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

Could gluten be my problem or are there others?


flowerbox12

Recommended Posts

flowerbox12 Newbie

Hello, I am trying to get good information on gluten sensitivity and I thought those who go through it would be the best source. I am 42 years old. As a kid I had some anxiety issues but managed. Once I had my first baby at age 17 I started having abdominal bloating and pain...all the time. I had frequent cramping and diarrhea. I went to the ER so many times with pain and was told I had IBS. I was never gluten tested. Also at this time I started having severe mood swings, usually brought on by something stupid...like a messy house. I took it out my daughter as she got to be about 2 or 3. I hated myself every day for my lack of self control. Around age 21 my family doc started me on Celexa.  I went through most of the SSRIs over the past 20 years. Last year I found out I have a genetic defect (short alleles) that makes me unable to use seratonin. I have tried some antipsychotics, many antidepressants (including those that don't act on seratonin), mood stabilizers, etc. I have tried over 20 medications over 20 years with little to no help. This year I decided to stop the meds and try to find out what's wrong with me. Eight years ago I had my last baby, I have 6. I had my tubes tied and a c-section with the last baby. I have been worse ever since. I have unrealistic PMS. I get severe anger issues more than I ever did. Instead of diarrhea I am chronically constipated. I had the clips removed from my tubes and that made my periods normal and took a lot of the pain away but it didn't help the PMS. My husband has been repeatedly unfaithful over our 20 year marriage up until the past 3 1/2 years when he got saved. This is the reason I always assumed I was depressed and anxious. I get physical anxiety like pounding heart, shaking, shortness of breath, etc. I started taking ionic magnesium, B complex, Vitamin C,  and probiotics this year. 

About 5 weeks ago someone at a health food store suggested I have thyroid testing done and stop eating gluten to see if it helped. My tests show low-normal thyroid levels and the presence of thyroglobulin antibodies. I am having a nuclear iodine test tomorrow to check for cancer and thyroid function. I stopped most, not all, gluten for 1 1/2 weeks. I felt better and less angry. Then I ate a bunch of it and got sick that night but didn't notice any worsening anger. I stopped gluten again, this time completely for about 2 1/2 weeks. I felt less anxious but it wasn't gone. I was less angry and irritable. I still had a lot of nausea at night. but read that I have to eat gluten to get tested for celiac disease. I started eating gluten last Friday. Saturday was the WORST day I have had in months. I had rage...all day...uncontrollable as usual but SO unwarranted. I almost left my husband. I psychically abused myself. I HATE this version of me. I am not physically abusive to anyone else. I am running out of time and options. Not eating gluten helped but it isn't all of it. I would appreciate any suggestions. I also need to know what I can do RIGHT NOW to help with the symptoms. I am absolutely desperate. How long do I have to eat gluten for it to show up in a blood test? If I don't have cancer I guess I have Hashimoto's but I need to know what's causing it so I can feel better. I thought maybe corn sensitivity but I ate popcorn and nachos last night with only nausea and no anger issues. Thanks for reading my mile-long post. I appreciate any help anyone can offer. 


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



Celiac.com Sponsor (A8-M):



Jmg Mentor

 

1 hour ago, flowerbox12 said:

s. Not eating gluten helped but it isn't all of it.

Hi and welcome Flowerbox :)

You have found a good site. 

1 hour ago, flowerbox12 said:

I am trying to get good information on gluten sensitivity

There are some resources in the stickied thread below. Try to stick to the university sites, they tend to be more factual. :)  I'm no doctor but your symptoms, physical and mental sound like they could be caused by celiac or gluten sensitivity and coupled with your reaction to trialling the diet it's at least possible you may have found the cause. 

 

1 hour ago, flowerbox12 said:

How long do I have to eat gluten for it to show up in a blood test?

8-12 weeks is often cited for blood test. 2 weeks for the biopsy via endoscopy. The blood tests look for antibody levels and these vary from person to person. With you only having been off a short time they may still be detectable, or if you test now you may be risking a false negative. Discuss this with a doctor, better yet get a referral to a specialist gastroenterologist who understands celiac. The key point is to stay on gluten from now until testing is complete. I know this is unpleasant and probably the last thing you want to hear, but if you want a definitive answer and a diagnosis that could benefit you and your kids, then that's what you'd have to do. 

There is a forum faq stickied and this thread hopefully has some helpful info and links on both what symptoms gluten can cause and what the testing consists of:

Alternatively you can forgo testing and just go gluten free. If you do this however it may be more difficult to get a test result should you later look for a diagnosis. 

1 hour ago, flowerbox12 said:

Not eating gluten helped but it isn't all of it.

Maybe, maybe not. It can cause a whole heap of things, see the linked thread. At the same time, many who have one auto immune condition also have others. I'd say until you identify gluten and remove it from the equation it may be difficult to know what exactly it's causing and if anything else is to blame. Likewise in identifying other food sensitivities, they may be there, but it may be too early to pinpoint them, best to stick to working out if gluten is a problem first. 

 

1 hour ago, flowerbox12 said:

 I HATE this version of me.

I know. I think of myself on gluten as a different person. But try to be compassionate to yourself. You are stressed, you are worried and you may well have been suffering from something which messes with almost every aspect of your physical and mental being for many years. Be positive, you may be on the verge of an answer and a chance to heal. Just hang in there, get yourself a good doctor to work through this with you and make good use of this board and the support and info you can find here. 

Best of luck :)

 

Ennis-TX Grand Master

WELL you do not have to eat a lot of gluten for the testing, just a wheat cracker or half a slice of bread a day. I might suggest taking it at night before bed and sleeping off the worst of the hyde syndrome it triggers (What I call the gluten mood swings).  I will admit I have had a whole hell of a lot of mental trauma and family issues with gluten. And it has really 180ed since. I am so happy go lucky now even bad things I tend to laugh off with random sarcasm. I just do not care about things that happening knowing I can work them out some how, and no longer explode at people or start breaking stuff like I used to.  3 years of being gluten-free most of my intestines have healed, and the neurological damage is slowly healing.

Once you get the testing done and change over on the diet it gets much better and easier after a few months being completely gluten-free.

flowerbox12 Newbie

Thank you for your responses! I am having an endoscopy done on the 28th so it will have been 13 days that I'm back on the gluten. I'm going to ask them to biopsy the small intestine while they are in there. The doctor says it doesn't matter how much gluten I eat I should have the same response, but that doesn't seem to be true. When I stop eating gluten and start again I have the biggest response. Then it's almost like I adjust a little and the negative symptoms come and go randomly. I ate bread last night for dinner and I feel good so far today. It seems too that sometimes eating a lot of it is worse for me? I've been keeping a diary so I'm trying to track it. Thanks so much for your help! God bless!

Jmg Mentor

Good move keeping a food journal. That can prove very useful. 

The doctor is referring to the auto immune response, the production of antibodies, which can take place with only a small amount of gluten. You however may notice a difference in symptoms depending on the quantity eaten and a lot of bread is difficult for anyone to digest in any case!

 It's also normal to react more strongly to gluten if reintroducing it after a period of absence. That's one reason to stay on it till testing is complete (blood and endoscopy) because having to reintroduce it in a 'challenge' can be unpleasant.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,818
    • Most Online (within 30 mins)
      7,748

    STy
    Newest Member
    STy
    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

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.