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

Can't Stop Binging On Gluten!

Rachel Keating

Recommended Posts

Joyzzz Newbie
Joyzzz
Posted

Rachel

It really helped me to read about your issues and the responses. My son was diagnosed with celiacs about 1 year ago, he is now 16 years old. He is under weigh and has a a problem gaining weight. Although, I think he has the same problem as you with a different out come.

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

Celiac.com Sponsor (A8-M):


Alli-Ely Newbie
Alli-Ely
Posted

Rachel,

It's kind of interesting because I'm 19 and was recently diagnosed and wasn't that strict with my diet right away either. What got me being strictly gluten-free was my mother telling me that she would feel immense guilt if anything happened to me because of this because I inherited it from her. So, basically what gets me through it is my family, I want to be healthy for them and to be ther for them for a long time, and if I don't follow the gluten-free diet I know that that may not happen. What I suggest to you is to make small adjustments if it is that hard for you. And I will tell you that Enjoy Life products are very good as are Foods by George products. I would also suggest going online and learning more about the disease, the diet, and the different products that are out there. Once you get used to it it's not that bad, it will be difficult but some of the food is really good once you find what works. I hope this works for you and you can go gluten-free. I wish you the best of luck.

Switch2GF Rookie
Switch2GF
Posted

Rachel: I was diagnosed 3 years ago... and have spent the past 3 years living the "college lifestyle" and saying "I will start tomorrow." Over the past year, I started to become lethargic and somewhat depressed. That was the final straw to get me to switch. On Jan. 1st 2009 I went Gluten Free!

The biggest motivation you can have is seeing positive results... I don't sleep as much, I have lost a little weight, and I feel great!!! Once you see results, it will keep you going. It is time for you to just buckle down and do it! I tried many times, but stuck with it this time, and it is working! Every day gets better.

Rachel Keating Rookie
Rachel Keating
Posted
  • Author
Rachel: I was diagnosed 3 years ago... and have spent the past 3 years living the "college lifestyle" and saying "I will start tomorrow." Over the past year, I started to become lethargic and somewhat depressed. That was the final straw to get me to switch. On Jan. 1st 2009 I went Gluten Free!

The biggest motivation you can have is seeing positive results... I don't sleep as much, I have lost a little weight, and I feel great!!! Once you see results, it will keep you going. It is time for you to just buckle down and do it! I tried many times, but stuck with it this time, and it is working! Every day gets better.

I have those symptoms right now... and have for about a year. Being depressed and tired just makes me want to eat gluten. It's an endless cycle that needs to end :(

ang1e0251 Contributor
ang1e0251
Posted

It is hard to get started but you can do it, Rachel. We'll back you. I'm starting Atkin's diet today. It was really scarey to me to give up sugar but I know I need to. It isn't as hard as I thought. I've been sweetening my tea with stevia and that helps.

You are on the right track by talking to us. Keep posting and we'll keep posting back. You're not alone.

Rachel Keating Rookie
Rachel Keating
Posted
  • Author

Thank you so much everyone for your support. Your stories and inspiration have really really really helped me think more about the future rather than sticking with what I want to do today. As of now I am, let's see... 11 minutes gluten free? haha I know that sounds stupid... and I'm already wanting to eat gluten, but I am not going to. I'm done with it. I think saying it here will help me have more support and help me keep with it. My first challenge will be on Thursday... I have a date and we're going out to dinner. I am hoping to tell him about my options before we pick the place to go to, because I know a few places with gluten-free menus. Like Outback Steakhouse and Pf Changs. Both delicious! Anyways, thank you so much again, and I can't wait until tomorrow when I can tell you guys, I'm ONE DAY gluten free! (I know it's bad that I've had this disease for five years and going an entire day without gluten is a real step for me) But, you have to start somewhere like you guys have told me. Thanks again.

ang1e0251 Contributor
ang1e0251
Posted

Rachel,

Please work hard to find some gluten free treats that satisfy that craving when it hits. You shouldn't have to fight impulses all the time; that's a losing battle. Just about every food can be converted to gluten-free. That's how I stay on track.

