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

Im Newbie And A Oldy


Stubborn red head

Recommended Posts

Stubborn red head Apprentice

My mother diagnosed me and herself ten years ago. I didn't believe it. I had been sick for so long, and didn't know what to believe anymore. I was 16 years old but I was exhausted of doctors and tests and being poked and prodded.

As far as I know I am not celiac, I am Intolerant to the Gluten grain. I can have it but at times I am unable to process, over the years I have found that my system does better with small amounts of complex carbs (bread, pasta etc..) Here lately I have been having really bad stomach issues. So I have now been on the diet for two weeks and I am feeling better physically, mentally my whole system is better, My temper is calmed down, my head is more clear. It has made such a difference to my body in the last week.

I know that I am gonna have to stay on this diet for a while but I am having issues following the diet, helping my husband understand why I am doing this, figuring out what is safe and not safe.

Do I got 100% gluten free or do I just avoid the complex carbs like breads, pastas, cakes, cookies, anything that has wheat flour in it.


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

Welcome!

The effects you are describing are consistent with celiac disease. It has many symptoms, which vary from individual case to case. Have you actually been tested for celiac disease? Your mother "diagnosed" you--how?

If indeed you do have celiac disease, you must completely avoid wheat, rye and barley. You will not heal and recover on "gluten light."

You will find help and support here. At first, it seems overwhelming, but it is not. There are so many things that you CAN eat safely. Focus on them.

Fresh from the butcher meats; plain fruits and vegetables; eggs; many foods by Kraft, ConAgra, General Mills and Unilever (they will clearly disclose gluten grains in their ingredient lists).

Come here with your questions. Someone here will know the answer.

IrishHeart Veteran

Peter has given you the best advice and I agree totally.

You can check out my thread "Newbie Info 101" in the coping section for some tips on avoiding gluten, etc.including safe foods, cross contamination issues, etc.

See if anything there helps? :)

Best wishes and welcome!

Stubborn red head Apprentice

I found out today that I really need to be fully Gluten free I had a wonder teriyaki tilapia dish that was wonderful. But within 10 minutes I felt like I had to go to the bath room and now, with no end in site for two hours. My Stomach was in real bad shape.

My mother Decided that I had Celiac was 16 by taking my health history, and all of my symptoms, talked to the team of doctors that was over seeing my care in the hospital about the possibility it could be celiac (she found it online). They said that there was a real possibility that I am. They did a few tests all coming back negative. They informed us that this was the first real lead to what was causing me to be as sick as I was.

** Back history Kidney failure, Gallbladder removed at 15 and on 3 different antacids to help with Acid Reflux and a brain deformity, week tendons, and joints, just to skim the surface.

Even with the test being negative the doctors said that it was a good idea to put her and I on the diet to see if it improved our health. I got better but I didn't quite get it and rebelled against it for years. She has been gluten-free for 10 years and at the peak of health.

mushroom Proficient

Sounds like if you want to feel better you are going to have to be a stubbornly gluten-free redhead :) Drink plenty of water and I hope you feel better soon.

Archived

This topic is now archived and is closed to further replies.

  • 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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,355
    • Most Online (within 30 mins)
      7,748

    tealangel09
    Newest Member
    tealangel09
    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

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @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
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      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
      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.
×
×
  • 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.