Frustrated - Normal Bloodwork

[Pisqualie]

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!!

[lesliev523]

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]

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]

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]

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