Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Pre-Biopsy, Desparate for some suggestions


Abby77

Recommended Posts

Abby77 Newbie

Hey Everyone,

Long story short, I have struggled with stomach issues my whole life, finally two weeks ago I went to the GI specialist. He was certain I had IBS, but wanted to do blood work for Celiac because symptoms are the same. So he did a series of tests and these were my results:

Tissue Transglutaminase IgA <1.3 (Normal is 0.0-4.0)

Tissue Transglutaminase IgG 10.6 (Normal is 0.0-6.0)

Immunoglobulin A 178 (Normal is 85-370)

Because the IgG was positive my doctor recommended that I get a biopsy so that he can rule out or diagnose Celiac. Here's my issue: up until this test for about 5-6 weeks I had been doing a ketogenic diet (High Fat, moderate protein, low carb) So I had been consuming very small, if any gluten. With a ketogenic diet you eat under 20 grams of carbs a day and most should be from vegetables. It wasn't until I was doing some research that I realized that false negatives happen if you aren't eating gluten, so I was extremely surprised that I had even tested positive. Anyways, I emailed my doctor asking if I should not cut out gluten and he said it is important to keep gluten in the diet until biopsy, so I have been... but you guys... I am struggling SO bad. I have severe stomach pains, I have a bowel movement less than an hour after I eat, I am tired all the time, this is horrible!

I am hoping that someone has been through this or something similar, because I am feeling so defeated right now. My biopsy is in one month, and thinking about having to feel this way for another month makes me want to cry. My question for you guys: How much gluten should I be eating? Is there any way I can eat things that have gluten in it and not feel as bad? Do you have example meals/food that has gluten in it that seemed to sit better than others? Any and all suggestions, ideas, experiences are welcomed. I am so happy that I might soon have an answer to my life long struggle with digestive issues but I'm feeling so alone in the process as no one I know has celiac or really knows anything about it.

 

 


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



Celiac.com Sponsor (A8-M):



tessa25 Rising Star

I believe you just have to have one slice of bread per day.

 

ravenwoodglass Mentor

Sorry you are having to go through this challenge. Pepto Bismal liquid could help with the stomach pain. Be aware that it can make your stool black so if that happens don't worry.  Prediagnosis I used Immodium.  If you need to eat away from home you could try taking a tablet a half hour before you eat. If you are at home it might be best to just let the D happen as it is your bodies way of clearing out something it doesn't want in it.  Some find it helpful to eat their daily dose of gluten before bed. that might help a bit. You are likely not absorbing nutrients well so a Stress B-Complex may help a bit with energy.

It will be over soon and you can go gluten free as soon as you have the biopsy done since you have already had the panel done. While you wait be sure to go to the Coping section and read the Newbie 101 thread. There is more to being gluten free than just gluten free food and it will help you learn what you need to keep safe.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,243
    • Most Online (within 30 mins)
      7,748

    Nicky2925NZ
    Newest Member
    Nicky2925NZ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Pablohoyasaxa
      Great  post. The skin issue can be intolerable. I have been taking niacinamide for the past month and have improved with respect to the blistering lesions. 
    • knitty kitty
      I've found taking Niacin Vitamin B 3 in the form that causes flushing (nicotinic acid) helps immensely to clear my skin.  The flushing is harmless and goes away the longer Niacin is taken.  The flushing (vasodilation in the skin) helps the body get rid of the tTg 3 IgA antibodies that cause the blisters.  TTg 2 IgA antibodies are found in the blood and are measured in diagnostic testing for Celiac.  People with Dermatitis Herpetiformis make tTg 3 as well as tTg 2 antibodies.  Niacin Vitamin B3 in the non flushing form niacinamide also works without the flushing, but takes a bit longer.   I also avoid foods containing high levels of iodine because iodine activates the tTg 3 IgA antibodies to...
    • meghanf
      We have a gluten-free household. It's the least stressful option. No one else in my family has Celiac, but they are all extremely supportive. We don't even have Play-doh for this kids.
    • trents
      @Ronnie d, there is a small percentage of celiacs who have dermatitis herpetiformis but have no small bowel mucosal involvement. Also, we have had some reports on this forum from dermatitis herpetiformis suffers who said Dapsone did not work for them. But for the vast majority it does.
    • Ronnie d
      yes, the above is true. however; if the doctor does the tests and finds your are a candidate then dapsone is the drug that will stop the blisters immediately. dapsone started as a drug for malaria and leprosy....I do not know how it became known for dermatitis herpetiformis. I can tell you that my doctor told me she had several patients that have taken it over 20 years. our dosage was one a day until clear,then we went to every other day for a while, working down to zero a day. I still have an active prescription for dapsone but have not had to take one in several years. in closing, if anyone reads this and has truly been diagnosed for dermatitis herpetiform is, then ask your doctor for...
×
×
  • Create New...