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

Neg. Test But Dr. Says Try Gluten Free Diet

rose-thorn98

Recommended Posts

rose-thorn98 Rookie
rose-thorn98
Posted

I've been having horrible chest pain and acid reflux symptoms. None of the acid reflux drugs work, heart is okay, so GI tested me for Celiac. Full panel test. He says test is negative but that I may still have gluten intolerence. So I started gluten-free diet today. He said try for one week and see if I improve. How long does it take being off gluten until I feel better?( if I'm intolerant of course.)

I feel so frustrated. I was diagnosed with GERD a few years ago and back then none of the GERD meds worked. Has anyone ever had chest pain and difficulty eating as Celiac symptom?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I am glad your doctor said to give the diet a try. I wish mine had done that it would have saved me years of misery. Mine just went by the blood tests so it took a long time since I don't show up in bloodwork.

Do give it more than a week though. It also would be a good idea to drop dairy until you are feeling better.

Welcome to the board and ask any questions you need to and read as much as you can.

txplowgirl Enthusiast
txplowgirl
Posted

Hi Rose, For years I have had chest pains as well as a LOT of other symptoms. I went gluten free in July. It took about 3 weeks to finally start feeling better. I will never go back to gluten .

On New Year's Day, we took my mother out to eat. Big mistake, It was either cross contamination or I got glutened somehow, and I was being extremely careful. Anyway, the next morning I woke up with up feeling really tired and foggy headed, which eventually turned into what felt like to me a massive heart attack. Chest pain, couldn't catch my breath, shoulders and back hurt. I finally got to the point I wound up going to the ER. They ran tests after tests. My heart was fine, my blood pressure was fine, my blood sugar was ok, gallbladder was ok, they even did a lung scan to see if I might have a blood clot. That was ok. When I told the Dr. about my gluten free status he nodded his head and said that this can be a reaction to gluten sometimes. He wound up giving me an IV with Pepsid and 4 tablespoons of Mylanta and sent me home. After about 4 hours I was ok. The next morning I woke up with a sore chest like someone had hit me and very fatigued but other than that I was fine.

I would give gluten free a try for at least a month. See if you feel any better. Good luck.

rose-thorn98 Rookie
rose-thorn98
Posted
  • Author

Hi Rose, For years I have had chest pains as well as a LOT of other symptoms. I went gluten free in July. It took about 3 weeks to finally start feeling better. I will never go back to gluten .

On New Year's Day, we took my mother out to eat. Big mistake, It was either cross contamination or I got glutened somehow, and I was being extremely careful. Anyway, the next morning I woke up with up feeling really tired and foggy headed, which eventually turned into what felt like to me a massive heart attack. Chest pain, couldn't catch my breath, shoulders and back hurt. I finally got to the point I wound up going to the ER. They ran tests after tests. My heart was fine, my blood pressure was fine, my blood sugar was ok, gallbladder was ok, they even did a lung scan to see if I might have a blood clot. That was ok. When I told the Dr. about my gluten free status he nodded his head and said that this can be a reaction to gluten sometimes. He wound up giving me an IV with Pepsid and 4 tablespoons of Mylanta and sent me home. After about 4 hours I was ok. The next morning I woke up with a sore chest like someone had hit me and very fatigued but other than that I was fine.

I would give gluten free a try for at least a month. See if you feel any better. Good luck.

Thank you both for your replies. I have been gluten free now for 3 1/2 days and I am feeling much better. For years I've had horrible fatigue and bloating after eating. Now that I'm not eating gluten I do not have those feelings after eating. I'm amazed that I can eat gluten free pasta and not feel like I need to go lay down after eating it, like I did with regular pasta. For years I was thinking I had chronic fatigue or fibromyalgia, but now I think that maybe it was the gluten. My plan is to stay gluten free for a month and then to test it and see what happens. Thanks for all the advise and support. Its good to know that others had symptoms like me.

Mskedi Newbie
Mskedi
Posted

Like you, my GI symptoms disappeared very quickly after going gluten-free (not having a gut-ache after gluten-free meals was the first, immediate benefit). After a month I found things that I didn't even realize were wrong were clearing up (it's amazing what we can convince ourselves is "normal"). I'm glad you're feeling better and I hope that keeps up. :)

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. Wheatwacked
      - Wheatwacked replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive. The endoscopy and biopsy is looking for damage to your small intestine. I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy...
    2. Scott Adams
      0

      Gluten-Free Diet Burnout: Why It Happens and How to Get Your Motivation Back (+Video)

    3. Midwesteaglesfan
      - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

      At 41 years old I have been fighting fatigue and joint pain for a couple months. My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right. Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist. He was extremely thorough and sat with me and m...
    4. marlene333
      - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    5. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,267
    • Most Online (within 30 mins)
      7,748
    Kristine Ryder
    Newest Member
    Kristine Ryder
    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

    • Wheatwacked
      Going for upper endoscopy today

      By Wheatwacked · Posted

      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      Going for upper endoscopy today

      By Midwesteaglesfan · Posted

      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      Bee balm lipbalm not gluten free

      By marlene333 · Posted

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
×
×
  • 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.