Blood Tests Normal?

[Desy]

Ok. I am seriously confused. I had three blood tests done for celiac disease/gluten allergy. The results were all negative, meaning they were normal. I was told that I do not have celiac disease.

Has anyone ever heard of the tests being normal despite the patient truly having celiac disease/gluten allergy???? I have been so sick for YEARS; I have many, many symptoms of celiac disease/gluten allergy and I am extremely frustrated. I don't know how to regain my health. I'm ready to give up completely.

For the record, my symptoms (off the top of my head) are:

acne

broken-out scalp (d.h.)?

chronic idiopathic urticaria (not currently, in past)

extreme fatigue

constantly tired

depression

bloating

gas

constipation

night time vision problems

irritability

cloudy thinking

problems concentrating

sleeping problems/insomnia

PMS

major weight gain

was diagnosed as lactose intolerant at age 10

diarrhea

memory problems

tingling in hands & feet

muscle twitching

.........that's all I can remember at the moment.

[ravenwoodglass]

I could have written your post 7 years ago. Many doctors don't realize that the celiac panel has a high rate of false negatives. I was tested over and over but because the tests were negative they never even told me what the test was for or suggested the diet.

Have you done a trial of the diet? That may give you your answer as to whether or not you need to gluten free. If you are going to pursue more testing like a biopsy to look for villi damage do not go gluten free until that testing is done.

[no-more-muffins]

Both my blood and biopsies were normal. I am convinced that I have gluten intolerance though. I had many of the symptoms you have. I have been gluten-free for almost 3 weeks and some of my symptoms have gone away. If I were you I'd try the diet. Perhaps you would be interested in the testing that is done at www.enterolab.com. They don't test for celiac but they do test for gluten sensitivity (stool tests).

Here's an interesting article about non-celiac gluten sensitivity.

https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html

[jenrn]

My blood tests and biopsy were also negative. I decided to do the genetic testing which showed I carry a double copy of the DQ2 gene that predisposes to celiac. When I got that result back I decided to try the gluten free diet and the difference it made was amazing. So I will never know for sure if I have celiac or a non-celiac gluten intolerance but I won't go back to eating gluten ever. Luckily my gastroenterologist is very accepting of the fact that I need to be gluten free even though I tested negative on the traditional tests for celiac.

Jen

[Korwyn]

Ok. I am seriously confused. I had three blood tests done for celiac disease/gluten allergy. The results were all negative, meaning they were normal. I was told that I do not have celiac disease.

Has anyone ever heard of the tests being normal despite the patient truly having celiac disease/gluten allergy???? I have been so sick for YEARS; I have many, many symptoms of celiac disease/gluten allergy and I am extremely frustrated. I don't know how to regain my health. I'm ready to give up completely.

Yes. My blood work came back negative, however my Dr. accepted my Enterolab results + response to a gluten-free diet as a positive celiac diagnosis. My dad's first blood work and biopsy came back negative, however his second blood work came back positive for anti-gliadin, and borderline for tTG. Also a stasically high percentage of Celiac patients (compared to the general population) may suffer from IgA deficiency. If you did not have a total serum IgA test done, your tests may be false negative simply due to that alone. My physician told me that she has never had a positive blood test come back, even from people later diagnosed through biopsy with Celiac disease.

My symptoms and what things have been identified - for my personal health - as triggering them or making them worse are below. 'n.d.' means a nutritional deficiency (related to gluten intolerance, celiac, and leaky gut) has been identified through clinical research which cause cause or exacerbate this symptom, and is one that has been identified as being part of my problems. Just because I don't have an 'n.d.' next to it doesn't mean it isn't caused by a nutrient deficiency, just that we haven't specifically tied it to that for me personally.

extreme fatigue - gluten, casein, soy, n.d.

constantly tired - gluten, casein, soy, n.d.

severe depression - gluten, soy

insomnia - soy, gluten, casein, n.d.

anxiety - gluten, soy

panic attacks - soy, gluten

severe heart attack like chest pain. (I suffered from classic heart attack symptoms repeatedly, but all my tests were fine). gluten

bloating gluten, casein, soy

gas - casein, gluten, soy

night time vision problems - n.d.

irritability - gluten, soy, n.d.

cloudy thinking - gluten, soy, n.d.

problems concentrating - gluten, soy, n.d.

sleeping problems/insomnia - soy, casein, n.d.

weight gain - everything.

diarrhea - everything

memory problems - gluten, soy, n.d.

tingling in hands & feet - gluten, soy, n.d.

muscle twitching - gluten, soy, n.d. (sodium).

[Desy]

Thanks to everyone who replied. I read your posts and they brought me some hope and relief. I do appreciate the links, as well.

I don't remember who asked, but yes, I did try the gluten-free diet for five days.....then my naturopath told me to eat gluten for the next week in order to prepare for the blood tests. On the gluten-free diet, I did feel better. My energy was a little better and my sinuses were clear -- first time in I don't even remember.

I'm going to go gluten free again (for good) this time, starting tomorrow. Thanks again for your support.

Here are additional symptoms that I had forgotten about:

anemia

wheezing

bad allergies

stuffed-up nose & sinuses

sneezing

runny nose

dark circles under eyes

sore throat

asthma

anxiety

....there are a couple more, but I cannot remember at the moment......(foggy brain from the gluten).