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):

Frustrated - Normal Bloodwork

Pisqualie

Recommended Posts

Pisqualie Apprentice
Pisqualie
Posted

Hi all! I am new here. I never suspected a wheat or gluten problem (always thought it was lactose or stress) until I read a book called Wheat Belly. My husband and I switched to a "real food" lifestyle a year ago, but I still felt bad all the time. (Fatigue, bloating which is at times extreme, quick weight gain regardless of diet/exercise when I have otherwise been thin my whole life). Anyway, decided to cut wheat just to see impact on my body - wow, within 3 days I was slimmer, had a solid blood sugar (thought I was hypoglycemic before but dr and blood sugar monitoring said no), etc.

Then... I ate wheat again and boy was I sick!!! Now, for nearly a month, I have been essentially wheat/gluten free, except when I accidentally consume it or when I decide I am not, eat it, and then get sick. Example: today I had a hamburger and ate the bun. I had 5 bites of bun. Within 10-15 minutes, I felt that feeling in my stomach. Then my intestines. Then, 1 hr and 15 mins later, I was doubling over, with a sense of urgency in a pain that makes my heart beat strange and use the restroom.

It has to be the wheat, right??

Anyway, I literally just got off the phone with the nurse - my bloodwork from Wednesday came back totally negative. I don't want Celiac - I am thankful! But... I am frustrated. I mean... what else can it be? I keep testing it out and everything lines up exactly with what you all and others have said about their reactions and responses.

My GI dr wants to do an upper and lower GI .. should I follow through with that?

Thanks so much!!

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

Celiac.com Sponsor (A8-M):


lesliev523 Rookie
lesliev523
Posted

Hi all! I am new here. I never suspected a wheat or gluten problem (always thought it was lactose or stress) until I read a book called Wheat Belly. My husband and I switched to a "real food" lifestyle a year ago, but I still felt bad all the time. (Fatigue, bloating which is at times extreme, quick weight gain regardless of diet/exercise when I have otherwise been thin my whole life). Anyway, decided to cut wheat just to see impact on my body - wow, within 3 days I was slimmer, had a solid blood sugar (thought I was hypoglycemic before but dr and blood sugar monitoring said no), etc.

Then... I ate wheat again and boy was I sick!!! Now, for nearly a month, I have been essentially wheat/gluten free, except when I accidentally consume it or when I decide I am not, eat it, and then get sick. Example: today I had a hamburger and ate the bun. I had 5 bites of bun. Within 10-15 minutes, I felt that feeling in my stomach. Then my intestines. Then, 1 hr and 15 mins later, I was doubling over, with a sense of urgency in a pain that makes my heart beat strange and use the restroom.

It has to be the wheat, right??

Anyway, I literally just got off the phone with the nurse - my bloodwork from Wednesday came back totally negative. I don't want Celiac - I am thankful! But... I am frustrated. I mean... what else can it be? I keep testing it out and everything lines up exactly with what you all and others have said about their reactions and responses.

My GI dr wants to do an upper and lower GI .. should I follow through with that?

Thanks so much!!

You can have non-celiac gluten intolerance. Or if you had not been eating gluten or very much gluten prior to the blood test, you can have a false negative.

Good luck!

raea2002 Apprentice
raea2002
Posted

It depends on if you need a concrete diagnosis or can live without it. I too went through something similar and accidentally found my intolerance to it. I went through all the testing and I found out that I had acid reflux and gastritis. I had no clue. So for me it was worth it. Biopsy's came up negative for celiacs. I'm just gluten intolerant. Do what you feel you need to do. If you feel better off gluten stay off. If your wanting to do further testing you have to be eatting gluten now. Keep us posted.

MitziG Enthusiast
MitziG
Posted

You have your answer I think. You know what makes you feel bad. A blood taste only dx MOST celiacs, not all. And it does not dx people who are gluten intolerant but do not haPpen to mage antibodies against it, who are in the majority. So...it is quite simple. Want to feel good? Don't eat gluten anymore!

Cara in Boston Enthusiast
Cara in Boston
Posted

Were you eating the equiv. of 2 slice of wheat bread a day in the 3-6 months leading up to your blood tests? If not, I would not assume that they are showing you an accurate picture of what is going on. If you don't want to (or can't ) do a proper gluten challenge (eat gluten daily for 3-6 months) I wouldn't bother trying to get re-tested. Sounds like from your experience with the diet you already know you should not be eating gluten.

If you have kids, they should be tested too - while still eating a "regular" diet.

Cara

Archived

This topic is now archived and is closed to further replies.

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

  • Member Statistics

    • Total Members
      134,075
    • Most Online (within 30 mins)
      10,442
    Nan7472
    Newest Member
    Nan7472
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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/
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
×
×
  • Create New...