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

6 Months Gluten Free

nurse93

Recommended Posts

nurse93 Newbie
nurse93
Posted

Hi all, I have not posted since Aug 2010 right after diagnosis. Its been a heck of a journey for me.Coping with the possibility of heart surgery and then celiacs. Just wanted to share some news. Had a celiac panel last week. GI doctor wanted to see how I was doing on the gluten free diet. I had mixed feelings about what the results might reveal. I have not put one thing in my mouth that I did not prepare myself or check the label carefully, except a couple of meals my husband prepared. He really is getting good at preparing meals gluten free. He has a cheet sheet with all the ingridients that are forbidden.I couldn't help wonder if the test came back elevated what I would do. I knew i was diligent with my diet, toiletries, medications etc. I though if my numbers came back elevated I might as well be eating gluten. On the other hand if they were normal I had been doing it right. Well I'm pleased to say that my tests came back negative. All levels normal. Looks like i have the hang of this. For all those just starting out it does get easier. Next I would like to try eating out. I have been putting it off for six months. I am just so afraid of getting glutened. Anyone try BJ's gluten free pizza? I think they have Redbridge beer too. Thank goodness for Redbridge beer.

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

Hi all, I have not posted since Aug 2010 right after diagnosis. Its been a heck of a journey for me.Coping with the possibility of heart surgery and then celiacs. Just wanted to share some news. Had a celiac panel last week. GI doctor wanted to see how I was doing on the gluten free diet. I had mixed feelings about what the results might reveal. I have not put one thing in my mouth that I did not prepare myself or check the label carefully, except a couple of meals my husband prepared. He really is getting good at preparing meals gluten free. He has a cheet sheet with all the ingridients that are forbidden.I couldn't help wonder if the test came back elevated what I would do. I knew i was diligent with my diet, toiletries, medications etc. I though if my numbers came back elevated I might as well be eating gluten. On the other hand if they were normal I had been doing it right. Well I'm pleased to say that my tests came back negative. All levels normal. Looks like i have the hang of this. For all those just starting out it does get easier. Next I would like to try eating out. I have been putting it off for six months. I am just so afraid of getting glutened. Anyone try BJ's gluten free pizza? I think they have Redbridge beer too. Thank goodness for Redbridge beer.

Thanks for your post and congrats on your success with the diet. :) That is AWESOME news AND very encouraging for those of us still new (I am 2 months in).

Sorry I don't have a BJs around here to tell you if it's good or not, but hubby (who went gluten-free with me even though he didn't have to) says the Woodchuck hard ciders are good. And New Grist Beer is good, too....I am abstaining until my gut heals. :unsure:

Thanks again for sharing....and WHOO HOO for you!Enjoy your night out!! :)

JonnyD Rookie
JonnyD
Posted

Congrats on the first six months! I'm only 10 days into this and it's a real struggle at times. My wife and 2 yr old are not celiac so it's an adjustment for all of us.

I'm glad to hear that it gets easier. That's great that your numbers came back fine! Definitely celebrate!

love2travel Mentor
love2travel
Posted

Congrats on the first six months! I'm only 10 days into this and it's a real struggle at times. My wife and 2 yr old are not celiac so it's an adjustment for all of us.

I'm glad to hear that it gets easier. That's great that your numbers came back fine! Definitely celebrate!

You and I have similar start dates! I have been gluten-free 12 days and am finding it hard because I did not have any symptoms before so I sometimes grieve what I am missing. My husband is extremely supportive but not totally gluten-free (I don't blame him). He eats what I cook and bake but he has his own cereal and bread.

As my biopsies came back showing celiac without a shadow of a doubt, it is what I must do.

Keep hanging in there! :)

jeslk Apprentice
jeslk
Posted

You and I have similar start dates! I have been gluten-free 12 days and am finding it hard because I did not have any symptoms before so I sometimes grieve what I am missing. My husband is extremely supportive but not totally gluten-free (I don't blame him). He eats what I cook and bake but he has his own cereal and bread.

As my biopsies came back showing celiac without a shadow of a doubt, it is what I must do.

