Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Feeling Blue...

lea01

Recommended Posts

lea01 Rookie
lea01
Posted

Hello all,

 

I am new to the site and just need a listening ear...

I'll try to make my story as short as possible.

 

Over the last 10 years, I've gone through a lot of random, seemingly unrelated health issues. I've experienced everything from a sudden diagnosis of GERD (prior to this, I never had issues with acid reflux) to a recent incident of having a seizure and losing consciousness, which has never happened before.

 

Before the seizure, I had been to every specialist possible and had an absurd amount of testing done for everything I was dealing with. None of the doctors could figure out what was going on. Once the seizure occurred, I decided something is going on so I needed to probe a little more.

 

I have a sister who was diagnosed with Celiac this year via blood work and upper GI/biopsy. After doing a lot of research and comparing my symptoms to the classic signs of Celiac, I decided to be tested as well. My blood work came back negative but PCP still referred me to a GI dr. After the blood work (but before seeing the GI dr.), I chose to go gluten-free just to see what would happen. Literally within a week of being gluten-free, I saw the illnesses that once plagued me suddenly begin to disappear.

 

I met with the GI dr. and he decided to do an upper GI and biopsy, which meant I had to go back on gluten. After two days of loading up on gluten-filled foods, the neuropathy, stomach pain, head and body aches, etc. came flooding back. I decided eating those foods for a couple more weeks to get an official diagnosis was not worth it for me because I couldn't leave bed when I was sick. I went back on the gluten-free diet and felt completely better in 1.5 weeks. I tested myself with the on/off gluten challenge 3 times and got the same result. I came to the conclusion that at the very least I have NCGS. So...I've been completely gluten-free ever since, which is about a month now.

 

Today, I took my children to their annual check-ups and thought I'd mention to the doctor the Celiac with my sister as well as my experience. That convinced her we should do a Celiac panel on the kids, but she was even more convinced we should do it when she looked at my kids' charts and noticed both of them lost weight since last year's appointment, although they have a very balanced diet.

 

I don't want to get myself worked up, especially since we don't have the results yet, but the thought of one or both of them having Celiac or NCGS is a bit overwhelming. I am very disciplined and don't have a problem with sticking to the appropriate diet and speaking up when necessary, regarding what they can and can't eat while out in public, but I'm concerned about them when they aren't with me. My 12-year-old is a "by the book" kind of kid, so I'm not as worried about him as I am my daughter, who is very free-spirited. Maybe I'd need to have us all sit down with a dietitian who specializes in this area...And getting my husband to get on board with everything...whew...that's another issue.

 

I don't really know what to ask, but if anyone has any tips on how to deal with this, please feel free to share.

 

Thank you and sorry. I just realized my definition of making my story short is far from that. :)

 

 

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

Celiac.com Sponsor (A8-M):


lea01 Rookie
lea01
Posted
  • Author

Hi lea01,

I don'tt realy no what to say so I gues I'll startt by saying hi!

I'm 14 and hav coelliac too.i hop you gett lotts better now thatt your gluten free.i hop your children don'tt hav it butt I think your supposed to gett better once you ar gluten free.i hav CF too so even though im gluten free now I'm stil verry sick but itts okay I'm alive and thiinking abot positive things.it can be harrd being sick all the time and Everey one around you sick too can'tt it but I think if you don't think abot the positive things and allways the negative then you'll never feel better.the lovelly peopel on this forum tell me to thiink positive and I am and I thiink it hellps.

I don'tt no what els to say but hop you feel lotts better soon and your children too.mayb you shoulld giv your children they hellp mummy when she's sad or sick and I lov hugs too.

I'm terriblelilly sorry abot my spelling I'm dyslexic and my speling is real bad.

Eloise

Thank you for your response, Miss Eloise. Sometimes I do get so consumed with every detail of a situation, that I forget to focus on the positive aspects of it and the things that are within my control. Giving life to the things I cannot control is a waste of time and energy. Thank you for putting things into perspective for me. I'm wishing happy thoughts and healing for you as well.

cyclinglady Grand Master
cyclinglady
Posted

Getting a celiac disease or NCGI diagnosis is overwhelming, but knowing what is actually making you sick is a relief! Even if your kids are diagnosed, you will be able to handle it. Just give yourself plenty of time to learn. My strategy has been to stay informed and educated. This forum has been great! I am so thankful for the internet!

lea01 Rookie
lea01
Posted
  • Author

Getting a celiac disease or NCGI diagnosis is overwhelming, but knowing what is actually making you sick is a relief! Even if your kids are diagnosed, you will be able to handle it. Just give yourself plenty of time to learn. My strategy has been to stay informed and educated. This forum has been great! I am so thankful for the internet!

You are so right! I am grateful to be able to look up information online whenever I want, and more importantly, chat with others who are living through it. The encouragement from others is priceless. I think hearing from my children's pediatrician that they have lost weight sent me into the dumps because I always pride myself in allowing them to splurge on treats every now and then, but maintaining a healthy mix of meat, fruits, vegetables, etc. A lot of it has to do with my personality, too. I'm almost 40 and just now learning that perfection is not a realistic goal.  :)  Thanks for taking the time to uplift my spirit. 

cyclinglady Grand Master
cyclinglady
Posted

I would not worry too much about the weight of your children if they are thriving. Our PED was always after me to change may kid's diet (we ate pretty healthy). She started in the 5 to 10 % club (held for years) and at 14 is at the 50% weight percentile. She fattened up when she hit kindergarten and was exposed to junk food (school lunches, Ha!). Our PED admitted that she had a thin patient chart, meaning she was rarely sick!

lea01 Rookie
lea01
Posted
  • Author

I would not worry too much about the weight of your children if they are thriving. Our PED was always after me to change may kid's diet (we ate pretty healthy). She started in the 5 to 10 % club (held for years) and at 14 is at the 50% weight percentile. She fattened up when she hit kindergarten and was exposed to junk food (school lunches, Ha!). Our PED admitted that she had a thin patient chart, meaning she was rarely sick!