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

Celiac.com Sponsor (A8-M):


prettycat Newbie
prettycat
Posted

:o

I've been diagnosed with celiac disease for almost 5 years and I've never stayed true to the diet. I immediately starting binging on gluten right when I got diagnosed with celiac disease... my excuse was "tomorrow I will start being gluten free and eating healthy so I can overeat today". Five years later and 100 pounds heavier, I'm completely done. I can't stop eating and am completely lazy. It's affected my social life, my school work, and everything else. I used to be up for anything and be so energetic, now I am self-conscious and afraid to go places because I am scared I will get sick. I have a gym membership but never go because I'm too depressed and have no motivation. I need help or some kind of boost to help me out. I don't know if anyone else has dealt with the situation of binge-eating on gluten because you have been told u can never eat it again but it's obviously a problem for me. I don't know what I'm looking for here, maybe some inspiration or knowing that I'm never alone? I'm only 20 years old and feel like this is so stupid I am already dealing with physical issues like possible diabetes. Thanks for reading :)

Please.......... you've got to stop eating gluten!!!! I am a fat person with celiac disease. I've been avoiding gluten for about 1 year now (except when I've accidently ingested hidden gluten) I've never been a heroin addict but I have friends who are ex-junkies and there is an analogy to gluten addiction like heroin. It has happened to me when I ate bread and pasta (especially) in the past. I'd pass out on the couch like I was super drunk or stoned, and then 2-3 hrs later I'd binge again on large amounts of gluten and /sugar and act really b%$@#y to anyone who looked at me wrong. This needs to be treated like an addiction. I'd talk to an m.D. and maybe look into going Overeaters Anonymous. Please get help. Food addiction is a disease. You are very young and you are killing yourself. I'm 20 years older than you and I have higher risks and health problems in connection with eating gluten. You still have chance to avoid further consequences of eating gluten. Good luck

Rachel Keating Rookie
Rachel Keating
Posted
  • Author

So I've been totally gluten free for, two days now? I haven't really noticed a difference yet. But I went to a family party for Easter today and I was a little nervous because family parties are hard for me to stay gluten free. But, I was so surprised to find that my Aunt and cousins had all contributed to make me and my sister (who is also gluten free) and entire meal and snacks for us. We had gluten free turkey, stuffing which was amazingggg, cookies, rice crispies, chips and dip, and fruit and vegetables with gluten free dip. It was so awesome!

Rachel Keating Rookie
Rachel Keating
Posted
  • Author

So I ate McDonalds today. Honestly I don't know why. Because it wasn't even that good. So that was really pointless I just got it because at work we all got McDonalds and ate together. I should have just packed something that's my problem. But I decided that I wouldn't be like I usually am and say "I'll start tomorrow" and binge for the rest of the night. Instead, I've been drinking a lot of water and ate some fruit. I'm pretty proud of myself even if I did eat gluten today. I think that this accident will give me more motivation to not eat gluten because I realized that it's so stupid and not even worth it. :) it was a good day!

njdevsfan09 Newbie
njdevsfan09
Posted

Wednesday will be ONE MONTH since I last ate Gluten!!!! I am so proud of myself..I never thought Id be able to do this. I lost 10 pounds too :) Yesterday was my first Holiday experience without Gluten...and it was hard, but okay!

Rachel Keating Rookie
Rachel Keating
Posted
  • Author

So, every time I start eating gluten free I get really bad stomach aches in the first week or two. Is this due to a drastic change in diet? I know that when you drastically change your diet it can put your digestive system through a funk but it really stinks! It stinks that now that I'm deciding to be healthy that my body is hating me. It just me mad that being gluten free is supposed to make me feel better and now I'm having to have these terrible stomach aches! Although when I was eating gluten I was still having bad stomach aches but it would be like feel sick for a week then have a "week off" of stomach aches. Anyways, just wondering what people's input on that would be. Still holding strong. Even though a day might still not be that much but oh well.

ang1e0251 Contributor
ang1e0251
Posted

Wednesday will be ONE MONTH since I last ate Gluten!!!! I am so proud of myself..I never thought Id be able to do this. I lost 10 pounds too :) Yesterday was my first Holiday experience without Gluten...and it was hard, but okay!

