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

Gluten Free, Feeling Great, Should I Test For Celiac?


runtherace12

Recommended Posts

runtherace12 Newbie

This past year, I have felt constant fatigue, upset stomach, had allergic rinitis constantly, headaches, nauseated, and then about 4 months ago I started getting severe joint pain 30 minutes to an hour after eating. One night, it was so bad, that I could not move without bringing tears to my eyes. Frustrated daily, I noticed it happened consistently after eating, so naturally I figured it must be something I had been eating.

The joint pain came on so suddenly. I have always been lactose intolerant (which has not deterred me from eating milk products, although I do drink soy milk often), but I figured that was my only issue. I dont get the stomach pains like I do from lactose- more like sudden nausea, headaches, dizziness, confusion, joint pain, and my throat feels thick and swollen.

After keeping a food log for 3 weeks, I began to cut out wheat, and then all gluten.

I have been Gluten free for about 3 months now, and I feel so much better. My acne is practically gone, I am no longer tired every second of the day, and I do not have severe joint pain. I have also noticed my hair and my fingernails are actually growing, for the first time in a long time.

Should I get tested for celiac after doing the gluten challenge for a week? Is it worth it to endure feeling terrible for a week or so? Can I just avoid gluten my whole life without knowing if I am a celiac?


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



Celiac.com Sponsor (A8-M):



Darn210 Enthusiast

First of all, you do not need to go through testing if you are perfectly satisfied with your trial gluten free diet resulting in the positive changes that you have experienced.

Second, if you do want to do testing, you will need more than a week's worth of gluten. You will need 2 to 3 months of daily gluten intake in order to have a chance at a positive result. If you only ingest gluten for a week, don't waste your time or money or suffering.

eatmeat4good Enthusiast

I think you just did the most diagnostic test there is for Celiac by eliminating Gluten and feeling better and having your symptoms resolved.

A lot of us don't have the diagnosis from a Dr.

You would have to eat 2 to 3 slices of bread a day for 3 months to have any chance of testing positive and then you could still test negative even though gluten makes you sick and destroys your body for those 3 months.

It wasn't worth it to me. I couldn't fathom 3 more months sick as a dog just so my Dr. could say the word Celiac.

Your results and the symptoms that have resolved say Celiac very strongly...if you believe it that is what counts because that is what will keep you well.

I do understand the struggle and wanting to KNOW. I went through it too, but in the end, trace gluten made me so sick that there was no way I would be able to eat enough gluten to test positive.

After some months of being gluten free and resolving symptoms like yours that had been there for years, I asked my Dr. about testing. He said Why would I have you make yourself sick so that I can tell you what you already know?-that you cannot eat Gluten?

Instead we tested the vitamin levels and found Vitamin D deficiency and then found Hashimoto's.

You might test your vitamin levels to see how they are.

There are many people who do that 3 months of Gluten Torture and come back on here to say they tested negative after all that misery. What do they do? Go gluten free...the same as you and me.

runtherace12 Newbie

Thank you both so much for your advice! I feel much better about continuing to go gluten-free, despite knowing if I have celiac or not. Two or three months of eating 2 or 3 slices of bread a day sounds so miserable.

Sometimes, I feel like I'm making this all up, but then I eat something that I didn't know has gluten, and I feel sick. So I know it cannot all be in my head :)

Best wishes to you all! Thank you again!!

kareng Grand Master

How come if you say " green peppers bother my stomach." no one argues you are making this up or you must eat them? But if you say. " Every time I eat wheat bread, I bloat, get horrible gas, cramps, a headache and diarrhea". People, including doctors, don't believe it's a gluten intolerance? Or real?

Skylark Collaborator

Welcome to the "Why should I make myself sick again to get diagnosed when I already know what's wrong with me?" club. B)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jhona's topic in Introduce Yourself / Share Stuff
      32

      Does anyone here also have Afib

    2. - knitty kitty replied to lehum's topic in Super Sensitive People
      9

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    3. - Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    4. - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    5. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,940
    • Most Online (within 30 mins)
      7,748

    Joyce B
    Newest Member
    Joyce B
    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
      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
    • Scott Adams
      The reaction one gets when they get glutened varies a lot from person to person.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Theresa2407
      A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.
    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
×
×
  • 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.