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

I Had No Idea!

MallysMama

Recommended Posts

MallysMama Explorer
MallysMama
Posted
  • Author

Thank you. You're right - it's not worth it. I did slip up today and tasted a toaster strudel thing that I let my daughter have for a snack. It wasn't very tasty - and not worth cheating on! Ugh! I went today and bought $40 worth of gluten-free food - most of which will end up in the garbage because I gagged when tasting some of it. Why can't manufacturers make this stuff taste good!?!? It wouldn't be so bad if it was ONLY gluten-free...but they have to go to the next level and make it all organic and Healthy...and get rid of many other allergens (which I'm sure the people with those allergies appreciate...so I'm sorry for offending). It just makes it not worth spending all that money when it tastes so gross! (Actually - I did succeed in finding one good thing - chocolate cookies that I didn't gag on!!) I bought a kinnikinnick bread mix (I haven't had gluten-free bread since I was about 8 yrs old)....so when I eventually make it - we'll see how that goes! I didn't dare by the frozen loaf....I'm not that brave and didn't wanna waste any more money! (My hubby's gonna choke when he see's the reciept!) :o Any success stories with buying gluten-free stuff from a store?

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

There are sooo many gluten-free foods that taste good. I believe if I was still eating gluten like I did before I may not like the foods as much as I do now. Gluten is VERY addictive...I went through withdrawl symptoms my first week off gluten. If you continue to keep small amounts of gluten in your diet your body will continue to crave it and its a powerful addiction. Not unlike quitting smoking or a drug addiction. Your mind tells you that nothing is as good as the foods with gluten in them. You will have to overcome that and put your health and family first. I'm one of the people who's on a restricted diet...not just gluten-free so I havent been lucky enough to get to sample all the gluten free processed foods out there but I look forward to it once I'm healed. If you start a thread about which gluten free foods are best you'll get a ton of responses which should help you out with the shopping. Some of the things I have tried and liked are:

Tinkyada pasta

Lara Bars

Amy's frozen dinners

Enjoy Life cookies

I think I've enjoyed everything I've tried but I'm not very picky and my taste buds have probably adapted to the change...I like vegetables now. :o

Lollie Enthusiast
Lollie
Posted
Lollie:

I am getting into a field that I am not sure about. Tiffany is the expert in this field. This is my thoughts after taking to my doctor yesterday.

The brain is a VERY complicated organ. If your brain is starved through lack of food to the brain, some of that will never be regained. That depends on the length of malnourisment to the brain. The brain is very much like the heart. If there is a blockage to the heart, in most cases the arteries to the heart will re-route themselves and find a new track.

I can't remember the amount of brain that is active, but I think it is way less than half. So, with continuous stimuli, the brain can find new places for activity and function.

My left side of my body is less responsive physically and I am right handed and most likely left brained. I have noticed a change in lack of articulation and recall. That does not mean that it is gone forever, it just means that my brain need to re-program where to put it.

I am not a medical person, this is just my theory with discussing this with my doctor.

I don't know how any one else feels about this. I definately have found myself with some mental regression, but I do feel,with proper stimulli that it can return to normal with the proper food to the brain.

This is pretty heavy for me on a Friday night.

Lisa

Thanks, it makes sense. I just hope that I didn't go too long to regain my "normal" brain function! I had been sick for about 10 years, and I was anorexic a large chunk of that time, but maybe now that I am able to eat and eat really healthy, nutrious foods, maybe my brain will get what it needs to "come back"!

I say to my little girls all the time, "where's mommies brain?" They think it's so funny, that at halloween, some one gave them little plastic brains, and when I would say that they would whip one out or point one out on the floor! You have to laugh at yourself when you see yourself through a childs eyes!!!!

Lollie

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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,289
    • Most Online (within 30 mins)
      7,748
    SarahZ
    Newest Member
    SarahZ
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.