac.com Sponsor (A8-M):


2old4 Rookie
2old4
Posted

Hi Jenn-

I took 50mg Zoloft for awhile and I am currently on 20mg Lexapro. I had no issues with Zoloft, I was only taken off of it because it was thought to be the reason for my diarrhea, which in fact was celiac, I just didn't know it yet. I went off them for about a year and was fine until a death in my family and have since needed them. I do not feel foggy or drugged, I'm clearer than ever, in fact, the only time that happens is occasionally when I inadvertantly ingest gluten.

I did take Effexor for awhile, but had terrible headaches and nightmares when going off or if I missed a day. I did not have those side effects from Zoloft or Lexapro. Most anti-depressant literature says it takes around 3 weeks for full effectiveness and I believe that is true, but I did see some positive changes in myself within 1 week.

Also, do you have trouble focusing? Does your mind race, especially at night when you are trying to sleep?

Patty

connole1056 Rookie
connole1056
Posted

Please keep us posted. I really hope you find out what is causing your problems. There are many different drugs you can take. The side-effects felt by one person may not effect you at all, so IF you go on one and have problems then do tell your doctor so you can try another. My big fear is weight gain, but that pales in comparison to some of the other side effects. I was not aware Paxil could cause fatigue, and having lupus I was fatigued enough.So I was able to switch.I know you said you don't have the lupus symptoms, but a few things you mention made me think you do. I am not trying to make you get tested, but it is an auto-immune disease, like celiac disease is, and then can be connected so you might mention it to your dr. I know this sounds preachy and I do not mean it to. Take care!

jknnej Collaborator
jknnej
Posted
  • Author

I thought you said Lupus symptoms were hair loss, fatigue, and achy joints. I don't have any of those symptoms so I don't think that could be it....my energy level is fine, I don't ache, and I don't have hair loss...

I actually tried to take Zoloft but it made me terribly nauseated..literally gagging and you know how your head "buzzes" right before you throw up? That's what Zoloft did to me. I had to stop taking it; I couldn't go to work I was so sick.

Xanax works pretty well for me; I might just keep taking that. Half of a pill calms me down and I noticed the last two days I took half a pill I have felt MUCH better.

I may just continue to take this for awhile; my dr. did prescibe the ones you take daily, the timed release, but I didn't want to "have" to take it so I think I'll stick with the 25 mg ones that you take when you need it.

None of these drugs actually fix the problem which is why I don't want to get "hooked" on an Effexor-like kind of drug. I don't need xanax every day...so I don't want to have to take a pill every day. I go thru periods of bad stress, like everyone else, and that's when I need to take something. So I will probably not take the Effexor. I don't know..time will tell.

I'm going thru a job change right now that is so stressful. I am a choir teacher/opera singer who has been offered an AWESOME job. Problem? I can't sing!!! Since going gluten-free, I have almost entirely lost my voice. I've been working with a professor who is an expert in vocal issues and he cannot figure out what is wrong; I have pictures of my vocal cords and they look fine. I am so worried I will not be able to do this great job that I love.:( I am so depressed about it. I have started selling real estate to have a fall back job but it is sooo hard...I have no contacts and the only way to get business is to walk around neighborhoods, spend $$ advertising, call people, etc. I've never been in sales so this is not comfortable for me; I am a musician and teacher at heart.

My job starts in August and unless I magically get my voice back by then I really don't know what I will do....

Matilda Enthusiast
Matilda
Posted

..

jenvan Collaborator
jenvan
Posted

Voice problems ! I am so sorry Jenn. Talk about getting hit at your weakest spot. I pray you get some healing soon--that job sounds awesome! What exactly would you be doing?

connole1056 Rookie
connole1056
Posted

I am sorry if I led you to believe those were the only signs of lupus. There are others. A doctor would know how to explain better than I do.

Real estate can be difficult to get into. You are really at the disposal of the clients-you have to be ready to jump when they call and schedule your life around them. The money can be fantastic if the market is good though. I think some markets are harder than others, especially if there are alot of established agents in the area. That has to be stressful.

I do hope you do well in whatever field you choose. You seem very caring, so you are probably a great teacher!

I have never heard of voice problems associated with going gluten-free. Is this common? I do not know anything about that, or the medication someone else mentioned.

