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

How Long Did It Take You To Get The Diet Right?

Shannonlass

Recommended Posts

Shannonlass Apprentice
Shannonlass
Posted

So I've been gluten free for about 11 weeks. Most times I feel I get the diet right but on occasion I know I've been glutened though I cannot always tell from where. So my question is how long do you feel it was before you had gotten to grips with the diet and were avoided getting glutened 99% of the time!

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

Celiac.com Sponsor (A8-M):


kayo Explorer
kayo
Posted

Mmmm, let's see.... gluten free for about 10 months and still coming to grips with it. ;)

I'm at a point where 3-4 weeks will pass with no CC issues. I have a good handle on it at home but it's eating out and eating at other people's homes where the risks get me.

MagpieWrites Rookie
MagpieWrites
Posted

Ummm.... I'm at just about the one year mark and am finally thinking I'm okay with keeping things on an even beam - most of the time. Had a moment of moron this last week (two bags of oats in the cupboard - one gluten-free, one just Bob's Red Mill NOT gluten-free. Guess which one I grabbed, make cookies from, and ate? Yeah. That bag... is now at my inlaws house and with it - no more gluten anywhere in my home!) but beyond that? When I got the celiac diagnosis, I pretty much purged the house. Scrapped any suspect pans, picked up a new toaster, etc - so all I have to do is keep what comes in on the safe side and I don't have to worry about it all that much. I'm lucky that my NON-gluten-free husband decided to go gluten-free at home, so there isn't any worry about cc.

The biggest thing I've had to learn is to travel at all times with snacks. I keep dried fruit, cheese sticks, homemade crackers, etc in my purse at all time, along with a refillable water bottle. This keeps me from just grabbing things when I'm out that I "think" are gluten-free and lets me be sure.

Cross Contamination still happens occasionally, but all in all, I think I'm in a really healthy place at last.

ciavyn Contributor
ciavyn
Posted

Honestly, the only time you risk CC is when you eat out (unless you have a bag of gluteny oats hiding somewhere in the pantry...;)). If you've cleaned out your kitchen, regularly wipe down your counters and you are careful, you should be okay. Most of it is habit. Once you get used to eating this way, you simply do. It isn't as hard as it is in the beginning. For the most part, I have no issues, except a once in a while drive-by glutening at a restaurant. :)

Skylark Collaborator
Skylark
Posted

I had it down after a few months. A subscription to the Clan Thompson software really helped me learn. After five years of eating gluten-free I've become much more sensitive (or maybe my health has improved to the point that I notice a glutening more) and am having to learn all over again. :blink: Suddenly the "may be manufactured on equipment used to process wheat" line has become a concern where it wasn't before.

Northern Celiac Newbie
Northern Celiac
Posted

Hi, It took me 6 months to get it right. And then it was almost by accident that I got it right. I had real bad insomnia during the bad time as I call last yr. I was watching 30 minute meals and started cooking mediterranean style almost by accident. I make my own hummus and bake my own crackers. The meals I make are from scratch and the only thing I use that is packed is gluten-free pasta, tomatoes, and vegetables from a jar, when they aren't in season. Occasionally I will have a gluten-free pizza, or a glutino meal(pad thai) but not very often.

Rachel ray is right it doesn't take that long to make something from scratch.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Do you think maybe you are just still healing? I would get symptoms when I knew I wasn't glutened because I had cooked all my food. I have a gluten free house too.

My kids were glutening me with their crumbs so they are on gluten free stuff in the home.

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

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

It depends on how sensitive you are. I'm very sensitive and it took me around 2 years. I still play Russian roulette every time I decide to try to add something new to my diet. The only way for me to tell if I can eat it is to give it a try. Just because some other celiac can eat it, does not mean I can!

Shannonlass Apprentice
Shannonlass
Posted
  • Author

I am fairly confident our home is gluten free. I bring my own lunch to work and eat it on clean napkins to ensure I don't pick up crumbs from the tables. I do cook a lot of meals from scratch now. Have really gone back to basics. Only tonight I made chili con carne and it actually tasted really good. We eat out maybe once a week and so far I haven't gotten any severe glutenings. Normally we eat at reputable restaurants who understand the condition and are very willing to discuss the ingredients and cooking processes with me. I know lots of folk on this forum are extremely anti-buffets. I have eaten at them a few times and had no issues. (The chef has always come out and walked me through each dish's ingredients.) It will be interesting to see if I get more sensitive and cannot do buffets anymore. (They are really popular here in UAE!)

Skylark Collaborator
Skylark
Posted

Ah, buffet roulette. I've seen people pick up a serving spoon and serve themselves from two or three dishes before replacing it. A scoop of mac and cheese, and then a scoop of that rice you thought was safe with the same spoon. Then a scoop of gravy from the back of the table that they manage to drip on everything else on the way to the plate . :blink:

buffettbride Enthusiast
buffettbride
Posted

I'd say a year before I was completely confident with it and we were going months without a glutening. We're down to about 3-4 glutens a year *knock on wood* that are usually restaurant cross-contamination related. Pretty good considering we eat out several times a month.

We keep our house gluten-free, so other than the one time I bought the wrong kind of cookies, no issues at home at all.

The first few months there was a glutening about once a week--then once a month--and it tapered off from there. It's tricky to get the hang off, especially cross-contamination.

Shannonlass Apprentice
Shannonlass
Posted
  • Author

Ah, buffet roulette. I've seen people pick up a serving spoon and serve themselves from two or three dishes before replacing it. A scoop of mac and cheese, and then a scoop of that rice you thought was safe with the same spoon. Then a scoop of gravy from the back of the table that they manage to drip on everything else on the way to the plate . :blink:

I'm not sure if it has to do with the establishments we eat at but I have never seen this happen. I have watched for it since I was diagnosed though because I had read the negative reaction towards them here. Buffets are a way of life here. They are a huge social outlet.

The buffet stations here are fairly large. There is a space between each dish. Each dish has it's own spoon that lives in a holder attached to it. Here the lids are always kept shut on the food so if you have your plate of food in one hand you have to put down the spoon before shutting the lid...if you get my drift! At our favourite buffet the bread is kept well away from all the food at another table which is good. I've been for about 4 buffets since I was diagnosed and I'm either totally insensitive to gluten or I have been very lucky. I've had no symptoms after them and have been monitoriing my body like a hawk as I was so paranoid

Skylark Collaborator
Skylark
Posted

That's totally different from buffets here. I'd not worry either if all the dishes were covered with their own spoons and all. How nice that you have that!

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
      132,291
    • Most Online (within 30 mins)
      7,748
    DottieLyn
    Newest Member
    DottieLyn
    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.