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

Not Sure Whether To Continue A gluten-free Diet...


kellysensei

Recommended Posts

kellysensei Apprentice

Hi, I haven't posted in a few months. Long story short, I went gluten-free temporarily last fall in an attempt to get rid of a chronic cough. It seemed to work - although I also did a juice fast and went low-carb for a bit, so I'm not sure what actually helped the cough. I decided I wanted to get tested for Celiac, so I did a two-month gluten challenge. My cough did not return while I was eating gluten. In January, a stool test through EnteroLab came back positive for a gluten sensitivity. In February, my blood tests at my GI doc's office came back negative for Celiac.

 

In mid-February, I decided to go back to a gluten-free diet based on the EnteroLab results and the fact that I'd developed terrible joint pain in my left hand and wrist. That pain went away after three days gluten-free. However, I haven't had any other positive effects from being gluten-free. I still have bad sinus problems and have had two long-lasting sinus infections since going gluten-free. I still have bad headaches several times a month. I still have all sorts of Charley horses, leg pains, and overnight foot cramps that are affecting my energy and mood. And my vision seems to be all out of whack. I just can't find a correct prescription. Oh, and my cough came back, although I can control it somewhat by cutting out sugar.

 

So I'm starting to wonder if I should even bother with being gluten-free. I'm not convinced it's really helping me. What do you guys think? My son's birthday party is in three weeks; I'm debating having a piece of cake and seeing how it affects me...? Good idea or bad?

 

 


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Since the Enterolab stool tests are not diagnostic for "gluten sensitivity" --because there are no valid tests for this condition yet--you still cannot be sure what is going on. (this is not my opinion, ok, it's what the celiac researchers say) 

 

Currently, there are no recommended methods to test for non-celiac gluten sensitivity. Some doctors offer saliva, blood or stool testing. However, these tests have not been validated and are therefore not accepted

Open Original Shared Link

 

If you have been strictly gluten-free--no cross contamination, no glutenings at all--and you still have symptoms, perhaps it is not a gluten issue at all?

 

However, since you dosed for the gluten challenge, it is possible the symptoms are lingering from that.

 

Having your cough and joint pain resolve does seem to indicate that removing gluten helped those symptoms, anyway! :)

 

And the other symptoms can be from things other than gluten, of course.

 

Anyone I know who went G F for health reasons did not see much improvement until 6 months or so.

 

You can hang in there a bit longer and see what happens.

radley Apprentice

Except for anxiety and depression everything else either didn't improve or got worse for me after going gluten-free. I'm now gluten-free for about 8 months and thinking about quitting it as I still have wheat cravings even after all those gluten-free months.

IrishHeart Veteran

Except for anxiety and depression everything else either didn't improve or got worse for me after going gluten-free. I'm now gluten-free for about 8 months and thinking about quitting it as I still have wheat cravings even after all those gluten-free months.

 

If you have celiac, you can't resume gluten.

 

And to be rid of anxiety and depression is huge! why would you want those back in your life?

 

What got worse--bowel issues? well, maybe you have other food intolerances in addition to gluten? maybe you have another gastro problem. Go see a GI doctor.

kellysensei Apprentice

I just found out that the multi-vitamin I've been taking for a month has wheat grass and maltodextrin in it. I thought I was so good at reading labels, but somehow I missed that one. So angry.  Three months of buying gluten-free bread and eating only grilled chicken at restaurants down the drain. :-(

kareng Grand Master

I just found out that the multi-vitamin I've been taking for a month has wheat grass and maltodextrin in it. I thought I was so good at reading labels, but somehow I missed that one. So angry.  Three months of buying gluten-free bread and eating only grilled chicken at restaurants down the drain. :-(

IF you have been eating at restauruants often, you have probably been getting a little gluten, too.

IrishHeart Veteran

I just found out that the multi-vitamin I've been taking for a month has wheat grass and maltodextrin in it. I thought I was so good at reading labels, but somehow I missed that one. So angry.  Three months of buying gluten-free bread and eating only grilled chicken at restaurants down the drain. :-(

 

 

But, maltodextrin is gluten free and the small amount of wheat grass in a multi is not going to cause much of a problem.

 

"Pure wheat grass and barley grass (just the grass, with absolutely no seeds) do not contain gluten.

In fact, the U.S. Food and Drug Administration, in its finalized Open Original Shared Link, has said that wheat grass and barley grass could be used to make foods labeled gluten-free, as long as the finished products contain Open Original Shared Link."

 

So, I doubt that's your problem.


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



Celiac.com Sponsor (A8-M):



BlessedMommy Rising Star

Wheat grass does not necessarily always contain gluten. Open Original Shared Link

 

Nor does maltodextrin always contain gluten either. Open Original Shared Link

 

These are iffy ingredients that may or may not be safe.

 

Have you contacted the manufacturer of the product to find out the status of it? 

kellysensei Apprentice

I just contacted the vitamin manufacturer now. We'll see if they respond. 

 

I still don't know what to think about gluten. My cough was totally fine during my whole gluten challenge this winter, and I wasn't having nearly as many knee pains and leg cramps as I am now. So either I'm consuming more gluten than I think, or gluten is not my problem. I just think it's impossible to be totally gluten-free in a house with two kids (who play with Play-Doh all the time)  and a husband who are NOT gluten-free. I'm trying my best, but I'm bound to have an accident or get cross-contamination once in a while. Still pondering having cake at my son's party to see what happens...

BlessedMommy Rising Star

You could get the kids gluten free play dough.  :)

 

Open Original Shared Link

kellysensei Apprentice

This was the company's response:

 

"From the guidelines set by the Food & Drug Administration and the World Health Organization, the Alive product line, with the exceptions of  Alive! Once Daily Men’s , Alive! Once Daily Men’s 50+, Alive! Ultra-Shake Pea Protein Chocolate, Alive! Ultra-Shake Soy Protein Chocolate as these formulas contain oat bran , are gluten free (<20 ppm). Alive! Women's Energy is <20 ppm which can be considered gluten free.

 

However, the Garden Veggies Blend in the Alive! contains wheat grass. While gluten content would be low since it is the grass and not the germ, we would recommend that individuals who are concerned about celiac disease and/or other gastrointestinal issues avoid taking the product unless otherwise specified by a healthcare practitioner."

 

So - their product doesn't contain gluten, but don't take it if you're gluten sensitive. LOL

 

I think I'm going to go to a functional medicine doctor to check for nutritional deficiencies and hormone imbalances. I'm tired of feeling like crap even on a gluten-free diet. I'm also going to start taking probiotics and fish oil capsules. I should probably find a multi-vitamin, too, that agrees with me. (Most multivitamins give me headaches or make me nauseated.)

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. - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

    2. - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

    3. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    4. - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    5. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,919
    • Most Online (within 30 mins)
      7,748

    SB Willow
    Newest Member
    SB Willow
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • tiffanygosci
      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • 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.