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

the only thing that I can think of that would affect the voice would be sinus issues. Whenever my sinuses get really backed up or infected then I have major voice issues. Not really related to celiac disease but might be something to look at... even if sinuses don't "feel" backed up, have an ENT look at them maybe...

fritzicurls Rookie
fritzicurls
Posted

Have you considered that your symptoms may be due to a yeast overgrowth? So many of the symptoms overlap with celiac that it is hard to decide which came first the chicken or the egg. You might want to check the site candidafree.com. Lots of good info and testimonials of people with symptoms like yours who got relief using their product ThreeLac. I hope the best for you.

skbird Contributor
skbird
Posted

Hey, just a comment on the Xanax - my dr. prescribed the one a day variety for me and I take them when I need them (maybe once or twice a month) - they are extended release so they last longer. But they really help out when I need them. But if what you're taking is helping, I'd stick with that.

I can't take any SSRI antidepressants - I get very manic when I do. Last time I tried one, it was Celexa, and the second day I took it I slept so weirdly that I threw my back out. That was 5-6 years ago and I've been battling sciatica ever since. Yet it seems my doctor is always willing to try talking me into taking them again (I'm not even depressed! - wants to give them for IBS, migraines, PMS, whatever!) which makes me nuts. Antidepressants are great for those they help but for some people, only make things worse.

I hope you're feeling better! :)

Stephanie

nikki-uk Enthusiast
nikki-uk
Posted

Hi jknnej,some of your symptoms are so similar to my husbands.Since going gluten-free he has been bombarded with strange symptoms(only symptom before dx was diarrhea)

Strangley enough my hubbie lost his voice when he started the diet.He could just about whisper.He had thyroid tests and a ct scan of his throat,but was all normal.

He also started to get neurological symptoms after going gluten-free(tingling,burning in feet,unsteady gait).

He has also completely lost his appetite(feels nauseous most of the time).He's on loads of supplements-but they don't seem to help.

We both had high hopes for the gluten-free diet,but he seemed to get worse.

We also tried cutting out all dairy but to no avail.

After 7 months gluten-free his gastro doc put him on steroids as his 'villi' are not healing,and it was hoped to help him get his appetite back.

Unfortunately after 12 weeks on steroids he has not put a single pound on(still at 120 pounds)and we seem to be going round and round in circles getting nowhere fast.

I should also mention that my husband wasdx with rheumatoid arthritis a couple of years before the celiac disease.The fatigue and exhaustion just got worse and worse until he was almost bed bound.

I think that the medical profression knows very little about auto-immune diseases,even less about the effects of 2!

I know how frustrated you must feel,and I wish I had some answers,but keep plugging away.Maybe your answers are around the corner.

I just wanted you to know that you are not on your own with your reaction to the gluten-free diet-and is no suprise to me that you may be suffering from depression.Living with a chronic illness makes you more likely to get depression.My husband has also suffered from depression.

here's to unravelling the 'coeliac mystery'!Good luck

judy05 Apprentice
judy05
Posted

Hi,

I just wanted to throw in a thought. My doctor explained to me that I wasn't secreting enough Serotonin, so he prescribed Zoloft for me and in only 2 days I feel better than I have in years. He said it takes at least 3 weeks to really "kick in". My husband could see the difference right away. I am less tired and irritable and have started to sleep better. I am also on a small dose of Klonopin to help me sleep, this has been a long term problem for me. I know you said you can't take Zoloft, but maybe another anti-depressant could help with your voice and make you feel better. It maybe that your serotonin levels are low, causing your problems.I don't like to take pills either but sometimes we need it. I was listening to Tom Cruise today saying that we don't need these meds, that all of these problems can be solved by getting enough exercise and eating right. He must never have had a sleepless night. I eat right and exercise and eat a balanced diet. I am up to 60 min a day on the bike. I think there is such a thing as chemical imbalance and I'm living proof of it. I hope you find an answer soon.

jknnej Collaborator
jknnej
Posted
  • Author

Sometimes it's hard to trust your doctors because you know you feel bad but they aren't doing anything for you! As for the lupus thing, I'll look it up...but I've been to so many doctors...why wouldn't they test me or mention it? They know all of my symptoms...that is why I doubt I have it...but I'll look it up anyhow.