Keep hanging in there! :)

Looks like we are in the same boat. I am 8 days in, and have never had symptoms that I was aware of (as my signature shows, though, I've had my fair share of health issues). My husband and 2 year old still have some gluten, although not much. Thankfully, my husband is very supportive. I have to say, though, this sucks!!

eatmeat4good Enthusiast
eatmeat4good
Posted

BJ's Gluten Free Pizza is an excellent choice for your first gluten free restaurant meal.

I order it to go for my son about twice a month. The crust is really good and I take a few bites, but I find the tomato sauce is a little too sweet. Last time I got myself a whole pizza and ordered it without sauce. It was excellent. I ate the whole thing. And didn't feel a bit bad afterward. We have had their pizza at least 6 times and neither my son or myself have gotten ill The first time I went I asked them to explain it to me how they keep the gluten free stuff separate and I was satisfied with the answers. Feel free to ask questions so you can relax and enjoy your meal!

But they have been really careful with our food because we haven't gotten sick.

I haven't tried the Redbridge beer.

I hope you enjoy and will post what you thought if you try it!

There is another thread about BJ's Pizza if you do a search you will find other answers about BJ's

JonnyD Rookie
JonnyD
Posted

Looks like we are in the same boat. I am 8 days in, and have never had symptoms that I was aware of (as my signature shows, though, I've had my fair share of health issues). My husband and 2 year old still have some gluten, although not much. Thankfully, my husband is very supportive. I have to say, though, this sucks!!

My wife and daughter still have gluten (I think that's all my daughter would eat anyway) and I don't blame them. I'm stuck with it but they don't have to be. The logistics of the whole food preparation and family meals is all out of balance but we'll settle into a new routine soon. I try to keep in mind that with all that challenges we face in life, changing what we eat is relatively simple.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

My wife and daughter still have gluten (I think that's all my daughter would eat anyway)

You have had your DD tested haven't you? We can be addicted to gluten and someone who has a family history of celiac and is showing a very strong tendency to eat gluten foods may be celiac.

JonnyD Rookie
JonnyD
Posted

You have had your DD tested haven't you? We can be addicted to gluten and someone who has a family history of celiac and is showing a very strong tendency to eat gluten foods may be celiac.

Not yet. I just found out myself and have been gluten-free for only 10 days or so. We'll have her tested soon. She's growing fine, developmentally hitting all the milestones and doesn't show any outward signs or symptoms. She'll definitely be tested, it's just a matter of when. I plan to ask that question to my GI this afternoon. But, thanks for the input.

love2travel Mentor
love2travel
Posted

Looks like we are in the same boat. I am 8 days in, and have never had symptoms that I was aware of (as my signature shows, though, I've had my fair share of health issues). My husband and 2 year old still have some gluten, although not much. Thankfully, my husband is very supportive. I have to say, though, this sucks!!

It DOES suck. Definitely. I was floored and shocked when my doctor told me my blood test results were highly indicative of celiac disease (I seriously thought there was some technical error) then my biopsies confirmed what I was fearing. It is so hard to do this when I felt better pigging out on gluten. In a way it seems pointless but I know I have no choice. There is somewhat less incentive in a way; however, that does not mean I will cheat or anything. I am extremely diligent. I may as well go 100% rather than 98%.

It just doesn't seem fair at times. I hate to say it, but sometimes I wish I did not get tested, though deep inside know it is a good thing. My feelings are so mixed at this point... :huh:

SaraKat Contributor
SaraKat
Posted

Congrats! We got diagnosed at the same time- my bloodwork and biopsy were done in August too and I started gluten-free 9/1/10. I just had my follow up bloodwork done also and all my levels were normal/negative except the Gliadin IGG- it was slightly positive still, but much closer to normal than it was in August (went from 131 to 51- positive is above 30).

I eat out and go to people's homes to eat all the time and had 5 known glutenings in the last 5 months (my mistakes, not theirs).

I guess my point is you should definitely try eating out, since my levels are normal for the most part I think it is possible to eat out and still be gluten-free.

Congrats on your success!

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 rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.