This makes me feel good! My children are rarely sick as well and thrive in school, extracurricular activities, etc. so maybe I am allowing my thoughts to get away from me. I'll just relax, wait for the test results, and if necessary, make changes at that time. Thanks again!

Archived

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

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


  • Member Statistics

    • Total Members
      130,652
    • Most Online (within 30 mins)
      7,748
    Bama
    Newest Member
    Bama
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      @Rejoicephd, So glad you checked your multivitamin! I like Life Extension brand.  Their BioActive Complete B Complex has active forms of the B vitamins.  Note that one serving is two capsules, so you can take one capsule at each of two meals, boosting opportunity for absorption.   Life Extension also makes Benfotiamine (100 mg).  Take one at each of two meals in addition to the B Complex.  Don't take thiamine and B vitamins close to bedtime, you may be too energized to sleep.   I like Life Extension's Neuro Mag, a form of magnesium that can get into the brain easily, which helps immensely with improving headaches and muscle tension in the neck.   I'm so glad you're enjoying the forum!  
    • Jessica H
      Help Interpreting My Lab Results? (updated)

      By Jessica H · Posted

      Hi trents, just an update to my post, I had my follow up with my gastroenterologist. Scheduled my endoscopy for July 17th and got my biopsy results back July 28th. I have my official diagnosis now and I do in fact have Celiac disease. I'm slowly starting to switch my diet over to completely gluten free. My goal is to be completely gluten free after Christmas this year. I know I should be stopping completely now, but I am have a really hard time with change so my doctor told me I could do this gradually if it was easier for me. Now I know though and can make myself better with simple steps, no medication and have peace of mind knowing what I have is not the end of the world. Thanks again for your support. I've learned a lot over the last couple of months.
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      @knitty kitty thank you for this suggestion.  Yes definitely.  Actually, since you brought it up, I just looked to see what amount of B vitamins my multi-vitamin had in it. I just realized that not only am I taking the version of thiamine that you mentioned doesn't absorb well, but also that I inadvertently reduced the amount of thiamine that I'm taking daily over time.  I'm just now looking at the bottles for the last three multi-vitamins that I was taking (including the current one I'm taking now).  I started with thiamine mononitrate at 25mg but that turned out not to be a gluten-free multivitamin, so then I switched to a gluten-free multivitamin with 1.1mg thiamine mononitrate, and then when my GI doc advised me to switch to an independent iron pill, I got a new multi-vitamin gummy that lacked iron. Now I'm realizing that this gummy only has 0.14mg thiamine mononitrate.  So not only are these not the right kind of thiamine but they are waaaay low.  Probably going on a gummy is a bad idea anyway... I will look into a B complex and if you have any suggestions of a specific one that worked for you, I would gladly take the suggestion!  Thanks so much.  this is such an awesome forum!!!
    • knitty kitty
      mystery gluten?

      By knitty kitty · Posted

      Welcome to the forum, @AnneBSunflower, I have Hashimoto's, too.  I've learned some things that have helped with mine. This study says it's common to find anti gluten antibodies in Hashimoto's.  So antibodies aren't necessarily due to gluten ingestion.   https://pubmed.ncbi.nlm.nih.gov/31149170/   Take a B Complex supplement and Benfotiamine, a form of thiamine shown to promote intestinal healing, and Vitamin C.  This study found a higher rate of thiamine and Vitamin C deficiencies in people with Hashimoto's.   https://pubmed.ncbi.nlm.nih.gov/37278003/   Try cutting back on the amount of iodine in your diet.  Iodine, even in small amounts, can stimulate the thyroid which in turn stimulates the immune system which increases antibody production.   Dairy and eggs are high in iodine.  Switch from iodized salt to Pink Himalayan salt.   https://pubmed.ncbi.nlm.nih.gov/9703374/   Supplement with Selenium, a mineral that helps the thyroid function and calms the immune response in the thyroid.   https://pubmed.ncbi.nlm.nih.gov/37033262/ Hope this helps!  Keep us posted on your progress!
    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      @Rejoicephd, Would you consider adding a B Complex to your supplements?   I was taking a multivitamin and still became deficient.  There's a question as to how well multivitamins dissolve in the digestive system.   I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery.   Some B Complex supplements use Thiamine Mononitrate which is not well absorbed nor utilized by the body.  Thiamine Hydrochloride is better.  Benfotiamine is easily absorbed.  If not needed, the B vitamins are easily excreted. High B12 out of the blue could be masking a lack of other vitamins that work with B12, like Folate B 9, Pyridoxine B 6, and Thiamine B 1. Meats and liver are great sources of B vitamins.  B vitamins are needed to make digestive enzymes that digest protein, fats, and carbohydrates.   Do keep in mind that most gluten free processed facsimile foods are not required to be enriched with vitamins and minerals lost in processing like their gluten containing counterparts.  The more carbohydrates you eat, the more Thiamine is needed to process them into energy instead of storing them as fat.   Hope this helps!  Keep us posted on your progress.
×
×
  • Create New...