Anyhow, I really don't want to take anti-depressants even though I know they would help....I'm afraid I'd never be able to get by without them after awhile. So I think I'll stick with the xanax every once in a while unless things get drastically worse. I also believe in chemical imbalances and I may have one but I want to check my hormones first. I will be going off the pill after 11 years next week and I think that could be part of my problem as well. If all else fails I will consider taking them.

I went to a music conference, just got back today, and it was great. A lot of wonderful teachers encouraging me not to give up on my voice.

I have taught high school choir for 6 years and am now going to Junior High. The school I got a job at is legendary for their choirs so I am so excited! It's stressful, though, b/c I have big shoes to fill from the last teacher. I know I am a great choir teacher, the voice loss has just shot my confidence a bit, but I'll just have to do whatever I can to get it back!

Guest nini
Guest nini
Posted

That's really cool that you taught high school choir.... I lettered in that in high school! I loved my music teacher .

Pegster Apprentice
Pegster
Posted

Have you had your thyroid levels checked? I have an underactive thyroid (autoimmune- celiac disease related I'm sure--- and one of the only symptoms I had was a loss of my voice. (And I was in a show at the time!) Good luck to you! I admire your desire to go without drugs, but there really are some amazing things out there. As my husband's dr said, "There is no reason to suffer when so many tools are available to deal with depression/anxiety." A new job, starting a family, moving? This is a stressful time of life for you and I wish you well.

jknnej Collaborator
jknnej
Posted
  • Author

I have checked my thyroid; it is fine. That was one of the first things I thought of!

I have been given two prescriptions to choose from, Effexor and Xanax. I like Xanax so far, Effexor I have not tried because I am afraid to! I am so afraid of side effects like nausea that I have a hard time taking any meds at all. Xanax I know does not make me nauseated so it is a little easier to take...I don't know what to do...I really feel like I need the meds but I don't want to take them! Ay yi yi. Well, I may try the Xanax for awhile to see if it helps and if it doesn't I can try the Effexor.

I am noticing lately mood swings, too. I will write a post about this to see if anyone else has this issue...

MisterT Newbie
MisterT
Posted
...and sometimes feel this weird morbidness; I can't explain it.

Lately I can't watch anything the least bit gory on TV or anything like that.

I have this too. Few weeks ago I saw "Hannibal" on TV. After seeing one of the last scenes where it really gets freaky, I had this weird feeling coming over me. I spent the whole night thinking about that stupid scene and feeling alone & disconnected while my girlfriend was besides me.

I never had any problems with horror/thriller films, actually I love these kind of movies. Very strange...

Am I ripe for therapy?

jknnej Collaborator
jknnej
Posted
  • Author

Wow, it is nice to feel that I'm not alone! I can't explain those feelings except to say that all of a sudden something will be very disturbing to me; sounds, TV, etc. I really can't watch anything gory at all anymore...odd isn't it??

2old4 Rookie
2old4
Posted
I can't explain those feelings except to say that all of a sudden something will be very disturbing to me; sounds, TV, etc. I really can't watch anything gory at all anymore...odd isn't it??

I had similar symptoms before I was diagnosed with depression. My counselor called mine "pre-morbid functioning" yuck, what a term!

Patty

egardner Newbie
egardner
Posted

This may sound funny, but it could be related to post traumatic stress syndorme, I was like that when I first got diagnosed, and also several times throughout nursing school during stressful weeks. My doc said that post traumatic stress syndrome mimics depression but is intermittent and often hits you all at once and then disappears for a bit ( I had always been tough skinned and all of the sudden I would cry during dumb commercials, and couldt watch anything yicky, and I am in the medical profession. I would freak during CSI, my favorite show, and I even passed out watching a patient of mine have an IV inserted, something I have seen a million times with no issues, I thought I must have been pregnant!) Anything can be a stressor for it, and if you are starting a new job, or frustrated with voice loss, maybe.... it might be a stretch, just trying to help ;)

egardner Newbie
egardner
Posted

PS- warning- Effexor causes weight gain, major side effect. Just be aware.

egardner Newbie
egardner
Posted

I posted more but it got archived because the thread was too long. See old posts for it.

Archived

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

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


  • Member Statistics

    • Total Members
      131,913
    • Most Online (within 30 mins)
      7,748
    patanddiane
    Newest Member
    patanddiane
    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

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.