Jump to content

  • 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):

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

runtherace12

Recommended Posts

runtherace12 Newbie
runtherace12
Posted

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
Darn210
Posted

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
eatmeat4good
Posted

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
runtherace12
Posted
  • Author

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
kareng
Posted

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
Skylark
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442
    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...