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

New Diagnosis Of Celiac Disease, Just Out Of Hosp.


cyndeegreen

Recommended Posts

cyndeegreen Newbie

Hello,

My name is Cindy. I just got out of the hospital on Tuesday. I was diagnosed with Celiac disease after a biopsy revealed why my body was going growing crazy.

I have lost a ton of weight and have been having problems keeping food "in". This after just two months ago I had a partial thyroidectomy due to a neoplasm and thyroiditis.

I'm wondering if there is a relationship between the two problems.

Regardless, I am grateful we've found out about the wheat allergy, and I'm ready to be wheat free.

I'd appreciate any suggestions on food recipes. There is an alarming amount of "flour" choices. I live in a very rural part of Kansas and specialty items need to be ordered on-line. Advice on steering clear of the pitfalls would be very, very welcome.

I was in the hospital for 5 days, but I am still tired and my stomach is still not very happy. It probably didn't help that for breakfast I was given cream of wheat (they though it was cream of rice!) and then the rice crispies were not gluten free....ugh... :o) Live and Learn!!!

Somedays, I wonder (as do my family and friends) if I'm EVER going to feel better.

Thanks for listening, and thank you for your help.

Cindy


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



Celiac.com Sponsor (A8-M):



Guest dlf1021

Cindy,

Congratulations on your diagnosis! Hopefully this will finally be a turning point for you and you will begin to feel better. I can definitely empathize with you on always seeming to feel ill- out of the 18 years of my life, I've been so ill with what the've always called "Irritable Bowel Syndrome" that I can't even remember a time in my life when I wasn't always feeling ill. After numerous doctors, an 8 day stay in the hospital, 4 endoscopies, a colonoscopy, removal of my gallbladder, and another two years of waiting, they FINALLY diagnosed gluten intolerance. After just two weeks on the diet, I already feel as though I've found the part of me that has been missing for the past 13 years.

To address your question...I've found a few sites with recipes, as well as some very good books, and a couple of online stores that may be of help to you...

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Excellent list of Gluten Free items

Open Original Shared Link

Open Original Shared Link

I hope this helps! Good luck!

cyndeegreen Newbie

Deb,

WOW!!! Thank you so much for the links. I'm off to surf on them!

Is it common for celiacs to have to have their gallbladders removed? Mine was removed 2 years ago....

Thank you again for the well wishes and information!

Cindy

gf4life Enthusiast

Hi Cindy,

Yes, it is common for Celiacs to have gallbladder disease and have their gallbladders removed. Soem doctors, if they find the celiac disease before they diagnose gallbladder disease, will wait a while before removing it to see if the gluten-free diet will help the gallbladder fix itself. Unfortunately for most of us, the gallbladder was removed before they found the celiac disease. Mine was removed 4 1/2 years ago, and I found out about Celiac about 2 1/2 years ago, finally diagnosed Nov. 2003 by Enterolab and a biopsy was just done last month. I wonder if I would have been able to keep my gallbladder if they had found the celiac disease earlier, since I have had symptoms for over 25 years...

Hi Deb,

Thanks for the great links. It is the most I've seen in one place for getting food ideas. I have only been gluten free (for good this time!) for 18 days. I am very knowledgable about the disease, but very new to the diet. The links are very helpful.

Mariann :)

Guest dlf1021

Glad the links were helpful...I have no idea what I would do if it weren't for the internet. I never would have gotten diagnosed, that's for certain. I'm not sure how common it is for Celiacs to have their gallbladders removed--now that I've tested positive for gluten intolerance, I can't help but wonder if it didn't have something to do with it. I've only been gluten free for two weeks and even then only truly gluten free for a week or so--it's darn near impossible to stick to this diet unless you do specialty shopping, I tried--but I've already felt an amazing change.

I will continue to peruse and will let you know if I find anything else.

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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

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

      Is this celiac?

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

      Fiber Supplement

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

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,362
    • Most Online (within 30 mins)
      7,748

    Nannynet
    Newest Member
    Nannynet
    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
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • 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.
×
×
  • 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.