Super!! I'm so happy you lost weight doing it too!!

ang1e0251 Contributor
ang1e0251
Posted

So, every time I start eating gluten free I get really bad stomach aches in the first week or two. Is this due to a drastic change in diet?

I'm no expert but I would guess you are going through witthdrawals every time you start and stop like that. And there is an easy solution....don't eat gluten ever again so you never have stomach aches from it.

Rachel Keating Rookie
Rachel Keating
Posted
  • Author

So, I've lost 5 pounds. I think that's pretty good for just a couple days being gluten free. Although five pounds could just be water weight but whatever lol I'll take it as doing good on being gluten free.

  • 2 weeks later...
nikki55 Rookie
nikki55
Posted

Rachel,

I have the EXACT same problem that you are going through. I have just recently found out I have to begin a gluten-free lifestyle and hearing that has sent me over the edge!

Because I have felt crappy for so long, (I have the same lack of energy and motivation that you do) I don't know what it's like to feel any different. I think that I am binging on gluten products simply because I don't know where to start? It's so new and overwhelming, my head is spinning!

I know how you feel and I'm sorry. It stinks big time!!! I'm hoping that I will be able to get a grip on it and figure out how to start this new lifestyle change. I'm looking forward to feeling like a normal person for the first time ever, and I'm 33. Oh....just an FYI....I too had a gym membership that I didn't use because of the lack of energy....cancel it...it will save you some $$$ :)

Take care and I hope that you start feeling better.

  • 2 weeks later...
Gobbie Apprentice
Gobbie
Posted

I actually understand what you are going through.

I am severely GLUTEN INTOLERANT along with other food intolerances and allergies but GLUTEN is the worst in terms of missing out of life issue and symptoms. Somehow soon after being diagnosed as WHEAT INTOLERANT I managed to stay off it for quite a while although I did consume some every now and then since I love Italian food and baked goods.

I only did this cos it was during the holidays and usually people do whatever they like.

Then back to so called 'reality' I began my strict GLUTEN FREE diet as during the short times I was off gluten my health and moods IMPROVED dramatically. It felt like a joke. Something I imagined would take a MIRACLE to happen, just became a reality with removing the G word out of my life. So for about half a year, I was reasonably on a GLUTEN FREE diet, only a moderate amount of gluten was consumed which did not cause severe symptoms.

Now comes the 'B' word.

BUT over the Easter, realising that my life would forever have to be like this and having tasted the best chocolate brownie ever (what a timing!). Gluten consumption became a regular thing. Thankfully(?) my symptoms are severe and involve digestion cock up so there is a physical limit to how much I can take within a day but ever since my gluten intake has become regular. It is not always my decision though. My family is in denial so most of the times I am FORCED to consume it but there are also times when I spot a gluten product in the kitchen and let myself go.

It is tasty, I can feel that.

Plus it might be worse for me cos although there are alternative products which are gluten free, I still can not have them cos they usually involve heavy reliance on RICE FLOUR, CHESTNUT or NUTS which I am severely allergic and intolerant to. LOL. This really means that I have to give up baked goods (especially) altogether.

I do have replacement / substitutes .. like chocolates or sweets but they will never fill you up cos they just are not the same. Plus you do not necessarily like them in the first place so ... psychologically it is unsatisfying.

I think you have to face your fears. Get a REALITY CHECK.

LOOK AT YOURSELF IN THE MIRROR.

Make others look at you.

Observe the reactions of the others.

Then with help of your loved ones, this SHOCK treatment would bring about a positive reaction.

I consumed on gluten earlier in the day.. it has been almost 12hours yet it is still indigested, causing stomach problems even now, my head is exhausted but if I sleep now I am going to be even more sick so.. lol. So I took it in to action and threw away all the SUBSTITUTE foods in the evening. By the looks of it, I am going to be heavily indigested up to tomorrow, so despite hate skipping meals, I am going to eat minimum amount of food and do lots of yoga then the following day eat healthily meaning OFFENDER FOODS FREE.

