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
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

  • 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. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    2. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    3. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    4. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    5. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • 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.