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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.