Let's do this. WE CAN DO IT.

shirleyujest Contributor
shirleyujest
Posted

Rachel, God bless you. This is really hard, it's a huge change. Ask for help from your Maker if you believe in doing that. Ask for help from people in your life, and from friends you've yet to meet.

Is there a support group you can go to? It's great to be able to come here, but sometimes we need an in-person smile and hug, and to share a laugh with someone who's in the same boat we are.

I ate sugar and gluten from for two years back in the 90s, because I became convinced I had a candida problem. I had never heard of celiac disease. It was very hard! However, I came to love a lot of healthy things I would never have discovered otherwise. (Cashew butter, for instance. Yum.) And there are so many more gluten-free foods available now!

Even though I went back to eating gluten after two years, this period made me a much better cook, and more conscious of healthy eating. I'm currently waiting for a diagnosis, but if I get a yes I'm just going to renew this old way of eating and look forward ... let the healing begin. Not that I expect to be perfect... no doubt I'll fall off the wagon. But ultimately, I'm sure to be successful, and you have exactly the same capacity to succeed at this.

I promise, if you commit to it, you will discover a whole new world, new friends, new walking paths -- whatever. It's an adventure. Try and view it all as one big adventure. And you are in control, you are the one captaining the ship!

Instead of buying new clothes or makeup this month, or eating out, or whatever you use your discretionary income for, go into the grocery store and/or health food store and treat yourself to gluten-free foods, including ready-to-eat and mixes, and get to work in the kitchen. Think of all the actions you can take, dive in with gusto and begin to look at the possibilities of what you CAN eat and do, rather than what is off-limits.

BUFFY Newbie
BUFFY
Posted
Thank you so much everyone for your support. Your stories and inspiration have really really really helped me think more about the future rather than sticking with what I want to do today. As of now I am, let's see... 11 minutes gluten free? haha I know that sounds stupid... and I'm already wanting to eat gluten, but I am not going to. I'm done with it. I think saying it here will help me have more support and help me keep with it. My first challenge will be on Thursday... I have a date and we're going out to dinner. I am hoping to tell him about my options before we pick the place to go to, because I know a few places with gluten-free menus. Like Outback Steakhouse and Pf Changs. Both delicious! Anyways, thank you so much again, and I can't wait until tomorrow when I can tell you guys, I'm ONE DAY gluten free! (I know it's bad that I've had this disease for five years and going an entire day without gluten is a real step for me) But, you have to start somewhere like you guys have told me. Thanks again.

I am so tired of going out to dinner and looking at that bread and watching my husband eat it and I set there salivating wanting to eat, but I can't. Sometimes I do take a piece and than the next day I feel so bad, not only do I have stomach cramps, but I look bad also. My eyes look glades over and I feel tired...

  • 3 weeks later...
Rachel Keating Rookie
Rachel Keating
Posted
  • Author

I took someone's advice above and instead of spending my money on clothes (and shoes, they are my weakness!) I decided to go on a food shopping spree and see what kinds of gluten free things are out there. I'm realizing that not only do they DO have really good gluten free foods.... but i'm a pretty good cook!! I cooked my family dinner tonight, a gluten-free swiss chicken casserole out of this new gluten free cook book i got. They loved it! I'm definitely on the right track. Thank you again for the motivation, it helps me believe that I really can do this. And even though I still have no gone completely gluten-free, I am making the changes that lead to that and am on a better track now than I have been in over two years !

  • 9 months later...
Ciglee Newbie
Ciglee
Posted

Thanks everyone, I had no idea that so many people would have responded so quickly, and it definitely makes me feel like I'm not alone. My sister has Celiac Disease too and she deals with it amazingly. I never had the immediate symptoms of eating gluten right away until just this year and it's been going on for a couple of months. I am definitely listening to what you guys said, even if it made me a little teary-eyed, because at 20 years old I guess I wasn't really thinking about the long-term affects of what I'm doing today. I'm sure 30 years from now I would have looked back and kicked myself in the butt. The whole cancer thing scared me to death, seeing as cancer already runs in my family. Thank you so much for all the support.... and the kick in the butt. :) I didn't realize how much that would help.

