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

Help! Recently Diagnosed...

casharp

Recommended Posts

casharp Newbie
casharp
Posted

Please help!!

 

I have been recently diagnosed with a possible gluten intolerance, and was advised by my doctor to try a gluten-free diet.  It seems that there are thousands of websites on tips and tools of this problem, but where do I start? 

 

 

Any and all help would be greatly appreciated!!

 

Thanks so much!!

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

Celiac.com Sponsor (A8-M):


jmryan83 Rookie
jmryan83
Posted

Please help!!

 

I have been recently diagnosed with a possible gluten intolerance, and was advised by my doctor to try a gluten-free diet.  It seems that there are thousands of websites on tips and tools of this problem, but where do I start? 

 

 

Any and all help would be greatly appreciated!!

 

Thanks so much!!

 

First thing I did when I decided to try gluten free was sort the kitchen. I live with people who do not cook/eat gluten free. So separating everything was a big help. I have my own corner of the kitchen cabinets where I've looked over all the labels and I know anytime I go there the food is "safe". Start with the obvious foods, but using the websites and tools you have - identify what ingredients in your food labels may contain "hidden" gluten and take it from there.

 

I haven't gotten so far as separate toaster, pots, pans, although I do have separate cooking utensils. I will most likely finish the job once I'm completely off my gluten challenge. 

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

Hi casharp,

 

Before you take gluten out of your diet, have you been blood tested for celiac or undergone an endoscopy?  You must be consuming gluten for both of these tests, and do NOT let the doctors tell you otherwise :)   If not, it would probably be a good idea to at least get the blood test done for it.  Your PCP can order this test.  A full celiac panel is:

 

DGP igA

DGP igG

ttg igA

ttg igG

EMA

Total igA serum- this test is a control to make sure you produce enough igA for the other igA results to be valid

 

Welcome to the forum!  

 

Please help!!

 

I have been recently diagnosed with a possible gluten intolerance, and was advised by my doctor to try a gluten-free diet.  It seems that there are thousands of websites on tips and tools of this problem, but where do I start? 

 

 

Any and all help would be greatly appreciated!!

 

Thanks so much!!

IrishHeart Veteran
IrishHeart
Posted

Hi and welcome!

 

Stay on gluten until your testing is done for the most accurate results.

 

Once you are finished with all that, may I suggest you start here:

 

 

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

To echo the others above...  

 

My previous doctor gave me the same bad advice as you got. :angry:

 

That was a big mistake for me to not be tested back when I was at my worst.

 

It's worth the money to do a Celiac panel    total IgA,   tTG-IgA,  DGP-IgA,  DGP-IgG  as you will get answers.

 

It's worse to be in a state of uncertainty. :wacko:  

 

Eat lots of bread and gluten and get tested to know once and for all. -_-

  • 2 months later...
Kelly777 Newbie
Kelly777
Posted

Trust me you need to be tested prior to going gluten free. I have a long story about that. I was gluten free for a year and a half and then thought I wasn't Celiac. I never had a test one way or the other. I broke out in DH last month and tested highly positive for Celiac when they did the lab work. Make sure you get it right the first time. You don't ever want to have this rash.  

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 Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms. The tTg IgA antibodies are made in the intestines. While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten...
    2. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Thanks, that's a great addition that I hadn't thought of.
    3. trents
      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    4. trents
      - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    5. trents
      - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,347
    • Most Online (within 30 mins)
      7,748
    Emhope1107
    Newest Member
    Emhope1107
    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
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Fiber Supplement

      By trents · Posted

      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
×
×
  • 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.