Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,134
    • Most Online (within 30 mins)
      7,748

    Kayla Conklin
    Newest Member
    Kayla Conklin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ryangf
      @Wheatwacked Unfortunately I haven’t been able to intake a sufficient amount of iodine through means of salt because most big name brand iodine salts contain dextrose which is a corn derivative…I have only been able to use kosher salt.
    • Jo Woodard
      I have been gluten free for 25 years, but had recent skin issues taking over my body (biopsy said it was "psoriasis-like"). I thought I was eating gluten free, but my blood tests came back positive for consumption of gluten.  I examined everything and then my doctor identified the source as "gluten free" oats (even if organic).  She said that there is no way to avoid cross contamination. So now I am really gluten free since cutting out oats.  My skin is cleared up and my blood work is clean.
    • Skg414228
      Oh sorry see I know nothing lol. Yes my doctor informed me to eat gluten up until the biopsy so squared away there. All of my questions here are just to get me in the right head space. I have put the actual values from the test.  Deamidated Gliadin Peptide IgA Antibody, Quantitative Normal range: 0.0 - 14.9 U/mL - Value 688 Deamidated Gliadin Peptide IgA Antibody, Qualitative Normal value: Negative - Value: Positive (Abnormal) Tissue Transglutaminase IgA Antibody, Quantitative Normal range: 0.0 - 14.9 U/mL - Value: <0.5 Tissue Transglutaminase IgA Antibody, Qualitative Normal value: Negative - Value: Negative Deamidated Gliadin Peptide IgG Antibody, Quantitative Normal range: 0.0 - 14.9 U/mL - Value: 0.4 Deamidated Gliadin Peptide IgG Antibody, Qualitative Normal value: Negative - Value: Negative Tissue Transglutaminase IgG Antibody, Quantitative Normal range: 0.0 - 14.9 U/mL - Value: <0.8 Tissue Transglutaminase IgG Antibody, Qualitative Normal value: Negative - Value: Negative IgA Quantitative Normal range: 68 - 378 mg/dL - Value: 271
    • trents
      Welcome to the forum, @Skg414228! You say that your DGP-IGA score is high and you give the absolute test score but you do not give the scale or units used by the lab doing the analysis so we cannot comment further on your conclusion. Different labs use different reference ranges for the same tests. There is no industry standard for these celiac antibody tests. So, could you also post back with the scale and the units? If you already have an endoscopy/biopsy scheduled, the important thing is to hold off on going gluten free until that is done. There are some things besides celiac disease that can cause elevated celiac disease antibody levels so it is still possible you may be looking at something else. This is especially true when you are not IGA deficient and the tTG-IGA is within normal range. But you are correct in saying that very high antibody scores strongly weight the probability in favor of celiac disease. Keep us posted. By the way, kudos to your physician for ordering a more complete antibody panel. Many will only order the tTG-IGA.
    • Skg414228
      I went to the gastroenterologist for what I thought was IBS. They thought it sounded like celiac. I got a blood test with normal everything except a deamidated gliadine peptide iga of 688. Total iga was in normal range so not deficient.    My question is with a dgp iga like that is it pretty much only celiac at that point. I haven’t seen anything else that would cause the dgp iga to be that high. Already have the biopsy scheduled so nothing is going to change I’m just curious what else it could be and is the number high enough that I should really be preparing expecting a positive biopsy and it’s just a confirmation at this point? 
×
×
  • Create New...