Rachel.....I still cheat on my gluten free diet too..it is ok.

It is hard to get over it...also, I don't have the symptoms that

other people do when they eat gluten..so, I eat gluten.

I am not proud of myself..but, I do. I have been

diagnosed with celiac disease since 2006.

  • 1 month later...
AshleyRay Newbie
AshleyRay
Posted

I've been diagnosed with celiac disease for almost 5 years and I've never stayed true to the diet. I immediately starting binging on gluten right when I got diagnosed with celiac disease... my excuse was "tomorrow I will start being gluten free and eating healthy so I can overeat today". Five years later and 100 pounds heavier, I'm completely done. I can't stop eating and am completely lazy. It's affected my social life, my school work, and everything else. I used to be up for anything and be so energetic, now I am self-conscious and afraid to go places because I am scared I will get sick. I have a gym membership but never go because I'm too depressed and have no motivation. I need help or some kind of boost to help me out. I don't know if anyone else has dealt with the situation of binge-eating on gluten because you have been told u can never eat it again but it's obviously a problem for me. I don't know what I'm looking for here, maybe some inspiration or knowing that I'm never alone? I'm only 20 years old and feel like this is so stupid I am already dealing with physical issues like possible diabetes. Thanks for reading :)

Hello! I'm new on here. I became an herbalist, etc. after I was diagnosed. I often see people with severe allergies craving the foods they are most allergic to. It's not unheard of and you're not alone. It also took me over a year to fully accept saying goodbye to gluten. For me... there was a large psychological component. I don't want to get into details and I don't intend to overstep boundaries but I think it would be helpful for you to address the emotional component. :0)

  • 2 months later...
Saz36 Newbie
Saz36
Posted

Hello! I'm new on here. I became an herbalist, etc. after I was diagnosed. I often see people with severe allergies craving the foods they are most allergic to. It's not unheard of and you're not alone. It also took me over a year to fully accept saying goodbye to gluten. For me... there was a large psychological component. I don't want to get into details and I don't intend to overstep boundaries but I think it would be helpful for you to address the emotional component. :0)

Hey, it has been refreshing to read that lots cheat when diagonised with celiac but i have been really trying and for the best part of the year i have succeeded but it is all the other intolerances that have come to light, currently, gluten/dairy/corn/soya/fructose/nuts and eggs. I constantly crave sugary foods just to have the energy to get through the day yet i know i will spend the next 24 hours really really bad. Meat/ fish/ poultry and green veg may be incredibly healthy but it is exceedingly dull. If it is only gluten you have to give up you are very lucky.

  • 2 months later...
gfquestion Newbie
gfquestion
Posted

Thanks everyone, I had no idea that so many people would have responded so quickly, and it definitely makes me feel like I'm not alone. My sister has Celiac Disease too and she deals with it amazingly. I never had the immediate symptoms of eating gluten right away until just this year and it's been going on for a couple of months. I am definitely listening to what you guys said, even if it made me a little teary-eyed, because at 20 years old I guess I wasn't really thinking about the long-term affects of what I'm doing today. I'm sure 30 years from now I would have looked back and kicked myself in the butt. The whole cancer thing scared me to death, seeing as cancer already runs in my family. Thank you so much for all the support.... and the kick in the butt. :) I didn't realize how much that would help.

Hey Rachel,

I have kind of the same thing happening with me for a couple years now. The blood test came back as negative but I still have all the other symptoms and the doctor isn't sure one way or the other. He justs says that since my symptoms are better when I don't eat gluten, to just STOP eating it. Easier said than done. I do the same thing as you-- load up this weekend because I know I'll never get my favorite foods again. But it never lasts. And eating it just makes me hungrier and hungrier so I have to eat more and more. I was just wondering how you are now and if you've figured out a way to kick the habit. Please share, I could use the help.

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. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

      Son's legs shaking

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

  • Member Statistics

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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
      Son's legs shaking

      By knitty kitty · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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! 
×
×
  • 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.