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

Anyone?


tuffnikki

Recommended Posts

tuffnikki Newbie

Hi! I'm new here. I've been having lots of problems and suspecting celiac for a while now.

When I tell people my symptoms they look at me strangely.

I was wondering if any of you could relate?

sometimes when i eat certain foods, my stomach will bloat up and ache and it will go through my back and sometimes up my back a little bit. I get really nausiated and sometimes it makes me throw up. The only thing that i have found that will help it is sometimes a heating pad. I've went to the ER once because i was hurting and i wanted to know what was wrong...they didn't do any testing just told me it was a stomach flu. But it happens frequently sometimes happening in "season" so to speak.

I'm not sure if this is related but my immune system is awful. I get everything that comes around and have a hard time gaining weight. I'm only 23 and weigh 89 pounds. I eat all the time just can't gain weight. Does this sound familiar to anyone?

Thanks for the help!


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



Celiac.com Sponsor (A8-M):



GeoffCJ Enthusiast
Hi! I'm new here. I've been having lots of problems and suspecting celiac for a while now.

When I tell people my symptoms they look at me strangely.

I was wondering if any of you could relate?

sometimes when i eat certain foods, my stomach will bloat up and ache and it will go through my back and sometimes up my back a little bit. I get really nausiated and sometimes it makes me throw up. The only thing that i have found that will help it is sometimes a heating pad. I've went to the ER once because i was hurting and i wanted to know what was wrong...they didn't do any testing just told me it was a stomach flu. But it happens frequently sometimes happening in "season" so to speak.

I'm not sure if this is related but my immune system is awful. I get everything that comes around and have a hard time gaining weight. I'm only 23 and weigh 89 pounds. I eat all the time just can't gain weight. Does this sound familiar to anyone?

Thanks for the help!

Sounds like it could be a suspect. I went through a lot of testing to try and figure things out, but you can very simply try a gluten free diet for a few weeks. If you feel better, then you know you are on the right track. Some people stop there. I personally wanted to know as precisely as I could what was wrong with me, so I did blood testing, and endoscopy, and Enterolab testing. Expensive and a pain, but I appreciated, after years of false diagnosis, a diagnosis that I felt relatively certain would be accurate.

Good luck!

Geoff

lonewolf Collaborator

Welcome!

You certainly sound like you could have a problem with gluten. Ask your doctor to run the Celiac Panel (blood test) for you. Make sure he runs the whole panel - all 5 tests. Hopefully someone will come on here and tell you the exact names of all 5 tests, I'm not sure I'd get it right. Anyway, I'd start with that. After the test, you can either wait to get a biopsy or just try the gluten free diet. Some people need a firm diagnosis, while others are convinced by positive results from the diet. There's always the chance that you could have gluten intolerance without Celiac Disease, which still requires a gluten-free diet, but won't show positive in any traditional test.

jerseyangel Proficient

Here are the tests in the Celiac Panel--

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Just make sure not to cut down on gluten before the test, if you decide to have it. You need to be eating gluten--if not you will skew the results :)

Best of luck to you.

CMCM Rising Star

Here are the necessary blood tests...I copied this from Danna Korn's www.glutenfreedom.net site.

Blood: The blood test for celiac disease is looking for the following :

AGA (antigliadin) IgA

AGA (antigliadin) IgG

EMA (antiendomysial)

tTG (anti-tissue transglutaminase)

Total serum IgA

Genetics testing - DQ2, DQ8

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
      132,361
    • Most Online (within 30 mins)
      7,748

    BarryZ
    Newest Member
    BarryZ
    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.